Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Dear Marlys, You are doing just GREAT!!! It all sounds so familiar to me - the telling the teachers who don't really believe you until you bring in the words " doctor " , " psychiatrist " " diagnosis " , etc. In my experience that has made all the difference in the world. Also the part about daydreaming and not paying attention... we have been dealing with that all fall. My daughter spends a huge amount of energy trying to appear normal, as all OCD kids do, and her teacher thinks she is being deliberately disobedient and/or ADDish. It's so hard. It sounds to me as if that teacher will try harder now - I hope so. One thing I have come to realize is just how little teachers know about anything other than " normal " behavior. I have always assumed they would be a bit more knowledgable. I have recently learned that in our state, teachers have one course on special ed which consists of one chapter in a book - giftedness is covered in a couple of SENTENCES and they learn nothing about kids with problems like OCD. Not even where to go for further information. Geez. I doubt that any state is quite as lame as Nevada in this respect, but it does explain why they just seem so dim sometimes!! I've been fighting this battle about giftedness forever (if she qualifies for gifted education, why doesn't she get straight A's and do everything perfectly??) and I expect the OCD battles will just get worse as time goes on. Hang in there - you''ll get more courageous as time goes on!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 , Thank you for your reply. It does help me become more courageous to hear from others who have also " fought the school battle " . Sometimes I have to hear it over and over and over... :-) It baffles me too why school personnel can't understand that a very bright student couldn't also have OCD/TS... would they think a gifted student couldn't have diabetes or asthma? It's weird, but I guess there is a different stigma to OCD, so I am starting to educate anyone who will listen. Already, my co-workers are avoiding me... think anyone in my extended family will talk to me at Thanksgiving? :-) Just kidding. Actually, most people are well-meaning, just ignorant, as I was. Marlys > Dear Marlys, > You are doing just GREAT!!! It all sounds so familiar to me - the > telling the teachers who don't really believe you until you bring in the > words " doctor " , " psychiatrist " " diagnosis " , etc. In my experience that has > made all the difference in the world. Also the part about daydreaming and not > paying attention... we have been dealing with that all fall. My daughter > spends a huge amount of energy trying to appear normal, as all OCD kids do, > and her teacher thinks she is being deliberately disobedient and/or ADDish. > It's so hard. It sounds to me as if that teacher will try harder now - I hope > so. > One thing I have come to realize is just how little teachers know > about anything other than " normal " behavior. I have always assumed they would > be a bit more knowledgable. I have recently learned that in our state, > teachers have one course on special ed which consists of one chapter in a > book - giftedness is covered in a couple of SENTENCES and they learn nothing > about kids with problems like OCD. Not even where to go for further > information. Geez. I doubt that any state is quite as lame as Nevada in this > respect, but it does explain why they just seem so dim sometimes!! I've been > fighting this battle about giftedness forever (if she qualifies for gifted > education, why doesn't she get straight A's and do everything perfectly??) > and I expect the OCD battles will just get worse as time goes on. > Hang in there - you''ll get more courageous as time goes on!! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Wow, ls! Even though you asked for suggests/comments, I can't find ONE thing in this post to suggest that you need 'help' or didn't go in with a MISSION - and accomplished it! You're doing just fine!! And of course you did the right thing. used to tell me all the time NOT to talk to his teachers (in high school) but I'm glad I did. It made ALL the difference. When teachers know that there is a parent paying CLOSE attention to their child's performance in school, they suddenly change. Good for you and keep up the good work! Your courage has reminded me of my favorite quote (below). Joni " Courage is not the absense of fear. It's the making of action in SPITE of fear. The moving out against the resistance engendered by fear, into the unknown... and into the future. " M. Peck (from 'The Road Less Traveled') > ........Anyway, this may backfire, and that is why didn't want me to > talk to him (might make it worse), but I thought if I were the > teacher, I would want to know. He did ask to call me back in a week, > which indicates to me that he is willing to change his behavior and > work with us on this... I pray a lot... > Comments anyone... did I do the right thing?