Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 Great news, Deborah! Meryl -- Meryl Nass, M.D. Parkview Hospital, Brunswick, Maine 04011 email mnass@... phone (207) 865-0875 fax (207) 865-6975 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 My son Lucas is 3.5 years and 50 lbs. He has expressive/receptive languauge disorder along with articaulation disorder. What is the fish oil dosage that I should be giving him? Does anyone have any success stories with this type of disorder?? He does not understand some language and will not answer most questions (mainly because I think he does not understand me at times) He tries to talk and I can understand 50 percent of it but he does not make more than 5 word sentences. I am scared!!! I need some hope. Thnaks everyone!!! I appreciate this group. Jill - WI __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 Hi Jill- I gave my daughter 4 capsules (2 morning, 2 evening) of omega brite fish oil until her language issues were resolved, and now I give her 2/day for maintenance. She had apraxia, receptive/expressive delay and PDD-NOS when we started. We also used l-carnosine and methyl B12 shots, which helped her language significantly. The Dan approach is worth investigating. My daughter is completely typical in all areas of development now (she was diagnosed at 2 yr, 0 mo and is about to turn 4). > > My son Lucas is 3.5 years and 50 lbs. He has expressive/receptive languauge disorder along with articaulation disorder. What is the fish oil dosage that I should be giving him? > Does anyone have any success stories with this type of disorder?? He does not understand some language and will not answer most questions (mainly because I think he does not understand me at times) He tries to talk and I can understand 50 percent of it but he does not make more than 5 word sentences. I am scared!!! I need some hope. > Thnaks everyone!!! I appreciate this group. > Jill - WI > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 what are I-carnosine and B12 shots??? maryebe <eberlein@...> wrote: Hi Jill- I gave my daughter 4 capsules (2 morning, 2 evening) of omega brite fish oil until her language issues were resolved, and now I give her 2/day for maintenance. She had apraxia, receptive/expressive delay and PDD-NOS when we started. We also used l-carnosine and methyl B12 shots, which helped her language significantly. The Dan approach is worth investigating. My daughter is completely typical in all areas of development now (she was diagnosed at 2 yr, 0 mo and is about to turn 4). > > My son Lucas is 3.5 years and 50 lbs. He has expressive/receptive languauge disorder along with articaulation disorder. What is the fish oil dosage that I should be giving him? > Does anyone have any success stories with this type of disorder?? He does not understand some language and will not answer most questions (mainly because I think he does not understand me at times) He tries to talk and I can understand 50 percent of it but he does not make more than 5 word sentences. I am scared!!! I need some hope. > Thnaks everyone!!! I appreciate this group. > Jill - WI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 l-carnosine is an amino acid supplement. There is more info at carnaware.com. A doctor (mostly likely an osteopath or Dan doctor) can prescribe methyl B12 injections. We get our B12 pre-filled syringes from Hopewell Pharmacy in NJ. Dr. Neubrander has a protocol for dosing and administering b12 injections - that is what we use. > > > > My son Lucas is 3.5 years and 50 lbs. He has expressive/receptive > languauge disorder along with articaulation disorder. What is the > fish oil dosage that I should be giving him? > > Does anyone have any success stories with this type of disorder?? > He does not understand some language and will not answer most > questions (mainly because I think he does not understand me at times) > He tries to talk and I can understand 50 percent of it but he does > not make more than 5 word sentences. I am scared!!! I need some hope. > > Thnaks everyone!!! I appreciate this group. > > Jill - WI > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 Hi Barbara, Your situation breaks my heart. We had something very similar with my son when he was 13. We actually went to the Immune Deficiency conference in St. Louis and it was very embarrassing (for me). My son was very sullen about treatment and I just let him talk to people about it. He did not consider himself lucky to have a solution or to be able to do Sub q. He hated it, hated CVID, and felt that being sick was preferable to good health with treatment. Over a year ago, we moved and a new doctor took him off SCIG for a few months to re-test him. My son has since refused to restart treatment. Since the doctor (an idiot, but that's another story) decided he did not have CVID, we have left it alone. I don't know what to tell you, other than I sympathize. My kid is almost 15 years old, more than 6 feet tall and 200 pounds. The days of holding him down and bribery are over. He is home schooled, our move was cross country and involved a complete change of climate, and he has been amazingly healthy (for the first time ever) since stopping IVIG. So we've been lucky in that regard. I'll throw in my two cents, as a mother whose been there. I don't think that you can do this without your son's cooperation. My son hated it. Unlike your son, mine has no emotional issues. Yet with the trauma of a move and other life events, we were giving him tranquilizers to make it through treatments. I'm sure having needles stuck in your stomach is awful. I discussed this a lot with people when we were at the Immune Deficiency Conference. There were people there who stopped treatment as teenagers, and then restarted as adults when they realized they needed it. My kids and I also have celiac disease (no gluten), and I've run celiac support groups. When kids become teens, it's the age when they start cheating on diets because they want to be like their friends. It's part of the age group. Mothers go nuts. But there's really nothing that they can do. You can't follow a 16 year old to school and keep her from eating pizza at lunch, even if it means that it makes them sick. I think it's the same with SCIG. We can only offer. It's up to our child, hard as it is. I wish I could be more help. My heart goes out to you. Sue in NY On Sat, Jan 3, 2009 at 10:12 PM, Barbara Jimenez <mother5590@...>wrote: > I brought up the subject of my son Lucas who is now 13 refusing his > treatments. ( SUB Q). He is Bipolar, ADD, Oppositional Defiant and Sensory > Integration Issues and has other mental health issues but is very smart and > I find very sensitive to understanding most things in life. We have been > having a problem since we took him off for 3 months to test over 2 years > ago. He has fought me ever since because he says he does not need it > anymore. I have spoken with his Immunologist and she showed him his results > and he still says they are wrong and he is not going to do it. We agreed for > awhile that we could do it at night and give him a bit more of his sleep med > and then that became a problem because he began to refuse again. He refuses > EMLA or any of the sprays or lidocaine patches and pitches a huge fit and > cries and overwhelms himself and everyone else and has even become violent > over it or sobs and or sobs and sobs about it. He bargains with me, lies and > refuses some more. His Immunologist told me that this was a situation that > there were NO choices until he was 18 and that I had to take him to the ER > if he refused . So we did that a month ago and we ended up there for 4 days > and nothing came of it. No one even talked to him about it. The doctor told > him that she was going to call security and hold him down if he refused so > he let me. ( That was really helpful to fix the problem long term LOL) Most > weeks I bribe, barter or threaten him to get it done. Sometimes it works and > sometimes it does not and we are days late and it is a nightmare. > So finally today I am hearing something new from him. I am not sure how > much is manipulation and how much is truth but basically he says that he > does not want me to do it because he thinks it is like a punishment and it > makes him hate me because he cannot separate that he thinks I might do it to > hurt him from how much I love it. It just breaks my heart. So I am wondering > if others have had this conversation with there kids. What kinds of > emotional outcomes are out there with us sticking our kids every week. I do > not have the answers to this today but I have told him that I will not do > this anymore that I am going to find another way (possibly going to the > Immunologists office weekly and letting them stick him and then we can leave > or have a home nurse ( but he says he does not want to have to think about > it at home so does not want that). He says he wants to be safe at home and > that it does not make him feel safe to let people poke him at home. This is > all surprising to me since I am an RN in Pediatrics AND I have always given > him all kinds of choices around his infusions ( he has been on them for over > 10 years now. IVIG for the first 7 years.) The night time sticks were his > choice and did work for awhile but I stopped when he refused because I will > not poke him in his sleep if he is refusing. So does anyone have any > thoughts. We have tried relaxation, therapy ( which is ongoing) and just > talking to him about it but it is only getting worse and I feel so > overwhelmed each week knowing that we are going to have to do it again. ( I > also asked him if he wanted to go back to IV and he refused and says that > when he is 18 he will not do it that he would rather die. > > BARBIE > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 Hey, doesn't check e-mail very much, if at all! He is on Facebook. in Montgomery, Al. He would get mail there. He has, all of the sudden, gotten very closed mouthed to his aquiantances about SubQ. A lot of his friends have requested me, and I had an album of his treatments on there. He asked me to take it off. Makes me happy that he doesn't want to be a victum anymore. He used to use it as a crutch. I am praying for your family. @...: mother5590@...: Sun, 4 Jan 2009 14:07:48 -0800Subject: Re: Re: Lucas We have been in counseling since he was 18mo. He has struggled his entire life and is Bipolar so I am very well aware of the need for a village to raise this child. My village her has been less than helpful up until recently. I have found a new incredible PHD Psychologist ( she is seeing him pro bono because she does not get reimbursed by Medicaid) who is finally getting what we are dealing with and seems to see how complex it is. He is a wonderful child but sadly partly due to his birth familes poor choices he is suffering the consequences. We adopted him at birth so I love him with all my heart and will stand by him. It is very complex and I spend my time trying to get him the help he needs. Sadly here in Oklahoma there is very little of that so I have spent the past 2 years searching for help beyond someone just talking to him about his troubles. He needs help working with coping skills and very specific to his situation. Thanks for your valuableinput. BARBIE ________________________________From: tl_kittle <tl_kittle@...>@...: Sunday, January 4, 2009 3:55:34 PMSubject: Re: LucasYou may already be doing this, but your son needs therapy--he needs tospeak with a trained therapist to work through these issues--part ofbecoming a teenage is wanting to be able to exert more control overone's life, and saying 'no' is a way of exerting control--even if it'snot in his best interest.if you place him in therapy, then it will allow the therapist to take onthe role of trying to fix him, and you can go back to being the mom--Iwould definitely take time to find the right therapist--as we know withdoctors, therapists are not all alike, and it's important to findsomeone who is strong and kind.>> > I brought up the subject of my son Lucas who is now 13 refusinghis> > treatments. ( SUB Q). He is Bipolar, ADD, Oppositional Defiant andSensory> > Integration Issues and has other mental health issues but is verysmart and> > I find very sensitive to understanding most things in life. We havebeen> > having a problem since we took him off for 3 months to test over 2years> > ago. He has fought me ever since because he says he does not need it> > anymore. I have spoken with his Immunologist and she showed him hisresults> > and he still says they are wrong and he is not going to do it. Weagreed for> > awhile that we could do it at night and give him a bit more of hissleep med> > and then that became a problem because he began to refuse again. Herefuses> > EMLA or any of the sprays or lidocaine patches and pitches a hugefit and> > cries and overwhelms himself and everyone else and has even becomeviolent> > over it or sobs and or sobs and sobs about it. He bargains with me,lies and> > refuses some more. His Immunologist told me that this was asituation that> > there were NO choices until he was 18 and that I had to take him tothe ER> > if he refused . So we did that a month ago and we ended up there for4 days> > and nothing came of it. No one even talked to him about it. Thedoctor told> > him that she was going to call security and hold him down if herefused so> > he let me. ( That was really helpful to fix the problem long termLOL) Most> > weeks I bribe, barter or threaten him to get it done. Sometimes itworks and> > sometimes it does not and we are days late and it is a nightmare.