April 2009 Article on PANDAS

[mom2ty]

http://www.childrenshospital.org/views/april09/q_and_a.html

 

Recent article posted by specialist at Children's Hospital....the more I read the more disheartened I become.

 

Mom2Ty

[mom2ty]

Sorry all...specialist hails from Boston not DC. Sorry for the error.

[Lacy]

I almost didn't read it because I'm not sure I can take more negativity towards something that is very real for us all. I wish they'd stop forcing us in the direction of psychiatric assistance.

[colleenrn]

Once again, physicians putting out incorrect and damaging information. I don't understand why a physician can't comprehend that you can get a negative throat culture AND still have strep. It is basic knowledge that strep lives in many other areas of the body. I am in the process of sending that physician an email about this. I get so mad when I read this incorrect info that will cause a parent ot think their child does not have PANDAS when they really do and the family suffers greatly b/c of it. The way I deal with that anger is to send emails directly to the different physicians explaining why they are so very wrong and giving them the correct information. I will post if I get a response from him. I think it takes all of us calling these docotors on their ignorance when it comes to spewing out misinformation. Maybe, a little at a time, we will change their thinking!

Colleen

[dcmom]

IMHO there is a difference between a doctor and a scientist. If you are lucky, your doctor is both. I have found that the typical doctor cannot and does not think outside of the box. They read studies and statistics, but they don't commonly question them, or dig deeper. If your doctor is truly a scientist, then he/she will not take everything at face value. The doctor that thinks he knows everything is the most dangerous.

 

Unfortunately we all learn more and more, that our medical system is completely controlled by the drug companies. They fund the studies and educate the doctors. I assume antibiotics are relatively inexpensive in comparison to these psychiatric drugs. Some doctors are happy to sentence kids to a lifetime of psychiatric drugs and therapy, to me that is as risky (or more) than other possible treatments.

 

I know I am preaching to the choir. I just had to vent. sorry

[colleenrn]

Here is the contact info if anyone wants to email this doctor. I just sent him an email- we will see if he responds.

 

Dr. Robert C. Fulbrigge, MD, PhD

 

Primary Office Location

Children's Hospital Boston

Division of Immunology

300 Longwood Avenue

Fegan 6

Boston, MA 02115

 

 

Colleen

[AmySLP]

Here is the contact info if anyone wants to email this doctor. I just sent him an email- we will see if he responds.

 

Dr. Robert C. Fulbrigge, MD, PhD

 

Primary Office Location

Children's Hospital Boston

Division of Immunology

300 Longwood Avenue

Fegan 6

Boston, MA 02115

 

 

Colleen

 

I read this article, it was e-mailed to me by a friend a few days ago. I thought it was odd, b/c I was given a referral to a neurologist there at Boston Children's (dr. Alcie Torres) who is supposed to have an interest in PANDAS. It struck me as odd that this immunologist wrote the article, with a push toward psych. and no mention of his colleague, Dr. Torres, who is seeing and dx. PANDAS. Although at this time I've canceled my appt (We saw Dr latimer in DC), we were scheduled to see Dr. Torres in July (it was quite a wait, as I scheduled that appt. in January).

 

Maybe it's worthwhile to ask if he's aware that there is a neurologist who's treating this at Children's there. It's such a big hospital, that he may be unaware of this doctor dx and I would hope treating PANDAS. Just a thought.

 

Amy

[michele]

Our biggest frustration has been finding Dr's within the same hospitals who don't know or want to treat PANDAS to refer to another Dr. who could treat PANDAS. They seem to have no connection with other deparments and don't know to recommend to Dr's within the same hospital. I even contacted immunology and rheum at Cleve clinic after a OCD and PANDAS article on their website said to contact them and they told me they would not want to treat it. My biggest success was finding a parent group support group at the hospital and they put me in touch with another mom who's child has PANDAS. In Ohio I know of two Dr's who have treated PANDAS and seem to get it 1) Nevada Reed and 2)Don Gilbert. Nevada Reed does not take insurance and Gilbert spcializes in neuro tics disorders. I guess a DAN! is another route to go with Dr. Demio but again they don't take insurance. I found a rheum Dr. Nelson in Toledo who said she would see my son for PANDAS but that is 3 hours away and there is no guarantee she will do anything either. So much frustration that there are so few Dr's on board with treatment options. The only treatments I am seeing they want to give is medication for symptoms which leads to multiple meds for all the different issues.

 

Here is the contact info if anyone wants to email this doctor. I just sent him an email- we will see if he responds.