> > > Thanks for any help/suggestions/encouragement... > Marlys in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Joni, Thanks for your encouragement. I really need it cuz this was HARD for me. Even though it went pretty well, I cried for a while afterward... all this emotion in me... has to go somewhere. Anyway, I don't know if you had posted it recently or if I saw the quote on " courage " somewhere else... but it's a great one for me, and was actually one of the things (along with the serenity prayer) that spurred me to action. So, thanks! That makes sense also about the teacher being more careful if he knows a parent is keeping close tabs on the situation. I will find out tonight what he said to in class today... hope it went ok. Marlys > > > ........Anyway, this may backfire, and that is why didn't > want me to > > talk to him (might make it worse), but I thought if I were the > > teacher, I would want to know. He did ask to call me back in a > week, > > which indicates to me that he is willing to change his behavior and > > work with us on this... I pray a lot... > > Comments anyone... did I do the right thing?> > > > > Thanks for any help/suggestions/encouragement... > > Marlys in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Hi Marlys, I'm glad the teacher is coming around. I, too, had to learn to be more outspoken. Now my kids, especially my 16 y/o, fear what I'll say to anyone! At school meetings though, I basically don't do well when I meet resistance; e.g., having to show how he arrived at his math answer - he does a lot of math in his head and sometimes can't really write it down how he got it; I wanted this requirement removed for him but the math teacher won out - he has to show his work. But most everything else worked out great! You're doing great and I'm sure the teacher will work with you both now. I agree with about the social skills bit. Like you said, it's amazing what an official diagnosis can do regarding school issues! Have everything you want to talk about written down so you can refer to it (or depending on how you write it up, you could give a copy to each person at the meeting); have written down exactly what you want from the school regarding class; e.g., sitting at the front of the class to cut down on distractions, things like that. It's hard too, when the school sees them making A's so doesn't see the reason for a 504/IEP. Will go to the meeting too? Apparently all her other teachers or classes are no problem for her but this should set everything up for the upcoming years! You probably have some/these, but here's a couple sites that might help re the education part, things you could print out and highlight: http://www.tourettesyndrome.net/education.htm This site has OCD education/school stuff too. http://www.schoolpsychology.net/ Good luck and keep us all posted!! > Hi all! > I haven't posted for a while and want update you, ask for > encouragement, and welcome the newcomers to the list - welcome!! I am > Marlys in SC, solitary parent to , 16-yo in the 10th grade with > Tourette's, OCD, and sensory sensitivities. > > I can't remember when I last wrote, but school is the toughest part of > 's life, particularly her Biology teacher/class. Yesterday, > when she was watching a nature movie (which she likes), she was > shielding her eyes from nervous movements that are triggers for her > tics/compulsions. The teacher told her not to do this, and threatened > her with ISS. (These situations have been ongoing and escalating.) > was so frustrated that she did everything in her power to not > blurt out something to him, and just glared at him. When she told me > about this, she seemed about to explode - literally. Well, I told her > this was unfair, and that it was beyond what she could deal with by > herself, and that I would talk to him (again). I had talked to him at > the beginning of the semester, explaining her nbd's, triggers, etc., > and it didn't seem to help. He is skeptical of giving her " special " > treatment, cuz she gets A's - sheesh! > > Well, in the past weeks I have been in contact with the psychiatrist > from last year, got a letter of diagnosis from her, including > recommendations for school accomodations. I am now awaiting a call > back from the school counselor. I plan to meet with her, and request > a 504. ( I really don't know what I'm doing... but need to learn to > be a better advocate for . Courage is not my strong suit... so > you guys are a lot of help.) > > OK, so I spoke with the Biology teacher this morning. There are a lot > of weird things about him personally, and I think he's barely a > mediocre teacher, probably burned-out, has poor social skills, BUT I > don't think he is a bad or cruel person... or at least I hope not. I > asked for his take on yesterday, and he said that day- dreams a > lot (this from a kid who expends a tremendous amount of energy each > day to try to LOOK normal), and that she refused to watch the film! I > explained that even though that was how it LOOKED to him, that this is > not at all what was really going on with her. I told him that I now > had the doctor's diagnosis, and wow! - what a difference that makes > over a lowly MOM saying her child has nbd's. So, now he starts > apologizing, and saying he will apologize to her in case if he hurt > her feelings, NOW THAT HE KNOWS... well why did I bother talking to > him in August?!? (He again brought up that she is doing well - > getting a 97 - that's not the point... I'm concerned about her sanity, > safety, health!!! what good will an A do her if she kills herself?) > Anyway, this may backfire, and that is why didn't want me to > talk to him (might make it worse), but I thought if I were the > teacher, I would want to know. He did ask to call me back in a week, > which indicates to me that he is willing to change his behavior and > work with us on this... I pray a lot... > Comments anyone... did I do the right thing? > > Also, even though the psychiatrist didn't know any therapists (nearby) > experienced in treating OCD, I started calling around and am meeting > with one soon who sounds promising... I don't know if I can talk > into therapy, but I thought I'd at least meet with her, and go > from there. > > Thanks for any help/suggestions/encouragement... > Marlys in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Hi at least you can be with the family , my girl and i have to be away from the family due to my daughters problem, its wierd ive never been away from the family on holidays Patty in calif, bye Re: update on , Thank you for your reply. It does help me become more courageous to hear from others who have also " fought the school battle " . Sometimes I have to hear it over and over and over... :-) It baffles me too why school personnel can't understand that a very bright student couldn't also have OCD/TS... would they think a gifted student couldn't have diabetes or asthma? It's weird, but I guess there is a different stigma to OCD, so I am starting to educate anyone who will listen. Already, my co-workers are avoiding me... think anyone in my extended family will talk to me at Thanksgiving? :-) Just kidding. Actually, most people are well-meaning, just ignorant, as I was. Marlys > Dear Marlys, > You are doing just GREAT!!! It all sounds so familiar to me - the > telling the teachers who don't really believe you until you bring in the > words " doctor " , " psychiatrist " " diagnosis " , etc. In my experience that has > made all the difference in the world. Also the part about daydreaming and not > paying attention... we have been dealing with that all fall. My daughter > spends a huge amount of energy trying to appear normal, as all OCD kids do, > and her teacher thinks she is being deliberately disobedient and/or ADDish. > It's so hard. It sounds to me as if that teacher will try harder now - I hope > so. > One thing I have come to realize is just how little teachers know > about anything other than " normal " behavior. I have always assumed they would > be a bit more knowledgable. I have recently learned that in our state, > teachers have one course on special ed which consists of one chapter in a > book - giftedness is covered in a couple of SENTENCES and they learn nothing > about kids with problems like OCD. Not even where to go for further > information. Geez. I doubt that any state is quite as lame as Nevada in this > respect, but it does explain why they just seem so dim sometimes!! I've been > fighting this battle about giftedness forever (if she qualifies for gifted > education, why doesn't she get straight A's and do everything perfectly??) > and I expect the OCD battles will just get worse as time goes on. > Hang in there - you''ll get more courageous as time goes on!! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 In a message dated 10/26/01 4:55:50 PM Pacific Daylight Time, pattymanzanares@... writes: > Hi at least you can be with the family , my girl and i have to be away from > the family due to my daughters problem Stay Strong Patty, Your not alone. Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2001 Report Share Posted October 27, 2001 Dear jana thats my problem now im not strong i have so many other concrns in my life to deal with, i dont know where to turn to first,, thanks your sweet Jana patty in calif, Re: Re: update on In a message dated 10/26/01 4:55:50 PM Pacific Daylight Time, pattymanzanares@... writes: > Hi at least you can be with the family , my girl and i have to be away from > the family due to my daughters problem Stay Strong Patty, Your not alone. Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2001 Report Share Posted October 27, 2001 what is a 504 plan, please reply patty in calif, pattymanzanares@... update on Hi all! I haven't posted for a while and want update you, ask for encouragement, and welcome the newcomers to the list - welcome!! I am Marlys in SC, solitary parent to , 16-yo in the 10th grade with Tourette's, OCD, and sensory sensitivities. I can't remember when I last wrote, but school is the toughest part of 's life, particularly her Biology teacher/class. Yesterday, when she was watching a nature movie (which she likes), she was shielding her eyes from nervous movements that are triggers for her tics/compulsions. The teacher told her not to do this, and threatened her with ISS. (These situations have been