Update

[dasu]

I am not very consistent about visiting this board, but have received some usefull advice. One of the items I noted was that it was hard to follow the stories of individual cases. When I first discovered this forum, I naturally wanted to know what the outcome of each case was and would compare symptoms against what my daughter was going through. I almost wonder if each person here should have there own thread so you can do that.

 

That aside, I wanted to give a quick update. My 4yo daughter had a sudden behavior change last Christmas, after which she stopped talking, stopped sleeping, regressed, started rocking, displayed a number of verbal ticks and became very emotionally volatile. It was quite rough. Our primary care Dr suggested Pandas immediately (big help, having read through many stories here) She saw Dr L in April and after antiobiotics we saw a dramatic improvement. We did the Moleculera tests shortly after treatment, and she came up as likely Pandas. She also had her tonsils out in August (side note: make sure the ENT talks to the Pandas Dr.) She has gradually improved since then although there still are rough days. One other interesting effect of Pandas

 

My wife became concerned about our son, who is 6. He has some minor tics like licking his fingers and biting nails skin etc. He can be quite impulsive and hyperactive. He also There are also times where he just isnt there. These symptoms havent come on suddenly but they do appear as if they are worsening. Its not as clear in our heads, and a lot of childhood is going through stages. What really triggered our thinking on this was talking with other folks in Dr L's waiting room: many expressed that while one sibling was diagnosed with Pandas, other siblings eventually showed effects of it after time. After talking with Dr L, he had his initial appointment a week ago. We havent seen any positive change yet but it could be early...or we could be wrong.

 

[pr40]

My feeling is that the first thing that will go from the diagnosis of PANDAS is the sudden onset part. What is sudden is an exacerbation of symptoms following an infection. THat is what PANDAS shares with other auto-immune conditons. In principle, you have PANDAS but it is masked until it is no longer invisible.

If one sibbling has it, it is prudent to think of child's behavior as more than just "stages" . you need also to think of it as an early sign of PANDAS that may or may not explode down the line.

As a result, you may want to approach PANDAS as a condition rather than a disease. Perhaps, ds does not need abx at this point but he might need other less envasive treatment like methylation supplements, diet, and so on.