Guest guest Posted August 18, 1999 Report Share Posted August 18, 1999 Quentin, Thanks for the information, no we did not know about the info on antioxidants. Where would you be able to get info on the article? Yes have heard about the group but have never looked into. Any further info would greatly be appreciated. Thanks for being so well versed in the different associated disorders. Hope Matt is feeling better. We continue to keep you all in our thoughts and prayers! sincerely, annette and alissa cvid,asthmatic,ataxia > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Annette >Date: Wed, 18 Aug 1999 18:28:40 -0400 > > > >Annette, have you seen the (AP) story on A-T? The story relates >antioxidants as a possible aid in combating A-T. The information is from >the A-T Children's Project. Have you heard of them? Evidently the >research comes from California's Salk Institute for Biological Studies. > >Quentin Seals >Matt's dad ?XLA? > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 Annette: Matt has struggled with feelings of depression most of his school age life. In 5th grade Matt expressed such feelings. He has had an ongoing relationship with a psychologist on and off for years. Matts feelings come and go and for the past month of illness I can honestly say that he is on the emotional down again. At one time we discussed antideppresants. It never got to that stage. Support from all those involved with him helped. Although, at the time he was so miserable I sometimes wanted relief. I do not mean to pass judgment with any of this. We try the best we possibly can with our children who pull at us in so many directions. I have noticed that certain medications have a mood impact on Matt. If possible I avoid them. I know that being sick affects my mood. I can only imagine what being sick all your life does to our kids. Me I overcompensate in ways. I buy things and do things (trips) and such while ever ignoring my bills. Sometimes that works. Other times it wears on me. Good luck. You are in my prayers. Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 Annette, I too agree w/ about self control....Here's a post from earlier that I wrote. You may have already read it, but it may hit home a little more now....we'll keep her and you in our prayers....and remember, you are truly doing your best...that's all we can do... For Zach, he's excellent at self control of his health. Today we went with a group to the movies and out for pizza. Upon entering, Zach said Mom, I need to go wash my hands....then, I sat with the adults and let Zach be on his own with his buddies.....I watched him take all the cheese off his pizza.....then at one point he called me over and asked for another glass, I asked why since he still has 3/4 glass of water in his cup, he said, well Ben accidently picked up his drink and drank some....ALL of this was done with no prompting from me....He's pretty much in control, wouldn't you say?...Zach is self medicated w/his GERD meds, buy that I mean we don't give scheduled doses, only on an as need basis, so he tells me when he needs it and I give it to him then... As for the other stuff, sometimes when he has to take meds, he'll deny feeling sick, but when he feels sick he gives me no hassle....cleaning out his sinuses nightly is no problem, he gets immediate gratification, his noes is unstuffed afterwards...This last time he ended up in the hospital, he asked to go. He said that he felt so bad and maybe the Dr. could help. This one blew Tom & I away, he had only been vomitting for about 2 hrs (and believe me this kid's experienced w/vomit), we made no mention of the Dr or hospital, but when he asked, we jumped (but after Zach asked he did ask us " what " the dr. would do, I said prob. an IV, and Zach shook his head & said that can't be worse than he feels now)...And as for the IVIG, I'm not too sure he fully understands it but he know it makes him feel better, his grandpa(my FIL) was in the hospital a couple weeks ago and he asked grandps if they gave him IVIG, grandpa said no and Zach said well you should ask the Dr. for it, it really makes me feel better........but all this was a long hard road we traveled on to get here.....there were two major revelations that I came upon to lead me down the right path, Start with the basics...wash hands with soap for 10 seconds....give lesson on never ever drink out of someone elses cup....don't share food....and you don't have to give any long lengthy explanations, just a simple absolute....you must do it all the time!!! 1st revelation......As for the food thing, the Dr. that told me, this was my child's illness not mine, well he said to give the control to Zach, just little bits at a time...he said that we are born with the instincts(or whatever you want to call it) to be in tune with your body. But for some reason through the years and into adulthood we train our bodies to ignore the tunes. for instance...infants eat when they're hungry sleep when tired etc... but as adults, do we go to sleep when we're tired, etc...Here's what we did to aliviate the battles over foods...I would make sure that Zach had a good day or 2 of healthy eating, then when he would ask for smthg he " couldn't have " I would let him have it, but I would tell him, when he gets sick later, I don't want to hear about it...He'd eat it, get sick, and I'ld give him the I told-you so speech... Somethings it took 2 or 3 I told you so episodes, and other things he would not dare touch again, but the point was to allow him to see the cause/effect. Give him control. Make it at lifstyle thing for himself instead of a battle of " what my mom said I CAN'T have " . I realize that you cannot do this with all children, some have more severe reactions than just vomit. But the biggest thing I gained from Zach is TRUST. Somewhere along the long hard struggle, I realized that my child did not trust me...Take this med. it'll make you better...wash your hands so you don't get sick...and then the meds didn't work or he still got sick, he would feel angry...So this process helped me regain Zach's trust in my judgement.... 