NEED HOSPITAL. ARE THERE ANY THAT YOU TRUST?

[trintiybella]

My child is up around the clock. Not sleeping at all. Has anyone ever dealt with a major hospital that was at all helpful or "gets" any of this??? How is Columbia in New York. Please give any suggestions you can. Antibiotics that use to help do not.

[T_Anna]

My gut is that you should try NYU or Maimonidies. Our go to hopistal has always been Columbia Presbyterian, but they seem to be about 25 years behind the in PANDAS.
One pediatric neurologist there told me he has only seen PANDAS in the zoo. Our soon to be former pediatrician said that infection numbers will always go down and it has nothing to do with antibiotics and another pediatrician there had "never heard of PANDAS".
At NYU there is Dr.N of Brain on Fire fame that some here have used.
At Maimomidies (Brooklyn) there is Dr.Schulman who treats many PANDAS patients.
Beth Israel might be Ok, there is a good PANDAS familiar dr there some nights, not sure about the others.

DS also had weeks of being awake, last week he suddenly started falling asleep at 11:30. The past few days have been around 2am which is also a huge improvement.

T.Anna
DS15

[smartyjones]

i'm sorry -- I can't give recommendations on a hospital and only bits of my brain on what I want to say -- hopefully someone will chime in --

I would suggest not saying 'PANDAS' wherever you go. it would likely be most successful if you discuss that you think he could be having a type of encephalitis

.

perhaps it is in the recent radiopandas talk with the author of brain on fire that the docs on this talk discuss they don't even really use 'pandas' with other docs - but say they believe they need an 'encephalitis workup'

 

sorry -- I can't be more coherent -- just wanted to mention it to get it started -- maybe someone else will be more helpful

[tpotter]

I have to agree with smartypants. I do not use the term PANDAS or PANS anymore with most doctors, but rather encehalitis, and immune deficiency. You could ask for workups on that. Even my children's "list" of dx and medications, has "hx of post-infectious encephalitis" and "immune deficiency". You will probably get much further.

[beeskneesmommy]

Mass General is the only one that I have heard is PANDAS/PANS friendly. Even then, if you do not get Gellar and/or people who have work with him re: PANDAS, it may be the luck of the draw. His info link is below. It also helps to have a clinical dx from one of the primary PANDAS docs and be able to say "He is currently being treated for PANDAS/PANS by -----".

 

http://www.massgeneral.org/psychiatry/doctors/doctor.aspx?id=18068

[trintiybella]

what would "encephalitis work up" look like? i would think with all the blood work and doctors we have been to, we have done this already?

[trintiybella]

thanks for your help. I am really scared right now.

[PowPow]

I would encourage you to think "what can the hospital do for my child?"

you may end up at a helpful place, but in our experience, the hospitals generally will send you down a psych route and that, at this point in accepted medicinal practice, is not that helpful.

Do you have a pans doc that can help you in this emergency? Not sleeping is terrible. I believe risperdal helped my daughter when she would not sleep for days (literally).

Is the not sleeping the reason for hospitalization?

Edited June 27, 2013 by PowPow

[trintiybella]

The reason for hospitalization is that she NEVER sleeps. Seroquel, risperril, melatonin, trazadone etc....all make her violent. Antibiotics for bartonella put her to sleep in the past, but when we went back on them, they don't work anymore. We went off them to treat clostridia and to see where she is at. I just don't know what to do. She has never slept, even as a baby and it's getting worse. Our doctor just suggested NIH or Dr. Klinghart.

[Hopeny]

You may want to reach out to Brian Fallon who is a psychiatrist who specializes in Lyme at Columbia. I would not use Columbia hospital where the former anti lyme head of the IDSA works, but Fallonau have some ideas. Robert bransfield in nj is another option to consider, Lyme psychiatrist

[Hopeny]

Also just a thought that even if you have Lyme there can also be other things at work. Maybe she has another type of sleep disorder. Have you ever done a sleep study?

[Dedee]

I have heard that Duke Childrens is great in treating enchepalitis related to autoimmune disease (aka PANS).

 

Dedee

[JuliaFaith]

Have you looked at 'Chiari Malformation Type II' before? Just read an article on this and it reminded me of you. Hope you find a good hospital!

[mdmom]

I was told that Brian Fallon does not take pediatric cases.

[T_Mom]

The reason for hospitalization is that she NEVER sleeps. Seroquel, risperril, melatonin, trazadone etc....all make her violent. Antibiotics for bartonella put her to sleep in the past, but when we went back on them, they don't work anymore. We went off them to treat clostridia and to see where she is at. I just don't know what to do. She has never slept, even as a baby and it's getting worse. Our doctor just suggested NIH or Dr. Klinghart.

 

I think if you could get your doctor to give you a referral to "get your foot in the door" at NIH that may be ideal.

 

Did your doctor have a suggestion as to a doc at NIH to see?

 

I would also email (or try to call) Dr Paul Grant or Dr Susan Swedo to see if you could be evaluated for the NIH IVIG study, and to get in to see them -- or ask if they could collaborate, help assess your child -- with the doctor your pediatrician suggested to see at NIH.

 

I am sorry it sounds like this is incredibly tough, for all of you-- NIH may be a good place to go to for an overall work up and to try to see the doctors who ARE familiar with PANDAS/PANS--

 

If you can get in to get evaluated - that is what I would do.

 

Also, re: your initial question; :"Are there any hospitals you trust...."

It is not the hospital so much as you need to have a doctor that will admit you, and/or evaluate you --

Edited June 28, 2013 by T.Mom