Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 You're not crazy, and you're not making things up! There are standard blood tests that can check for immune system problems. Others on the list will be able to help you with exactly what you need to have done. Be prepared, however: got one infection after another; while her tests were a tad off, they weren't badly so. Someone else jump in here! Martha On the other hand, I remember worrying a bit about this sort of thing with our elder daughter when she started pre-school at 2. . Her ped simply said that she needed to be exposed to various germs. I don't know how that translates for CHARGErs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 We had tested at 2 for various allergies and for asthma and the allergist recommended that he NOT be in daycare. I would say 4 out of the 5 times he's been sick, we've ended up in the hospital with respiratory problems. We recently made it through a cold by being proactive and giving antibiotics immediately along with 3 breathing treatments a day of albuterol and xopenex, orapred (oral steroid), and a steamer at night. He still needed one more dose of antibiotics to get rid of an ear infection but we stayed out of the hospital. All of this for a cold! A couple of the colds came completely unexplained but the rest could be linked to contact with other kids or adults. Not sick kids or adults, necessarily, though. does not seem to be able to kick a virus very well on his own, but he does eventually get over them. We've needed antibiotics for every bacteria he's had. I have my suspicions that his immune system is a tiny bit off, but we don't know. We're going to keep him home this winter. _____ From: lewcap@... Sent: Tuesday, October 19, 2004 9:33 PM To: CHARGE Subject: Re: immune system issues You're not crazy, and you're not making things up! There are standard blood tests that can check for immune system problems. Others on the list will be able to help you with exactly what you need to have done. Be prepared, however: got one infection after another; while her tests were a tad off, they weren't badly so. Someone else jump in here! Martha On the other hand, I remember worrying a bit about this sort of thing with our elder daughter when she started pre-school at 2. . Her ped simply said that she needed to be exposed to various germs. I don't know how that translates for CHARGErs. Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 re: to get home based services for 3 yr. old Could you base it on evidence of laytex exposure creating severe allergic reactions (as in daycare there is a ton of laytex in toys) as this is common in CHARGE. Also Dr. Davenport mentioned verbally during her presentation in OHIO, possibility of higher white blood cell counts generally in CHARGE'rs, and more research needed. You could reference the conference although have not seen this yet in studies. If heart surgery has been a factor, reports have indicated often Thymus affected (regulation of immune system is one of the roles) as they often need to cut near/through it. Also, you could use the calendar system (its also CSC new CARE REPORT) and keep your data as proof, where shaded areas show evidence of when the child was sick and darker colour for hospital visits. Good luck. Ann Gloyn Education Specialist > > Hi All, > > We are trying to get homebound school services for our 3 yr old. I > refuse to send him to the center because he tends to get sick > easily. The benefits definitely don't outweigh the risks in this > situation. > > We've learned to keep him away from public places from about Oct. to > May and anyone who is known to be sick. This helps, but he still > picks up things. He's gotten a cold when he hasn't left the house > and has only been in contact with family members..none of whom had > so much as a sniffle...??... But anyway, our Dr. is hesitant to > say " cannot attend school from Oct 1 to May 15 because of > his medical condition.... " because he doesn't know how he would back > that up. is not diagnosed/confirmed to have immune system > deficiencies etc. Nor do I know how they would diagnos that. > > I seem to remember alot of times people mentioning that their child > gets sick easy. It's slso mentioned in the manual and says more info > to come...but I wondered if there is anything to it????? Sometimes I > feel like I'm thought to be crazy and making it up. > > Thanks for any input!!! > > Theresa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Theresa, Our is now 20 but when she was little she never left the house from October to March. I fully understand what you are going through. You are not crazy and not making it up. Her first year of kindergarten she missed 40 days out of 180. Guess what, the days were between Oct. and March. Her second year of K she missed 30 days the same months. In May of that year she had her ASD repaired with open heart. In first grade she did much better. She was sick every Valentin's Day all through elementary school. I will never forget 6th grade I think it was. She got up on VDay and even said, " Hey, I'm not sick this year. " The school called me at noon she missed yet another party. She had a fever and got really sick the next day and missed about a week. Back to what I wanted to ask. Do you have HEAD START? had a teacher here at home through HEAD START. She couldn't go to the " school " because she always got sick. Her Sp.Ed. preschool speech therapist made special arrangements to come to our home Oct. to March. Times have changed so mothers of younger kids will be more help. Just know that you are not crazy and not alone. still seems to get sick in Feb. and March so I can't say she got over it. but the older she got the better the winter illness were. Lynn Mom to Tom 25, cHARGE 20, and wife to Doug immune system issues Hi All, We are trying to get homebound school services for our 3 yr old. I refuse to send him to the center because he tends to get sick easily. The benefits definitely don't outweigh the risks in this situation. We've learned to keep him away from public places from about Oct. to May and anyone who is known to be sick. This helps, but he still picks up things. He's gotten a cold when he hasn't left the house and has only been in contact with family members..none of whom had so much as a sniffle...??... But anyway, our Dr. is hesitant to say " cannot attend school from Oct 1 to May 15 because of his medical condition.... " because he doesn't know how he would back that up. is not diagnosed/confirmed to have immune system deficiencies etc. Nor do I know how they would diagnos that. I seem to remember alot of times people mentioning that their child gets sick easy. It's slso mentioned in the manual and says more info to come...but I wondered if there is anything to it????? Sometimes I feel like I'm thought to be crazy and making it up. Thanks for any input!!! Theresa Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 --Hopefully this will help you..My son had lots of immune system issues....Well I was fighting to learn about MMR shot I learned that there is such a thing as Immunologist (I know I spelled that wrong LOL) Anyways doctors who specialize in this sort of thing ... If your child has an Endocrinologist start there if you dont have an endo doc .. you should because they cover all glands.And they can give referrals. s Immune problems were endocrine based.(Or I should say lack of endocrine )... Be forwarned this could back fire they could test everything and have it all come back normal....I dont know where you are based but you have the right to keep your child home and still recieve all educational serves If your doctor will not write a script for at home services call another one of you childs doctors keep calling till one does it...The squeaky wheel gets the grease.....hope this helps mom to C.H.A.R.G.E.r 9/30/01-8/3/03 - In CHARGE , " ourgiftmjt " <kttroupe@c...> wrote: > > Hi All, > > We are trying to get homebound school services for our 3 yr old. I > refuse to send him to the center because he tends to get sick > easily. The benefits definitely don't outweigh the risks in this > situation. > > We've learned to keep him away from public places from about Oct. to > May and anyone who is known to be sick. This helps, but he still > picks up things. He's gotten a cold when he hasn't left the house > and has only been in contact with family members..none of whom had > so much as a sniffle...??... But anyway, our Dr. is hesitant to > say " cannot attend school from Oct 1 to May 15 because of > his medical condition.... " because he doesn't know how he would back > that up. is not diagnosed/confirmed to have immune system > deficiencies etc. Nor do I know how they would diagnos that. > > I seem to remember alot of times people mentioning that their child > gets sick easy. It's slso mentioned in the manual and says more info > to come...but I wondered if there is anything to it????? Sometimes I > feel like I'm thought to be crazy and making it up. > > Thanks for any input!!! > > Theresa Quote Link to comment Share on other sites More sharing options...
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