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CHOP & DR. ELIZA


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It has been a very long time since I have posted, but some of the older forum members may remember me. My 2 pandas kids are doing very well post multiple rounds of HD ivig (I'll save details for another post)

 

I did want to comment on Columbia though - the Lyme neuropsych doctor is extremely difficult to get in touch with - we tried several times to get an appointment for a consult a few years ago and not once received a return phone call from the office. My understanding is that the doctor knows both Lyme and pandas but I am not sure to what extent they will treat for pandas. We used the pediatric neurology department at Columbia for over a year and left extremely frustrated after they believed my children had pandas but refused to consider ivig even after a relapse. They also insist on strep tiiters correlating with symptoms (which we had), but is problematic for anyone that does not. As for the research that has come out of Columbia, it didn't seem to affect the way pediatric neurology decided to treat. I would strongly recommend dr. L or dr. B. over Columbia based on our experience.

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I absolutely hate CHOP. They misdiagnosed my son who suffered from a pediatric stroke. Their emergency room doctors were awful. They almost killed my son , and I am not exaggerating in the least. His neurologist Dr.Sabrina Smith said they do not recognize Pandas as an illness. Do not waste your time at this hospital. I wouldn't bring my dogs there for treatment.

 

Wow, this is so interesting. The reason I asked, is b/c I heard of another parent (not on this forum), who spoke very highly of the care her son is receiving at CHOP with Dr. Elia. He had PEX, and may have IVIG. (Don't actually know if they were able to get long term abs though.)

 

It seems like Beesknees has a mixed opinion (maybe Elia is too conservative), but Oivay also had positive comments (didn't know how much of that was the SC diagnosis however, if things would have been different with a straight PANDAS diagnosis).

 

This is all so puzzling, but at least it seems that Elia is now seeing PANDAS kids on some level.

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I understand my story with Chop is a long one. If you find one doctor you like there maybe it is different. I just had the worst experience ever with my son there. And then when he broke out in "pandas" symptoms his neuro doctor was so matter a fact about telling me "Your son had TS" period end of story and here area the meds he would take but your son can't take them since he has a prior medical history so basically "oh well" I fought for 3 years and have been on the other tic board thinking it was allergies or this or that nay to come back to the realization that its pandas after 3 long years. I actually just blogged about this a bit at abbelang.com

 

 

 

abbe

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It was strange to see my post in this thread from last May. DS5 still sees Dr. Elia in addition to Dr. Bouboulis. DS is recovering fully and most days is at 100%. He has been in pretty good shape since about mid August after he started a new abx protocol at the end of July. Dr. Elia is a compassionate, kind doc. However, it is my suspicion that her hands are tied in many areas re: treatment of PANDAS d/t CHOP politics. She tends to treat the most acute cases. She is conservative, however, she treats with both PEX and IVig now. She is willing to provide ongoing abx, but not ongoing Azithromycin. I added Dr. B to our team because I felt that DS needed more aggressive treatment with abx. DS got this and I was correct. DS has made exceptional progress over the last 6 months due in part to the mega abx and, I suspect, the passage of time since he had a T&A. Dr. Elia has no problem with the fact that he is seeing another doc in addition to her. I feel that Dr. Elia has a great deal to offer, including a place to receive PEX or IVig safely, should DS ever need it in the future. I appreciate her understanding of PANDAS and will continue to keep her on our team. If you live in the Philly area, I would recommend starting with Dr. Elia at CHOP, to get the ball rolling with dx and get some abx on board. I made a point of creating a paper trail that would work in our favor and I am glad that I did! I would also recommend creating a team of docs for treatment.

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A few days ago I read a post by Dr Jory Goodman, pandas savvy psych on West Coast, that said

 

 

I'm sorry but I do not know of any physicians with extensive experience with

PANDAS in your area. The Boston-Baltimore corridor is particularly difficult

because both Hopkins and Harvard spent years trying to deny the existence of

this phenomenon before they tried to claim the discovery of it.

 

 

Amen, Jory! Love the MDs who just say it like it is.

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Did see Elia when my daughter was having some OCD behaviors which Ithought we should have a psych weigh in on & my daughter would have been uncomfortable talking too dr b about. She was supportive of dr B's recommendations, but did not like the LT Zithromax , due to a lot of hospital infections being treated with such. We continued with Bactrim only that my daughter was already on in combo with zith & it's working well. We liked her & my daughter felt comfortable through the 2 hour appt. I should say that she is the 3rd dr we have seen re pandas---dr L, dr. B & finally her. It's nice to hear all the perspectives from each discipline. It's been 3 yrs& we r finally steady in remission again.

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