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Um, there are several folks here who have gone through CHOP and met with Dr Elia.


I have mixed feelings about her. After years of psych meds, she was the one who pointed us in the pandas direction, but offered little help regarding treatment. She is extremely conservative with abx and does PEX, but only for very new, severe,, sudden onset cases.


Many here felt like they wasted valuable time with CHOP and Elia to end up nowhere.

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I would be more inclined to go to Columbia. They have a well known lyme disease doctor who is familiar with pandas and they have experience with auto-immune encephalitis. Do your research first and find out which doctors to ask to see. There is also a doctor in New York City who is suppose to be a great doctor at figuring out medical mysterys. I have his name and hospital somewhere in my email files.


Did your daughter ever had an MRI? I once read an article about a little boy who never slept for three years and it turned out he had a benign tumor in his brain. Got the tumor removed and life was great.

Edited by PhillyPA
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1) We went there 3 times very excited that someone was going to be able to treat him. Kept having us go back (this was early 2009 after DS(then13) had been hospitalized at CHOP for 4 days with what they thought was ARF. He had already been diagnosed with PANDAS, but the attending at the hospital had told us that PANDAS was "voodoo." So, back to Elia. She was doing a small study using PEX to treat PANDAS. Kept having us come back (driving to center city was 90 minutes roundtrip + parking). Kept telling us how dangerous PEX was, but it was obvious my son was extremely ill. NEVER GAVE US A FINAL RESPONSE, even though I repeatedly tried to get one. Wasted a ton of time. Interestingly, her final report was that he probably had PANDAS, and that SSRI's should be used (forget that...doesn't she read Dr. Murphy?), and that PEX might work (but again, never told us directly, and never gave us further direction.)


2) I tried infectious disease/immunology, and left their office in tears...the doctor was so put off by my crying, that he had the nurse take me and my DS (remember my DS had JUST BEEN HOSPITALIZED THERE WITH 104 FEVER, SCARLETINA, TICS, AND SUSPECTED ARF) into another room, and close the door behind us!


3) There is one ENT there, though, who will do T&A on kids who have hx of strep, even if their tonsils look fine. PM me if you want his name. But, he doesn't treat further (not really his area if you think about it.)


4) I believe there are several docs at CHOP, who, not having the seemingly official stance that CHOP takes on PANDAS, might actually treat it. Several of us on the forum have come close (I found one the other day, who after describing my DS's symptoms (including new tremors), and wanting his neurological symptoms treated, asked if I had ever heard of PANDAS. I was very excited (just like when we first saw Dr. Elia). Upon examination, he actually mentioned about my DS's chorea, tremors, and the fact that he couldn't heel/toe walk (kept losing his balance.) Seems pretty straight forward that there's neurological problems to be treated...right? Well, someone obviously got to him, because a week later, when I called in he suddenly said he couldn't treat "PANDAS" (also said that he was very hesitant to tell me this, but couldn't tell me why he was so hesitant to tell me.) I pointed out that I had not been the one to bring up the diagnosis...he had, and that I wanted the neuro issues treated (my DS is also on seizure meds.) Got nowhere.


CHOP neurology official policy (per their department, told directly to me:) All PANDAS cases are seen by behavioral health. (but then we're back to Dr. Elia!) Goes full circle.


Wilma, I know you are desperate. I truly wouldn't want you to waste your time, money and effort on doctors who either can't or won't help you like many of us were forced to do before we had this wonderful forum full of information on who WOULD help (my kids have been sick a very long time, and it was only about years ago, that I was able to start getting information to help me find help. And, truly, CHOP's policy is that they won't help on this one. For the record, I have been told by one of the PANDAS specialists mentioned on this forum that Dr. Elia's hands are tied. I believe it.

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Wow - I just read all of these posts. We have been seeing Dr. Elia for 8 months. My son has been on Augmentin (I had our pediatrician put him on a therapeutic dose, even before getting to CHOP). Dr. Elia kept him on that dose. His severe symptoms decreased after his acute episode last Sept., (the one that prompted me to take him to CHOP), but he never fully recovered. When we saw Dr. Elia in Jan., his titers were up a little higher instead of decreasing as expected. She switched him to Cefdinir and it was like a miracle....for a couple of months. However, over that past 2 of months he seems to be having more and more of the wax/wane symptoms, rather than the "miracle" steady health that he had in Feb./March. I assumed that the next step would be IVig, as he is not a good candidate for PEX d/t undersized "exit" vein. I have spoken with Dr. K in Il., who thinks that my son will have another acute episode in the Fall and says that this would be the time to do IVig, as he will be turning 5 then.


Last Fall, when my son was really sick, he also had pneumonia. His ped. gave him a 5 day run of Azith in addition to the Augmentin he was on. Not only did it clear the pneumonia, but it significantly made a dent in the PANDAS symptoms for a while. I asked Dr. Elia if she would consider a prophylactic dose of Azith and she did not want to. She is very concerned about liver problems as well as building up resistance, but I keep hearing of many kids on Azith - are their docs not as concerned? I also noticed that when I gave my son Ibuprofen, his symptoms decreased. Dr. Elia told me I had to stop, due to the possibility of liver damage as well.