2nd revelation....I have a friend that has had severe diabetes since birth, (he reciently had a pancreas & kidney transplant and is diabetes free yea!!!!). His mom was very concerned about his health growing up. He had many hospitilizations, suffered seizures, Immune system troubles and the list goes on...I invisioned myself as his mom 35 yrs ago, Zach as him... I asked him how he felt about his Mom now....sadly he says He loves her dearly but resents her more than he loves her....I asked him, now that you have a child of your own, don't you see that your mom was doing the best for you? To protect you? Because she loved you? And he said that rationally he understands but sees all the things he missed out on, all the embarassment of having people finding out that he was " ill " . He said that alls he wanted was to be treated like everyone else. He asked me, how many times have you in your life been drinking, or smoking, or overeating, or driving too fast, and you said to your self, I shouldn't do this....but didn't stop, consciously accepting the conseqeunces? I said several, all the time, and he said well I never got that chance! someone was always looking over my shoulder, making my decisions for me. Don't I deserve the chance to do it once in a while, make a conscious decision to have thet next drink, or bite etc? But when I do these things, I'm viewed as irresponsible, not taking care of myself....Our conversation went on for hours, him explaining his feelings and me rationalizing his mom's actions...In the end I asked him how would you handle this if you were me, so that Zach isn't going to grow up resenting me?... and he said plainly and simply, give Zach control of himself, teach him how to be healthy instead of dictating the " musts " and " can'ts " . Don't under estimate his abilities. Always assume he can handle the situation and if he has difficulties, ask him if he wants help, instead if jumping in taking over. He also added (I've shared this one w/the group before) that I should never ever hold him down during procedures. Have the nurses do it, because he hates his mom for that. He said that he realizes that the things needed to be done, but he wanted his mom to love him not hold him down....He does have a good relationship with his mother but he has never voiced his feelings to her either...doesn't want to hurt her.... So the morale of the story is I hope that Zach never admits that certain aspects of his illness will interfere with his life, or admit that he has a chronic disease...I want him to fighter...because I feel admitting those things would be giving up the fight, instead I want him to realize that his illness is a " hurdle " , something to be aware of but not let it get in the way. I am by no means saying that they should deny the illness, but just know how to approach it, how to deal with it, to live around it....Look at ! She is the perfect example! Sorry this was so long, but I feel it's an important thing to know as a caregiver of a chronicly ill child. Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 Annette, Just curious..... Is Alissa on any Reflux meds? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 1999 Report Share Posted October 12, 1999 Annette, Just checked out the healing kids site you described. It looks great... wondering, though, if it's a PID support, or HIV/AIDS, or if they care. Have you heard anything back? By the way, where did you find the link? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 : Thank you for all your sage advice, I now understand about the serotonin levels. the psychologist did not explain it the way you did. I am printing a copy of your advice and taking it with us to the peds doctor this morning with your suggestions I hope you don't mind. We did have a group on base for the efmp kids but only for adults. my daughter is not aloud. I will let you know what happens and think you will make a wonderful insightful physician. God Bless and thanks for sharing, annette and alissa > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Annette >Date: Tue, 12 Oct 1999 13:12:53 +0000 > >Annette, > >The symptoms of lidocaine toxicity are almost always heart >irregularities, rapid heart beat, and sometimes blood pressure drops. >It's rare, but our professor said he has seen it happen when kids come >in " coated " in EMLA. > >As for depression, please don't consider yourself a bad mom. Chronic >illness in anyone can cause depression -- no matter how good an attitude >you have, how " strong " you are, and how much support you have in your >life. Being sick physically messes with the brain chemicals. There are >studies to show that people who are sick have lower levels of serotonin >than they did before they got sick (and lower than other non-sick people >of the same age group). She is a growing up, and that's difficult >enough for anyone, not to mention someone dealing with not feeling well, >visiting doctors all the time, undergoing painful procedures, etc. > >A few potential suggestions (if you don't mind me sharing -- just ignore >if they're not helpful). I think the medication can be a good idea - >there is a true chemical imbalance caused by illness, and sometimes the >only way to restore that balance is through medication (it usually just >takes a short time to kick in, and then when she's feeling better, it >will change the outlook on other things enough to