Seeking Advice

[HanHan]

This is my first post. I am about 3 weeks new to this site and I want to say it has been so helpful and informative reading all your posts and so comforting knowing we are not alone. I feel our life has been turned upside down. Your words, your individual situations and your persistence, has really given me strength to fight this fight. Thank you.

My daughter has been diagnosed with PANDAs. She has been on Augmentin since the middle of December. After the 1st 5 days on it, we saw tremendous improvement. Over the course of the next two months symptoms have flared when she or someone in the house has been sick. My son now has pneumonia and a double ear infection and my daughter has a cold and her ocd behaviors are almost has bad as they were back in Dec.

I am sure it is Pandas but I also feel we should look to see if there are any other underlying issues going on. We have had her on augmentin for two months and having her on it helps but the behaviors still come and go and it seems like it is a temporary fix. We feel like we need to do more and are not sure in what direction to go. I have read so many stories on this forum. Many of you have tried so many different avenues. I understand each child is different but I wanted to ask if anyone has a recommendation on what steps we should take next? Should we treat Pandas with a tonsillectomy and ivig and then if that doesn’t help, we look into underlying issues? Or, should we see Dr. B. and Dr. T. first and see if there is anything else going on and then go the tonsillectomy and IVIG route. Any thoughts you have would be greatly appreciated.

[Chemar]

welcome

Your post just passed our spam filters so I am bumping it up for others to reply

[WorriedDADNMOM]

HanHan------If she has been diagnosed with Pandas, that is a good thing. The fact you have someone on board that actually believes in it. Our dd's both had bad reactions to strep/myco in dd6 now 7 and dd8 with Strep and EBV. Our Integrative Ped did blood and urine testing. Supposedly pyrrole disorder is closely assoctiated with Pandas and ASD. My kiddos were both diagnosed with both Pandas and Pyrrole. We have been doing long term abx(azithromycin) for dd7 who was infected longer and had MANY more of the behavior issues. DD8 got severe sep anxiety post strep---sudden onset does not come close to describing the severe change in her. DD7 and DD8 are both on a cocktail of vitamins b,d, fish oil, primrose oil, enhansa, probiotics, and several others. Our dd 7 who as been the worst has been the last few weeks been put on lithium orotate and st johns wort. Google them both. We have seen very good progress with these two in particular----we think. We are doing so much so it is hard to tell what is working. The idea is to get rid of any infections then rebuild the immune system with supplements. Control the behavior with the last two. I hope you find this helpful. Good luck and God Bless!!!!!

[WorriedDADNMOM]

I would also add-----We have had the subsequent exacerbations---full onset of tics/behavior. ABX and the supplements have helped get her back quicker we think. Now we are doing MWF azithromycin for a longer period. So far so good 2-3 weeks in. PM me if you want a complete list of everything we are on.