Dr. Elia

[Ebersolk]

Can someone advise what type of treatment Dr. Elia provides and if DuPont has now become PANDAS friendly?

[beeskneesmommy]

Dr. Elia is definitely PANDAS friendly and I believe that she heads up the BX psych over there. She has been on this journey with us for several years. She is an expert in using Plasmapheresis for PANDAS, and has used IVig as well. That being said, she is very conservative and does not use these treatments liberally. She is known for treating some of the most difficult cases. She is a part of our treatment team which also includes Latimer and Bouboulis. I value her opinion greatly and she is always part of my "checks and balances" when I make a big treatment decision. If you are looking for an initial diagnosis or if you are further along and looking for Plasmapheresis, she would be your go-to gal. I fully trust her. However, although she is a great place to start, if you are looking for bigger gun abx like Azithromycin on a continuous basis, or multiple IVig's, then you may want to see someone else as well. In a perfect world, I would start with her and add on others if necessary as we did. We started with her in crisis and she helped with long term Cefdinir and Augmentin. I felt that we needed to get more aggressive and we went on to see Bouboulis, who did necessary testing and was instrumental in moving our son forward with an aggressive approach of Azith/Augmentin combo. How effective Dr. Elia's treament approach is, depends upon where you are in the PANDAS journey, how old and frankly, how ill your kiddo is. In addition, I have had some negative feedback from a couple of people who recently saw her. I remain loyal to her due to her willingness to intervene and help and when my son was in the midst of his first acute episode and we were a family in crisis.

Edited May 15, 2013 by Beeskneesmommy

[tpotter]

How old is your child? If between 4 - 12, and newly ill, have you checked the NIMH study? They pay everything, including dx, and all tests and travel, etc, etc. if you qualify. http://clinicaltrials.gov/ct2/show/NCT01281969

[Ebersolk]

We have actually seen Dr. T (first)), then Dr. L and now see Dr. B along w/Dr. Jones due to Lyme and co-infections. I had called Dr. Elia when my daughter's symptoms first started over 3 years ago and they never called back. I had thought that Dupont was not Pandas friendly and was just wondering in case I have an issue. Also, it would be nice to have someone close by to add in to our treatment. Do you think it is worth my adding her in?

 

I also know someone who had an appointment with her upcoming and wanted to make sure that she did not just dx only and not treat.

[beeskneesmommy]

Kerry, that depends upon your child's circumstances. As I mentioned before, if your kiddo is demonstrating severe symptomology and you are looking for plasmapheresis, Dr. Elia is the one to see. If you are looking for someone to supplement the treatment team that you have already put together, I would say that you already have your bases covered. I have a strong relationship with Dr. B and Dr. L as well. They all know that each other are on board. Dr. B does testing, immunology, and most meds. Dr. L provides IVig and although Dr. Elia was the first specialist to confirm the diagnosis, and used to be our med provider, she now is in the role of my checks and balances doc. As I mentioned, she is conservative. I almost always bounce big treatment issues off of her prior to implementing them, as she is my conservative voice. It is hard to give you much more when I do not know what you situation is.

[Christianmom]

Dr. Elia is a psychiatrist, so expect that your child will be fully evaluated psychiatrically by her. If your child is older, she will insist on talking with them alone (no other doctor has insisted on this with my son). I have been to Dr. T, Dr. Schwartz, Dr. Beals, Dr. Horowitz, and various other less-known doctors. None of them asked any of the personal psychiatric questions Dr. Elia asked. She made me very, very uncomfortable.

 

She is a very kind person, but she is nonetheless a psychiatrist first, a PANDAS doctor second. Even though she gave a very kind evaluation of my son psychiatrically, I didn't appreciate being put on the defense. And I didn't appreciate at all the questions she asked my son, nor the records she kept. The questions were very personal. She asked my son to describe in great detail his OCD. He did well with it because he is a pretty open, talkative person. But a lot of children would not have done so well.

 

Additionally, she only believes in classic sudden-onset PANDAS. And sudden-onset is by her definition. In other words, very, very immediate onset of severe OCD. My son's OCD was mild for a couple of years followed by sudden-onset severe OCD. This did not fit her definition of PANDAS. If your child doesn't fit her definition, she will diagnose them with severe OCD as she did with my son. She is the only doctor we have seen thus far that would not even consider my son as having an infection-driven illness, though I showed her bloodwork showing otherwise. She dismissed the bloodwork as showing illness that was simply exasperating his regular OCD, not in anyway causing it in the first place.

