Would you still consider PANDAS?

[momof3inTN]

So I finally got my dd's medical records yesterday. Last night I went through all of them and wrote down all illnesses. I found out she never tested positive to strep but looking through she should have been tested a couple of time and wasn't. I compared hers to her borthers records and I found something very interesting. Oh also I have two dx with PANDAS/PITANDS. At 3 months old she was dx with pneumonia along with the oldest ds and middle ds as sick too but dx as URI. Now comparing everything, she would get sick within a few days of both boys getting strep, bronchitis, sinusitis or what ever but they alwasy said it was URI or sinisitis. In June of 04 which would make her almost 3, when I world came crashing down, she got sick with "something". High fever, red throat, congestion, you know the works. Started her on Amox with negative rapid strep but they cultured it and it was negative. the next day she was back to the dr with fever of 104.6, they gave her a shot of abx and did another rapid and it was negative and the culture was negative. I have in MY noted that a few days later the fever was down but she was still real sick, red swollen tonsils and white patches. (I don't know why I didn't take her back) Looking through all of this she has bouts of frequent urination, bet wetting when she was 5 yrs old and behavior problems all right after one of the boys got sick. In Nov of 08, she was 7, we started the Feingold Diet and our world was better. In Aug of this year she got sick again with what we thought was EBV but we still are positive about that cause blood work didn't show an immediate exposure but had elevated numbers for past exposure. All lymph nodes in her body were swollen and about 3-4 days after getting off Omnicef for whatever infection she had she became the Crazy Kylie that we all know now. Body twitching, rage, eyes dialating, overly emotional, throws things the works and then my son also started in with being overly emotional, OCD flaring, ADHD flaring.

 

So with all that said, I do understand that strep can live other places in the body besides the throat so I guess she could have had strep somewhere else. I'm wondering if a doctor is going to listen to me when I tell them that I don't have a confirmed case of strep in her but I do have confirmed strep in her brothers (one of which is PANDAS). When she was dx it was with PITANDS since we couldn't confirm that her problem in August was strep.

 

Would all you still consider this PANDAS/PITANDS?

 

Thanks

[EAMom]

 

Would all you still consider this PANDAS/PITANDS?

 

 

 

ABSOLUTELY!

[Fixit]

 

Would all you still consider this PANDAS/PITANDS?

 

 

 

ABSOLUTELY!

 

 

Ditto

[Mary M]

PANDAS/PITAND seems right. My dd did not test positive for strep on a rapid or a culture during her first major exacerbation. She also did not have elevated titers at that time. During second extreme exacerbation she did not test positive on a culture or rapid BUT did have elevated titers...no illness...well other than PANDAS.

 

Hope it helps to know others fit a similar presentation,

Mary

from Michigan

[T_Mom]

Our daughter has not tested positive for strep (that we have "caught")...but with antibiotics and steroids her OCD/ticcing subsided...What often makes the case for PANDAS or PITAND is the response to treatment.

[EAMom]

BTW, re frequent urination...that is something that is seen with PANDAS, but NOT non-pandas OCD. I think it is the Dr. Latimer podcast that mentions that:

http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348

[colleenrn]

Yes, sounds like PANDAS. There are many places where strep can hide (sinuses, ears, nose, gut, perianal area) that would not show up on a throat culture.

Colleen