> > So finally today I am hearing something new from him. I am not surehow> > much is manipulation and how much is truth but basically he saysthat he> > does not want me to do it because he thinks it is like a punishmentand it> > makes him hate me because he cannot separate that he thinks I mightdo it to> > hurt him from how much I love it. It just breaks my heart. So I amwondering> > if others have had this conversation with there kids. What kinds of> > emotional outcomes are out there with us sticking our kids everyweek. I do> > not have the answers to this today but I have told him that I willnot do> > this anymore that I am going to find another way (possibly going tothe> > Immunologists office weekly and letting them stick him and then wecan leave> > or have a home nurse ( but he says he does not want to have to thinkabout> > it at home so does not want that). He says he wants to be safe athome and> > that it does not make him feel safe to let people poke him at home.This is> > all surprising to me since I am an RN in Pediatrics AND I havealways given> > him all kinds of choices around his infusions ( he has been on themfor over> > 10 years now. IVIG for the first 7 years.) The night time stickswere his> > choice and did work for awhile but I stopped when he refused becauseI will> > not poke him in his sleep if he is refusing. So does anyone have any> > thoughts. We have tried relaxation, therapy ( which is ongoing) andjust> > talking to him about it but it is only getting worse and I feel so> > overwhelmed each week knowing that we are going to have to do itagain. ( I> > also asked him if he wanted to go back to IV and he refused and saysthat> > when he is 18 he will not do it that he would rather die.> >> > BARBIE> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 so how old is ?? Lucas is 13 now going on 16 so I have a whole new can of worms with puberty. He does not want his friends to know and never has. I understand his need to feel " normal " but it does make it difficult sometimes. BARBIE ________________________________ From: laura smith <iamlaurasmith@...> healyh < > Sent: Sunday, January 4, 2009 7:18:05 PM Subject: RE: Re: Lucas Hey, doesn't check e-mail very much, if at all! He is on Facebook. in Montgomery, Al. He would get mail there. He has, all of the sudden, gotten very closed mouthed to his aquiantances about SubQ. A lot of his friends have requested me, and I had an album of his treatments on there. He asked me to take it off. Makes me happy that he doesn't want to be a victum anymore. He used to use it as a crutch. I am praying for your family. groups (DOT) comFrom: mother5590 (DOT) comDate: Sun, 4 Jan 2009 14:07:48 -0800Subject: Re: Re: Lucas We have been in counseling since he was 18mo. He has struggled his entire life and is Bipolar so I am very well aware of the need for a village to raise this child. My village her has been less than helpful up until recently. I have found a new incredible PHD Psychologist ( she is seeing him pro bono because she does not get reimbursed by Medicaid) who is finally getting what we are dealing with and seems to see how complex it is. He is a wonderful child but sadly partly due to his birth familes poor choices he is suffering the consequences. We adopted him at birth so I love him with all my heart and will stand by him. It is very complex and I spend my time trying to get him the help he needs. Sadly here in Oklahoma there is very little of that so I have spent the past 2 years searching for help beyond someone just talking to him about his troubles. He needs help working with coping skills and very specific to his situation. Thanks for your valuableinput. BARBIE ____________ _________ _________ __From: tl_kittle <tl_kittle (DOT) com>groups (DOT) comSent: Sunday, January 4, 2009 3:55:34 PMSubject: Re: LucasYou may already be doing this, but your son needs therapy--he needs tospeak with a trained therapist to work through these issues--part ofbecoming a teenage is wanting to be able to exert more control overone's life, and saying 'no' is a way of exerting control--even if it'snot in his best interest.if you place him in therapy, then it will allow the therapist to take onthe role of trying to fix him, and you can go back to being the mom--Iwould definitely take time to find the right therapist--as we know withdoctors, therapists are not all alike, and it's important to findsomeone who is strong and kind.>> > I brought up the subject of my son Lucas who is now 13 refusinghis> > treatments. ( SUB Q). He is Bipolar, ADD, Oppositional Defiant andSensory> > Integration Issues and has other mental health issues but is verysmart and> > I find very sensitive to understanding most things in life. We havebeen> > having a problem since we took him off for 3 months to test over 2years> > ago. He has fought me ever since because he says he does not need it> > anymore. I have spoken with his Immunologist and she showed him hisresults> > and he still says they are wrong and he is not going to do it. Weagreed for> > awhile that we could do it at night and give him a bit more of hissleep med> > and then that became a problem because he began to refuse again. Herefuses> > EMLA or any of the sprays or lidocaine patches and pitches a hugefit and> > cries and overwhelms himself and everyone else and has even becomeviolent> > over it or sobs and or sobs and sobs about it. He bargains with me,lies and> > refuses some more. His Immunologist told me that this was asituation that> > there were NO choices until he was 18 and that I had to take him tothe ER> > if he refused .. So we did that a month ago and we ended up there for4 days> > and nothing came of it. No one even talked to him about it. Thedoctor told> > him that she was going to call security and hold him down if herefused so> > he let me. ( That was really helpful to fix the problem long termLOL) Most> > weeks I bribe, barter or threaten him to get it done. Sometimes itworks and> > sometimes it does not and we are days late and it is a nightmare.> > So finally today I am hearing something new from him. I am not surehow> > much is manipulation and how much is truth but basically he saysthat he> > does not want me to do it because he thinks it is like a punishmentand it> > makes him hate me because he cannot separate that he thinks I mightdo it to> > hurt him from how much I love it. It just breaks my heart. So I amwondering> > if others have had this conversation with there kids. What kinds of> > emotional outcomes are out there with us sticking our kids everyweek. I do> > not have the answers to this today but I have told him that I willnot do> > this anymore that I am going to find another way (possibly going tothe> > Immunologists office weekly and letting them stick him and then wecan leave> > or have a home nurse ( but he says he does not want to have to thinkabout> > it at home so does not want that). He says he wants to be safe athome and> > that it does not make him feel safe to let people poke him at home.This is> > all surprising to me since I am an RN in Pediatrics AND I havealways given> > him all kinds of choices around his infusions ( he has been on themfor over> > 10 years now. IVIG for the first 7 years.) The night time stickswere his> > choice and did work for awhile but I stopped when he refused becauseI will> > not poke him in his sleep if he is refusing. So does anyone have any> > thoughts. We have tried relaxation, therapy ( which is ongoing) andjust> > talking to him about it but it is only getting worse and I feel so> > overwhelmed each week knowing that we are going to have to do itagain. ( I> > also asked him if he wanted to go back to IV and he refused and saysthat> > when he is 18 he will not do it that he would rather die.> >> > BARBIE> >> > [Non-text portions of this message have been removed]> >> >> >>> [Non-text portions of this message have been removed]>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 --- I wonder if it would help any if he were able to speak to a young adult who has lived with the same or similar disease and treatment, how they look at their life now because of it...and also that it hasnt ruined their lives, they have still become what they wanted to be. At our old school, we were incredibly lucky, we had a social worker who was similar diseases beginning in childhood, did IVIG at the same hospital and felt many of the same emotions. She was able to hang out with savannah, listen to her emotions, give her some ideas on coping, handling feeling different, handling those feelings, and that even though she had gone thru all that she had, she still went to college, does what she wants to for a living, has a boyfriend and home, etc. I wonder if there is such a thing as a mentor for kids like ours? If not, that would be a neat program. Having that SW meant a lot to me, bc even though I can empathize with my daughter and advocate for her, I really dont know what its like to be a kid with CVID and what emotions that brings. valarie mom to 3 w/cvid In , Barbara Jimenez <mother5590@...> wrote: > > Actually I was hoping you would respond. My Lucas spoke out the other day that he felt really bad that he had not talked to your Lucas because he forgets about his email and has all his friends on MySpace. He was wondering if he was still willing to talk to him but was afraid that he would be mad at him. I encouraged him to email him but do not know if he did. Anyway you summed it up well. But... I have tried this with him and he just has a panic attack about doing it at all. I think his anxiety is overwhelming his sensibility. I ask him each time if he is willing to try and encourage every time to take it out ( and most times he does) I also have walked him through doing it himself and he will not. But funny I can get him to give me my insulin shots with no problem. He just cannot stick himself. I do not know anyone well enough to ask for them to do it or do it at someone elses home but I am going to try to see if we can have the doctors office get > involved and we go there weekly for the stick. I just wondered if others might want to have this conversation with their kids at some point so that the heartache does not build in them. Thanks so much for all the responses it is nice to know that we are not alone. Sadly the other thing he is saying is that " there cannot be a God if he allows this to happen to him and that he has prayed and prayed and God does not take it away and so he must be a terrible God to let a boy suffer like this. I have to take a deep breath each time he says this and try to reassure him that he is learning some hard lessons in life that will make him stronger and will help him be able to be an incredible person in his life. He just will not accept that answer. I am glad that he is able to express his concerns and fears and that I can try to be there for him. > > BARBIE > > > > > ________________________________ > From: laura smith <iamlaurasmith@...> > healyh < > > Sent: Sunday, January 4, 2009 1:49:15 PM > Subject: RE: Lucas > > > > Hey, I have been out of town, but just read this. It seems to me that our boys think alike! and I just had this conversation. He did resent me for always sticking him. He came out of the blue and told me that last week. But he followed it up with, " Mom, I have a life now. I have friends and girls like me. Do you think it's because of the gamma. " I took advantage of this (I'm not afraid to admit it!) and told him yes, gamma did this for him. His response? " Gamma does a body good! " LOL > > He and I talked about it. His Dad and I take turns now. Do you have a friend that would let you bring him to her house durning treatments? This would keep home his " safe " place. Maybe the friend would be willing to learn to stick him. Would he learn to stick himself? He could be in charge then. What about Atarax or some other med to calm his nerves before? > > Sounds like his concerns are as follows: He wants to keep home a safe place. He wants to keep you as his person to go to when he is scared, not the person " hurting " him. Maybe if you talk to him and see what you can work out together, he will see that right now, it is not an option to stop, however, you understand his concerns and will work with in them. > > groups (DOT) comFrom: mother5590 (DOT) comDate: Sat, 3 Jan 2009 19:12:48 -0800Subject: Lucas > > I brought up the subject of my son Lucas who is now 13 refusing his treatments. ( SUB Q). He is Bipolar, ADD, Oppositional Defiant and Sensory Integration Issues and has other mental health issues but is very smart and I find very sensitive to understanding most things in life. We have been having a problem since we took him off for 3 months to test over 2 years ago. He has fought me ever since because he says he does not need it anymore. I have spoken with his Immunologist and she showed him his results and he still says they are wrong and he is not going to do it. We agreed for awhile that we could do it at night and give him a bit more of his sleep med and then that became a problem because he began to refuse again. He refuses EMLA or any of the sprays or lidocaine patches and pitches a huge fit and cries and overwhelms himself and everyone else and has even become violent over it or sobs and or sobs and sobs about it. He bargains with me, lies > andrefuses some more. His Immunologist told me that this was a situation that there were NO choices until he was 18 and that I had to take him to the ER if he refused . So we did that a month ago and we ended up there for 4 days and nothing came of it. No one even talked to him about it. The doctor told him that she was going to call security and hold him down if he refused so he let me. ( That was really helpful to fix the problem long term LOL) Most weeks I bribe, barter or threaten him to get it done. Sometimes it works and sometimes it does not and we are days late and it is a nightmare. So finally today I am hearing something new from him. I am not sure how much is manipulation and how much is truth but basically he says that he does not want me to do it because he thinks it is like a punishment and it makes him hate me because he cannot separate that he thinks I might do it to hurt him from how much I love it. It just breaks my heart. So I am > wondering if others have had this conversation with there kids. What kinds of emotional outcomes are out there with us sticking our kids every week. I do not have the answers to this today but I have told him that I will not do this anymore that I am going to find another way (possibly going to the Immunologists office weekly and letting them stick him and then we can leave or have a home nurse ( but he says he does not want to have to think about it at home so does not want that). He says he wants to be safe at home and that it does not make him feel safe to let people poke him at home. This isall surprising to me since I am an RN in Pediatrics AND I have always given him all kinds of choices around his infusions ( he has been on them for over 10 years now. IVIG for the first 7 years.) The night time sticks were his choice and did work for awhile but I stopped when he refused because I will not poke him in his sleep if he is refusing. So does anyone > have any thoughts. We have tried relaxation, therapy ( which is ongoing) and just talking to him about it but it is only getting worse and I feel so overwhelmed each week knowing that we are going to have to do it again. ( I also asked him if he wanted to go back to IV and he refused and says that when he is 18 he will not do it that he would rather die. