what to Do?

[pr40]

I talk to a friend about our dd8 and her PANDAS. She said her son had the same symptoms when he was 8. He is now 19 and has bi-polar diagnosis. his symptoms include anxiety and a lots of word OCD. Music is basically the only activity that calms him down. He is very intelligent but does not function well.

What should they do?

thanks in advance.

[momoftwinsplus1]

I know Dr. K was treating a 19 year old with IVIG the same time we were there with our daughter. Maybe that could be an option??

[MomWithOCDSon]

We didn't get a PANDAS diagnosis or start PANDAS treatment (abx and one course of steroids) until my DS was 12, and his medical/mental history suggests he's had PANDAS since about the age of 3.

 

I think the healing process is longer than it is for kids diagnosed and treated quicker, and, in our case, we may have some OCD for years to come, given as he'd developed those behaviors for years prior to PANDAS, but the abx brought him back from the brink and helped bring him back to his functional, happy self.

 

I would just encourage your friend to reach out to one of the PANDAS docs regarding an immune panel, clinical diagnosis and treatment.

[kos_mom]

My DS had his first Pandas outbreak when he was 6--repetitive erasing of his writing. When he was 7 he broke out all at once in a huge nmber of tics and OCd behaviors all at once. I thought he had a brain tumor. He is now 22. When he was younger he recived only prozac. We thought it was working, and put up with some of the undesirable side effects, but it was really just the Pandas tapering down. When he was 9 and a half he had another huge exacerbation. They upped the prozac and everything became worse. After a year and some months he was dx'ed at the NIH but was deemed too chronic for their study. I heard about exposure response therapy and he did that for two years. He was much better after but not 100 percent. He got strep again at the end of his freshman college year, and again last year. Abx his pediatrician gave him helped. This year he saw his first Pandas specialist, Dr. L and since has had his tonsils and adenoids removes and has just received IVIG. We are hoppeful he will be back at college this semester.

 

Please encourage your friend to take her DS to a Pandas specialist. I am quite sure that his age would not be a barrier to Dr. L, Dr. T, Dr. K, or Dr. B. I don't know about Dr. M in Florida--they may have a strict definition of pediatric. There is also Dr. J at Mass General, who is an adult psychiatrist. He could be helped by abx/steroids, T and A, or IVIG. My son had extreme word OCD (not sure if your friend's DS has the same type--essentially he ticced whenever he heard certain word--close to 100 of them including really common ones like do and to and all their hononyms); this is quite amenable to exposure response prevention therapy. But it is tortuous diving right into it without some prior dampening of the symptoms with other treatments like abx. We had to do it that way in the absence of another approach so it can be done although the emotional price is high.

 

If it is a long wait to see a specialist, she could get a phone consult with Dr. T and get a lab order for all the basic bloodwork and perhaps find a sympathetic doctor who would try a trial of abx if blood tests warrant.