Northeast

[AmyB]

Its nice to hear you found a good doctor at Childrens. Is he doing long term anbx? Is your daughter doing better now? My DS8 is not terrible at the moment but not great. Have you gone to him recently? I'm just wondering if he feels the same as a believer or changed like Torres. He sent us to a Dr.Chapman at Childrens Boston in Lexington. She was no help. She also said its not proven and she knows nothing about PANDAS and she could not help us. She is just useful for drugs to combat ADHD, nothing more really. It makes me wonder why Torres sent us to her knowing she feels that way and not somebody like Wolf. Is your DD doing well? If you think he is still on board as a PANDAS support I may make an appointment. I just feel like I have been burned and wasted my time with them. Also I may look into an immunologist. I guess he has been getting the teachers attention lately with tics and inattentiveness, and not finishing class work timely and then he gets a little upset ( down on himself). She wants to do a 504 plan hope it helps. Thanks so much looking to hear more.

[NancyD]

Amy,

 

I live north of Boston and have either been to or spoken with all the PANDAS literate doctors here in MA over the past decade. I am happy to share with you what I know and have experienced with those doctors and CHB. However, I recommend that you spare yourself years of heartache and frustration and go see Dr. B in CT or Dr L in Bethesda. We have seen both of them as well. In the end, you will be happy you did! Email me if you'd like to talk.

 

Nancy

[AmyB]

If your child is on abx, he may not test positive on a rapid strep. My son doesn't, but he presents with headaches, bellyaches, his tics go crazy as do all the other fun parts of being PANDAS. I contacted Dr. Trifiletti in NJ, we are in FL. He has been awesome so far. Very happy with him. Have a phone consult scheduled today to review all the labs he ordered, and setting up a treatment plan.

[Bcox118]

Hi everyone

 

I'm not on too often anymore or actually more of a reader. Things at school for DS8 is not so great. Hes not finishing work, ticking, not paying attention just way off. Second call from teacher since school started. He hardly ever tests positive for strep. I have lost hope for the strep test. He was diagnosed with PANDAS aug 08. His neurologist at Childrens Boston has left and really wasn't much help at all. When he left he recommend and transferred DS8 to another neurologist at Childrens. We met her a couple of weeks ago. No help at all. Childrens Boston has taken the stance where it really doesnt exist. She was terrible. She had said that she doesn't believe in it, there is no proof, and its the red herring of the medical community or what ever that phrase is. She said I would be hard pressed to find any PANDAS support at Childrens Boston. I also asked about seeing an immunologist DS8 has a miositis problem 3-4 times per year also. She said they dont want to see any of THOSE patients anymore.

 

So I need a GOOD DOCTOR. Anyone have any suggestions in MA. Please dont bother yourselves with Childrens Boston they offer a whole lot of NOTHING. Sorry to anyone who likes them just upset.

 

Amy

Hi Amy,

 

We too went to children's last yr for my dd. Diagnosed w tourettes and OCD, but he mentioned he thought it could be pandas. It was dr T, who has since left. We've been doing celexa and did cbt, but no help and she's worse than ever. Have appt with dr geller at mass gen in a month, but will be 2500$ out of pocket. Thinking of canceling now and going to dr B. Only thing is, they're doing a study at mass gen right now trying low dose abx for kids w OCD to help with therapy (not to treat pandas). Curious about your sons symptoms and onset.

[monarchcat]

Amy, I am also in MA (north shore) and agree with what Nancy said... go see Dr. Bouboulis. We tried Childrens and got confirmation of the diagnosis and an RX for low-dose Pen VK. Yes, it was antibiotics, but it wasn't nearly aggressive enough, and we got a speech about how we needed to track titers for a year and if they didn't rise/fall with symptoms then it wasn't PANDAS. My son's titers NEVER rise. Period. After that we went to Dr. B and have been been on appropriate treatment since.