Need PANDAS Specialist NOW

[coachadamb]

We live in West Michigan. My son, now 18 was diagnosed with PANDAS in 2006. What started as a tic has progressed into a constant tremor to his left side, the tics now give him a momentary loss of function, memory and thought. I have exhausted all avenues except here. He needs help and needs it now. He is becoming withdrawn and today he walked 4 miles home from school because he can't take the lack of concentration, the tremor and the tics in class. He is a senior in High school who is having such a hard time. I can give more information upon request.

I thank you in advance for your response. Coachadamb

[wornoutmom]

coachadamb - I also live in Michigan and may be able to help. "PM'd" you some info.

[EAMom]

We live in West Michigan. My son, now 18 was diagnosed with PANDAS in 2006. What started as a tic has progressed into a constant tremor to his left side, the tics now give him a momentary loss of function, memory and thought. I have exhausted all avenues except here. He needs help and needs it now. He is becoming withdrawn and today he walked 4 miles home from school because he can't take the lack of concentration, the tremor and the tics in class. He is a senior in High school who is having such a hard time. I can give more information upon request.

I thank you in advance for your response. Coachadamb

 

Hi!

I'm not as Lyme knowledgable as many others on this forum...but when you mentioned tics/lack of concentration/memory loss...well, I am thinking that you also need to rule out Lyme.

 

Some of the kids on this forum have both PANDAS and Lyme btw.

 

Also, if he was tested for lyme 2 years ago, and it was neg, it may be worthwhile to retest. Also, some Lyme tests (Igenex) are better than others.

[Mary M]

We have established a Michigan PANDAS support group. You are welcome to become a part of that. I'm sure wornoutmom will get you the info but if not, PM me and we'll get you connected.

Mary

[lmi1973]

Hi, also in Michigan (Lansing area) would like to join MI group, but am very new to this so not sure how to? Seeing Dr. K next week in Chicago, but have gotten some feedback from others that he is not a proponent of long term abx, which sounds like is nec. Did not even bother with pediatrician as I want an expert NOW to see and help my son. Wondering if anyone has had any success with local doctors? LOVE this forum!!!