doctors

[lss]

To all,

 

I think it would be beneficial to all, especially new people to have everyone post where they are located, so if in fact someone has a good doctor who knows about Pandas, others in the area can contact those drs. Just a thought.

 

ls

[michele]

North Canton, Ohio

We see a great ped neurologist "Grandfather of Tourettes" at Cleveland Clinic for the tics and tourettes symptoms. Dr. Erenberg. He won't treat the PANDAS though. He is older and a skeptic that it exists, especially with the latest research that doubted its existence.

 

I haven't found a medical Dr. yet who treats the PANDAS in Ohio other then a DAN! Dr. Demio in Cleveland. We had an immunologist who prescribed eight months of antibiotics, Dr. Berger but he has left the practice to research at Case (hopefully PANDAS) and the knew Dr.s that replaced him don't want to treat my son.

 

We went to Florida to Dr. T Murphy to get diagnosed with the PANDAS. Anyone here see neuro Dr. D. Gilbert in Cincinnati, OH? He is on some PANDAS research articles but not sure how he personally treats PANDAS. I am exhausted from searching for a Dr. who knows how to treat PANDAS. It is like fishing in a pond. Those of you who get a knowledgeable Dr. the first try have awesome luck.

 

I guess we may have to travel to a different state again soon.

 

Michele

 

 

To all,

 

I think it would be beneficial to all, especially new people to have everyone post where they are located, so if in fact someone has a good doctor who knows about Pandas, others in the area can contact those drs. Just a thought.

 

ls

[hopefulinsc]

I think that's a great idea - especially since I am in need of finding a doctor that has some working knowledge of this - not just what they've read in medical journals.

 

Thanks.

To all,

 

I think it would be beneficial to all, especially new people to have everyone post where they are located, so if in fact someone has a good doctor who knows about Pandas, others in the area can contact those drs. Just a thought.

 

ls

[lss]

RE: Doctors,

 

We live in Lewisville, Texas a suburb of Dallas and have found Dr. Chiniwala who is a peds dr as well as Internal Medicine. She was open to the idea of Pandas, even called Dr. K in Chicago and is working with him. Also a dr. NOT to see is neurologist Chudnow in Plano, no bed side manner and doesn't distinguish between Pandas and Tourettes, he said there is no difference. Dr. Collins in Dallas, who is a psychiatrist also very nice, does not believe in given kids anti-pyschotic drugs, she tried Tenex for our son. She knows about Pandas.

[Pudgeo]

This a great idea! Hopefully it will help parents! I live in the east bay or outside San Fransisco CA

Dr Mielke (a DAN DR) was who formally diagnosed my son with PANDAS and called my pedi Dr Hearey(Kaiser) He was very open to the diagnosis. My pedi neuro from Kaiser (in Hayward) told me my neuro science PANDAS results were meaningless...I can give her your name if you PM me. She was also the one who mis-diagnosed my son with seizures for 8 months! She totally could not "think outside the box" Sarah

[ajcire]

I have never been to or heard anything about this dr. but thought it might be helpful to anyone looking in this area... I want to clarify that I only am posting this as I figure any doctor who even acknowledges pandas exists is a start.. I really have never heard of her before.. just came across her in my research.

 

 

http://cbtny.com/pandas

[pmoreno]

Well, of course most of you know that I would recommend Dr. K from Chicago. His approach is to give a large dose of IVIG over 2 days and that you don't need to repeat IVIG if you give the right dose in the first place. He says that smaller doses given several times are like not giving anything at all. It just has no therapeutic value. He also believes in prophylactic antibiotics for at least 3 months post IVIG and possibly up to a year. He feels that the PANDAS will go away slowly over about a year after tx and that you will have ups and downs during that year. Since we just had it done 5 weeks ago, it remains to be seen. It was good for few weeks, bad right now because of this odd behavior that I can't pinpoint - from my other posts I've mentioned this thing where she keeps seeing people who are being mean to her - could be yeast from abx, or yeast die-off from natural anti-yeast products I'm giving.

 

The other clinic that I would highly recommend is in Melbourne, Florida close to Orlando. We went there this past summer - had Gaby diagnosed there with PANDAS - we are still in touch with them on a regular basis. These phone consults ad up (I just had one last month so I will have to wait a few weeks before I can afford to call again and pursue some of these odd behaviors with them) The clinic is called Creation's Own. Dr. Jeff Bradstreet is known all over the world - has patients from Europe, middle east & Israel. There are a couple of other doctors on the team - I prefer Scott Smith - easier to get ahold of, a little less expensive and explains things very well. They work with autism, PANDAS, PDD, most auto-immune & neurological issues. Good luck to all. Pat

[Dedee]

Ok, I'll bite. We are in Nashville Tennessee. Although we have a large childrens hospital here that is a teaching facility, I have not been successful in finding a provider in this area. We went to the "top notch" pediatric neurologist and ID physicians here. Neither really gave me the time of day on the PANDAS issue. In fact the ID was very condescending. The neuro was fine but just wanted to use meds and not address the real issue (PANDAS). My regular pediatrician admits that she is not very up to date on PANDAS and it's treatments but is a believer and is open to helping with treatment when guided by a specialist. Therefore, we drove to Florida to see Dr. Murphy, who sent a treatment plan to our pediatrician and made some general recomendations and here we are. I am at least thankful for an open minded pediatrician. Sorry it got long.

 

Dedee