Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 Lee: Just today after a recommendation from this group THANK YOU very much!!! - I called Dr. Charlotte Cunningham - Rundles. We have to wait until next week when a nurse will call us for intake information and then give us an appointment. My second effort will be CHOP in PA since there are the 2 closest centers to us. Also at the recommendation of this list I called the Modell Foundation which has a wonderful web site if any of you are interested in looking at it. The web site is www.jmfworld.com. It supplies a lot of valuable information of primary immune problems as well as the latest research. In the mean time last night my son was desperate with his headache. We gave him tylenol with codeine and he has been out cold ever since. I really hope we can find someone to help him. Thanks so much for your help. Tina (mom to Mike 14, CVID, Asthma, JRA, EBV and Fibromyalgia, 16 JRA, and 17 Lennox Gastaut Syndrome). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 Dear Tina, I am so glad that you were able to contact her. Please keep me posted on how the doctor's visit goes. I will be thinking about you. My son and I flew to NY three years ago (we live in CA) to see this doctor. Take care. Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 Lee; What did you think of the doctor in New York? Did you find her thorough? Was she sympathetic but aggresive enough? I have not even gotten to talk to the nurse yet - I hope they don't make us wait several months for an appoinment - Did you have a long wait to get the appointment? I just can't see this kid in pain like this for several more months.... Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 Tina - several people on the adult PID list see Dr. Cunningham-Rundles and think very highly of her. Here is an article I had by her on IVIG and anti-IgA, thought it might be FYI. J Clin Immunol 1993 Jul;13(4):272-8 Related Articles, Books, LinkOut Long-term use of IgA-depleted intravenous immunoglobulin in immunodeficient subjects with anti-IgA antibodies. Cunningham-Rundles C, Zhou Z, Mankarious S, Courter S Mount Sinai Medical Center, New York, New York 10029. The use of intravenous immunoglobulin is standard practice for antibody replacement in the humoral immunodeficiency diseases. Most infusions proceed uneventfully, but a proportion of infusions (5-8%) produces some degree of an infusion reaction. While the cause of most of these infusion reactions is unknown, an established, but rare cause of reactions is IgA antibodies in the serum of the patient, which apparently forms an immune complex with the traces of IgA in the infused immunoglobulin. This article describes our studies of five immunodeficient patients who had high-titered anti-IgA antibodies and a history of severe infusion reactions to intravenous immunoglobulin products not depleted of IgA (IgA content, 270-720 micrograms/ml). Over a 6-year period we gave these patients IgA-depleted intravenous immunoglobulin for a total of 170 infusions. These infusions were generally well tolerated; however, mild to moderate infusion reactions did occur in 9 of the 170 infusions (5.3%). These reactions were not related to the IgA content of the immunoglobulin solutions used--ascertained to vary between 0.4 and 2.9 micrograms/ml of IgA. Levels of plasma C3a and C4a increased after immunoglobulin infusions but the appearance of these components was not accompanied by any infusion reaction. We conclude that the long-term infusions of IgA-depleted intravenous immunoglobulin, within the range of IgA concentrations investigated, into patients with even very high-titered antibodies to IgA, is a safe practice. PMID: 8227286, UI: 94043668 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_ui ds=8227286 & dopt=Abstract Ursula Holleman uahollem@... and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com /group/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2000 Report Share Posted June 2, 2000 Ursula: You know the past several days I have been on trying to catch up on the list and the emails I have not been able to read. I read some of the posts on the anti IGA antibody. I don't think was ever tested to see if that was the problem. Is there products that are made without IGA? What happens if this is the problem? Then he can't receive IVIG? Are there any others who have been diagnosed with this problem? Since the bad bad reactions have happened on every product we tried so far it would make sense... Again last night the headache was so bad became desperate and we had to give him tylenol with codeine. He is still out cold. I feel so bad for him and so helpless. Thanks so much for the input. I already have a call into the allergist and immunologist with regard to this. Thank you Tina Mike 14, CVID, JRA, EBV, Fibromyalgia and Asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2000 Report Share Posted June 2, 2000 Tina, I agree with Dale that Codeine can cause some pretty serious side effects. Some other things you might want to consider in the headache " management " is caffeine. Caffeine withdrawal is notorious for blinding headaches. There's caffeine in so many things that we take it for granted. Also, headaches from caffeine withdrawal don't go away with medication. If your son is " hooked " on caffeine in any form, going without it for about 8 hours will cause the onset of a headache. Also, watch out for some migraine meds that use caffeine as a vasodilator to end headaches. (I found this out the hard way when I was pregnant with Autumn and my doc gave me Fioricet for migraines.) Just my .02. Ray, mother to Tabitha age 4 (almost 5) and Autumn age 2 (IgG def., asthma, chronic sinusitis and allergies--unknown) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2000 Report Share Posted June 2, 2000 Dear Tina, I found the doctor to be very thorough and sympathetic when my son saw her. She spent a great deal of time with us and when we left told us to feel free to call her anytime if we had any questions. Unfortunately, when I attempted to contact her several months later, maybe even a year, I'm not sure how long it was, she would not speak to me. To this day, I do not know why. But, when we were there she definitely checked out my son from head to toe, was very kind, and struck me as a postitive type person. We did not have to wait long for the visit. She even said that we had the best immunologist on the west coast. Hope this helps. Lee Quote Link to comment Share on other sites More sharing options...
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