ongoing and escalating.) was so frustrated that she did everything in her power to not blurt out something to him, and just glared at him. When she told me about this, she seemed about to explode - literally. Well, I told her this was unfair, and that it was beyond what she could deal with by herself, and that I would talk to him (again). I had talked to him at the beginning of the semester, explaining her nbd's, triggers, etc., and it didn't seem to help. He is skeptical of giving her " special " treatment, cuz she gets A's - sheesh! Well, in the past weeks I have been in contact with the psychiatrist from last year, got a letter of diagnosis from her, including recommendations for school accomodations. I am now awaiting a call back from the school counselor. I plan to meet with her, and request a 504. ( I really don't know what I'm doing... but need to learn to be a better advocate for . Courage is not my strong suit... so you guys are a lot of help.) OK, so I spoke with the Biology teacher this morning. There are a lot of weird things about him personally, and I think he's barely a mediocre teacher, probably burned-out, has poor social skills, BUT I don't think he is a bad or cruel person... or at least I hope not. I asked for his take on yesterday, and he said that day-dreams a lot (this from a kid who expends a tremendous amount of energy each day to try to LOOK normal), and that she refused to watch the film! I explained that even though that was how it LOOKED to him, that this is not at all what was really going on with her. I told him that I now had the doctor's diagnosis, and wow! - what a difference that makes over a lowly MOM saying her child has nbd's. So, now he starts apologizing, and saying he will apologize to her in case if he hurt her feelings, NOW THAT HE KNOWS... well why did I bother talking to him in August?!? (He again brought up that she is doing well - getting a 97 - that's not the point... I'm concerned about her sanity, safety, health!!! what good will an A do her if she kills herself?) Anyway, this may backfire, and that is why didn't want me to talk to him (might make it worse), but I thought if I were the teacher, I would want to know. He did ask to call me back in a week, which indicates to me that he is willing to change his behavior and work with us on this... I pray a lot... Comments anyone... did I do the right thing? Also, even though the psychiatrist didn't know any therapists (nearby) experienced in treating OCD, I started calling around and am meeting with one soon who sounds promising... I don't know if I can talk into therapy, but I thought I'd at least meet with her, and go from there. Thanks for any help/suggestions/encouragement... Marlys in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2001 Report Share Posted October 27, 2001 Hi Patty, I have been reading your posts for a while now and and want to assure you that YOU ARE STRONG. If you know that being with family will not have a good effect on your daughter, then you are strong because you realize it! You are strong because you are reaching out for help for both you and your daughter. You are strong because you have had the ability to share some things that many many others would not because they might be ashamed or wonder what others might say or think about them. You have been able to face all that is happening to yourself and Shauna and ask for help in the areas that you do not know about. You are so open and honest to our suggestions and you want to make a difference in your daughters life....a weak person would not be able or willing to do this! You might be feeling kind of worn out now....I experience that often myself! But never lose sight of the fact that YOU ARE STRONG!!!!! On another note, have you tried getting some type of vibrating alarmed watch that Shauna could wear to be that might be of help in getting her up in the morning? in Southeastern PA patricia manzanares <pattymanzanares@...> wrote: Dear jana thats my problem now im not strong i have so many other concrns in my life to deal with, i dont know where to turn to first,, thanks your sweet Jana patty in calif, Re: Re: update on In a message dated 10/26/01 4:55:50 PM Pacific Daylight Time, pattymanzanares@... writes: > Hi at least you can be with the family , my girl and i have to be away from > the family due to my daughters problem Stay Strong Patty, Your not alone. Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2001 Report Share Posted October 28, 2001 Dear , thank you so much for your kind words, you dont know how good it made me feel, your such a good person to take the time to write what you did, anyway thank you, im going to put this on my dresser and every time i feel weak with myself im going to read it hah hah thank you Patty in calif Re: Re: update on In a message dated 10/26/01 4:55:50 PM Pacific Daylight Time, pattymanzanares@... writes: > Hi at least you can be with the family , my girl and i have to be away from > the family due to my daughters problem Stay Strong Patty, Your not alone. Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Thanks for you support and suggestions. I do appreciate that. I'm expecting a call back from the school counselor today... will let you know how things go. Marlys > Hi Marlys, I'm glad the teacher is coming around. I, too, had to > learn to be more outspoken. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 Judy, thanks for your response to me. I didn't realize that I needed to request the 504 in writing, so I will do that. I have a considerable amount of info on accommodations, including the Teaching the Tiger book, but that's a good idea to review 's Law. I need to write some good notes for myself so I don't get too nervous, emotional, overwhelmed... :-) Thanks, Marlys > Ya did good! Now you need to write a letter asking for a 504 plan. The clock doesn't start ticking until they receive that letter--meeting with them is fine, but don't wait till then to send the letter. Doesn't have to be a long or detailed letter--just say that because of her health problems she requires school accomodations so you are asking for a 504 plan. They then have ex amount of time to grant you the hearing. Meanwhile, be obtaining info on effective strategy for obtaining the 504 plan and making it a good one. There is lots of info on sLaw website, plus the archives of this group must have tons of advice on this issue. I have saved a lot of it myself, so I could forward it if you can't find it for some reason. > > Judy > update on > > > Hi all! > I haven't posted for a while and want update you, ask for > encouragement, and welcome the newcomers to the list - welcome!! I am > Marlys in SC, solitary parent to , 16-yo in the 10th grade with > Tourette's, OCD, and sensory sensitivities. > > I can't remember when I last wrote, but school is the toughest part of > 's life, particularly her Biology teacher/class. Yesterday, > when she was watching a nature movie (which she likes), she was > shielding her eyes from nervous movements that are triggers for her > tics/compulsions. The teacher told her not to do this, and threatened > her with ISS. (These situations have been ongoing and escalating.) > was so frustrated that she did everything in her power to not > blurt out something to him, and just glared at him. When she told me > about this, she seemed about to explode - literally. Well, I told her > this was unfair, and that it was beyond what she could deal with by > herself, and that I would talk to him (again). I had talked to him at > the beginning of the semester, explaining her nbd's, triggers, etc., > and it didn't seem to help. He is skeptical of giving her " special " > treatment, cuz she gets A's - sheesh! > > Well, in the past weeks I have been in contact with the psychiatrist > from last year, got a letter of diagnosis from her, including > recommendations for school accomodations. I am now awaiting a call > back from the school counselor. I plan to meet with her, and request > a 504. ( I really don't know what I'm doing... but need to learn to > be a better advocate for . Courage is not my strong suit... so > you guys are a lot of help.) > > OK, so I spoke with the Biology teacher this morning. There are a lot > of weird things about him personally, and I think he's barely a > mediocre teacher, probably burned-out, has poor social skills, BUT I > don't think he is a bad or cruel person... or at least I hope not. I > asked for his take on yesterday, and he said that day-dreams a > lot (this from a kid who expends a tremendous amount of energy each > day to try to LOOK normal), and that she refused to watch the film! I > explained that even though that was how it LOOKED to him, that this is > not at all what was really going on with her. I told him that I now > had the doctor's diagnosis, and wow! - what a difference that makes > over a lowly MOM saying her child has nbd's. So, now he starts > apologizing, and saying he will apologize to her in case if he hurt > her feelings, NOW THAT HE KNOWS... well why did I bother talking to > him in August?!? (He again brought up that she is doing well - > getting a 97 - that's not the point... I'm concerned about her sanity, > safety, health!!! what good will an A do her if she kills herself?) > Anyway, this may backfire, and that is why didn't want me to > talk to him (might make it worse), but I thought if I were the > teacher, I would want to know. He did ask to call me back in a week, > which indicates to me that he is willing to change his behavior and > work with us on this... I pray a lot... > Comments anyone... did I do the right thing? > > Also, even though the psychiatrist didn't know any therapists (nearby) > experienced in treating OCD, I started calling around and am meeting > with one soon who sounds promising... I don't know if I can talk > into therapy, but I thought I'd at least meet with her, and go > from there. > > Thanks for any help/suggestions/encouragement... > Marlys in SC > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Thanks for the update! I miss hearing stories about the Princess! Di, mom to Jake(19,nda) and 4 (DS) Pennsylvania Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Sandi, I'm glad they agreed to do the t-tubes fro . Let me know how it goes for him. We've got another 2 weeks of antibiotics & then we'll see how Autumn does. If the ears get infected again, we'll ask for a consult for the t-tubes. Luckily Cooks Children from Ft. Worth has an " outreach " clinic here, so we could get an appointment for one of the traveling docs. It may take a few months, but it would be better than traveling there for an appointment & then turning around a week or so later for surgery. Ft. Worth is 5 hours away from here & it's too hard on us to make the trip twice--I'd rather just do once. I hope the surgery goes well--you're right. . .I wish they had sinus tubes too! Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (10 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2002 Report Share Posted May 14, 2002 Beth, Thanks for the input. We where also looking at the Rhino flow. The sinuneb looks like its the way to go due to it has the ability to administer meds and also a irrigation unit. They sell it as one unit now. We were very impressed by the website very informative. Hows Wade doing? When is his next IVIG We would like to be praying for him on that day. Thnaks for the info on sinuneb, you have helped us make up our mind le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2002 Report Share Posted May 14, 2002 Beth, Thanks for the input. We where also looking at the Rhino flow. The sinuneb looks like its the way to go due to it has the ability to administer meds and also a irrigation unit. They sell it as one unit now. We were very impressed by the website very informative. Hows Wade doing? When is his next IVIG We would like to be praying for him on that day. Thnaks for the info on sinuneb, you have helped us make up our mind le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2002 Report Share Posted May 14, 2002 le, Good to hear that is feeling so much better now that he's back on ivig. Just a quick note about the Sinuneb machine.... has been using it for nebulized antibiotics for the last few weeks & he tolerates it well & I have noticed that it seems to work quite well, especially for prophalactic antibiotic prevention of acute sinusitis. I think it helps control the chronic sinusitis also but he hasn't been on it long enough for me to really tell yet. Just thought I would let you know we like it & think it was worth the money .My insurance did cover most if not all of the cost of the equipment & each drug shipment is billed just like a regular prescription at the drug store ($20 co-pay). Hugs to from us! Beth, Mom to Wade, 15 (CVID,etc...) >From: daniellepenne@... >Reply- > >Subject: Update on >Date: Tue, 14 May 2002 19:49:53 EDT > >Well, its been 13 days since 's IVIG........He has been put back on an >every three weeks schedule for two years then retest in the summer of 8th >grade................He had been off for 8 months for re testing, before >that >he had been on every three weeks for 4 years. > >I just spoke with his teachers today and asked if they noticed a >difference. >They said its like night and day. is much more engaged in class now, >full of Tom Foolery , these 6 grade teachers have never seen this >Perky. even says I feel so much better! We are excited for him!!! > >We still have bouts with headaches which we are seeing an acupuncture at >the >pain clinic at LPCH and it seems to help. Still some fatigue but nothing >like it was when we were off IVIG. Stuff nose but no infection! We are >looking into a sinuneb machine for irrigation check it out at >www.sinuspharmacy.com Our Dr told us about it. > >Well, we are extremely happy that is feeling better with IVIG. >Hopefully it continues.......... > >Someone just shared this recently and I wanted to pass it >on.........sometimes it is hard to accept what is happening in our lives >and >our children's lives this was really encouraging for me, yes my kid has >issues that need to be addressed but thats not who he >is.................this >is what was shared > > " We are not our diseases! We may have problems >that have names, but they do not take over our soul. We have to learn >to live with them, but we do not become the poster child for it. >Having the knowledge can help us adapt our lives to deal with >problem, but you can't give in to it by taking it on as part of you. " > > >We are so fortunate to have this group to be able to gather support from. >It >was such a relief when I found this site and was able to share what was >happening and know you all understood..............thanks for being there. > >le > 12 Selective Antibody def., 7 surgeries total ....none while on IVIG >IVIG every three weeks _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 Hi Danialle, Glad I could help with info on the sinuneb. Wade is not going to get any more ivig infusions until the " powers that be " can figure out why he reacted so strongly these last 2 infusions & what changes need to be amde to hopefully avoid this type of reaction in the future, at least on a regular basis. His ped is trying to arrange for him to be seen by Dr. Stanley Schwartz in New York, who apparently specializes in treating CVID patients who are having