Where is the strep located in the brain?

[patric]

Hi,

Sorry this is happening for your son. I have to agree with EAmom to contact Dr K. First of all, you can email him for free and he can direct you. Second, since your son's symptoms have gone on for so long, he can treat aggressively, which may be a necessity. Third, many people have had great success with dr K.

 

Also, I don't think it is a matter of one doc being "better" than another. They are all amazing and our heroes, but some can be better for certain protocols. IMO, I would contact dr K. As this has gone on for you for too long and you need a dr. Who will be a specialist of pandas AND treat aggressively. I am not sure about the aspergers and how it may affect whether he will treat him, but it can't hurt to email him and find out. Also, he is probably the closest for you as he is out of Chicago. I can only speak from my own experience and knowledge and I do respect that others have found success with different techniques, treatments, and doctors.

 

Wishing you the best! There is hope! Lots of us have seen our children go from about 10 percent functioning to 90percent and lead perfectly normal lives.

[patric]

Oh, and you might want to read the book, Saving Sammy by Beth Maloney. I think you may get a lot of clarity and see lots of similarities in your stories.

You aren't alone in this, and there is hope and help. The forum is wonderful and will get you on track with treatment.

[kimballot]

Sorry Chemar...this is the post from Michele I was thinking about...you may be right about the prohphylactic antibioitics. (Michele was referring to Dr. Murphy not doing IVIG.)

 

We went to see Dr. Murphy in Florida. She was very knowledgeable on PANDAS and was able to diagnose my son with PANDAS. It felt great to have this verified. However, she did not write any prescriptions for meds because we live out of state. She did make up a treatment plan that included OT. She was very forsightful because he is having issues with motor skills showing up now. We have done OT for a year now. I have to tell you her treatment plan did help with some Dr's to write a script for antibiotic long term treatment like the immunologist. Others will still be skeptial of PANDAS even with the diagnosis from her. I have had trouble getting his neurologist to go along with the PANDAS diagnosis. He believes it is TS. I don't think she uses IVIG but rather suggests Tenex or Abilify for tics. Possibly ADD meds like low dose of Ritalin or anti axiety medication and getting help from a psychologist/psychiatrist for the behaviors. She does not recommend tonsils being removed either. So if you are looking for a fix rather then medicines to mask the symptoms she might not be your answer. I could go over more with you if you want to PM. Dr. K seems to be the one who is doing the IVIG. I am waiting for his reseah to be published.

 

Michele

 

Hi - I just wanted to chime in that I think Dr. Murphy really approaches each child individually. In our case, she agreed with IVIG every 8 weeks due to immune deficiency and PANS symptoms, but also made it very clear that my son should be on antibiotics for "the long term" and said that meant continuing well after IVIG had ended. The only thing she seemed "routine" about was her recommendations for supplements - the exact type of omega 3 she liked, in particular. Other than that, I felt her recommendations wer tailored to my son.