Dr. Elia at CHOP

[Christianmom]

I was wondering if anyone could give me some information about Dr. Elia of Children's Hospital of Philadelphia. Have you gone to her? What did you think? Was she helful?

[EAMom]

I was wondering if anyone could give me some information about Dr. Elia of Children's Hospital of Philadelphia. Have you gone to her? What did you think? Was she helful?

 

Hi...she is mentioned in the helpful docs thread. She has a reputation of being very conservative with treatment (including antibiotics).

 

Overall, CHOP is bad news for PANDAS kids. Dr. Elia seems to be a believer, but b/c she is so conservative with treatment, those on this forum (that I know of) have not found her to be helpful.

[tpotter]

I was wondering if anyone could give me some information about Dr. Elia of Children's Hospital of Philadelphia. Have you gone to her? What did you think? Was she helful?

 

Hi...she is mentioned in the helpful docs thread. She has a reputation of being very conservative with treatment (including antibiotics).

 

Overall, CHOP is bad news for PANDAS kids. Dr. Elia seems to be a believer, but b/c she is so conservative with treatment, those on this forum (that I know of) have not found her to be helpful.

 

 

Yes, we've seen her (I'll PM if you want.) She definitely is a believer, but CHOP is NOT a believer (when my DS was hospitalized for 4 days with SC and what looked like Rheum Fever, the neurologist told me that PANDAS does not exist, and that it is "voodoo.") So, you can see what Dr. Elia is up against. When you mention PANDAS in neurology at CHOP, they tell you it's psychiatric, and call behavioral health.

 

I believe that Dr. Elia is both conservative, and has her hands tied, and some people just won't buck the system. Personally, I believe that if you really believe in something strongly enough, you rock the boat, and be prepared to jump ship (private practice?) But, then again...some people are made for private practice, and others believe they can maybe change the system from within. Maybe, she's one of those, and who knows...maybe she is trying to change it from within.

 

At any rate, she does treat the occasional few, and she does use PEX in those cases (but I believe she may still be using a different protocol than what Dr. L uses.) When she met with us ( 2 years ago), she was talking about putting in a port, and doing it 2 times per week for 2 hours a day for about 3 consecutive weeks. That may have changed, but my son was not accepted for tx anyway (I believe because he had been sick too long.)

 

So, that's what we know. We try not to deal with CHOP anymore. It was too traumatic.

[PhillyPA]

I would highly recommend staying as far away from CHOP as possible.

 

When my son's personality changed overnight at the age of 5 after a rash and a headache (this was in 2007) she told us that it was childhood onset schizophrenia and wanted to put him on schizophrenia drugs. I said no. They did think PANDAS at first but when his titers were low they said it could not be PANDAS.

 

CHOP will only cause you anxiety and stress. They are experts in childhood cancers, not PANDAS.

[JAG10]

DITTO

I don't think they will budge as an institution until there is more published to back up the different treatment options.

Not worth the time or fight.....and it won't do you any good anyway.

 

Save the wear and tear on your soul and find those on board already if that is an option for you.

[EAMom]

Here is a PA doc you might consider (Dr. Boo).

 

http://www.latitudes.org/forums/index.php?showtopic=5023&pid=93899&start=&st=#entry93899

 

I'm sure others could offer more suggestions.

[cfamily]

We started our journey in 07 at CHOP in the ER. We got referred to the behavorial department and worked with a Dr. C who said she didn't think it was Pandas. Fast Forward to November 2010 back at the CHOP ER...The Ped on call said that we were chasing misleading information from people who just wanted to take our money. (Dr. K, Dr. B, etc) I had printed all the internet material I could find. The Resident on call rolled his eyes, wouldn't make eye contact and was impatient as I begged them to test our dd10 for co infections (lyme, myco p, etc). Since then she has been diagnosed positive for lyme since January.

 

Sat there for 7 hours and they did nothing. They did call in social servies to see if we were crazy and had us talk to the psych on call Dr. Lamb. who works with Elia.

 

Long story short, we have seen Elia several times and the final options were to send our dd to a psych hospital Rogers in Wisconsin for extensive exposure therapy or Plasma exch or IVIG. Neither the hospital or the behavorial health department is equipped to effectively deal with PANDAS and all the other co-infections that may come along with it for whatever reason. They don't believe it, understand it.. whatever..we were offended and didn't get help.

 

I would encourage you to save your time and money and see a PANDAS doc, or Alternative MD who is versed in treating multiple infections.

 

Send me a PM if you would like more info.

Edited March 5, 2011 by cfamily