 

Dr. Robert C. Fulbrigge, MD, PhD

 

Primary Office Location

Children's Hospital Boston

Division of Immunology

300 Longwood Avenue

Fegan 6

Boston, MA 02115

 

 

Colleen

 

I read this article, it was e-mailed to me by a friend a few days ago. I thought it was odd, b/c I was given a referral to a neurologist there at Boston Children's (dr. Alcie Torres) who is supposed to have an interest in PANDAS. It struck me as odd that this immunologist wrote the article, with a push toward psych. and no mention of his colleague, Dr. Torres, who is seeing and dx. PANDAS. Although at this time I've canceled my appt (We saw Dr latimer in DC), we were scheduled to see Dr. Torres in July (it was quite a wait, as I scheduled that appt. in January).

 

Maybe it's worthwhile to ask if he's aware that there is a neurologist who's treating this at Children's there. It's such a big hospital, that he may be unaware of this doctor dx and I would hope treating PANDAS. Just a thought.

 

Amy

[mom2ty]

The only treatments I am seeing they want to give is medication for symptoms which leads to multiple meds for all the different issues.

 

Really scary isn't it?!!!!! Has anyone posting here heard of a psychiatrist in the Washington Area - Dr. Adam Hedaya? Would love to get some feedback. Ty's infectious disease doctor is referring us to Dr. Hedaya who is supposed to be knowledgeable of PANDAS and LYME and uses very holistic approaches. Anyone familiar?

[mom2ty]

Fired my reply off already colleen....thanks all! Knew I wasn't just in a bad mood when I read the article!!

[cwmom]

I thought the article was not dismissive of PANDAS but rather supportive of the need for further research.

A couple of things-- Dr. Fuhlbrigge is my son's doctor. He placed my son on prophylactic antibiotics for presumed PANDAS last September. Our appointments with him are always 2-3 hours. He is thorough and compassionate. BUT most importantly he knows the literature inside and out and is great at explaining his views on it. He knows it is controversial in the general medical community but he is willing to look at the big picture and give his impression based on the childs symptoms as well as the scientific body of work.

 

My son had the most severe OCD imaginable along with signifigant weight loss ( due to contamination fears) Our psychiatrist was an extremely important team member not only for out son but he helped us deal with those issues.

He was placed on celexa ( took him weeks o even take it due to contamination fears) his symptoms disappeared ( whether due to time, or antibiotics, or tonsillectomy we did not care we just did not want to upset the apple cart in any way, so with the guidance of the psychiatrist we weaned the celexa over a couple of months. He no longer has any psychiatry involvement and we see Dr Fuhlbrigge in june--

My preference will be to keep him on the abx for at least another year ( until he is closer to 13)

 

FYI Dr Torres (Neurologist at Boston Children's does not believe in prophylactic antibiotics)

 

I guess my send home message is you know your child best you will meet may providers with differing opinions ( even within the same institution) I would be open to anyone who wants to help you move forward and deal with all of the horrible aspects of this illness and use everyones expertise to your child's benefit.

[cwmom]

I thought the article was not dismissive of PANDAS but rather supportive of the need for further research.

A couple of things-- Dr. Fuhlbrigge is my son's doctor. He placed my son on prophylactic antibiotics for presumed PANDAS last September. Our appointments with him are always 2-3 hours. He is thorough and compassionate. BUT most importantly he knows the literature inside and out and is great at explaining his views on it. He knows it is controversial in the general medical community but he is willing to look at the big picture and give his impression based on the childs symptoms as well as the scientific body of work.

 

My son had the most severe OCD imaginable along with signifigant weight loss ( due to contamination fears) Our psychiatrist was an extremely important team member not only for out son but he helped us deal with those issues.

He was placed on celexa ( took him weeks o even take it due to contamination fears) his symptoms disappeared ( whether due to time, or antibiotics, or tonsillectomy we did not care we just did not want to upset the apple cart in any way, so with the guidance of the psychiatrist we weaned the celexa over a couple of months. He no longer has any psychiatry involvement and we see Dr Fuhlbrigge in june--

My preference will be to keep him on the abx for at least another year ( until he is closer to 13)

 

FYI Dr Torres (Neurologist at Boston Children's does not believe in prophylactic antibiotics)

 

I guess my send home message is you know your child best you will meet may providers with differing opinions ( even within the same institution) I would be open to anyone who wants to help you move forward and deal with all of the horrible aspects of this illness and use everyones expertise to your child's benefit.