put them in a better >frame of reference). Also, perhaps any sort of children's support >group. I know you see a psychologist, but sometimes I think that can >make a child feel even more isolated (like they're the only one who has >to go through this illness,and they're the only one they know who has to >go talk to a doctor about it, too). Whether it's general medical >illness, cancer, an IDF group, etc.... I think it can be so helpful to >talk to others. Also, I know Ursula had suggested maybe getting a few >of the older kids to chat with each other online -- maybe that would >help them to know they're not alone. And finally... this may sound >odd... but give her as much control as possible in telling you when she >needs her meds - or put her in control of taking the meds. And when you >go to the doctor, have her talk to the doctor more than you. I know >that sounds like a lot for a kid to handle, but I found growing up that >the more I was in control of my body and what people did to it, and the >more I knew so that I could be involved in the choices made, the >stronger I felt. And then it became a source of self-esteem, that I >could handle the things that other kids can, WHILE I could also take >care of my physical needs. It's not perfect, and I won't kid anyone by >saying that this disease and its complications doesn't get me down >sometimes, but I just wanted to share some things that have helped me. >I know this is a scary time - it can never be easy to hear your child >say she doesn't want to be alive. But I hope that you guys can work >together to help her re-frame this... to show her how STRONG she is >because of what she's dealt with, and how much she'll someday be able to >give back to other kids and to the world because of the very unique >perspective she'll have on what it means to be a child, and what it >means to be a child with an illness. Please tell her I'm thinking of >her - I know what she's gone through, and I am still going through it. >Things can always get better and they can always get worse, and the only >true touchpoints are your family, and your own belief in yourself that >you can handle this and become a stronger person for it. If it would >help, give her my email address... I'd be happy to " chat " with her. > >Please give her a hug from me. (And give yourself one, too -- you've >fought tooth and nail to make her life as amazing as possible within the >circumstances, and that work deserves a medal -- for you and all the >other moms of pumpkins out there). > >Take care, > > >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 , Thanks for all the advice, we are working on the issue of her taking responsibility of her meds now and taking care of herself, there are times when she will tell me she cannot control her outburst of emotion and we are working on that. I am into totally making her responsible for as much as she can handle. But even with the school issue she wanted to stay at home and not interact with other kids and I pushed her into half a day and feel it is so important to have that other contact with children her age. She will come with me to work when I work with my brother and she will keep busy doing her crafts and other things and she enjoys being around her uncle and he is trying also to reach her. Which is pretty good for a trauma physician who does not have children and I tell her she can be just like him but work very hard to achieve it. I will take your advice and take one day at a time and try and do what you have done with Zach, thanks for caring, and you are truly right I think is a testiment for all our kids and hope they all follow her example! sincerely, annette and alissa > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: Annette >Date: Tue, 12 Oct 1999 20:39:06 -0400 > >Annette, > >I too agree w/ about self control....Here's a post from earlier >that >I wrote. You may have already read it, but it may hit home a little more >now....we'll keep her and you in our prayers....and remember, you are truly >doing your best...that's all we can do... > > > > >For Zach, he's excellent at self control of his health. Today we went with >a group to the movies and out for pizza. Upon entering, Zach said Mom, I >need to go wash my hands....then, I sat with the adults and let Zach be on >his own with his buddies.....I watched him take all the cheese off his >pizza.....then at one point he called me over and asked for another glass, >I >asked why since he still has 3/4 glass of water in his cup, he said, well >Ben accidently picked up his drink and drank some....ALL of this was done >with no prompting from me....He's pretty much in control, wouldn't you >say?...Zach is self medicated w/his GERD meds, buy that I mean we don't >give >scheduled doses, only on an as need basis, so he tells me when he needs it >and I give it to him then... As for the other stuff, sometimes when he has >to take meds, he'll deny feeling sick, but when he feels sick he gives me >no >hassle....cleaning out his sinuses nightly is no problem, he gets immediate >gratification, his noes is unstuffed afterwards...This last time he ended >up >in the hospital, he asked to go. He said that he felt so bad and maybe the >Dr. could help. This one blew Tom & I away, he had only been vomitting for >about 2 hrs (and believe me this kid's experienced w/vomit), we made no >mention of the Dr or hospital, but when he asked, we jumped (but after Zach >asked he did ask us " what " the dr. would do, I said prob. an IV, and Zach >shook his head & said that can't be worse than he feels now)...And as for >the IVIG, I'm not too sure he fully understands it but he know it makes >him >feel better, his grandpa(my FIL) was in the hospital a couple weeks ago and >he asked grandps if