tkageler

My son has had IVIG treatment done twice and it was covered by BCBS both times. He has done in the hospital as inpatient over a two day period, staying one night in the hospital. It is covered as post infectious encephalitis. Good Luck!

My son had a major phobia to needles. He would start screaming as soon as he knew he had to get a blood draw and sometimes we couldnt get it. But, then our doctor gave us a prescription for lidocaine cream. It is a miracle worker!! You put it on 30 minutes before the blood draw and it numbs the area. Once my son realized it worked we never had a problem again...and now a year later he doesn't even use it. He now says the blood draws don't hurt and would rather not use the numbing cream.

My son has PANDAS and has been on Ceftin for 4 months. His Doctor prefers Ceftin when Augmentin is not an option (which is not for my son due to allergies). He used to be on Zithromax but seemed to be getting worse and got Strep while on it, so we switched to Ceftin. When he has a flare we switch to Clindamyacin. Hope that helps and good luck!!

Thank you for your reply and sorry it has taken me so long to reply. Has your son started to show any improvement yet? We were on vacation for the last 10 days and while we were on vacation we got word that our insurance approved the IVIG for my son!! I don't know how. Keller was able to do it, but she is the answer to our prayers. We travel to Seattle next week....cross your fingers that it works! I have heard that the reaction and side effects from IVIG can vary greatly depend on the brand of medication used, so it is nice talking to someone who had the IVIG done by the same Doctor. How did your son feel while in the hospital and after he went home? When he had the reaction to Benedryl, was it given thru IV? My aunt has IVIG done every 2 weeks and she said that she has a AWFUL reaction to Benadryl if it is done thru IV, but she is fine if she just takes the pill. Thanks so much for your responses and good luck!

Both of my PANDAS kids also have a MTHFR gene mutation. One is compound heterozygous and one is homozygous A1298C. We are also doing methyl b12 supplements and methyl folate. We have not noticed any changes at this time, but our doctor has found approximately 50% of her PANDAS kids have a MTHFR mutation.

My heart just breaks for all of the kids, no child should have to go thru what they do. My son also has PANDAS and has had it for years, but finally had it diagnosed last May 2011. He had to be on steroids for two months and was about 80% symptom free for the first time in years....but then in June he got strep. Everything has gone down hill since then and nothing is working. He has tourettes/tics and OCD. He has itching in his legs, which causes him to have to kick his legs when he is walking or drag the tops of his feet because he says they itch. His neurologist said it is either a complicated tic or OCD, but there is no way to know which it is. This is knew since he got strep in June and is just getting worse and worse. He also has facial tics and severe stuttering, to the point that sometimes he can't talk. One thing that we did find out with my son, he had fifths disease within the last month. Some information I found said it can cause a flare with PANDAS kids just like strep. It is a viral infection, but it can cause inflammation in the body and in rare cases can causes encephalitis or arthritis. It can also cause a rash anywhere on the body that can come and go for weeks. The rash is a lacy red blotchy rash, that doesn't usually itch. My son did not get the rash or have any real symptoms of being sick, but my daughter did. My sons bloodwork showed he had/ has it recently which could explain the severity of his symptoms. . Has your son started getting better yet from the IVIG? We are trying to get IVIG covered by our insurance and will hopefully be doing it in two weeks. But, hearing how your sons is doing after the IVIG is scary. This feels like the last hope. Which doctor are you seeing in WA? We are in OR, but travel to see a wonderful Dr in Redmond,WA.