[michele]

A couple questions? What sort of specialty is Dr. Fuhlbrigge? What antibiotic did he prescribe? We are using Omnicef. Also, my son is now taking celexa for the OCD. What amount was your son on? I am now giving him the half pill a day 10 mg, to up to 20 mg this week. Did your son have the emotional issues or anger with the PANDAS symptoms? I guess I call it the quick switch. My son goes to emotional high and lows. He gets angered easily. That is why the neuro put him on the Abilify. Although he still has trouble with self control and gets angered on 15 mg a day. We are also working hand and hand with psychiatry. I am praying for this to get better. I am right there with you about trying all the Dr's and finding the right fit for your needs!

 

I thought the article was not dismissive of PANDAS but rather supportive of the need for further research.

A couple of things-- Dr. Fuhlbrigge is my son's doctor. He placed my son on prophylactic antibiotics for presumed PANDAS last September. Our appointments with him are always 2-3 hours. He is thorough and compassionate. BUT most importantly he knows the literature inside and out and is great at explaining his views on it. He knows it is controversial in the general medical community but he is willing to look at the big elexa for the OCD. What amount was your son on? Did your son have the emotional issues or anger? I guess I call it the quick switch. My son goes to emotional high and lows. He gets angered easily. That is why the neuro put him on the Abilify. Although he still has trouble with self control on 15 mg a day. picture and give his impression based on the childs symptoms as well as the scientific body of work.

 

My son had the most severe OCD imaginable along with signifigant weight loss ( due to contamination fears) Our psychiatrist was an extremely important team member not only for out son but he helped us deal with those issues.

He was placed on celexa ( took him weeks o even take it due to contamination fears) his symptoms disappeared ( whether due to time, or antibiotics, or tonsillectomy we did not care we just did not want to upset the apple cart in any way, so with the guidance of the psychiatrist we weaned the celexa over a couple of months. He no longer has any psychiatry involvement and we see Dr Fuhlbrigge in june--

My preference will be to keep him on the abx for at least another year ( until he is closer to 13)

 

FYI Dr Torres (Neurologist at Boston Children's does not believe in prophylactic antibiotics)

 

I guess my send home message is you know your child best you will meet may providers with differing opinions ( even within the same institution) I would be open to anyone who wants to help you move forward and deal with all of the horrible aspects of this illness and use everyones expertise to your child's benefit.

[cwmom]

Hi Michele,

Dr Fuhlbrigge is a Rheumatologist ( an expert in Autoimmune diseases) Our son was so severely panic stricken about medications ( or any chemical for that matter) that it took about 6 weeks into the illness to even get that started. We didn't get to Dr Fuhlbrigge until after that-- at this point his ASO titters were higher ( rising titer) unfortunately no one ever throat cultured him at onset of illness- ( even though he had a sore throat, headache and vomiting) The psych sx were just so severe that it clouded the diagnosis. He did a course of keflex initially when the titers were high ( we had thought he was penicillin allergic) he isn't .

When we saw Dr Fuhlbrigge he gave us the option of monthly IM penicillin or twice a day amoxicillin 250mg-- our son chose the oral ( no surprise)

He has been symptom free ( except for a week of facial tics this winter) no more OCD at all

At his worst his emotions were all over the place angry crying..... NOT my easygoing funny child

Although we no longer need to see the psychiatrist i keep in touch via email and sent him the link asking him to consider writing this case up with Dr F.

Good luck

[T_Mom]

Hi Michele,

Dr Fuhlbrigge is a Rheumatologist ( an expert in Autoimmune diseases) Our son was so severely panic stricken about medications ( or any chemical for that matter) that it took about 6 weeks into the illness to even get that started. We didn't get to Dr Fuhlbrigge until after that-- at this point his ASO titters were higher ( rising titer) unfortunately no one ever throat cultured him at onset of illness- ( even though he had a sore throat, headache and vomiting) The psych sx were just so severe that it clouded the diagnosis. He did a course of keflex initially when the titers were high ( we had thought he was penicillin allergic) he isn't .

When we saw Dr Fuhlbrigge he gave us the option of monthly IM penicillin or twice a day amoxicillin 250mg-- our son chose the oral ( no surprise)

He has been symptom free ( except for a week of facial tics this winter) no more OCD at all

At his worst his emotions were all over the place angry crying..... NOT my easygoing funny child

Although we no longer need to see the psychiatrist i keep in touch via email and sent him the link asking him to consider writing this case up with Dr F.

Good luck

 

Hi CWMom,

 

I know from previous posts you saw an improvement (dramatic) with antibiotics...and your son continues virtually 100%.

You used Keflex for 10 days (?) and then Amoxicillan 250 twice a day--Is that correct? --

 

Does he continue on the Amoxicillan now? How much? My daughter is 11 also--and doing well on Amoxicillan, but we struggle now with changing anything, and cutting it down.

 

Thanks--