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Success after IVIG? Looking for specifics


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Hi, my 5 1/2 year old daughter is soon having a tonsillectomy. She will then have her first IVIG treatment sometime in the months following the surgery. She's in a private, Catholic pre-school (for mostly 4 year olds) right now and am thinking she has a long way to go to be able to be ready for Kindergarten at the same school. (She had recent flare after croup and lengthy cold.) Her daily challenges include difficulty with transitions, inattention, fidgety, lack of listening skills, hyperactivity, wetting accidents, adhd type behavior, outsized emotions. On a flare, she has all of these plus rage, aggression, fear, unpredictability though she has not shown ANY of the more sever ones during school. (She is also bright, funny, loving, socially wonderful and has an impeccable memory. I feel the need to shine a light on all of her strengths!)

I'm on somewhat of a short timeline in trying to figure out how she will respond to tonsillectomy and IVIG and whether she can/should stay at the same school or switch her to public school with many more resources. Can someone share the specifics of the improvements they saw following IVIG? Which symptoms went away first and how long after IVIG did that happen? Did your child go from difficulty with daily functions to smooth sailing? Any thoughts on which symptoms are harder to overcome after treatment? The earliest her IVIG treatment would be is February, so seeing how "miraculous" IVIG benefits have to be by this spring/summer.

Thank you!!!

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Hi. First, it is great that your daughter was diagnosed while she still is very young. My understanding is that the younger the child is at diagnosis, the better the recovery.

I think it is difficult to predict how kids respond to IVIG. Even the same kid can respond differently to different times they get IVIG. My son (15) was diagnosed with PANDAS when he was 12. In retrospect he had had symptoms since he was very little. After diagnosis he had a tonsillectomy and two months later IVIG.

After his tonsillectomy he got worse: irrational fears, sad, scared, extremely worried about everything. These gradually got better in the weeks following.

After the IVIG I did not see immediate effects, but 2-3 months later I noticed he was less anxious, less obsessive, and he said he did not wake up at night anymore. But it was not consistent and I think I also was waiting for the other shoe to drop. At six months I realized I had not worried about him for a while. His main symptoms before IVIG were anxiety, obsessive compulsive tendencies, and he was terrible at math. Towards the end he became obsessed that he was fat (he was not at all) and he started eating less.  

Since that time he has overall done well. He will get some symptoms whenever he is exposed to something or is getting sick. These have generally gone away after a couple of days. There were two times when they didn’t, and they kept increasing, and at those times he received steroids. Those worked well. 

I have heard that symptoms go away in reverse order compared to the order in which they started. I did not see that very clearly with my son, although the food concerns went away quickly, but at the same time as anxiety and OC symptoms I think. 

I think you should expect an increase in symptoms following tonsillectomy.

Regarding the school choice, how long can you wait to decide? It would be good if you wait and see how things go before making a decision.

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