tracy

Thank you everyone

Hi My son has been diagnosed with PANDAs for 5 years now. He is doing pretty well at this point although still has flare ups from time to time. We now go to the new PANDAs Center at Mass General Hospital - and finally feel as though we have some real support! We got a phone call tonight at home regarding the blood work we recently had done. The labs indicated that our son had an extremely low Immunoglobulin A count - which makes him more susceptible to infections and viruses and not a candidate for IGIV treatments. The normal range is between 65 and 300 (65 being the lowest) and our sons was at 35. Even more alarming – he also had an increased Anti Nuclear A tider - which can be an indicator of other auto-immune disorders (such as lupus). Our doctor mentioned that he has seen this before in kids with PANDAs and it may not be an indicator of anything more serious and to hold off worrying until we go to the immunologist apt. scheduled in 5 weeks. We are pretty scared and the thought of waiting 5 weeks is somewhat overwhelming. Has anyone else run into these two lab results before?

My son was a strep carrier for about 6 months when first diagnosed with PANDAs. We finally had to go to a disease control specialist who used a very strong antibiotic that had showed great success in removing the carrier status in children in europe. I forget the name of the antibiotic as this was 5 years ago but if this pattern continues get your child to a good disease control specialist. Also throw out all tooth brushes after a day on antibiotics - EVERYONE IN THE HOUSES tooth brushes!

When my child first was diagnosed with PANDAS (5 years ago) - there weren't many avenues for support, help or research. We were desperate for help. We used the strategy of an eastern and western medicine philosophy. We used conventional antibiotics when necessary (as I'm sure you all do) and we contacted an incredible naturopath who was really instrumental in helping our son. He has been on a regiment of supplements for 5 years now. We started with a highly absorbable partially broken down supplement vitamin drink called "Isotonix Might-a-Mins® Spectrum Multivitamin". It comes in an orange drink and he drank it twice per day for 3 years. He was 5 when he was diagnosed. The partially broken down part is very important because with kids with these struggles sometimes it's hard for the bodies to actually absorb the nutrients in supplements - this highly absorbable vitamin drink ensures that the nutrients actually get into their bodies. He now takes "Nutriplenish Focus" which comes in pill form. ** Nutrition is also a huge part of things as well. I can also not stress enough how important a GOOD probiotic is - especially with all of the antibiotic use happening with PANDAS. We use "Innate Flora 20/14 Ultra Strength". It's important to get a product that has multiple strains in it - even if it's a great probiotic from a health food store, if it only contains a couple of different strains and your child isn't lacking one of them then it won't help him. That's all I have for tonight.