 

I was sent to her as a referral from Dr. T for plasmapheresis. Dr. T was taken aback by her lack of even considering plasmapheresis for my son. She was emphatic that my son simply needed Prozac. She went as far as to repeatedly tell me that I was harming my son by continuing to pursue infection-driven triggers for him. She made me feel very guilty.

 

When I got home from my visit with her, I e-mailed Dr. T and did a phone consult. He completely disagreed with her diagnosis and urged me to continue with testing. In the end, that testing showed that my son's infection trigger was lyme. Dr. Elia was completely wrong. I am so thankful to Dr. T for sticking with me through that time and encouraging me the way he did (as well as SF Mom).

 

She is also very, very expensive ($900 for initial consult, I think) and does not take insurance. And though she does have access to plasmapheresis she is not openly offering it except in what she considers very severe cases. She said my son had one of the most severe cases of OCD she had ever seen. When I begged her (literally) to at least try plasmapheresis, she would not, because, as I said, he did fit her definition.

[beeskneesmommy]

Clarification: Nemours (Dupont) DOES take insurance. It depends upon what insurance you have. I have Cigna and recently went to see her. The hospital costs were paid but they did not process Dr. Elia's fee. I processed her fee by easily sending it into Cigna and was reimbursed. That is MY type of insurance. You will have to call them to find out how much your insurance covers.

Edited May 17, 2013 by Beeskneesmommy

[JAG10]

Christian Mom, that is a horrible experience and you paid top coin for the privilege.

 

I have very mixed feelings about Dr. Elia. After many years on psych meds., I took my dd13 who was 9 at the time, to her for a second opinion. I had heard of and read the sound bites about pandas, but my girl had no history of strep. After evaluating her, Elia made a list of recommendations, last on the list (after get her an H1N1 vaccine) was ASO and anti-DNAse B titers. She raised (but minimized) the possibility of a "bug involvement" so much, I waited 3 months to do the blood work. Her titers came back over the lab's ceiling they were so high.

 

In the meantime, we were trying the SSRI "low and slow" approach with one of her fellows and CBT across the street at UPenn....neither of which helped a fig. I was so hopeful and excited to show Elia the lab results....she brushed it off and said she had been sick too long. Part of me says...What the heck did you order the test for then, but the rational part of me is so grateful she did. Once I knew what I was dealing with, I ran people over getting my girl to doctors who would be willing to help her and those doctors saved her life and my family's collective well being-after years of treatment.

 

I have since twice emailed Dr. Elia about my daughter's recovery and how these children with long standing, misdiagnosed pandas can recover, get off all psychmeds and lead the lives God intended them to lead. I thought, perhaps I could encourage Elia to take more risks, after all...I wasn't asking her for anything. She never responded, not even a smiley face. I know she was at the pandas pow-wow in 2010, perhaps invited in hopes to make headway with CHOP. When I mention Dr. Cunningham's research panel/study, she had never heard of it or Dr. Cunningham and said you don't have to "pay" to be part of a research study, so it wasn't legitimate. At that time, she was definitely not completely "in the know." I didn't find her to be a leading "expert" (many, many parents here had her way beat in that regard) but she knew some and the some she did know helped us get on the right track. I'm very conflicted, but probably more peaved than grateful. If we didn't have the resources to plow past CHOP, her lack of action would have been devastating to my daughter's life.

 

I'm resentful of these doctors who portray themselves as "treating pandas" and then end up harming the child with erroneous information that is out of date or self-serving. I truly think it is a sin that they will some day have to answer for.

 

Kerry- You have a pandas friendly team in place. I think you would be barking up the wrong tree with Elia.

[beeskneesmommy]

Kerry - I have to agree that unless you are looking at plasmapheresis as a treatment possibility, you probably won't get more with Dr. Elia than you are already getting with your current treatment team. I am saddened about the negative experiences here. Ours was a positive one. However, we needed more in the way of abx and our son had just turned 4 when we arrived at CHOP to see Dr. Elia. Because he was not making the progress that desired on only Augmentin or Cefdinir, we added more aggressive specialists. Again, Dr. Elia was there for us in crisis and gave us what we needed to get started, but she IS very conservative.

[Christianmom]

Beeskneesmommy -- I should have clarified about the cost. When Dr. Elia was at CHOP, CHOP participated with my insurance, but Dr. Elia (though she worked for CHOP) did not. Therefore, she was covered as out-of-network. Most people have a high out-of-network deductible as I do, so basically we paid the whole bill. I do believe she gave some discount for paying cash and that the actual bill was about $750.

