Cleveland Clinic Doctor Appt.

[P_Mom]

Hi All,

I just finished making an appointment at the Cleveland Clinic for my son. He just turned 5 and I believe him to have PANDAS after sudden, explosive vocal tics and ocd after strep this summer. When he was three and had strep, he showed signs of ocd, mild, went away and we didn't think much of it. This time was terrible. He is doing well now, and I want to keep it that way as I understand with more illness/strep, it just gets worse and harder to manage. He is not taking anything right now, and his lack of protection scaes me. I have had NO success with docs here in Pittsburgh, we either get told PANDAS is not real, or, yes, I heard of it, believe in it, but do not know what to do about it. I found a doc at Cleveland Clinic, 2 hr. drive, who has heard of it, has dealt with it, and treats it!! I was told he would not brush us off or turn us away without helping us! YEAH!! I was wondering if anyone else had gone to Cleveland Clinic ? (Cleveland location, not Florida)

Thanks!

Kelly

[michele]

We go to neurology at the Cleveland Clinc. What is the name of the Dr. ? Maybe I should switch to him! We see Dr. Erenberg who is very respected and deals mainly with tics. He is older and has been treating this for many years. Known as the grandfather of tourettes. We drive an hour to see him. However... He is not big on diagnosing PANDAS or treating it. I don't know if he is 100% in belief in the PANDAS Syndrome. He believes some people have an immune problem that causes tics. He has never suggested medication if that is what you are looking for. He believes in wait and see because he is so young (5) and it can change alot. Don't get me wrong he is a smart Dr. and spends a lot of time looking at Andrew and talking to him and summarizes and talks to me but he is not big on the GF or the antibiotics or supplements. I did that through an immunologist on my own and a DAN. He says try it if you think it works but he has not seen anyone who stuck with it over the long haul because it made such a difference. He believes in the natural course of tics and if the tics have gone away before they should again. In fact he has rarely ordered blood work. We see him every six months. He is in Sheila Rogers book. But I found with each exposure the episodes get worse and last longer for my son. That is why I put him on the antibiotics and found other Dr.'s to also consult with also.

Michele

 

Hi All,

I just finished making an appointment at the Cleveland Clinic for my son. He just turned 5 and I believe him to have PANDAS after sudden, explosive vocal tics and ocd after strep this summer. When he was three and had strep, he showed signs of ocd, mild, went away and we didn't think much of it. This time was terrible. He is doing well now, and I want to keep it that way as I understand with more illness/strep, it just gets worse and harder to manage. He is not taking anything right now, and his lack of protection scaes me. I have had NO success with docs here in Pittsburgh, we either get told PANDAS is not real, or, yes, I heard of it, believe in it, but do not know what to do about it. I found a doc at Cleveland Clinic, 2 hr. drive, who has heard of it, has dealt with it, and treats it!! I was told he would not brush us off or turn us away without helping us! YEAH!! I was wondering if anyone else had gone to Cleveland Clinic ? (Cleveland location, not Florida)

Thanks!

Kelly

[P_Mom]

Oh my gosh, back to square one. It is Dr. Erenberg we are set to ee. That really ticks me off because I was SO ADAMANT about the doctor recognizing and treating PANDAS when I called and they assured me he was!!! I told them I don't want to waste my time, over 2 hour drive. I am soooooooooo glad I found this post. It has helped me tremendously and now saved me time, money, and emotional energy!

 

Thank you!

Kelly

[P_Mom]

Okay, does anyone know of any doctor out there somewhat near Pittsburgh who will diagnose and trest PANDAS?? I really think my son should be on a preventative antibiotic! HELP!!

Kelly