I definitely see that Dr. Elia is conservative and I have mixed feelings about it. We have been let down by the medical community over and over throughout this nightmare (my son was initially DX at age 2.5, but I went from ped to ped and even to a neuropsych at Duke who was grossly negligent in his flagrant lack of medical care with my son).


I have been feeling like we have exhausted antibiotics at this point as my son, prior to getting his tonsils removed, did not eradicate Strep Throat with Cephelexin, Amox., Pennicillan. PLEASE help me with all of this - IS it OK to give Azith and who will treat my son with excellent medical care so we can beat this thing? We are in the Raleigh area of NC, but my folks are in the suburbs of Philly and we already travel there every 8 weeks to check in at CHOP. Any great docs for PANDAS who are less conservative but not necessarily mavericks between here and there?


I have, from the start, been adamant that my son will be cured of PANDAS. There is absolutely NO alternative other than complete recovery for us. I will do whatever it takes to make it happen.

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I have no problems with long term abx, because I totally believe there is no alternative. PANDAS/PITANDs has to be treated like it's close cousin, Rheumatic Fever, in mine several and PANDAS docs opinions.


Now, comes the tough part. My DS was on azith for several years. Actually, switched back and forth between Augmentin XR and Azith, and then we started treating for Lyme. That threw doxy into the mix, and he immediately got pancreatitis (pulled doxy, put on a liquid diet, very sick, but eventually appeared to get better.)


Threw several other abx into the mix, and I think the whole thing just sort of blew up on us.


He now has elevated liver enzymes. they have been steadly going UP the past 4 months to the point that our Peds neuro said we needed gastro consult.


He said to get off Azith. Yes, Azith can be rough on the liver, as can most other abx.


We immediately took him off azith, leaving him on no abx, and he immediately came down with a terrrible case of strep (my belief is that it was never gone...just mostly being controlled, but that's another post altogether.)


He is now on another abx for the strep (no option...have to treat the strep.) But keeping a very close eye on the liver and other organs.


That being said...I don't think that the azith alone would have taxed his liver so much if we hadn't added in all the other abx at one time. There's no question we need to treat the whole problem, but I would recommend being more careful.


My opinion? Take whatever abx is working, in as small a dose as will keep him/her from getting sick, but check liver enzymes on a regular basis. Unfortunately, abx are a necessary evil in this case (we just had a major battle with her pediatrician over the same thing, because of the fact that his liver enzymes did go up.

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Having had excellent treatment from Dr L in Maryland, I would strongly suggest that if you are close enough to do so, to consult with Dr L. She is able to treat with abx, IVIG, and pex IF further treatments become necessary in your child's future (ie, your child subsequently NEEDS an immune-modulating treatment, IVIG or pex to become "normal" again.)


As long as abx work then someone providing these will be fine, but IF you get into trouble you may only have those treatments which that doc. will provide.

Edited by T.Mom
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He now has elevated liver enzymes. they have been steadly going UP the past 4 months to the point that our Peds neuro said we needed gastro consult.


has any of your docs recommended using SAMe to help with the liver problems?


I ask b/c SAMe is widely used in veterinary medicine for liver problems (not really used for mood or joint problems like in people)...in fact if dog or cat has increased liver enzymes that might be one of the first things many vets recommend. And it's not even considered a "wacky" or alternative treatment, it's use is very mainstream.


Here's an article in people: http://www.ajcn.org/content/76/5/1183S.full


I'm just curious...b/c it seems like (as far as I know) human docs haven't latched onto SAMe for liver dz like vets have.

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  • 8 months later...

Wow - I just read all of these posts. We have been seeing Dr. Elia for 8 months. .


Did CHOP change? There were so many horror stories, and now I hear about you and Oivay having success with CHOP.


I can't help but wonder if Dr. Elia attended the NIMH white paper (summer of 2010) meeting and if the other PANDAS docs in attendance (the ones that actually treat PANDAS with antibiotics/plasmapheresis/IVIG) might have "rubbed off" on her so to speak? Maybe something 'clicked' and she decided it was actually time to start TREATING pandas kids?


Doesn't it seem like CHOP is two completely different hospitals (PANDAS-wise) and that "change" might have happened sometime during/after the summer of 2010?

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We are not patients of, nor have we ever even seen Dr Elia. That is my caveat-- I just wanted to jump on board to add another (though an admitted hearsay) opinion!

However, I have talked to several people who have been there to her for PANDAS tx (people on and off this forum- can you believe there are PANDAS parents NOT on this forum ?? :o )

I think PhillyPa is correct-- new, sudden onset, severe cases ( and I would probably add young in there, also!) are in good hands with her. I think it may a facility position, from what I have heard.

I would hate for you to waste your time there and also to have them tell you discouraging things, Wilma; based on the experiences I have heard about & what I remember about your story.

Your daughter is 14 or so, right? She has lyme or a co-infection, if I remember correctly.


I would call Columbia. I wanted to take my child there a few years ago when we first found she had lyme, but she was too young. Now she is older, but lyme is not the problem. They have a very well-known neuro-psychiatric lyme clinic.

I think Dr L is a good idea, too!

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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.

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