Just got a call from my daughter's pediatrician

[ma2ar2rm2]

He was just calling to let me know that he'd just treated a 6 year old girl for PANDAS, and he was so thrilled at her recovery. He said it was like a miracle! When she came to him, she was completely dysfunctional w/ sudden onset OCD, and of course. her parents were devastated w/ worry. He just wanted to let me know that he's been able to help several children that he thinks otherwise would have had very poor psychiatric prognosis, because of his experience w/ my daughter and he's so thrilled that he's able to do something to help these kids!!! He told me he was sorry that Allie has gone through so much because doctors would not try to help (we found this doc when Allie was 10) and he wished he had known what to do to help her sooner, but hoped it would be a comfort to us to know that her ordeal has served to save other children. Mostly, I think he just wanted to share the joy he felt in seeing this latest patient recover w/ somebody (me) that he knew would truly appreciate what had happened. God sure blessed us w/ this physician- and this physician has been blessed w/ my child as well!

 

That is such a wonderful thing to happen..I'm so glad God lead you to a doctor who was willing to listen and learn and that though your child and you He has been able to help other children. What a blessing.

I hope and pray one day I can say the same for my DD8 ped.

He was wonderful a few months back when he saw my dd and a month later told us it was PANDAS... I was ready to put up a fight to make sure she was given the antibiotic long term.. but he seemed willing to do that... ONLY now at yesterdays appt I'm begining to fear that his idea of long term and mine do not match up.. Everything I have ever read over here is that the child with PANDAS HAS to be on an antibiotic.. We found out on 4/30/10 that DD had PANDAS she has been on 250mg of Cefadroxil 1 1/4 teaspoons twice a day ever since. Her biggest issue was a Sensory issue and a bit OCD which is what took me into the doctors looking for answers in the 1st place.. after learning about the PANDAS I could see that alot of her other issues such as her moodiness and crying for no reason and alot of her fearfulness was PANDAS related also. because after starting treatment.. all of them went away.. The poor thing had been in my bed sleeping most everynight because she had this all consuming fear of the dark(which I thought was just childhood fear of the dark but seem to have gone away compeletly after being on the a/:unsure: Anyways.. since starting treatment.. She is doing GREAT!!!!! all the Sensory stuff is gone, She isn't moody she isn't fearful, she isn't crying for no reason, she isn't sad and can't tell me what is making her sad, She is the Happy, cheerful little girl I remember before all of this started happening just over a year ago..

Her Ped is so proud of himself that he figured it out and that he was willing to concider PANDAS when most doctors don't.. He admits that the 1st time he heard of it he wasn't a believer and he never would have been until he saw how bad my DD got with this last round of strep throat....

now to the use of a/b he told me when we started this that the treatment for it was long term a/b So I didn't have to fight with him.. Now he is saying "but noone knows how long they should be on it, is it 6 months a year.. or less, I'm thinking 3 months might do it" I'm wanting to scream.. Yes she is doing so well now Only having breakthough moodiness and fear when she has been exposed to someone who has been sick or when she was going to school and streo was running though every class room.. Since summer started she hasn't had on issue not one tiny problem related to the PANDAS UNTIL lastnight.. I think it had something to do with sitting in the doctors office that she might have picked up a little strand of something.. We had her appt at 8am and by 10PM she was crying her eyes out totally freaking out about the dark..not that it was dark in the room.. just that she could see that the dark outside and she couldn't be in a room that I wasn't in.. I gave her motrin and just let her sleep in my room.. but that was the kind of stuff that was happening before treatment.. but then had gone away and she has spent most everynight after getting better in her own room with lights out.. Like I said everything seemed to have been gone..

 

What scares me to death.. is that if he choses to stop her a/b next month what does that mean for her.... I just know that she will come in contact with strep no matter how hard I try to keep it safe.. and then she won't even have that back up of the a/b there to fight it off before it gets out of hand. When I brought that up to her ped.. he said "we will treat her as a child that at the slightest sign of sore throat we will swab her and if pos get her started on the a/b again... WTH?!?!?!?!? isn't that what you do for all children?????? So I should wait and wait and let my child suffer UNTIL she has a full blown strep infection... HELLO.. he is the one who told me about PANDAS... shouldn't he know that a PANDAS child doesn't have to have a strep infection for her body to make the antibodies and for her brain to be under attack???? what about those time she is suffering from coming incontact with it.. Do we have to let her get worse and worse and worse before treating it???? I don't know what he is thinking and I wasn't armed with info to fight him at yesterdays visit.. I have one month before seeing him again.. and I'm going to need to find all the info I can to help him see.. she needs to stay on the a/b in order to stay well???

 

OR I am I wrong.. I am so new to this.. So I could be out in left field but I'm pretty sure what I read here said they have to stay on the a/b???????

 

Sorry for venting on your happy threat.. maybe I shouldn't post this here..

 

I'm very happy that your doctor has figured it out and is helpful not only to your but is now helping others.. wish I knew of someone in Ohio who was as good..

[forjpj]

Thank you for sharing this story!! It is so wonderful to hear!!

Sarah