problems with ivig, among other things. We are waiting to hear back from his office, hopefully today. So, any time you wat to pray will be just fine Thanks for the thoughts & prayers! I'll kep you posted. Hugs to form us! Love, Beth, Mom to Wade, 15, (CVID,etc...) >From: daniellepenne@... >Reply- > >Subject: Re: Update on >Date: Tue, 14 May 2002 23:06:47 EDT > >Beth, >Thanks for the input. We where also looking at the Rhino flow. The >sinuneb >looks like its the way to go due to it has the ability to administer meds >and >also a irrigation unit. They sell it as one unit now. We were very >impressed by the website very informative. > >Hows Wade doing? When is his next IVIG We would like to be praying for him >on that day. >Thnaks for the info on sinuneb, you have helped us make up our mind > >le _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 I know you've heard stories, but I wanted to share my mom's to demonstrate the power of prayer. Mom was diagnosed with a 4.5 out of 5 tumor - 5 being terminal. 6 out of 9 lymph nodes were malignant. She had a radical mastectomy, breast, lymph nodes and part of her back, then went through radiation and chemo. She had a 99% chance of the cancer coming back somewhere in her body within the first year. That was about 3 and a half years ago. She had at least 5 churches praying for her (I think I put it out on all the lists I was on at the time, too). Prayer is powerful. But with that said, God doesn't always choose to heal everyone. Sometimes he delivers us FROM circumstances and sometimes he delivers us THROUGH circumstances. Just use this experience to totally lean on and trust Him. God doesn't cause all the bad things in this world, but sometimes he allows them to happen so glory will be brought to Him, and sometimes we don't get to see how the glory was brought to Him on this side of heaven. God's ways are not our ways. I went through thinking had leukemia several years ago. When it was all over (and he didn't - but I think he was miraculously cured) someone commented on how I handled it so well. I thought I did terrible, but people were watching and thought I was super-naturally calm. You are still on my prayer list that I pray daily for. Loriann AKA Flitter the Christian clown Wife to Dewight Mom to , 12 years, Down Syndrome, PDD-NOS and Celiac Disease. , 3 years and Strong Willed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 wrote: s Hi everyone, I just wanted to let you know that I did go to the hospital, they ran several tests,, blood, exray and an ultrasound, and didnt see anything. they beleive it may be an ulcer so I scheduled an appointment with my GI to schedule an endoscopy. They did give me stronger pain medication called pamalor, Ive never heard of this pain medication, but sure hope it works!! So I am at home, so you dont have to worry! , Pamelor isn't really a pain medication, but here is the information about it from the Walgreen's site... Drug Info For: PAMELOR 50MG CAPSULES Generic Name: NORTRIPTYLINE (nor-TRIP-ti-leen) Drug Manufacturer: MALLINCKRODT Common Uses: This medicine is a tricyclic antidepressant used to treat depression. It may also be used to treat chronic pain and other conditions as determined by your doctor. How to use this Medicine: Follow the directions for using this medicine provided by your doctor. STORE THIS MEDICINE at room temperature, away from heat and light. CONTINUE TO TAKE THIS MEDICINE even if you feel better. Do not miss any doses. IF YOU MISS A DOSE OF THIS MEDICINE, take it as soon as possible. If it is almost time for your next dose, skip the missed dose and go back to your regular dosing schedule. Do not take 2 doses at once. If you take 1 dose daily at bedtime, do not take missed dose the next morning. Cautions: AFTER YOU START USING THIS MEDICINE, several weeks may pass before you feel the full benefit. DO NOT STOP TAKING THIS MEDICINE without checking with your doctor. KEEP ALL DOCTOR AND LABORATORY APPOINTMENTS while you are using this medicine. BEFORE YOU HAVE ANY MEDICAL OR DENTAL TREATMENTS, EMERGENCY CARE, OR SURGERY, tell the doctor or dentist that you are using this medicine. DO NOT DRIVE, OPERATE MACHINERY, OR DO ANYTHING ELSE THAT COULD BE DANGEROUS until you know how you react to this medicine. Using this medicine alone, with other medicines, or with alcohol may lessen your ability to drive or to perform other potentially dangerous tasks. LIMIT YOUR ALCOHOL CONSUMPTION while you are taking this medicine. This medicine will add to the effects of alcohol and other depressants. Ask your pharmacist if you have questions about which medicines are depressants. ALCOHOL, HOT WEATHER, EXERCISE, AND FEVER can increase dizziness. To prevent dizziness or fainting, sit up or stand slowly, especially in the morning. Also, sit or lie down at the first sign of dizziness or weakness. THIS MEDICINE MAY CAUSE increased sensitivity to the sun. Avoid exposure to the sun, sunlamps, or tanning booths until you know how you react to this medicine. Use a sunscreen or protective clothing if you must be outside for a prolonged period. DO NOT BECOME OVERHEATED in hot weather