Jengels

I am sending many hugs and prayers to you and your family. YOU ARE AN AMAZING MOTHER!!!!

My ds10 was finally granted a 504 meeting this year after a horrible struggle all through 4th grade. We didnt get a diagnosis until midway through the year and at that time I had no idea what PANDAS really was and we had classroom management problems in addition to the teacher being a screamer. Absolute nightmare of a year! Anyway, I thought ds would calm down over summer but we got worse, so at my last visit to ped neuro, I got a letter from them to the school stating that he had PANDAS with OCD. The letteer stating some of the symptoms we were experiencing and how they affected his abilities in class and with homework. That is when they granted us a 504 meeting. I cried tears of gratitude. I felt like they thought I was making it up last year. Even though the teacher witnessed the tics, mood swings, bad handwriting, lack of focus, drop in grades ect. I practically lived at the school last year because I knew this wasn't right. My son had always been a/b and mid year was c/d/and even f's. Not acceptable! Yet they wouldn't listen to my pleas and just kept telling me he didn't qualify for testing. Ugh.....I was beyond livid. To sum up, with your letter from neuro that should be good. That is what finally got them to listen and accomodate my ds. I wish you all the best this year. PS, also we were new at the school last year. We didn't have the benefit of them knowing our family. The fact that you know the principal is awesome. Good luck with it all.

I feel your pain, the after school meltdown is so hard. Your in our thoughts today. My son came home and cried for almost two hours, goin g from crying to anger and back again. He also loves his teachers this year and the school for the first time is being cooperative. I had tears of gratitude at our 504 mtg this morning. It was like the first time they showed any kind of compassion and took our situation seriously. Last year was a nightmare because we didnt have a diagnosis and his teacher was a screamer (just awful). She thought he was just doing some of the things on purpose (even though we have numerous conferences about ds's tics and behavior). Anyway, that was last year and this is today. Today the school cared and for that i am grateful and somewhat optimistic. Thanks for your post and Best wishes at your mtg!

Hi, he is allergic to penicillin and can't get pills down, so he is on clarithromycin 7ml in morning and again at night. We were told about the penicillin allergy when he broke out in a rash within 24-48hr after taking it for a strep diagnosis when he was around 3 years old. I am thinking of taking him to have an allergy dr. To have him tested on the penicillin allergy just to make sure since that was so long ago. I want the best antibiotics to be avail. to him. Also, yes we have all been tested and they were neg. Thank you for sharing your experience with us. I have noticed a slight improvement in mood, i think. It is hard to tell because there seems to be so much going on at once. It tears my heart up to watch him struggle. I hope we find something to alleviate at least some of the symptoms. Today i watched him almost saw his forearm off on the edge of the table. He just kept doing the repetitive movement up and down until he "got it right" and if i try to talk to him in the middle of one of those he just says"shhhhhh" really loud and then lets me know when he is down and we can talk. We have a great neuro, but i found that dr. Murphy is approx. 2 hours away. So I have been in touch with her office to try to get an appt. I am keeping my fingers crossed. Meanwhile school mtg. In the am. Wish me luck and thank you so much for your response.

I absolutely agree.

Thank you so much for your response Nancy. My son is 10 and was just diagnosed this year, even thought we have had symptoms since 8. We are on the abx right now. It is our second round and i do not see awhole lot of change. He has vocal and motor tics in combination with ocd just as many others have described in their posts. I have learned so much since the diagnosis but feel confused and overwhelmed. I know that i am not alone after reading the posts. I am glad we now know what it is at least now. Thanks for quoting the light at the end of the tunnel. I needed to hear that today. It has been a rough week with school starting. I have 504 meeting on friday with the school. Last year was an absolute nightmare. I am praying for us all.

My ds had been diagnosed with PANDAS and i have read several articles about the body being able to fight it off in adolescents and then other articles stating because its so new there isnt any long term research. So i am just curious if anyone was able to witness this with their own child in or soon after adolescents. I would also like to add my gratitude for this site. I thank goodness we are not alone fighting this battle. Reading all of your posts have helped to put this seemingly endless disease into perspective for us and leads us to regain hope.