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AmyB

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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

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How about running over to CT (Darien and Stamford) for Dr. Denis Bouboulis. We are seeing the longest and most effective recovery in 2.5 years with abx alone. I cannot sing his praises more - he is no nonsense, gets down to business, digs deep for any possible co-infections and our interactions afford me some respect. In addition, he has been instrumental in restoring my beautiful little boy back into my arms, healthy, happy and practically symptom free for 3 months.

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How about running over to CT (Darien and Stamford) for Dr. Denis Bouboulis. We are seeing the longest and most effective recovery in 2.5 years with abx alone. I cannot sing his praises more - he is no nonsense, gets down to business, digs deep for any possible co-infections and our interactions afford me some respect. In addition, he has been instrumental in restoring my beautiful little boy back into my arms, healthy, happy and practically symptom free for 3 months.

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I'd also love to add that Children's Hospital was NO help to me either. One of the most prestigious hospitals in the world. They did not want to help us at all, I guess the illnesses that are unexplainable aren't teachable to their residents.

 

We went to Marland for a cure to our mysterious illness.

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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.

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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.

 

Amy,

After reading both your posts ....if BC's is not willing to diagnose PANDAS...what are they willing to say he has?? If a child is ticcing- there is surely some type of diagnosis, right? I would think they would be willing to state Anxiety/Tic Disorder or something that would, at least, help you get 504 plan in place to help your child. This would be helpful in the short term to get resources he needs until you can get to PANDAS friendly doc. A friend sees Dr T in NJ and loves him.

 

With history of Miositis- perhaps, immunologist would be helpful for both issues? Feel your pain- happy hunting for GOOD DOCTOR...sorry, I could not be more helpful.

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here is someone at Brown university, about 45 minutes from Boston, that wrote a paper with Swedo in 2004. There is a researcher at Brown, not the one on this paper, that did a bunch of work early on, and I've heard Swedo cite her (recently at the texas symposium a couple weeka go) and in papers too. Maybe an email to the person below (email is on the abstract at the bottom, if she still uses that address). Good luck.

 

 

Henrietta L. Leonard a1 c1 and Susan E. Swedo a2

a1 Department of Psychiatry, Brown University, Providence, RI 02903 USA

a2 Pediatric and Developmental Neuropsychiatry Branch, NIMH, Bethesda, MD USA

 

Abstract

The evidence to date, both published and unpublished, which addresses the validity of the proposed unique subgroup of children with early and abrupt onset of obsessive–compulsive disorder (OCD) and/or tic disorders subsequent to streptococcal infections was reviewed. The aetiology of OCD and tic disorders is unknown, although it appears that both disorders may arise from a variety of genetic and environmental factors. Post-streptococcal autoimmunity has been postulated as one possible mechanism for some. The acronym PANDAS (for paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) has been given to a subgroup of paediatric patients who meet five inclusionary criteria: presence of OCD and/or tic disorder, pre-pubertal symptom onset, sudden onset or episodic course of symptoms, temporal association between streptococcal infections and neuropsychiatric symptom exacerbations, and associated neurological abnormalities. The proposed model of pathophysiology provides for several unique treatment strategies, including the use of antibiotic prophylaxis to prevent streptococcal-triggered exacerbations, and the use of immunomodulatory interventions (such as intravenous immunoglobulin or therapeutic plasma exchange) in the treatment severe neuropsychiatric symptoms. For the latter study group, long-term (2–5 yr) follow-up revealed continued symptom improvement for the majority of patients, particularly when antibiotic prophylaxis had been effective in preventing recurrent streptococcal infections. In addition, the episodic nature of the subgroup's illness provides for opportunities to study brain structure and function during health and disease, as well as allowing for investigations of the aetiologic role of anti-neuronal antibodies and neuroimmune dysfunction in both OCD and tic disorders. Although much research remains to be done, an increasing body of evidence provides support for the postulate that OCD and tic disorders may arise from post-streptococcal autoimmunity. The unique clinical characteristics of the PANDAS subgroup, the presence of volumetric changes in the basal ganglia, and the dramatic response to immunomodulatory treatments, suggest that symptoms arise from a combination of local, regional and systemic dysfunction. Ongoing research is directed at understanding the nature of the abnormal immune response, as well as identifying at-risk children, in order to provide for novel strategies of prevention and treatment.

(Received September 11 2000)

(Reviewed December 13 2000)

(Revised February 25 2001)

(Accepted February 26 2001)

 

 

Key Words: Obsessive–compulsive disorder; tic disorders; Tourette syndrome; streptococcal infection; basal ganglia disease.

 

Correspondence:

c1 Address for correspondence: Dr H. L. Leonard, Child Psychiatry, Rhode Island Hospital, 593 Eddy St., Providence, RI 02903, USA. Tel.: 401-444-3762 Fax: 401-444-8879 E-mail: Henrietta_Leonard@Brown.edu

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Dr. Louise S. Kiessling, MD - that is the name I couldn't think of earlier. I just read a Q and A in some local on-line paper for some town in RI with her - and I'm not too sure if she treats with antibiotics or IVIG, but she's been around pandas along time. I think her original paper was 1989. You could post to see if anybody on the baord has experience with her.

 

Neurodevelopmental Center

555 Prospect Street

Pawtucket, RI 02860

Phone: (401) 729-6200

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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

 

 

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

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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

 

 

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

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We were working with Dr. Torres (neurologist) at Children's in Boston who originally diagnosed my daughter with PANDAS in 2008. He is anti, antibiotic so we basically got the diagnosis but not help for treatment other then a referral to a psychiatrist. When he left the hospital we transfered to Dr. Wolff (neurologist) in the Waltham office of Children's and he is very supportive of her PANDAS diagnosis and started her on antibiotics and is building a case for IVIG if needed in the future. We are very happy with him!

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It seems as if you want/need to move fast. As you know, it can take up to 2 months to get in w/ a PANDAS specialist. Afain, I highly recommend Dr. Bouboulis because he is thorough, digs deep with additional testing, and he treats aggressively with reason. He immediately put our son on a combo of abx that are working for him. I would advise making an appt. right away and if you find someone you like closer, cancel it. That way you at least are not pushing it further down the road and have a speiciats visit plan in place. Kath :)

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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.

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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.

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We were working with Dr. Torres (neurologist) at Children's in Boston who originally diagnosed my daughter with PANDAS in 2008. He is anti, antibiotic so we basically got the diagnosis but not help for treatment other then a referral to a psychiatrist. When he left the hospital we transfered to Dr. Wolff (neurologist) in the Waltham office of Children's and he is very supportive of her PANDAS diagnosis and started her on antibiotics and is building a case for IVIG if needed in the future. We are very happy with him!

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