or during exercise or other activities since heatstroke may occur. BEFORE YOU BEGIN TAKING ANY NEW MEDICINE, either prescription or over-the-counter, check with your doctor or pharmacist. Caution should be used in the elderly since they may be more sensitive to the effects of this drug. FOR WOMEN: THIS MEDICINE HAS BEEN SHOWN TO CAUSE HARM to the human fetus. IF YOU PLAN ON BECOMING PREGNANT, discuss with your doctor the benefits and risks of using this medicine during pregnancy. THIS MEDICINE IS EXCRETED IN BREAST MILK. IF YOU ARE OR WILL BE BREAST-FEEDING while you are using this medicine, check with your doctor or pharmacist to discuss the risks to your baby. Possible Side Effects: SIDE EFFECTS that may occur while taking this medicine include dry mouth, drowsiness, dizziness, headache, nausea, weakness, diarrhea, excess sweating, heartburn, unpleasant taste, weight gain, or an increased appetite especially for sweets. If they continue or are bothersome, check with your doctor. CHECK WITH YOUR DOCTOR AS SOON AS POSSIBLE if you experience constipation; blurred vision or other vision changes; eye pain; fast, slow, or irregular heartbeat; hair loss; shakiness; fainting; nervousness or restlessness; twitching of the face or tongue; mood swings; loss of balance; uncontrolled movements of arms and legs or stiffness; difficulty speaking and swallowing; unusual bleeding or bruising; sore throat or fever; skin rash and itching; swelling of hands, face, lips, eyes, throat, or tongue; irritability; ringing in the ears; seizures; yellowing of the skin or eyes; hallucinations; or chest pain. If you notice other effects not listed above, contact your doctor, nurse, or pharmacist. I hope you are able to get some relief from the drug though! Love Always, Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 l harris wrote: I obtain good pain relief from a combo of Percocet and Vistaril. My neuro says that Vistaril is for the nausea that my pain induces. Lee, Vistaril enhances the effects of the percocet. It is an antihistamine, and works for anxiety & relaxation. Here is a great site to check out about Vistaril (hydroxyzine).... it tells you more about what I was trying to say above. http://my.webmd.com/content/article/4046.1273 I hope it helps a bit... I believe everyone should KNOW as much as possible about the medications that are on!! Love Always, Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 l harris wrote: Thanks so much Anne!! That is good info. I also take the Vistaril separately, when I have nausea. It works well for me!! I try to only go to docs that believe in educating their patients. I went to one doc who thought that education was a bad thing. I think he was prejudiced against all of us women too!! Lee Hi Lee, Oh, I don't make points with doctors because I question EVERYTHING they are trying to do or say about me. On more than one occasion it has saved my life because MDs don't always read my allergy list before prescribing meds for me. It amazes me that with all my documented allergies, doctors would still try to give me meds I am allergic to because they don't think my allergies are REAL. More than once I have been told that it is not possible to have the amount of allergies I do. You would think with the possibility of malpractice hanging over them, they would be a little more careful! Or at least not try to play russian roulette with my life! About the only drug I can have for nausea is Vistaril, because me & compazine are NOT friends. It was my first drug allergy in 1992, and I came very close to dying after only 1 dose of the drug. So my options these days are to puke, or have Vistaril when the doctors will give it to me. Usually the doctors make me go through the 1st option. I am mighty cold, it is only 66 degrees F (furnace is totally screwed up!) in my living room where the computer is so I have to go jump into my warm bed now before my toes break off from being frozen. I can also smell smoke, so I have to go do something before my allergies go off with vengeance! I'll talk to you again soon! Love Always, Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 Got it. Take care, pal......... hope your pain will subside real soon. Ling Update on Hi everyone,, I wanted to let you know that I am having extreme stomache pains,,, Some of it is my Crohns, and Im not sure about the rest,,, it just doesnt all feel like a Crohns flare up,, I am going to try to get into see my GI today,,, if not Im going to the ER,,, if I dont write you guys back later, They have admitted me and I might be gone for a few days,, so dont worry!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 wrote: I was wrong,, it is not Pamelor,,, as I thought the prescription said,, its Panlor????? Hi , I haven't heard of this drug, but it IS a pain medication. Here is the information about it from Walgreen's dot com. http://www.walgreens.com/library/finddrug/druginfo.jhtml?_DARGS=%2Flibrary%2Ffinddrug%2Finfosearchresults.jhtml.27_A & _DAV=14494 I hope it gives you the pain management effects you are hoping for! Love always, Anne 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.