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 --- Im sorry, but that is just dumb. I know its not your fault, but saying he is too old to sedate is ignorant. Yes, he needs to learn to cope.....but if he cant calm down enough to learn to cope, he really isnt getting anywhere, is he? There are adults who need to be sedated just to go to the dentist. This is far more serious than that!! Are you moving soon? valarie mom to 3 w/cvid In , Barbara Jimenez <mother5590@...> wrote: > > Thanks so much for sharing your situation. I remember your daughter going through it and how upset you were feeling. I have incredible empathy since I have had over 28 surgeries in my life and too many hospitalizations to count. But.... it is hard to know what to do next with him. It has caused a lot of problems with our relationship and we have even had to call the police a couple of times because he has become so violent around the issues. Remember he is Bipolar so that is another reason. But... when we were hospitalized I asked for Ativan or something and they would not even discuss it with me. They said that he was too old to sedate that he needed to get use to it and that they would not sedate him at home due to the risks. I was not talking about knocking him out only give him something to relax. I even talked to his Psychiatrist about it but no way they said that it was up to his other doctors. As you can see I do not have very much support here so > that is why I am moving back up to WA state. We will get this worked out but it sure is exhausting. I am so glad that he is able to verbalize his needs. > > BARBIE > > > > > ________________________________ > From: osdbmom <osdbmom@...> > > Sent: Sunday, January 4, 2009 9:38:00 AM > Subject: Re: Lucas > > > --- > Barbie, > Im so sorry you are still struggling like this. I know I cant help, > but I want you to know Lucas is not the only kid who feels this way. > We offered SubQ to my 11 yr old when it was evident we needed to > restart IVIG after a 6 month trial off. She very clearly told the drs > the same thing.....home is a safe place, and hospital crap needs to > stay at the hospital. They talked to her several different > ways/approaches, and she held fast. She also has the sensory issues > like Lucas. About a yr and a half ago Savannah went thru an awful > depression/state of anxiety that turned into generalized anxiety about > everything, most esp school and drs/hospital/ IVIG. At the worst, she > would be strong enough(at 50 some lbs, lol still dont understand that) > to need at least 4 nurses to hold her down, at one point we had to > start papoosing her, which was also traumatizing. She would zone out > for hours, not talking or eating. She would vomit on the nurses and me > during the stick. We tried brushing(for the SPD), weighted blankets, > and calming music. We tried, really, every single suggestion everyone > ever gave us. We ended up working with a very kind developmental ped, > who finally told me that she felt Savannah had been traumatized by her > CVID and the treatments, and we would have to calm her down before we > could teach her any coping techniques. She explained it to me that if > you were in a horrible car accident, you might need to work up from > staying in your house and holding the car keys, to standing in the > driveway holding the car keys, to finally one day just sitting in the > car, etc. before you could drive again. But Savannah was too > distraught to learn any coping techniques to get her to this > point....we couldnt calm her no matter what we did, so that we could > make those baby steps. > We ended up using Ativan. We used the highest dose to begin with, and > even then, she was so used to freaking out at infusion it still took a > long time before she could actually calm down. During the times she > was calm, we worked thru different coping techniques and after a yr, > started to wean down the Ativan. Now she does well without it. > When she does have a fit, she gets mad at and blames her nurse( who > takes it cheerfully:) and turns to me for comfort. When we considered > SubQ, this is also one of my concerns. I dont want her to see me as > her nurse. I want to be the one to comfort her. I just think that some > kids personalities lend themselves well to that type of thing, and > some kids dont. Some kids really have a hard time seperating people > from their " roles " in the kids lives.....like having a school teacher > come to their home....lots of SPD kids have trouble with things like > that. > I guess Im just saying if all else fails can you just sedate him? > until he has enough good experiences to start learning better coping > techniques. > I remember when Savannah went thru this time, Barbie, it was probably > the worst yr of my life as a parent. Its so > exhausting.. ....overwhelming , not only for us, but for the child as > well. He needs the IG, he knows he needs it, he hates it, he " hates " > the person giving it, he hates the whole situation but knows he cant > stop it.......its hard for him. > > valarie > > In groups (DOT) com, Barbara Jimenez <mother5590@ ...> wrote: > > > > I brought up the subject of my son Lucas who is now 13 refusing his > treatments. ( SUB Q). He is Bipolar, ADD, Oppositional Defiant and > Sensory Integration Issues and has other mental health issues but is > very smart and I find very sensitive to understanding most things in > life. We have been having a problem since we took him off for 3 > months to test over 2 years ago. He has fought me ever since because > he says he does not need it anymore. I have spoken with his > Immunologist and she showed him his results and he still says they are > wrong and he is not going to do it. We agreed for awhile that we could > do it at night and give him a bit more of his sleep med and then that > became a problem because he began to refuse again. He refuses EMLA or > any of the sprays or lidocaine patches and pitches a huge fit and > cries and overwhelms himself and everyone else and has even become > violent over it or sobs and or sobs and sobs about it. He bargains > with me, lies and > > refuses some more. His Immunologist told me that this was a > situation that there were NO choices until he was 18 and that I had to > take him to the ER if he refused . So we did that a month ago and we > ended up there for 4 days and nothing came of it. No one even talked > to him about it. The doctor told him that she was going to call > security and hold him down if he refused so he let me. ( That was > really helpful to fix the problem long term LOL) Most weeks I bribe, > barter or threaten him to get it done. Sometimes it works and > sometimes it does not and we are days late and it is a nightmare. > > So finally today I am hearing something new from him. I am not sure > how much is manipulation and how much is truth but basically he says > that he does not want me to do it because he thinks it is like a > punishment and it makes him hate me because he cannot separate that he > thinks I might do it to hurt him from how much I love it. It just > breaks my heart. So I am wondering if others have had this > conversation with there kids. What kinds of emotional outcomes are out > there with us sticking our kids every week. I do not have the answers > to this today but I have told him that I will not do this anymore that > I am going to find another way (possibly going to the Immunologists > office weekly and letting them stick him and then we can leave or have > a home nurse ( but he says he does not want to have to think about it > at home so does not want that). He says he wants to be safe at home > and that it does not make him feel safe to let people poke him at > home. This is > > all surprising to me since I am an RN in Pediatrics AND I have > always given him all kinds of choices around his infusions ( he has > been on them for over 10 years now. IVIG for the first 7 years.) The > night time sticks were his choice and did work for awhile but I > stopped when he refused because I will not poke him in his sleep if he > is refusing. So does anyone have any thoughts. We have tried > relaxation, therapy ( which is ongoing) and just talking to him about > it but it is only getting worse and I feel so overwhelmed each week > knowing that we are going to have to do it again. ( I also asked him > if he wanted to go back to IV and he refused and says that when he is > 18 he will not do it that he would rather die. > > > > BARBIE > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 will be 13 in a couple of days. He is having a hard time because he feels so well, he doesn't want to think about being different. He and I went to Winter Xtreme this week (31st-2nd) It is a youth Conference with tons of Christian rock bands and our youth group went. I was a semi nervous wreck the whole time. 6900 people piled in a confernece center, hotel rooms, lack of sleep, trollys, not to mention the fact that he begged me not to be mom on this trip. I let one of the other parents chaperone his group. Then we come home, and he wants his best friend to spend the night. What happened to slowing down and getting prpoer sleep? I let spend the night, but they were both in bed by 10:00, asleep by 10:30. NOT happy about it, but they did it. I had to have a talk about the fact that he needs rest so that he doesn't get sick. I even did it in front of when they weren't going to bed on time. @...: mother5590@...: Sun, 4 Jan 2009 20:41:05 -0800Subject: Re: Re: Lucas so how old is ?? Lucas is 13 now going on 16 so I have a whole new can of worms with puberty. He does not want his friends to know and never has. I understand his need to feel " normal " but it does make it difficult sometimes. BARBIE ________________________________From: laura smith <iamlaurasmith@...>healyh < >Sent: Sunday, January 4, 2009 7:18:05 PMSubject: RE: Re: LucasHey, doesn't check e-mail very much, if at all! He is on Facebook. in Montgomery, Al. He would get mail there. He has, all of the sudden, gotten very closed mouthed to his aquiantances about SubQ. A lot of his friends have requested me, and I had an album of his treatments on there. He asked me to take it off. Makes me happy that he doesn't want to be a victum anymore. He used to use it as a crutch. I am praying for your family. groups (DOT) comFrom: mother5590 (DOT) comDate: Sun, 4 Jan 2009 14:07:48 -0800Subject: Re: Re: LucasWe have been in counseling since he was 18mo. He has struggled his entire life and is Bipolar so I am very well aware of the need for a village to raise this child. My village her has been less than helpful up until recently. I have found a new incredible PHD Psychologist ( she is seeing him pro bono because she does not get reimbursed by Medicaid) who is finally getting what we are dealing with and seems to see how complex it is. He is a wonderful child but sadly partly due to his birth familes poor choices he is suffering the consequences. We adopted him at birth so I love him with all my heart and will stand by him. It is very complex and I spend my time trying to get him the help he needs. Sadly here in Oklahoma there is very little of that so I have spent the past 2 years searching for help beyond someone just talking to him about his troubles. He needs help working with coping skills and very specific to his situation. Thanks for yourvaluableinput. BARBIE ____________ _________ _________ __From: tl_kittle <tl_kittle (DOT) com>groups (DOT) comSent: Sunday, January 4, 2009 3:55:34 PMSubject: Re: LucasYou may already be doing this, but your son needs therapy--he needs tospeak with a trained therapist to work through these issues--part ofbecoming a teenage is wanting to be able to exert more control overone's life, and saying 'no' is a way of exerting control--even if it'snot in his best interest.if you place him in therapy, then it will allow the therapist to take onthe role of trying to fix him, and you can go back to being the mom--Iwould definitely take time to find the right therapist--as we know withdoctors, therapists are not all alike, and it's important to findsomeone who is strong and kind.