What labs should I ask for?

[Dedee]

I can not believe I have just now found this forum. I have a 10 year old who was diagnosed with OCD after a strept infection when he was 5. He has continued to suffer with OCD and anxiety disorder after flare ups over the years. On Thanksgiving day, three days following an acute strept infection he began having severe tics. His pediatrician and psychiatrist have put him on a low dose antipsychotic to decrease the episodes, but his behavior is changing and I suspect that he suffers from PANDAS. The problem is my pediatrician is not familiar with this. I am an RN and I think she would listen to me if I could tell her what labs she needs to run to check and confirm and refer him out to a specialist. He has had strept 4 times in the last 3 months, his grades are dropping, and now the tic disorder. I am desperate to help my son. Everything I have read about PANDAS sounds just like him and I can't believe I haven't heard about it before now. Even his psychiatrist hasn't mentioned PANDAS to me and she has treated him since he was 5 and is aware of the strept relationship. If I could get the diagnosis confirmed via labs, I thinks I could make a believer out of them. Could anyone tell me what labs need to be ordered? Please help.....

Dedee

[Chemar]

Hi Dedee and welcome

glad you found us

 

I have limited knowledge on PANDAS as my son was -ve for it...........but I do know a bit about the tests required

 

Be sure to include a throat culture of group A B-hemolytic strep. Ask that the specimen be cultured, not just the rapid test.

MOST IMPORTANTLY do a blood test to assess elevated streptococcal antibodies (Anti-DNAse B and Antistreptolysin titers --- ASO ).

 

hopefully some of the more knowledgable folks re PANDAS will be along soon

[dominique]

Dede, I just had a Pandas Panel done at Immunosciences Lab in Beverly Hills Calif. The phone number

is 310-6571077. I highly recommend this lab. Dr. Vojdani has written several articles on Pandas,

hes truly an expert. The test results are very difficult to read and understand. I tried calling Dr.

Vojdani but he cannot talk with you, you must have someone that understands Pandas. My son

had several abnormalties and is positive. but presently has no symptoms . Does your son only

have symptoms after getting strep? If so for how long? Do the symptoms start to reside? Has your son

been on antibiotics? Did his symptoms improve? My sons did dramatically then got worse when finished.

It only takes a few days for the results and cost about 90 dollars i think. Youll have to get his blood

drawn at the lab. Good luck, Dominique

[Dedee]

Thanks so much for the information. Yes my son did take antibiotics, but only for the normal 10 days. When his OCD was diagnosed at age 5, it was two weeks after his strep infection and no further antiobiotics were given. He was placed on a SSRI, and his OCD symptoms seem to get better. He had a reccurent episode at age 7 after another strept episode and his SSRI had to be increased. Again, no one ever mentioned PANDAS to us and I was totally clueless. It wasn't until this year when he began having one infection after another and then the sudden onset of tic disorder that I began doing my own research and found out about PANDAS. His pediatrician has never heard of it. I am currently trying to find an immunologist to take him to, I am so desperate to find some kind of help for my son. But how do I know if the immunologist has experience in this? Whenever I mention PANDAS to any other healthcare provider they all look at me like I am crazy. I just don't know where to turn. I feel totally helpless and overwhelmed, but I am determined to get my son the help he needs. Thanks for the information on labs, thats a start.

Dedee

[dominique]

Dedee, If you want some names and numbers of doctors that are familiar with pandas let me know

I live in California. but the doctors are in texas and chicago. Im so sorry that your doctor didnt

mention Pandas until now. That is terrible although if i hadent of found this forum when i did i probably

would of gone through the same thing. According to one doctor who had treated over 20 children with

Pandas said it extremelyimportant to get it under control before puberty... good luck! Let me know if

i can help in any way.

 

Dominique

Be sure to read the article that Dr. Vojani wrote regarding pandas. It very interesting. Hes the owner of the

lab Immunosciences

[Dedee]

Yes, Thank you. I would love guidance on who you would reccomend. We live in the south, and finally spoke to one infectious disease specialist who was familiar with PANDAS and he is sure my son meets all the criteria. However, he doesn't really know of much that is being done other than antiobiotic therapy. So he really wasn't much help. Seems most people are sure he has it now, but not so sure what to do about it. Ugh! Meanwhile my poor baby is all strung out on this medicine they gave him to control these tics and can barely stay awake. I am so confused....

[Chemar]

Dedee

are you anywhere near North Central Florida?

 

there is an excellent PANDAS RESEARCH TEAM at Shands Clinic at the University of Florida in Gainesville, under Dr Tanya Murphy,and they also see patients

[Dedee]

Dedee

are you anywhere near North Central Florida?

 

there is an excellent PANDAS RESEARCH TEAM at Shands Clinic at the University of Florida in Gainesville, under Dr Tanya Murphy,and they also see patients

 

 

Dedee

are you anywhere near North Central Florida?

 

there is an excellent PANDAS RESEARCH TEAM at Shands Clinic at the University of Florida in Gainesville, under Dr Tanya Murphy,and they also see patients

[Dedee]

Thanks for the information. I am in Tennessee, but would travel if necessary. I would love some names. We have started to see a variation in his tics now. Very upsetting. I have taken him off of his antipsychotic medication as he could not stay awake while taking it and I am planning on trying some supplements, but I want to make sure that I get all of my information correct first. We plan to see an immunologist the first of the year. This is all so stressful and I am searching for all the information I can find. Thanks for anything you can provide.