PANDAS

[Guest Alyssa]

Hi, my name is Alyssa and I am 16 years old with PANDAS. I was diagnosed in the 4rth grade, but now I am well or at least well enough to live normally with few symptoms. I don't know how hard it is to be the parent in this situation but I definately know how difficult it is to be the child. When I was diagnosed nobody had even heard of the illness. After reading these entries I feel extreme sadness to all the parents who are suffering with thier sick children. Usually, it is very hard to find good Doctors or information. I know I was dragged to at least 100 who knew absolutely nothing. However, there is hope. I am well, and there is hope for your children to be well also. I underwent many treatments in New York Hospital and had some of the best doctors in New York. I was put on Penicillian, but a better drug is amoxicillian. (or at least it was for me)

 

The doctors I had were amazing and I am indebted to them for life because they got me to where i am today.Their names were Rosarrio Triffiliti, and Karen Onel. Dr. Rosarrio Triffiliti is now currently located at the Universtiy Hospital In Newark New Jersey. Dr. Karen Onel is located in the Hospital for Special Surgery in New York. The phone number for her is 1-212-606-1302.

 

The treatments I had were as follows

5 week course of the steriod Prednisone (to help with Tics)

IVIG (targeted to help Ocd)

Pulse Cordtisteriods ( This treatment work the best on me and is one of the main reasons I feel I am well today)

 

I also take vitamens daily which help more than you could ever comprehend. Especially flax seed oil. It is a miracle for me. i take a table spoon daily. I can see a dramatic difference from taking it to not taking it. I recomend for you child. It tastes horrible but make them take it. It will help. You have to give it time too. I also am on Cultural which is a Probiotoc to replace the good bacteria that the Penicilian (or amoxicillian) has killed while also killing the strept. I also take Vitamen E and CO Enzyme Q10.

 

I know these treatments sound drastic, and they are very expensive, but for me, they worked wonders. Three years ago, I didn't think I'd be well enough to do anything but now I am. I'm in honors courses in school and getting A's, and im also on varsity track. If you don't want to take the following advice that is fine, but I just wanted to try to help.

[tictoc]

Thanks, Alyssa! As a parent who probably had PANDAS [has! -- there oughta be an "Adult PANDAS" like "Adult ADD", if there isn't already.] and who probably has at least one kid who has same, I can maybe tell you something about all 3 [me now, me then; and my son, along the way].

 

Re: your story, right now I'm thinking about then, because I remember terrible ordeals from strep but there was no PANDAS then and barely penicillin; certainly not ADD. I even had our family doctor tell me that my tonsils couldn't be removed while they were inflamed (at the time of my appointment with him they were, but since they almost always were for a couple of years I never got them out, because by then they (the medical community) were saying that you should KEEP your tonsils because they actually DO have some beneficial value, apparently unlike your appendix, which I also have managed to keep until now].

 

My mom was pretty chagrined at the time but there wasn't much she could do about it based on what the doc said, so it was just grin it and bear it; she worked fulltime so it was very difficult for her to leave me at home in such a condition. But I was finally able to get some penicillin altho they didn't want to have kids get a tolerance to it, so were pretty stingy with it, and that was before amoxycillin. When my son had it in grade school, at least they had amoxycillin, which was a godsend I think. He didn't need/have the extensive Tx you did, but it still was painful for me while he had it because I remember how painful it was when I had it-- interminable, and it felt like someone was lacerating my throat/tonsils when I swallowed-- if you could! Even chix soup, for crying out loud!! And oh! the headaches and then the lethargic and exhausted recovery going back to school! Yikes!! Get me outathere!!!

 

Then when I was in my early 20's at college I had a bad outbreak and an IVIG, which is similar to the pulse corticosteroid therapy you had. Well, that sure cured me (it was strep not "mono" (the "french kissing" disease? or maybe you don't/shouldn't know about that ?-)). But, girl, did those globulin needles looked B-I-G! and H-U-R-T!

 

Well, it's wonderful that you've come back from the abyss, alyss!

[sorry, but I couldn't resist blurting that out, what with my ADD/TS/and everything ]. Best of health!

[Guest Guest]

Hi tictoc

 

With your long experience, do you think that tonsils removal may help in the overall improvement of TS kids?

[tictoc]

Good question! Sorry to say, I don't know but wonder how one could find out whether it is so? Is there a doctor in the house?