>> > I brought up the subject of my sonLucas who is now 13 refusinghis> > treatments. ( SUB Q). He is Bipolar, ADD, Oppositional Defiant andSensory> > Integration Issues and has other mental health issues but is verysmart and> > I find very sensitive to understanding most things in life. We havebeen> > having a problem since we took him off for 3 months to test over 2years> > ago. He has fought me ever since because he says he does not need it> > anymore. I have spoken with his Immunologist and she showed him hisresults> > and he still says they are wrong and he is not going to do it. Weagreed for> > awhile that we could do it at night and give him a bit more of hissleep med> > and then that became a problem because he began to refuse again. Herefuses> > EMLA or any of the sprays or lidocaine patches and pitches a hugefit and> > cries and overwhelms himself and everyone else and has even becomeviolent> > over it or sobs and or sobs and sobs about it. He bargains with me,lies and> > refusessome more. His Immunologist told me that this was asituation that> > there were NO choices until he was 18 and that I had to take him tothe ER> > if he refused . So we did that a month ago and we ended up there for4 days> > and nothing came of it. No one even talked to him about it. Thedoctor told> > him that she was going to call security and hold him down if herefused so> > he let me. ( That was really helpful to fix the problem long termLOL) Most> > weeks I bribe, barter or threaten him to get it done. Sometimes itworks and> > sometimes it does not and we are days late and it is a nightmare.> > So finally today I am hearing something new from him. I am not surehow> > much is manipulation and how much is truth but basically he saysthat he> > does not want me to do it because he thinks it is like a punishmentand it> > makes him hate me because he cannot separate that he thinks I mightdo it to> > hurt him from how much I love it. It just breaks myheart. So I amwondering> > if others have had this conversation with there kids. What kinds of> > emotional outcomes are out there with us sticking our kids everyweek. I do> > not have the answers to this today but I have told him that I willnot do> > this anymore that I am going to find another way (possibly going tothe> > Immunologists office weekly and letting them stick him and then wecan leave> > or have a home nurse ( but he says he does not want to have to thinkabout> > it at home so does not want that). He says he wants to be safe athome and> > that it does not make him feel safe to let people poke him at home.This is> > all surprising to me since I am an RN in Pediatrics AND I havealways given> > him all kinds of choices around his infusions ( he has been on themfor over> > 10 years now. IVIG for the first 7 years.) The night time stickswere his> > choice and did work for awhile but I stopped when he refused becauseI will> > not poke him in hissleep if he is refusing. So does anyone have any> > thoughts. We have tried relaxation, therapy ( which is ongoing) andjust> > talking to him about it but it is only getting worse and I feel so> > overwhelmed each week knowing that we are going to have to do itagain. ( I> > also asked him if he wanted to go back to IV and he refused and saysthat> > when he is 18 he will not do it that he would rather die.> >> > BARBIE> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 YES! I haven't talked to her recently, but B. is a Freshman in college. She has been through so much...kidney transplant, CVID, etc. She always manages to keep a positive attitude. She is an amazing young lady, and has a CB site. If you are interested, email me off line, and I will give her CB site. She is a friend of 's on Facebook and keeps up with him online. iamlaurasmith@... @...: osdbmom@...: Mon, 5 Jan 2009 15:58:55 +0000Subject: Re: Lucas --- I wonder if it would help any if he were able to speak to a youngadult who has lived with the same or similar disease and treatment,how they look at their life now because of it...and also that it hasntruined their lives, they have still become what they wanted to be. At our old school, we were incredibly lucky, we had a social workerwho was similar diseases beginning in childhood, did IVIG at the samehospital and felt many of the same emotions. She was able to hang outwith savannah, listen to her emotions, give her some ideas on coping,handling feeling different, handling those feelings, and that eventhough she had gone thru all that she had, she still went to college,does what she wants to for a living, has a boyfriend and home, etc. I wonder if there is such a thing as a mentor for kids like ours? Ifnot, that would be a neat program. Having that SW meant a lot to me, bc even though I can empathize withmy daughter and advocate for her, I really dont know what its like tobe a kid with CVID and what emotions that brings.valariemom to 3 w/cvidIn , Barbara Jimenez <mother5590@...> wrote:>> Actually I was hoping you would respond. My Lucas spoke out theother day that he felt really bad that he had not talked to your Lucasbecause he forgets about his email and has all his friends on MySpace.He was wondering if he was still willing to talk to him but was afraidthat he would be mad at him. I encouraged him to email him but do notknow if he did. Anyway you summed it up well. But... I have tried thiswith him and he just has a panic attack about doing it at all. I thinkhis anxiety is overwhelming his sensibility. I ask him each time if heis willing to try and encourage every time to take it out ( and mosttimes he does) I also have walked him through doing it himself and hewill not. But funny I can get him to give me my insulin shots with noproblem. He just cannot stick himself. I do not know anyone wellenough to ask for them to do it or do it at someone elses home but Iam going to try to see if we can have the doctors office get> involved and we go there weekly for the stick. I just wondered ifothers might want to have this conversation with their kids at somepoint so that the heartache does not build in them. Thanks so much forall the responses it is nice to know that we are not alone. Sadly theother thing he is saying is that " there cannot be a God if he allowsthis to happen to him and that he has prayed and prayed and God doesnot take it away and so he must be a terrible God to let a boy sufferlike this. I have to take a deep breath each time he says this and tryto reassure him that he is learning some hard lessons in life thatwill make him stronger and will help him be able to be an incredibleperson in his life. He just will not accept that answer. I am gladthat he is able to express his concerns and fears and that I can tryto be there for him. > > BARBIE > > > > > ________________________________> From: laura smith <iamlaurasmith@...>> To: healyh < >> Sent: Sunday, January 4, 2009 1:49:15 PM> Subject: RE: Lucas> > > > Hey, I have been out of town, but just read this. It seems to methat our boys think alike! and I just had this conversation. Hedid resent me for always sticking him. He came out of the blue andtold me that last week. But he followed it up with, " Mom, I have alife now. I have friends and girls like me. Do you think it's becauseof the gamma. " I took advantage of this (I'm not afraid to admit it!)and told him yes, gamma did this for him. His response? " Gamma does abody good! " LOL> > He and I talked about it. His Dad and I take turns now. Do you havea friend that would let you bring him to her house durning treatments?This would keep home his " safe " place. Maybe the friend would bewilling to learn to stick him. Would he learn to stick himself? Hecould be in charge then. What about Atarax or some other med to calmhis nerves before?> > Sounds like his concerns are as follows: He wants to keep home asafe place. He wants to keep you as his person to go to when he isscared, not the person " hurting " him. Maybe if you talk to him and seewhat you can work out together, he will see that right now, it is notan option to stop, however, you understand his concerns and will workwith in them.> > groups (DOT) comFrom: mother5590 (DOT) comDate: Sat, 3Jan 2009 19:12:48 -0800Subject: Lucas> > I brought up the subject of my son Lucas who is now 13 refusing histreatments. ( SUB Q). He is Bipolar, ADD, Oppositional Defiant andSensory Integration Issues and has other mental health issues but isvery smart and I find very sensitive to understanding most things inlife. We have been having a problem since we took him off for 3 monthsto test over 2 years ago. He has fought me ever since because he sayshe does not need it anymore. I have spoken with his Immunologist andshe showed him his results and he still says they are wrong and he isnot going to do it. We agreed for awhile that we could do it at nightand give him a bit more of his sleep med and then that became aproblem because he began to refuse again. He refuses EMLA or any ofthe sprays or lidocaine patches and pitches a huge fit and cries andoverwhelms himself and everyone else and has even become violent overit or sobs and or sobs and sobs about it. He bargains with me, lies> andrefuses some more. His Immunologist told me that this was asituation that there were NO choices until he was 18 and that I had totake him to the ER if he refused . So we did that a month ago and weended up there for 4 days and nothing came of it. No one even talkedto him about it. The doctor told him that she was going to callsecurity and hold him down if he refused so he let me. ( That wasreally helpful to fix the problem long term LOL) Most weeks I bribe,barter or threaten him to get it done. Sometimes it works andsometimes it does not and we are days late and it is a nightmare. Sofinally today I am hearing something new from him. I am not sure howmuch is manipulation and how much is truth but basically he says thathe does not want me to do it because he thinks it is like a punishmentand it makes him hate me because he cannot separate that he thinks Imight do it to hurt him from how much I love it. It just breaks myheart. So I am> wondering if others have had this conversation with there kids.What kinds of emotional outcomes are out there with us sticking ourkids every week. I do not have the answers to this today but I havetold him that I will not do this anymore that I am going to findanother way (possibly going to the Immunologists office weekly andletting them stick him and then we can leave or have a home nurse (but he says he does not want to have to think about it at home so doesnot want that). He says he wants to be safe at home and that it doesnot make him feel safe to let people poke him at home. This isallsurprising to me since I am an RN in Pediatrics AND I have alwaysgiven him all kinds of choices around his infusions ( he has been onthem for over 10 years now. IVIG for the first 7 years.) The nighttime sticks were his choice and did work for awhile but I stopped whenhe refused because I will not poke him in his sleep if he is refusing.So does anyone> have any thoughts. We have tried relaxation, therapy ( which isongoing) and just talking to him about it but it is only getting worseand I feel so overwhelmed each week knowing that we are going to haveto do it again. ( I also asked him if he wanted to go back to IV andhe refused and says that when he is 18 he will not do it that he wouldrather die. BARBIE [Non-text portions of this message have been removed] > > ____________ _________ _________ _________ _________ _________ _> Life on your PC is safer, easier, and more enjoyable with WindowsVista®. > http://clk.atdmt. com/MRT/go/ 127032870/ direct/01/> > [Non-text portions of this message have been removed]> > > > [Non-text portions of this message have been removed]> _________________________________________________________________ It’s the same Hotmail®. If by “same” you mean up to 70% faster. http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_hotmail_acq_broad1_12200\ 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Yes but not for 6 mo. I called the Immunologists office this morning again and I told them where we are and the nurse said that they cannot do it in their office. And the nurses from Accreedo said that they cannot do it at the Drs. office. I informed them that we had until Friday and otherwise it will not get done. I am not going to fight him again at this point. I have grounded him and refused things and taken things away and bribed him etc etc etc and it does not work. This is a valid issue in his mind and I feel I need to respect his feelings so he can feel safe. I have also brought this to the attention of both his Psychiatrist, and Psychologists and no one seems to see the urgency. I have been fighting him for atleast a year but we have had to go to the hospital ( either mental health or regular) on 3 occasions and should have been more over this issue. Someone has to figure it out with him or they have to come up with another plan. BARBIE ________________________________ From: osdbmom <osdbmom@...> Sent: Monday, January 5, 2009 10:03:53 AM Subject: Re: Lucas --- Im sorry, but that is just dumb. I know its not your fault, but saying he is too old to sedate is ignorant. Yes, he needs to learn to cope.....but if he cant calm down enough to learn to cope, he really isnt getting anywhere, is he? There are adults who need to be sedated just to go to the dentist. This is far more serious than that!! Are you moving soon? valarie mom to 3 w/cvid In groups (DOT) com, Barbara Jimenez <mother5590@ ...