IVIG covered at NYU

[LaurenK]

deleted topic

Edited August 21, 2013 by LaurenK

[trintiybella]

Good to hear. Was that with Dr. N.?

[PowPow]

ho sees children that believes in PANS or autoimmune encephalitis with psych symptoms at NYU?

also, if you end up with psychiatric care there, will they help in the right manner? I mean do they see this as a treatable illness?

so is your diagnosis pandas? was your onset as a child pre-puberty? did they have to fight hard to get paid? do they have to fight after the ivig was done or was this pre authorization?

sorry for all the questions.

Edited August 19, 2013 by PowPow

[LaurenK]

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Edited August 21, 2013 by LaurenK

[LaurenK]

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Edited August 21, 2013 by LaurenK

[T_Anna]

Disclaimer:

This is my personal experience and what was told to me only!

 

We took our son 15 to NY Epilepsy and Neurology on July 24. Dr. N did not believe my son was suffering from PANDAS/PANS. He did not think a high CamKinase on the Cunnigham panel showed anything that couldn't be found on the average 'person on the street'. DS also had an elevated ESR (erythrocyte sedimentation rate) blood result on the blood tests Dr.N ordered, but the NP (I called to follow up on results) called and said all results were normal.

 

Another parent had sent me a PM that her child (young adult) was hospitalized at NYU recently and was sent to psych after it was decided that the girl didn't have Lyme (was positive on other tests,cultures). According to the hospital's tests she didn't have Lyme and they had her pic line removed - her main symptom were severe tics.

 

Since this subject can get heated, I am just posting because my experience was so different.

 

I am NOT saying that you should not consult with them, only that you are aware that his PANDAS criteria may be different from that of other specialists.

 

T.Anna

[LaurenK]

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Edited August 21, 2013 by LaurenK

[PowPow]

So psych symptoms as a kid, tics only as an adult?

I am so interested.

Do you have any autoimmune marker(sed rate, crp, antibodies-ana, etc)?

Thanks, laurenK

[PowPow]

I think t.anna's point is what I was asking ( in a round-about way)

if you end up under the care of Psychiatry at NYU, will you get the iviG and steroids? some of our kids, if they start on a medical unit, may end up on a psych floor, despite our best efforts.

what I was wondering , but I imagine you don't know, does the psychiatry department treat PANS?

that is the scary thing, if they end up under the care of psychiatry , we will lose all chance of immunomodulatory tx.

of course, that could happen anywhere. not just NYU! That is why I advise everyone to avoid ER's it if at all possible and do everything you can outpatient.

[LaurenK]

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Edited August 21, 2013 by LaurenK

[LaurenK]

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Edited August 21, 2013 by LaurenK

[LaurenK]

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Edited August 21, 2013 by LaurenK

[LaurenK]

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Edited August 21, 2013 by LaurenK

[T_Anna]

Yes. I was answering the psych question for PowPow. The patient in question was dx with PANDAS (1st and for many years) and Lyme (with culture when tics became worse).

 

Did I follow up? Yes. The NP returned my call the first time and the second I was only faxed my results. The secretary did leave a message last week with possible appointment dates for their psych. There was no follow up on the MRI or brain spec/scan paperwork, but the dx they sent Oxford said depression so they may not have even put it in : /

 

Truthfully, my son was in bad shape and Dr.S offered immediate treatment, so we shook off the NYU experience and went to Brooklyn. Whether or not the PEX worked, I could not have asked for better care or a more sympathetic staff than Maimonides.

 

When I have finished with thyroid numbers this week (god willing), I will call my GP at NYU and follow up with NYU epilepsy to see where things are. But at the moment I have my hands full....and I still haven't done the laundry : )

 

T.Anna

DS15

Edited August 19, 2013 by T.Anna

[LaurenK]

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Edited August 21, 2013 by LaurenK