AmyB

I was curious if it is allowed for the neurologist to send info. and opinions dictating the care of my child. I had 2 neurologist at Childrens Boston send letters with out permission to the ped. telling her not to give my son any abx unless he had a pos. strep test. He hardly ever tests pos. for it and I don't think his trigger is just strep related but more infection related. So he is now ticcing like crazy just getting worse and I cannot get an abx because of the letters they wrote to the ped. I feel like a junky trying to get abx from my ped. for my son. I'm curious if DAN doctors can give ABX. The ped. is now on board trying some new heavier psych meds and mental health providers. She was open minded but now not at all. Its amazing how some parts of the country doctors will treat your child correctly and other parts they won't acknowledge the illness as in MA. This ignorance is not tolerable at the hands of our children. There should be repercussions for these doctors who poorly treat, incorrectly treat, or just plain ignore PANDAS and or PITANDS patients. I cannot believe living in the Boston area I cannot find medical help for my child. Sorry ladies just angry and venting. Please tell me some of you feel my pain today. I guess when DS9 gets worse I get angry. I thin Dr.B is next in July. Thanx for listening.

Hi my DS9 has problems with myositis (spelling). It's another immuno thing. He seems to get it a few times per year usually after a big infection. He would experience really bad leg and calf muscle pain where he couldn't move. The ped. just says "lets keep an eye on that" brilliant advice huh. That just provides more supporting evidence. I think we are going to make an appt. with Dr.B. We will have to wait till July 1 to change our insurance to an out of network plan. There is really no one here in MA to help.

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.

Hi Ladies Thanks for the help. Really the information and the wisdom helps, and really just support. I am waiting to get something back from Childrens Boston. I am curious to see what it reads in regards to the 504 plan. I have a feeling they are only going to write ADHD and not include PANDAS; which he was diagnosed in Aug.08. Actually our first visit there before any blood work was done was chronic tic syndrome, and after doing the blodd work they changed it and said PANDAS. Of course I've never heard of it. We talked about it and was told to google it etc. And slowly the neurologist tried to step away from it, actually more from the treatment. No antibiotics, no ivig, just drugs and behavior therapy. I had him on the phone for an hour one day we were heated but politely disagreeing. We could not agree. We went in to see him for a follow last year and he began to discredit Swedo. He said they Childrens and or Harvard (not sure who paid) paid for Swedo to come to Boston for a conference or discussion of some sort. She came and said she agreed the proof is not there and she has no leg to stand on. She had no support behind her and her research was not valid proof in the medical community. I was quite taken back. Also these "other doctors" who are helping PANDAS kids are "just out to make money off of us parents". He said no doctors should be giving out long term antibiotics, because a super bug may come and "my child could die", so dramatic. Whats funny is that he said that in the past he did treat PANDAS with long term antibiotics, ivig, but no more because it wasn't a cure and kids will relapse anyway. Basically just treat tics like a tic disorder , just the symptoms regardless of the cause; so ignorant. Thank you again for listening I mean reading. I will be back shortly.

1st...I would gather all the literature you can (actually print them out)...including, if you can get it, the information from the symposium on post-infectious syndromes in Texas last week. I am completely fed up with these doctors who somehow have their own hidden agendas, and think they know everything when, in reality they know less than nothing. Hand her the stack (it will be huge) Give her a list of doctors to call: Swedo from the NIMH, Cunningham, Lecker, Lipkin, Noel Rose from John's Hopkins, (get all the names from the conference brochure last week.) Finally, I would tell her she is ignorant, and breaking her code of "first do no harm!" Then drop her (I took my DS to a neurologist earlier in the year. His fellow came in first,and when DS told her he had PANDAS...he's 18, so I was letting him speak for himself...she started giving me the same thing. I don't take that ***XX*** anymore, and cut her off. At the end of the appointment...he was there, because of tremors...she asked if I would like her opinion on PANDAS, and I told her "no." She tried anyway, and I told her: "I didn't ask you,and your very ignorant on a subject you know nothing about. Now, if you'd like, I'd be happy to send you all the literature and proof that exists from some of the top doctors and research facilities in the country," and we walked out. Made me feel great! OK...now that I can get off my soapbox. There are doctors in the northeast, but you are going to have to travel. There's a list at the beginning of this thread, and if you PM me, I can give you names. But, there really are only a handful of docs who treat this. Personally, everytime something new comes up, I keep forwarding all the new documentation to all the docs in my past who either adamently denied it existed or who really just knew nothing about it. You might want to start doing that with the docs you've seen.s

I'm so happy to hear that. We might just do that. DS is not at his worse but Im afraid he is not great. I'm at the point where I hate to bring him for more strep, cultures, etc. They are most always negative but its clear he is reacting. Without a positve strep test there is no antibiotic.( well sometimes they have indulged me yet think I am crazy for asking for it). Asking for antibiotics is like asking for crack. It makes me feel dirty. They think its not necessary. Childrens also said no positve strep test no antibiotic. Im having a crazy day. DS teacher said she would like to get him on a 504plan. So I need to get something in writing from Bsotn Childrens that he was diagnosed with it. The doctor has gone and I have a weird feeling it might be difficult. He was diagnosed with it yet the nurse was reading back the notes and said that PANDAS was "of controversy" and not exactly proven. So they diagnose him with that in AUg08 and now NOV 2011 it somehow doesn't exist or diss proven. Sorry again tough day. I am so glad to here you has success. I might ask you a few more questions later if you don't mind. I've got to get the kiddos to bed. Ive been on the comp. way to long tonight. Thank you so much.

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