> wrote: > > Thanks so much for sharing your situation. I remember your daughter going through it and how upset you were feeling. I have incredible empathy since I have had over 28 surgeries in my life and too many hospitalizations to count. But.... it is hard to know what to do next with him. It has caused a lot of problems with our relationship and we have even had to call the police a couple of times because he has become so violent around the issues. Remember he is Bipolar so that is another reason. But... when we were hospitalized I asked for Ativan or something and they would not even discuss it with me. They said that he was too old to sedate that he needed to get use to it and that they would not sedate him at home due to the risks. I was not talking about knocking him out only give him something to relax. I even talked to his Psychiatrist about it but no way they said that it was up to his other doctors. As you can see I do not have very much support here so > that is why I am moving back up to WA state. We will get this worked out but it sure is exhausting. I am so glad that he is able to verbalize his needs. > > BARBIE > > > > > ____________ _________ _________ __ > From: osdbmom <osdbmom@... > > groups (DOT) com > Sent: Sunday, January 4, 2009 9:38:00 AM > Subject: Re: Lucas > > > --- > Barbie, > Im so sorry you are still struggling like this. I know I cant help, > but I want you to know Lucas is not the only kid who feels this way. > We offered SubQ to my 11 yr old when it was evident we needed to > restart IVIG after a 6 month trial off. She very clearly told the drs > the same thing.....home is a safe place, and hospital crap needs to > stay at the hospital. They talked to her several different > ways/approaches, and she held fast. She also has the sensory issues > like Lucas. About a yr and a half ago Savannah went thru an awful > depression/state of anxiety that turned into generalized anxiety about > everything, most esp school and drs/hospital/ IVIG. At the worst, she > would be strong enough(at 50 some lbs, lol still dont understand that) > to need at least 4 nurses to hold her down, at one point we had to > start papoosing her, which was also traumatizing. She would zone out > for hours, not talking or eating. She would vomit on the nurses and me > during the stick. We tried brushing(for the SPD), weighted blankets, > and calming music. We tried, really, every single suggestion everyone > ever gave us. We ended up working with a very kind developmental ped, > who finally told me that she felt Savannah had been traumatized by her > CVID and the treatments, and we would have to calm her down before we > could teach her any coping techniques. She explained it to me that if > you were in a horrible car accident, you might need to work up from > staying in your house and holding the car keys, to standing in the > driveway holding the car keys, to finally one day just sitting in the > car, etc. before you could drive again. But Savannah was too > distraught to learn any coping techniques to get her to this > point....we couldnt calm her no matter what we did, so that we could > make those baby steps. > We ended up using Ativan. We used the highest dose to begin with, and > even then, she was so used to freaking out at infusion it still took a > long time before she could actually calm down. During the times she > was calm, we worked thru different coping techniques and after a yr, > started to wean down the Ativan. Now she does well without it. > When she does have a fit, she gets mad at and blames her nurse( who > takes it cheerfully:) and turns to me for comfort. When we considered > SubQ, this is also one of my concerns. I dont want her to see me as > her nurse. I want to be the one to comfort her. I just think that some > kids personalities lend themselves well to that type of thing, and > some kids dont. Some kids really have a hard time seperating people > from their " roles " in the kids lives.....like having a school teacher > come to their home....lots of SPD kids have trouble with things like > that. > I guess Im just saying if all else fails can you just sedate him? > until he has enough good experiences to start learning better coping > techniques. > I remember when Savannah went thru this time, Barbie, it was probably > the worst yr of my life as a parent. Its so > exhausting.. ....overwhelming , not only for us, but for the child as > well. He needs the IG, he knows he needs it, he hates it, he " hates " > the person giving it, he hates the whole situation but knows he cant > stop it.......its hard for him. > > valarie > > In groups (DOT) com, Barbara Jimenez <mother5590@ ...> wrote: > > > > I brought up the subject of my son Lucas who is now 13 refusing his > treatments. ( SUB Q). He is Bipolar, ADD, Oppositional Defiant and > Sensory Integration Issues and has other mental health issues but is > very smart and I find very sensitive to understanding most things in > life. We have been having a problem since we took him off for 3 > months to test over 2 years ago. He has fought me ever since because > he says he does not need it anymore. I have spoken with his > Immunologist and she showed him his results and he still says they are > wrong and he is not going to do it. We agreed for awhile that we could > do it at night and give him a bit more of his sleep med and then that > became a problem because he began to refuse again. He refuses EMLA or > any of the sprays or lidocaine patches and pitches a huge fit and > cries and overwhelms himself and everyone else and has even become > violent over it or sobs and or sobs and sobs about it. He bargains > with me, lies and > > refuses some more. His Immunologist told me that this was a > situation that there were NO choices until he was 18 and that I had to > take him to the ER if he refused . So we did that a month ago and we > ended up there for 4 days and nothing came of it. No one even talked > to him about it. The doctor told him that she was going to call > security and hold him down if he refused so he let me. ( That was > really helpful to fix the problem long term LOL) Most weeks I bribe, > barter or threaten him to get it done. Sometimes it works and > sometimes it does not and we are days late and it is a nightmare. > > So finally today I am hearing something new from him. I am not sure > how much is manipulation and how much is truth but basically he says > that he does not want me to do it because he thinks it is like a > punishment and it makes him hate me because he cannot separate that he > thinks I might do it to hurt him from how much I love it. It just > breaks my heart. So I am wondering if others have had this > conversation with there kids. What kinds of emotional outcomes are out > there with us sticking our kids every week. I do not have the answers > to this today but I have told him that I will not do this anymore that > I am going to find another way (possibly going to the Immunologists > office weekly and letting them stick him and then we can leave or have > a home nurse ( but he says he does not want to have to think about it > at home so does not want that). He says he wants to be safe at home > and that it does not make him feel safe to let people poke him at > home. This is > > all surprising to me since I am an RN in Pediatrics AND I have > always given him all kinds of choices around his infusions ( he has > been on them for over 10 years now. IVIG for the first 7 years.) The > night time sticks were his choice and did work for awhile but I > stopped when he refused because I will not poke him in his sleep if he > is refusing. So does anyone have any thoughts. We have tried > relaxation, therapy ( which is ongoing) and just talking to him about > it but it is only getting worse and I feel so overwhelmed each week > knowing that we are going to have to do it again. ( I also asked him > if he wanted to go back to IV and he refused and says that when he is > 18 he will not do it that he would rather die. > > > > BARBIE > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 I have tried to get him hooked up with other kids in this group and also have told the Immunologist that I feel like it would help but no referrals have come our way. ( One family does have a son Lucas that has corresponded with Lucas but I think they only commiserated together rather than someone being older. I do know of a couple of families in WA that have older boys that I will try when we get up there. BARBIE ________________________________ From: osdbmom <osdbmom@...> Sent: Monday, January 5, 2009 9:58:55 AM Subject: Re: Lucas --- I wonder if it would help any if he were able to speak to a young adult who has lived with the same or similar disease and treatment, how they look at their life now because of it...and also that it hasnt ruined their lives, they have still become what they wanted to be. At our old school, we were incredibly lucky, we had a social worker who was similar diseases beginning in childhood, did IVIG at the same hospital and felt many of the same emotions. She was able to hang out with savannah, listen to her emotions, give her some ideas on coping, handling feeling different, handling those feelings, and that even though she had gone thru all that she had, she still went to college, does what she wants to for a living, has a boyfriend and home, etc. I wonder if there is such a thing as a mentor for kids like ours? If not, that would be a neat program. Having that SW meant a lot to me, bc even though I can empathize with my daughter and advocate for her, I really dont know what its like to be a kid with CVID and what emotions that brings. valarie mom to 3 w/cvid In groups (DOT) com, Barbara Jimenez <mother5590@ ...> wrote: > > Actually I was hoping you would respond. My Lucas spoke out the other day that he felt really bad that he had not talked to your Lucas because he forgets about his email and has all his friends on MySpace. He was wondering if he was still willing to talk to him but was afraid that he would be mad at him. I encouraged him to email him but do not know if he did. Anyway you summed it up well. But... I have tried this with him and he just has a panic attack about doing it at all. I think his anxiety is overwhelming his sensibility. I ask him each time if he is willing to try and encourage every time to take it out ( and most times he does) I also have walked him through doing it himself and he will not. But funny I can get him to give me my insulin shots with no problem. He just cannot stick himself. I do not know anyone well enough to ask for them to do it or do it at someone elses home but I am going to try to see if we can have the doctors office get > involved and we go there weekly for the stick. I just wondered if others might want to have this conversation with their kids at some point so that the heartache does not build in them. Thanks so much for all the responses it is nice to know that we are not alone. Sadly the other thing he is saying is that " there cannot be a God if he allows this to happen to him and that he has prayed and prayed and God does not take it away and so he must be a terrible God to let a boy suffer like this. I have to take a deep breath each time he says this and try to reassure him that he is learning some hard lessons in life that will make him stronger and will help him be able to be an incredible person in his life. He just will not accept that answer. I am glad that he is able to express his concerns and fears and that I can try to be there for him. > > BARBIE > > > > > ____________ _________ _________ __ > From: laura smith <iamlaurasmith@ ...> > healyh <groups (DOT) com> > Sent: Sunday, January 4, 2009 1:49:15 PM > Subject: RE: Lucas > > > > Hey, I have been out of town, but just read this. It seems to me that our boys think alike! and I just had this conversation. He did resent me for always sticking him. He came out of the blue and told me that last week. But he followed it up with, " Mom, I have a life now. I have friends and girls like me. Do you think it's because of the gamma. " I took advantage of this (I'm not afraid to admit it!) and told him yes, gamma did this for him. His response? " Gamma does a body good! " LOL > > He and I talked about it. His Dad and I take turns now. Do you have a friend that would let you bring him to her house durning treatments? This would keep home his " safe " place. Maybe the friend would be willing to learn to stick him. Would he learn to stick himself? He could be in charge then. What about Atarax or some other med to calm his nerves before? > > Sounds like his concerns are as follows: He wants to keep home a safe place. He wants to keep you as his person to go to when he is scared, not the person " hurting " him. Maybe if you talk to him and see what you can work out together, he will see that right now, it is not an option to stop, however, you understand his concerns and will work with in them. > > groups (DOT) comFrom: mother5590 (DOT) comDate: Sat, 3 Jan 2009 19:12:48 -0800Subject: Lucas > > I brought up the subject of my son Lucas who is now 13 refusing his treatments. ( SUB Q). He is Bipolar, ADD, Oppositional Defiant and Sensory Integration Issues and has other mental health issues but is very smart and I find very sensitive to understanding most things in life. We have been having a problem since we took him off for 3 months to test over 2 years ago. He has fought me ever since because he says he does not need it anymore. I have spoken with his Immunologist and she showed him his results and he still says they are wrong and he is not going to do it. We agreed for awhile that we could do it at night and give him a bit more of his sleep med and then that