they gave him IVIG, grandpa said no and Zach said well >you should ask the Dr. for it, it really makes me feel better........but >all >this was a long hard road we traveled on to get here.....there were two >major revelations that I came upon to lead me down the right path, > >Start with the basics...wash hands with soap for 10 seconds....give lesson >on never ever drink out of someone elses cup....don't share food....and you >don't have to give any long lengthy explanations, just a simple >absolute....you must do it all the time!!! > >1st revelation......As for the food thing, the Dr. that told me, this was >my >child's illness not mine, well he said to give the control to Zach, just >little bits at a time...he said that we are born with the instincts(or >whatever you want to call it) to be in tune with your body. But for some >reason through the years and into adulthood we train our bodies to ignore >the tunes. for instance...infants eat when they're hungry sleep when tired >etc... but as adults, do we go to sleep when we're tired, etc...Here's what >we did to aliviate the battles over foods...I would make sure that Zach had >a good day or 2 of healthy eating, then when he would ask for smthg he > " couldn't have " I would let him have it, but I would tell him, when he gets >sick later, I don't want to hear about it...He'd eat it, get sick, and I'ld >give him the I told-you so speech... Somethings it took 2 or 3 I told you >so >episodes, and other things he would not dare touch again, but the point was >to allow him to see the cause/effect. Give him control. Make it at >lifstyle >thing for himself instead of a battle of " what my mom said I CAN'T have " . >I realize that you cannot do this with all children, some have more severe >reactions than just vomit. But the biggest thing I gained from Zach is >TRUST. Somewhere along the long hard struggle, I realized that my child >did >not trust me...Take this med. it'll make you better...wash your hands so >you >don't get sick...and then the meds didn't work or he still got sick, he >would feel angry...So this process helped me regain Zach's trust in my >judgement.... > >2nd revelation....I have a friend that has had severe diabetes since birth, >(he reciently had a pancreas & kidney transplant and is diabetes free >yea!!!!). His mom was very concerned about his health growing up. He had >many hospitilizations, suffered seizures, Immune system troubles and the >list goes on...I invisioned myself as his mom 35 yrs ago, Zach as him... I >asked him how he felt about his Mom now....sadly he says He loves her >dearly >but resents her more than he loves her....I asked him, now that you have a >child of your own, don't you see that your mom was doing the best for you? >To protect you? Because she loved you? And he said that rationally he >understands but sees all the things he missed out on, all the embarassment >of having people finding out that he was " ill " . He said that alls he >wanted >was to be treated like everyone else. He asked me, how many times have you >in your life been drinking, or smoking, or overeating, or driving too fast, >and you said to your self, I shouldn't do this....but didn't stop, >consciously accepting the conseqeunces? I said several, all the time, and >he said well I never got that chance! someone was always looking over my >shoulder, making my decisions for me. Don't I deserve the chance to do it >once in a while, make a conscious decision to have thet next drink, or bite >etc? But when I do these things, I'm viewed as irresponsible, not taking >care of myself....Our conversation went on for hours, him explaining his >feelings and me rationalizing his mom's actions...In the end I asked him >how >would you handle this if you were me, so that Zach isn't going to grow up >resenting me?... and he said plainly and simply, give Zach control of >himself, teach him how to be healthy instead of dictating the " musts " and > " can'ts " . Don't under estimate his abilities. Always assume he can handle >the situation and if he has difficulties, ask him if he wants help, instead >if jumping in taking over. He also added (I've shared this one w/the group >before) that I should never ever hold him down during procedures. Have the >nurses do it, because he hates his mom for that. He said that he realizes >that the things needed to be done, but he wanted his mom to love him not >hold him down....He does have a good relationship with his mother but he >has >never voiced his feelings to her either...doesn't want to hurt her.... > >So the morale of the story is I hope that Zach never admits that certain >aspects of his illness will interfere with his life, or admit that he has a >chronic disease...I want him to fighter...because I feel admitting those >things would be giving up the fight, instead I want him to realize that his >illness is a " hurdle " , something to be aware of but not let it get in the >way. I am by no means saying that they should deny the illness, but just >know how to approach it, how to deal with it, to live around it....Look at >! She is the perfect example! > >Sorry this was so long, but I feel it's an important thing to know as a >caregiver of a chronicly ill child. > > >Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, >chronic sinusitis, IVIG, > > >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 , yes she is, off and on zantac and prilosec, especially when she is on antibiotic, why do you ask? annette and alissa > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: annette >Date: Tue, 12 Oct 1999 20:47:08 -0400 > >Annette, > >Just curious..... Is Alissa on any Reflux meds? > > > > >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
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