PANDAS and ADHD

[michele]

Sorry for the confusion. Yes he was worse after Latimer maybe because of the steroids, then the transition to school. He was having rages, tics and compulsions and lots of anxiety. The rages continued through the summer and until we added risperdal and the tenex and now prozac to his meds. We started with a new psychiatrist in late Aug. His attention has always been short at school, he loses focus and needs alot of checking on for directions. Now he is doing better in all areas. Moods, attention, school work and rages. Now he still has anxiety and goes on his toes, or cracks his fingers, and has a little sniffing tic but he is behaving. I mean not perfect, he still argues some at home and gets mad and overreacts but not to the degree he did before. Our house is much more calm. I just talked to the school today and they see no issues with him at all. He gets along well, is well liked, nothing to indicate an issue. She said the other spectrum kids they work with have behavior issues at school, he has none. Of course he always has held it together there and lost it at home. He is no longer having temper tantrums at home. We did behavior therapy and rewards for months and nothing really worked. It has to be the meds. Or if he was having an episode this summer after he was sick in June and it took till now for the residual to go away.

 

Kids with tics are usually given non traditional meds like clonidine or tenex (BP meds) for attention/hyperactivity) issues. Also the neurologist said that the abilify or risperdal can improve their attention. My son is so focused now to do his homework it is amazing. His grades are great and he is following directions and doing much more independently. He no longer fights to do homework or go to tutoring. I am telling you I have a changed boy! Now if we can only keep it this way!

 

 

michele,

you must forgive me, I want to get your story right in my head. I was under the impression things were not too good even after your visit with Dr. Latimer? or is that about issues other than attention? could you clarify that? these meds help his attention and you say he is doing very well in that area, are the ragey behaviors better too, or is that a separate issue? was it that he just did poorly on the pred? sorry, I just like to understand. great that he's doing well then on these meds, I know you've tried many.

 

Faith

[kcdc3]

Trg girl/kcdc3:

 

Trg girl....Strep will make symptoms worse...so I'm assuming she's not on prophylactic abs? What ab (and dose and how much does she weigh) is she on right now?

Would your doc let you do a 1-2 mo. trial of a strong high dose ab like augmentin or Azith?

 

kcdc3...same question...is you dd on abs and which one?

 

Where do you guys live? (did you already post this?) Maybe someone can rec. a doc.

 

I live in NC and am having a TOUGH time finding a doc to give me the antibiotics. I am so tired of calling docs and asking the same questions. I find docs who "treat" PANDAS patients, but only throw drugs at them to mask the symptoms of tics. When I ask if they are open to antibiotic therapy, I always get a No. I really don't have the money to travel to DC to see Dr. Latimer, as I understand that she does not take insurance. I did get her ped to give her a 30 day dose of Amox. when she last had strep, but I don't think it was strong enough. She did get much better, but then tics appeared and she went down again. He will not prescribe any more antibiotics. Very frustrating.

[EAMom]

Hey kcdc3...

why don't you start a separate thread asking about NC docs...maybe a lurker will come out with someone.

[EAMom]

It just occured to me...I think Mom Md is in NC. Why don't you PM her and see what docs she used/found helpful?