became a problem because he began to refuse again. He refuses EMLA or any of the sprays or lidocaine patches and pitches a huge fit and cries and overwhelms himself and everyone else and has even become violent over it or sobs and or sobs and sobs about it. He bargains with me, lies > andrefuses some more. His Immunologist told me that this was a situation that there were NO choices until he was 18 and that I had to take him to the ER if he refused . So we did that a month ago and we ended up there for 4 days and nothing came of it. No one even talked to him about it. The doctor told him that she was going to call security and hold him down if he refused so he let me. ( That was really helpful to fix the problem long term LOL) Most weeks I bribe, barter or threaten him to get it done. Sometimes it works and sometimes it does not and we are days late and it is a nightmare. So finally today I am hearing something new from him. I am not sure how much is manipulation and how much is truth but basically he says that he does not want me to do it because he thinks it is like a punishment and it makes him hate me because he cannot separate that he thinks I might do it to hurt him from how much I love it. It just breaks my heart. So I am > wondering if others have had this conversation with there kids. What kinds of emotional outcomes are out there with us sticking our kids every week. I do not have the answers to this today but I have told him that I will not do this anymore that I am going to find another way (possibly going to the Immunologists office weekly and letting them stick him and then we can leave or have a home nurse ( but he says he does not want to have to think about it at home so does not want that). He says he wants to be safe at home and that it does not make him feel safe to let people poke him at home. This isall surprising to me since I am an RN in Pediatrics AND I have always given him all kinds of choices around his infusions ( he has been on them for over 10 years now. IVIG for the first 7 years.) The night time sticks were his choice and did work for awhile but I stopped when he refused because I will not poke him in his sleep if he is refusing. So does anyone > have any thoughts. We have tried relaxation, therapy ( which is ongoing) and just talking to him about it but it is only getting worse and I feel so overwhelmed each week knowing that we are going to have to do it again. ( I also asked him if he wanted to go back to IV and he refused and says that when he is 18 he will not do it that he would rather die. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 I have had this talk but my son cannot get to sleep even with a sleep aide until 12 or 1am. He sleeps most days about 10-11 hrs or he is unable to function. Partly I think because he is late for his gamma and his levels are not as stable as they could be. This is a very tough age. You are a wonderful mom to take him to the concert. We do want our kids to feel normal. We do want them to do the things kids do during this age but I can tell you that getting him to bed at 10 will be a tough thing in the future. Teens just stay up in their rooms and we think they are asleep. You do not know how many times I have made sure he is in bed and then gone back later and found him up during the middle of the night. BARBIE ________________________________ From: laura smith <iamlaurasmith@...> healyh < > Sent: Monday, January 5, 2009 10:13:11 AM Subject: RE: Re: Lucas will be 13 in a couple of days. He is having a hard time because he feels so well, he doesn't want to think about being different. He and I went to Winter Xtreme this week (31st-2nd) It is a youth Conference with tons of Christian rock bands and our youth group went. I was a semi nervous wreck the whole time. 6900 people piled in a confernece center, hotel rooms, lack of sleep, trollys, not to mention the fact that he begged me not to be mom on this trip. I let one of the other parents chaperone his group. Then we come home, and he wants his best friend to spend the night. What happened to slowing down and getting prpoer sleep? I let spend the night, but they were both in bed by 10:00, asleep by 10:30. NOT happy about it, but they did it. I had to have a talk about the fact that he needs rest so that he doesn't get sick. I even did it in front of when they weren't going to bed on time. groups (DOT) comFrom: mother5590 (DOT) comDate: Sun, 4 Jan 2009 20:41:05 -0800Subject: Re: Re: Lucas so how old is ?? Lucas is 13 now going on 16 so I have a whole new can of worms with puberty. He does not want his friends to know and never has. I understand his need to feel " normal " but it does make it difficult sometimes. BARBIE ____________ _________ _________ __From: laura smith <iamlaurasmith@ hotmail.com>healyh <groups (DOT) com>Sent: Sunday, January 4, 2009 7:18:05 PMSubject: RE: Re: LucasHey, doesn't check e-mail very much, if at all! He is on Facebook. in Montgomery, Al. He would get mail there. He has, all of the sudden, gotten very closed mouthed to his aquiantances about SubQ. A lot of his friends have requested me, and I had an album of his treatments on there. He asked me to take it off. Makes me happy that he doesn't want to be a victum anymore. He used to use it as a crutch. I am praying for your family. groups (DOT) comFrom: mother5590 (DOT) comDate: Sun, 4 Jan 2009 14:07:48 -0800Subject: Re: Re: LucasWe have been in counseling since he was 18mo. He has struggled his entire life and is Bipolar so I am very well aware of the need for a village to raise this child. My village her has been less than helpful up until recently. I have found a new incredible PHD Psychologist ( she is seeing him pro bono because she does not get reimbursed by Medicaid) who is finally getting what we are dealing with and seems to see how complex it is. He is a wonderful child but sadly partly due to his birth familes poor choices he is suffering the consequences. We adopted him at birth so I love him with all my heart and will stand by him. It is very complex and I spend my time trying to get him the help he needs. Sadly here in Oklahoma there is very little of that so I have spent the past 2 years searching for help beyond someone just talking to him about his troubles. He needs help working with coping skills and very specific to his situation. Thanks for yourvaluableinput. BARBIE ____________ _________ _________ __From: tl_kittle <tl_kittle (DOT) com>groups (DOT) comSent: Sunday, January 4, 2009 3:55:34 PMSubject: Re: LucasYou may already be doing this, but your son needs therapy--he needs tospeak with a trained therapist to work through these issues--part ofbecoming a teenage is wanting to be able to exert more control overone's life, and saying 'no' is a way of exerting control--even if it'snot in his best interest.if you place him in therapy, then it will allow the therapist to take onthe role of trying to fix him, and you can go back to being the mom--Iwould definitely take time to find the right therapist--as we know withdoctors, therapists are not all alike, and it's important to findsomeone who is strong and kind.>> > I brought up the subject of my sonLucas who is now 13 refusinghis> > treatments. ( SUB Q). He is Bipolar, ADD, Oppositional Defiant andSensory> > Integration Issues and has other mental health issues but is verysmart and> > I find very sensitive to understanding most things in life. We havebeen> > having a problem since we took him off for 3 months to test over 2years> > ago. He has fought me ever since because he says he does not need it> > anymore. I have spoken with his Immunologist and she showed him hisresults> > and he still says they are wrong and he is not going to do it. Weagreed for> > awhile that we could do it at night and give him a bit more of hissleep med> > and then that became a problem because he began to refuse again. Herefuses> > EMLA or any of the sprays or lidocaine patches and pitches a hugefit and> > cries and overwhelms himself and everyone else and has even becomeviolent> > over it or sobs and or sobs and sobs about it. He bargains with me,lies and> > refusessome more. His Immunologist told me that this was asituation that> > there were NO choices until he was 18 and that I had to take him tothe ER> > if he refused . So we did that a month ago and we ended up there for4 days> > and nothing came of it. No one even talked to him about it. Thedoctor told> > him that she was going to call security and hold him down if herefused so> > he let me. ( That was really helpful to fix the problem long termLOL) Most> > weeks I bribe, barter or threaten him to get it done. Sometimes itworks and> > sometimes it does not and we are days late and it is a nightmare.> > So finally today I am hearing something new from him. I am not surehow> > much is manipulation and how much is truth but basically he saysthat he> > does not want me to do it because he thinks it is like a punishmentand it> > makes him hate me because he cannot separate that he thinks I mightdo it to> > hurt him from how much I love it. It just breaks myheart. So I amwondering> > if others have had this conversation with there kids. What kinds of> > emotional outcomes are out there with us sticking our kids everyweek. I do> > not have the answers to this today but I have told him that I willnot do> > this anymore that I am going to find another way (possibly going tothe> > Immunologists office weekly and letting them stick him and then wecan leave> > or have a home nurse ( but he says he does not want to have to thinkabout> > it at home so does not want that). He says he wants to be safe athome and> > that it does not make him feel safe to let people poke him at home.This is> > all surprising to me since I am an RN in Pediatrics AND I havealways given> > him all kinds of choices around his infusions ( he has been on themfor over> > 10 years now. IVIG for the first 7 years.) The night time stickswere his> > choice and did work for awhile but I stopped when he refused becauseI will> > not poke him in hissleep if he is refusing. So does anyone have any> > thoughts. We have tried relaxation, therapy ( which is ongoing) andjust> > talking to him about it but it is only getting worse and I feel so> > overwhelmed each week knowing that we are going to have to do itagain. ( I> > also asked him if he wanted to go back to IV and he refused and saysthat> > when he is 18 he will not do it that he would rather die.> >> > BARBIE> >> > [Non-text portions of this message have been removed]> >> >> >>> [Non-text portions of this message have been removed]>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 I have had this talk but my son cannot get to sleep even with a sleep aide until 12 or 1am. He sleeps most days about 10-11 hrs or he is unable to function. Partly I think because he is late for his gamma and his levels are not as stable as they could be. This is a very tough age. You are a wonderful mom to take him to the concert. We do want our kids to feel normal. We do want them to do the things kids do during this age but I can tell you that getting him to bed at 10 will be a tough thing in the future. Teens just stay up in their rooms and we think they are asleep. You do not know how many times I have made sure he is in bed and then gone back later and found him up during the middle of the night. BARBIE ________________________________ From: laura smith <iamlaurasmith@...> healyh < > Sent: Monday, January 5, 2009 10:13:11 AM Subject: RE: Re: Lucas will be 13 in a couple of days. He is having a hard time because he feels so well, he doesn't want to think about being different. He and I went to Winter Xtreme this week (31st-2nd) It is a youth Conference with tons of Christian rock bands and our youth group went. I was a semi nervous wreck the whole time. 6900 people piled in a confernece center, hotel rooms, lack of sleep, trollys, not to mention the fact that he begged me not to be mom on this trip. I let one of the other parents chaperone his group. Then we come home, and he wants his best friend to spend the night. What happened to slowing down and getting prpoer sleep? I let spend the night, but they were both in bed by 10:00, asleep by 10:30. NOT happy about it, but they did it. I had to have a talk about the fact that he needs rest so that he doesn't get sick. I even did it in front of when they weren't going to bed on time. groups (DOT) comFrom: mother5590 (DOT) comDate: Sun, 4 Jan 2009 20:41:05 -0800Subject: Re: Re: Lucas so how old is ?? Lucas is 13 now going on 16 so I have a whole new can of worms with puberty. He does not want his friends to know and never has. I understand his need to feel " normal " but it does make it difficult sometimes. BARBIE ____________ _________ _________ __From: laura smith <iamlaurasmith@ hotmail.com>healyh <groups (DOT) com>Sent: Sunday, January 4, 2009 7:18:05 PMSubject: RE: Re: LucasHey, doesn't check e-mail very much, if at all! He is on Facebook. in Montgomery, Al. He would get mail there. He has, all of the sudden, gotten very closed mouthed to his aquiantances about SubQ. A lot of his friends have requested me, and I had an album of his treatments on there. He asked me to take it off. Makes me happy that he doesn't want to be a victum anymore. He used to use it as a crutch. I am praying for your family. groups (DOT) comFrom: mother5590 (DOT) comDate: Sun, 4 Jan 2009 14:07:48 -0800Subject: Re: Re: LucasWe have been in counseling since he was 18mo. He has struggled his entire life and is Bipolar so I am very well aware of the need for a village to raise this child. My village her has been less than helpful up until recently. I have found a new incredible PHD Psychologist ( she is seeing him pro bono because she does not get reimbursed by Medicaid) who is finally getting what we are dealing with and seems to see how complex it is. He is a wonderful child but sadly partly due to his birth familes poor choices he is suffering the consequences. We adopted him at birth so I love him with all my heart and will stand by him. It is very complex and I spend my time trying to get him the help he needs. Sadly here in Oklahoma there is very little of that so I have spent the past 2 years searching for help beyond someone just talking to him about his troubles. He needs help working with coping skills and very specific to his situation. Thanks for yourvaluableinput. BARBIE ____________ _________ _________ __From: tl_kittle <tl_kittle (DOT) com>groups (DOT) comSent: Sunday, January 4, 2009 3:55:34 PMSubject: Re: LucasYou may already be doing this, but your son needs therapy--he needs tospeak with a trained therapist to work through these issues--part ofbecoming a teenage is wanting to be able to exert more control overone's life, and saying 'no' is a way of exerting control--even if it'snot in his best interest.if you place him in therapy, then it will allow the therapist to take onthe role of trying to fix him, and you can go back to being the mom--Iwould definitely take time to find the right therapist--as we know withdoctors, therapists are not all alike, and it's important to findsomeone who is strong and kind.