PANDAS

[eaccae]

Well - we have been trying to get a handle on DD's (nonadhd) possible OCD. I had asked her doctor about PANDAS. I love her doctor but she dismissed it because she felt PANDAS was more tic oriented. The private kindergarten where DD attends is fantastic and they decided that we need to get the school district involved. (We are on a 3 month waiting list with the clinic). (We have state health insurance for the kids because DH is self employed and DS doesn't "qualify" for any other health insurance due to his ADHD - and, of course, there are only two clinics we can to and they both have long waiting lists!)

The school psychologist called today (I know him well due to DS - how ironic that I know have to talk with him about DD - she was supposed to be my "problem free" child! HA!). I was telling him what was going on with DD - that seh was hospitalized for a week 3 years ago for a strep (strep A scarlet fever) infected lymph node the size of a plumb (she tested negative to a throat culture but the lymph node was full of strep A scarlet fever and she had the rash), that soon after she became Buzz Lightyear for 9 months and wouldn't answer to her name and then all of sudden she was back - but with a ton of rituals. Eventually they seemed to disappear and we had a couple of issues but nothing big. Last year she wouldn't go to the bathroom at school for 5 months because - we later discovered - the bathroom wasn't blue which they fixed by putting a blue poster in the stall. And then all of a sudden this fall she had full blown rituals, obsessions, etc. again.

I told him a little about PANDAS and what my doctor said. He told me that he had a girl go through similar things and they found out two years later it was actually due to Lyme's Disease. (Whe was tested for this so I know it isn't Lyme's). But he also felt it sounded more like PANDAS due to the cyclical pattern and the history of the strep infection. He said that tic disorders and tourettes and OCD are soooo closely related that you can't dismiss one or the other - but the doctor is medical and probably doesn't realize that.

Now we have to figure out what to do next. I am going to find otu if the pediatrician can test for PANDAS or if there is a specialist she knows that is covered by insruance. And if not - then the school psychologist will try and find someone. I am just happy that someone has finally listened to me and agrees!!! And I have to say - he has really responded! He even called back to give me the official PANDAS website so he definitely is taking this seriously and doing his homework. Let's keep our fingers crossed!!!

If it isn't one thing, it is another! And to think - I have a 5 year history with the school psychologist and was thinking this was the last year since DS was moving on to a different school . . . I guess I have another 4 1/2 more years!!!

[Amsmom]

to you elizabeth! you make a really good point with the PANDAS concerns. i am so glad the school psychologist listened to you

i am crossing everything hoping that you will get some helpful answers.

everyone should have a school psychologist as involved and caring as your kids'!!

[mommy007]

I'm glad you found someone who understands!

Is your child on any medication?

My son was diagnosed for 5 years and treated with stimulants - After a major bout of the FLU this time last year I took him to a neurologist at A.I. Dupont hospital. After reviewing all the "assessments" done on my son and taking a complete family history. The doctor concluded he has PANDAS,

He has his ASO and AntiDnase B titers check every other month - they were quite elevated - now they are slowly coming down. He had OCD, tics, frequent urination, rituals, etc.

He has come a L O N G way this year. I have charted all his illness and symptoms - and clearly when he get ill he gets symptomatic.

We found when he was on stimulants his symptoms got much worse, the movements increased as well as the OCD.

I wish you could see a doctor sooner, they need to test his blood for these titer counts. My son takes antibiotics twice a day. I have been intouch with the research people at the NIH. We received a quick appointment with the doctor when we explained the severity of the symptoms - do what you can to get you child seen and tested. It's a long road to recovery, but in one year my son is a healthier child.

In his first quarter in 6th grade (age 12) he make honor roll! Sure he has issues, taps his feet all the time. But I pushed for an IEP, he has a "helper" in the class - she helps everyone, but is there to make sure is is given the attention that he needs to succeed.

Good luck to you - If I can be of any assistance just ask!

[eaccae]

Thanks for your info. I have put in a call to my doctor again - she has been out all week and she is out again today so I asked to speak with another doctor. I don't know if they can do the titer tests or not? And should the doctor I be referred to be a neurologist? Somone else told me to see a neurologist as well but others are telling me a psychologist. The school psychologist has no idea. I would like them to test asap as her symptoms occurred again with a sudden onset in October . . . I don't want to wait for them to disappear to have the testing done. And of course there are only two pediatric neurologists on our health care - both a good 45 to 60 minutes away!!

I contacted NIH last week but have had absolutely no response.

[eaccae]

Well I called the Dr.'s office and spoke to the new doctor - and basically gave him a list of the blood tests - he filled out a form for the lab and DH is picking it up. He was a nice guy! Looks like one of the two pediatric neurologists covered by health insurance is really good. Well . . . . we'll see how it goes.