>> > I brought up the subject of my sonLucas who is now 13 refusinghis> > treatments. ( SUB Q). He is Bipolar, ADD, Oppositional Defiant andSensory> > Integration Issues and has other mental health issues but is verysmart and> > I find very sensitive to understanding most things in life. We havebeen> > having a problem since we took him off for 3 months to test over 2years> > ago. He has fought me ever since because he says he does not need it> > anymore. I have spoken with his Immunologist and she showed him hisresults> > and he still says they are wrong and he is not going to do it. Weagreed for> > awhile that we could do it at night and give him a bit more of hissleep med> > and then that became a problem because he began to refuse again. Herefuses> > EMLA or any of the sprays or lidocaine patches and pitches a hugefit and> > cries and overwhelms himself and everyone else and has even becomeviolent> > over it or sobs and or sobs and sobs about it. He bargains with me,lies and> > refusessome more. His Immunologist told me that this was asituation that> > there were NO choices until he was 18 and that I had to take him tothe ER> > if he refused . So we did that a month ago and we ended up there for4 days> > and nothing came of it. No one even talked to him about it. Thedoctor told> > him that she was going to call security and hold him down if herefused so> > he let me. ( That was really helpful to fix the problem long termLOL) Most> > weeks I bribe, barter or threaten him to get it done. Sometimes itworks and> > sometimes it does not and we are days late and it is a nightmare.> > So finally today I am hearing something new from him. I am not surehow> > much is manipulation and how much is truth but basically he saysthat he> > does not want me to do it because he thinks it is like a punishmentand it> > makes him hate me because he cannot separate that he thinks I mightdo it to> > hurt him from how much I love it. It just breaks myheart. So I amwondering> > if others have had this conversation with there kids. What kinds of> > emotional outcomes are out there with us sticking our kids everyweek. I do> > not have the answers to this today but I have told him that I willnot do> > this anymore that I am going to find another way (possibly going tothe> > Immunologists office weekly and letting them stick him and then wecan leave> > or have a home nurse ( but he says he does not want to have to thinkabout> > it at home so does not want that). He says he wants to be safe athome and> > that it does not make him feel safe to let people poke him at home.This is> > all surprising to me since I am an RN in Pediatrics AND I havealways given> > him all kinds of choices around his infusions ( he has been on themfor over> > 10 years now. IVIG for the first 7 years.) The night time stickswere his> > choice and did work for awhile but I stopped when he refused becauseI will> > not poke him in hissleep if he is refusing. So does anyone have any> > thoughts. We have tried relaxation, therapy ( which is ongoing) andjust> > talking to him about it but it is only getting worse and I feel so> > overwhelmed each week knowing that we are going to have to do itagain. ( I> > also asked him if he wanted to go back to IV and he refused and saysthat> > when he is 18 he will not do it that he would rather die.> >> > BARBIE> >> > [Non-text portions of this message have been removed]> >> >> >>> [Non-text portions of this message have been removed]>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 ---Ok, so they cant do it in the office....what about an infusion room? does your dr/hospital have a separate infusion room to give a sedative in? if he had that choice, it would not be getting admitted and being in a regular hospital room....our infusion room has internet, big screen tv, gaming systems, and they can sedate kids there. There has to be some way to help this poor kid! there has to be some answer, somewhere! valarie mom to 3 w/cvid In , Barbara Jimenez <mother5590@...> wrote: > > Yes but not for 6 mo. I called the Immunologists office this morning again and I told them where we are and the nurse said that they cannot do it in their office. And the nurses from Accreedo said that they cannot do it at the Drs. office. I informed them that we had until Friday and otherwise it will not get done. I am not going to fight him again at this point. I have grounded him and refused things and taken things away and bribed him etc etc etc and it does not work. This is a valid issue in his mind and I feel I need to respect his feelings so he can feel safe. I have also brought this to the attention of both his Psychiatrist, and Psychologists and no one seems to see the urgency. I have been fighting him for atleast a year but we have had to go to the hospital ( either mental health or regular) on 3 occasions and should have been more over this issue. Someone has to figure it out with him or they have to come up with another plan. > > BARBIE > > > > > ________________________________ > From: osdbmom <osdbmom@...> > > Sent: Monday, January 5, 2009 10:03:53 AM > Subject: Re: Lucas > > > --- > Im sorry, but that is just dumb. I know its not your fault, but saying > he is too old to sedate is ignorant. Yes, he needs to learn to > cope.....but if he cant calm down enough to learn to cope, he really > isnt getting anywhere, is he? There are adults who need to be sedated > just to go to the dentist. This is far more serious than that!! Are > you moving soon? > > valarie > mom to 3 w/cvid > > In groups (DOT) com, Barbara Jimenez <mother5590@ ...> wrote: > > > > Thanks so much for sharing your situation. I remember your daughter > going through it and how upset you were feeling. I have incredible > empathy since I have had over 28 surgeries in my life and too many > hospitalizations to count. But.... it is hard to know what to do next > with him. It has caused a lot of problems with our relationship and we > have even had to call the police a couple of times because he has > become so violent around the issues. Remember he is Bipolar so that is > another reason. But... when we were hospitalized I asked for Ativan or > something and they would not even discuss it with me. They said that > he was too old to sedate that he needed to get use to it and that they > would not sedate him at home due to the risks. I was not talking about > knocking him out only give him something to relax. I even talked to > his Psychiatrist about it but no way they said that it was up to his > other doctors. As you can see I do not have very much support here so > > that is why I am moving back up to WA state. We will get this > worked out but it sure is exhausting. I am so glad that he is able to > verbalize his needs. > > > > BARBIE > > > > > > > > > > ____________ _________ _________ __ > > From: osdbmom <osdbmom@ > > > groups (DOT) com > > Sent: Sunday, January 4, 2009 9:38:00 AM > > Subject: Re: Lucas > > > > > > --- > > Barbie, > > Im so sorry you are still struggling like this. I know I cant help, > > but I want you to know Lucas is not the only kid who feels this way. > > We offered SubQ to my 11 yr old when it was evident we needed to > > restart IVIG after a 6 month trial off. She very clearly told the drs > > the same thing.....home is a safe place, and hospital crap needs to > > stay at the hospital. They talked to her several different > > ways/approaches, and she held fast. She also has the sensory issues > > like Lucas. About a yr and a half ago Savannah went thru an awful > > depression/state of anxiety that turned into generalized anxiety about > > everything, most esp school and drs/hospital/ IVIG. At the worst, she > > would be strong enough(at 50 some lbs, lol still dont understand that) > > to need at least 4 nurses to hold her down, at one point we had to > > start papoosing her, which was also traumatizing. She would zone out > > for hours, not talking or eating. She would vomit on the nurses and me > > during the stick. We tried brushing(for the SPD), weighted blankets, > > and calming music. We tried, really, every single suggestion everyone > > ever gave us. We ended up working with a very kind developmental ped, > > who finally told me that she felt Savannah had been traumatized by her > > CVID and the treatments, and we would have to calm her down before we > > could teach her any coping techniques. She explained it to me that if > > you were in a horrible car accident, you might need to work up from > > staying in your house and holding the car keys, to standing in the > > driveway holding the car keys, to finally one day just sitting in the > > car, etc. before you could drive again. But Savannah was too > > distraught to learn any coping techniques to get her to this > > point....we couldnt calm her no matter what we did, so that we could > > make those baby steps. > > We ended up using Ativan. We used the highest dose to begin with, and > > even then, she was so used to freaking out at infusion it still took a > > long time before she could actually calm down. During the times she > > was calm, we worked thru different coping techniques and after a yr, > > started to wean down the Ativan. Now she does well without it. > > When she does have a fit, she gets mad at and blames her nurse( who > > takes it cheerfully:) and turns to me for comfort. When we considered > > SubQ, this is also one of my concerns. I dont want her to see me as > > her nurse. I want to be the one to comfort her. I just think that some > > kids personalities lend themselves well to that type of thing, and > > some kids dont. Some kids really have a hard time seperating people > > from their " roles " in the kids lives.....like having a school teacher > > come to their home....lots of SPD kids have trouble with things like > > that. > > I guess Im just saying if all else fails can you just sedate him? > > until he has enough good experiences to start learning better coping > > techniques. > > I remember when Savannah went thru this time, Barbie, it was probably > > the worst yr of my life as a parent. Its so > > exhausting.. ....overwhelming , not only for us, but for the child as > > well. He needs the IG, he knows he needs it, he hates it, he " hates " > > the person giving it, he hates the whole situation but knows he cant > > stop it.......its hard for him. > > > > valarie > > > > In groups (DOT) com, Barbara Jimenez <mother5590@ ...> wrote: > > > > > > I brought up the subject of my son Lucas who is now 13 refusing his > > treatments. ( SUB Q). He is Bipolar, ADD, Oppositional Defiant and > > Sensory Integration Issues and has other mental health issues but is > > very smart and I find very sensitive to understanding most things in > > life. We have been having a problem since we took him off for 3 > > months to test over 2 years ago. He has fought me ever since because > > he says he does not need it anymore. I have spoken with his > > Immunologist and she showed him his results and he still says they are > > wrong and he is not going to do it. We agreed for awhile that we could > > do it at night and give him a bit more of his sleep med and then that > > became a problem because he began to refuse again. He refuses EMLA or > > any of the sprays or lidocaine patches and pitches a huge fit and > > cries and overwhelms himself and everyone else and has even become > > violent over it or sobs and or sobs and sobs about it. He bargains > > with me, lies and > > > refuses some more. His Immunologist told me that this was a > > situation that there were NO choices until he was 18 and that I had to > > take him to the ER if he refused . So we did that a month ago and we > > ended up there for 4 days and nothing came of it. No one even talked > > to him about it. The doctor told him that she was going to call > > security and hold him down if he refused so he let me. ( That was > > really helpful to fix the problem long term LOL) Most weeks I bribe, > > barter or threaten him to get it done. Sometimes it works and > > sometimes it does not and we are days late and it is a nightmare. > > > So finally today I am hearing something new from him. I am not sure > > how much is manipulation and how much is truth but basically he says > > that he does not want me to do it because he thinks it is like a > > punishment and it makes him hate me because he cannot separate that he > > thinks I might do it to hurt him from how much I love it. It just > > breaks my heart. So I am wondering if others have had this > > conversation with there kids. What kinds of emotional outcomes are out > > there with us sticking our kids every week. I do not have the answers > > to this today but I have told him that I will not do this anymore that > > I am going to find another way (possibly going to the Immunologists > > office weekly and letting them stick him and then we can leave or have > > a home nurse ( but he says he does not want to have to think about it > > at home so does not want that). He says he wants to be safe at home > > and that it does not make him feel safe to let people poke him at > > home. This is > > > all surprising to me since I am an RN in Pediatrics AND I have > > always given him all kinds of choices around his infusions ( he has > > been on them for over 10 years now. IVIG for the first 7 years.) The > > night time sticks were his choice and did work for awhile but I > > stopped when he refused because I will not poke him in his sleep if he > > is refusing. So does anyone have any thoughts. We have tried > > relaxation, therapy ( which is ongoing) and just talking to him about > > it but it is only getting worse and I feel so overwhelmed each week > > knowing that we are going to have to do it again. ( I also asked him > > if he wanted to go back to IV and he refused and says that when he is > > 18 he will not do it that he would rather die. > > > > > > BARBIE > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 What I think is that over time he will " outgrow " this response and be able to talk about it and deal with it. But I have put my foot down to me just torturing him. I did not come by this lightly or over a short period of time ( lest anyone think that I just need to be tougher and believe that he should have NO choice) I am a parent who is strong and tells him that this is NO choice and has even used punishment ( remove a privilege) when he will not cooperate. But this is much deeper and for me to continue in this situation only brings resentment, hate and a sense of failure for him. I so strongly feel that our overall relationship and his self-esteem would be healthier if we can figure out a way for him to handle it better. The interesting thing is that we did do his infusions at a doctors office for 6 years from age 3-10 and he did well as " king of the day " often not even crying as we started his IV each time. ( no port) He will not go back to that. He feels he does not need it and no matter what we say he will not believe us. We may have to go off for awhile and let him get sick. We were off of 100 days when he was 10 and that is when things got worse about doing it. The Immunologist does have an infusion room but they may not get reimbursed for this situation and they are concerned that a nurse would get tied up for hours trying to get him to do it. Or tie their room up for hours that they cannot bill for if he is sedated. I know we will figure it out but I have put the ball in their court for now. BARBIE ________________________________ From: osdbmom <osdbmom@...> Sent: Monday, January 5, 2009 12:24:42 PM Subject: Re: Lucas ---Ok, so they cant do it in the office....what about an infusion room? does your dr/hospital have a separate infusion room to give a sedative in? if he had that choice, it would not be getting admitted and being in a regular hospital room....our infusion room has internet, big screen tv, gaming systems, and they can sedate kids there. There has to be some way to help this poor kid! there has to be some answer, somewhere! valarie mom to 3 w/cvid In groups (DOT) com, Barbara Jimenez <mother5590@ ...> wrote: > > Yes but not for 6 mo. I called the Immunologists office this morning again and I told them where we are and the nurse said that they cannot do it in their office. And the nurses from Accreedo said that they cannot do it at the Drs. office. I informed them that we had until Friday and otherwise it will not get done. I am not going to fight him again at this point. I have grounded him and refused things and taken things away and bribed him etc etc etc and it does not work. This is a valid issue in his mind and I feel I need to respect his feelings so he can feel safe. I have also brought this to the attention of both his Psychiatrist, and Psychologists and no one seems to see the urgency. I have been fighting him for atleast a year but we have had to go to the hospital ( either mental health or regular) on 3 occasions and should have been more over this issue. Someone has to figure it out with him or they have to come up with another plan. > > BARBIE > > > > > ____________ _________ _________ __ > From: osdbmom <osdbmom@... > > groups (DOT) com > Sent: Monday, January 5, 2009 10:03:53 AM > Subject: Re: Lucas > > > --- > Im sorry, but that is just dumb. I know its not your fault, but saying > he is too old to sedate is ignorant. Yes, he needs to learn to > cope.....but if he cant calm down enough to learn to cope, he really > isnt getting anywhere, is he? There are adults who need to be sedated > just to go to the dentist. This is far more serious than that!! Are > you moving soon? > > valarie > mom to 3 w/cvid > > In groups (DOT) com, Barbara Jimenez <mother5590@ ...> wrote: > > > > Thanks so much for sharing your situation. I remember your daughter > going through it and how upset you were feeling. I have incredible > empathy since I have had over 28 surgeries in my life and too many > hospitalizations to count. But.... it is hard to know what to do next > with him. It has caused a lot of problems with our relationship and we > have even had to call the police a couple of times because he has > become so violent around the issues. Remember he is Bipolar so that is > another reason. But... when we were hospitalized I asked for Ativan or > something and they would not even discuss it with me. They said that > he was too old to sedate that he needed to get use to it and that they > would not sedate him at home due to the risks. I was not talking about > knocking him out only give him something to relax. I even talked to > his Psychiatrist about it but no way they said that it was up to his > other doctors. As you can see I do not have very much support here so > > that is why I am moving back up to WA state. We will get this > worked out but it sure is exhausting. I am so glad that he is able to > verbalize his needs. > > > > BARBIE > > > > > > > > > > ____________ _________ _________ __ > > From: osdbmom <osdbmom@ > > > groups (DOT) com > > Sent: Sunday, January 4, 2009 9:38:00 AM > > Subject: Re: Lucas > > > > > > --- > > Barbie, > > Im so sorry you are still struggling like this. I know I cant help, > > but I want you to know Lucas is not the only kid who feels this way. > > We offered SubQ to my 11 yr old when it was evident we needed to > > restart IVIG after a 6 month trial off. She very clearly told the drs > > the same thing.....home is a safe place, and hospital crap needs to > > stay at the hospital. They talked to her several different > > ways/approaches, and she held fast. She also has the sensory issues > > like Lucas. About a yr and a half ago Savannah went thru an awful > > depression/state of anxiety that turned into generalized anxiety about > > everything, most esp school and drs/hospital/ IVIG. At the worst, she > > would be strong enough(at 50 some lbs, lol still dont understand that) > > to need at least 4 nurses to hold her down, at one point we had to > > start papoosing her, which was also traumatizing. She would zone out > > for hours, not talking or eating. She would vomit on the nurses and me > > during the stick. We tried brushing(for the SPD), weighted blankets, > > and calming music. We tried, really, every single suggestion everyone > > ever gave us. We ended up working with a very kind developmental ped, > > who finally told me that she felt Savannah had been traumatized by her > > CVID and the treatments, and we would have to calm her down before we > > could teach her any coping techniques. She explained it to me that if > > you were in a horrible car accident, you might need to work up from > > staying in your house and holding the car keys, to standing in the > > driveway holding the car keys, to finally one day just sitting in the > > car, etc. before you could drive again. But Savannah was too > > distraught to learn any coping techniques to get her to this > > point....we couldnt calm her no matter what we did, so that we could > > make those baby steps. > > We ended up using Ativan. We used the highest dose to begin with, and > > even then, she was so used to freaking out at infusion it still took a > > long time before she could actually calm down. During the times she > > was calm, we worked thru different coping techniques and after a yr, > > started to wean down the Ativan. Now she does well without it. > > When she does have a fit, she gets mad at and blames her nurse( who > > takes it cheerfully:) and turns to me for comfort. When we considered > > SubQ, this is also one of my concerns. I dont want her to see me as > > her nurse. I want to be the one to comfort her. I just think that some > > kids personalities lend themselves well to that type of thing, and > > some kids dont. Some kids really have a hard time seperating people > > from their " roles " in the kids lives.....like having a school teacher > > come to their home....lots of SPD kids have trouble with things like > > that. > > I guess Im just saying if all else fails can you just sedate him? > > until he has enough good experiences to start learning better coping > > techniques. > > I remember when Savannah went thru this time, Barbie, it was probably > > the worst yr of my life as a parent. Its so > > exhausting.. ....overwhelming , not only for us, but for the child as > > well. He needs the IG, he knows he needs it, he hates it, he " hates " > > the person giving it, he hates the whole situation but knows he cant > > stop it.......its hard for him. > > > > valarie > > > > In groups (DOT) com, Barbara Jimenez <mother5590@ ...> wrote: > > > > > > I brought up the subject of my son Lucas who is now 13 refusing his > > treatments. ( SUB Q). He is Bipolar, ADD, Oppositional Defiant and > > Sensory Integration Issues and has other mental health issues but is > > very smart and I find very sensitive to understanding most things in > > life. We have been having a problem since we took him off for 3 > > months to test over 2 years ago. He has fought me ever since because > > he says he does not need it anymore. I have spoken with his > > Immunologist and she showed him his results and he still says they are > > wrong and he is not going to do it. We agreed for awhile that we could > > do it at night and give him a bit more of his sleep med and then that > > became a problem because he began to refuse again. He refuses EMLA or > > any of the sprays or lidocaine patches and pitches a huge fit and > > cries and overwhelms himself and everyone else and has even become > > violent over it or sobs and or sobs and sobs about it. He bargains > > with me, lies and > > > refuses some more. His Immunologist told me that this was a > > situation that there were NO choices until he was 18 and that I had to > > take him to the ER if he refused . So we did that a month ago and we > > ended up there for 4 days and nothing came of it. No one even talked > > to him about it. The doctor told him that she was going to call > > security and hold him down if he refused so he let me. ( That was > > really helpful to fix the problem long term LOL) Most weeks I bribe, > > barter or threaten him to get it done. Sometimes it works and > > sometimes it does not and we are days late and it is a nightmare. > > > So finally today I am hearing something new from him. I am not sure > > how much is manipulation and how much is truth but basically he says > > that he does not want me to do it because he thinks it is like a > > punishment and it makes him hate me because he cannot separate that he > > thinks I might do it to hurt him from how much I love it. It just > > breaks my heart. So I am wondering if others have had this > > conversation with there kids. What kinds of emotional outcomes are out > > there with us sticking our kids every week. I do not have the answers > > to this today but I have told him that I will not do this anymore that > > I am going to find another way (possibly going to the Immunologists > > office weekly and letting them stick him and then we can leave or have > > a home nurse ( but he says he does not want to have to think about it > > at home so does not want that). He says he wants to be safe at home > > and that it does not make him feel safe to let people poke him at > > home. This is > > > all surprising to me since I am an RN in Pediatrics AND I have > > always given him all kinds of choices around his infusions ( he has > > been on them for over 10 years now. IVIG for the first 7 years.) The > > night time sticks were his choice and did work for awhile but I > > stopped when he refused because I will not poke him in his sleep if he > > is refusing. So does anyone have any thoughts. We have tried > > relaxation, therapy ( which is ongoing) and just talking to him about > > it but it is only getting worse and I feel so overwhelmed each week > > knowing that we are going to have to do it again. ( I also asked him > > if he wanted to go back to IV and he refused and says that when he is > > 18 he will not do it that he would rather die. > > > > > > BARBIE > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.