 

In terms of Dr. Elia being a place to go if you feel your child needs plasmapheresis, I wouldn't in any way see Dr. Elia as a sure bet. In my opinion, she is far more likely to deny plasmapheresis than to allow it. She has a reputation to keep and she will only allow plamapheresis if she is pretty sure of success. As I mentioned, I both begged her and had a referral for plasmapheresis from Dr. T, yet she would not even considering trying it with my son.

 

Jag10 -- I am sorry for what your daughter went through. When I was in with my son I was expecting to have a pretty easy ride for plasmapheresis because Dr. T had sent her an e-mail highly recommending it for my son (included a video of my son to show the severity of his OCD). (Dr. T has no access to plasmapheresis. He would have sent me to Dr. L, but at that time she had limited hours, so he felt Dr. Elia would approve it faster). When Dr. Elia not only would not allow the plasmapheresis, but diagnosed my son with severe regular OCD, I mentioned Dr. T's e-mail to her. She opened up her e-mail in front of me, looking for his e-mail. She had pages and pages of unopened e-mails. She found the e-mail from Dr. T which had been sent many days prior. She had not opened it. She said she's too busy to read e-mails. Though she said it kindly, this is quite a statement to make, especially since the e-mail was from a doctor.

 

If I had it to do over, I would have asked Dr. T to personally call her. He told me out of professional courtesy, all doctors read e-mails from other doctors immediately, so a phone call wouldn't be necessary. He also felt the attached video would be "better than 1000 words" as he put it. He was shocked when I later told him she hadn't even read the e-mail. It wouldn't have made any difference though, even if she had. When I mentioned Dr. T, she simply said she and he have a different opinion on my son's diagnosis. That's OK, but she left no window open that perhaps he was right. She was emphatic that there was no way she could possibly be making a mistake. I think one of the biggest problems is that she is a psychiatrist. Dr. T is not. She saw herself as the correct one to make a psychatric diagnosis, not Dr. T who is a neurologist. Where Dr. T will say antibiotics first, psychotrophic drugs as a last resort, Dr. Elia will say psychotrophic drugs first unless there is emphatic evidence to do otherwise. This was very disappointing to me.

 

On the other hand, I do know of one case where she did allow plasmapheresis for a very, very severe child. This child was raging in the hallways at the hospital--a very different presentation of PANS than my son who is calm and personable. Nonetheless, he was very ill and we had to help him walk into her office.

 

I was resentful as well at the time though I know God used it both in my son's life and in ours, but looking back I simply see the problem as ignorance on her part of the true PANS picture. For instance, she doesn't understand the lyme trigger of PANS at all and wouldn't discuss it with me. Most PANS doctors after seeing the bloodwork that I brought to her, would have at least told me to see an LLMD (Dr. T did). So as I said, she is a psychiatrist first and foremost. I wouldn't even describe her as a psychiatrist that believes in PANS because she only believes in it by her definition. And PANS has many, many presentations. But as psychiatrists go, she is probably better than most for a PANS child because most don't believe in PANS at all. CHOP itself isn't PANS friendly. I just think for most on this forum, a psychiatrist is not the way to go for medical help. And medical help is what our children need.

[tpotter]

Kerry, that depends upon your child's circumstances. As I mentioned before, if your kiddo is demonstrating severe symptomology and you are looking for plasmapheresis, Dr. Elia is the one to see. If you are looking for someone to supplement the treatment team that you have already put together, I would say that you already have your bases covered. I have a strong relationship with Dr. B and Dr. L as well. They all know that each other are on board. Dr. B does testing, immunology, and most meds. Dr. L provides IVig and although Dr. Elia was the first specialist to confirm the diagnosis, and used to be our med provider, she now is in the role of my checks and balances doc. As I mentioned, she is conservative. I almost always bounce big treatment issues off of her prior to implementing them, as she is my conservative voice. It is hard to give you much more when I do not know what you situation is.

We saw Dr. Elia when DS's symptoms got their worst...5 years ago. We went in 3 times. DS was extremely severe (I now believe he would have died had we not found a different dr. shortly after that, who got him the IVIG and later PEX that he desperately needed at that time.) Dr. Elia did have us look at the plasmapharesis lab, but they determined that DS would not be able to have it put in his arm, so she was hesitant to do the procedure. She was very worried about the safety of doing a PICC line, but my DS was so sick, that his life was in a very, very bad place. She even interviewed him. She did not even call us back to tell us that she had decided not to accept him for PEX. We were left hanging when there was almost no other PANDAS doctor. Not all of DS's symptoms were consistent with PANDAS (such as the rages he had), although we now know that the symptoms over and above the OCD and tics which she was looking for, were probably due to the mycoplasma pneumonia, bartonella and babesia that he ended up having, in addition to strep, viruses, and who knows what else, but we did not know that then. I don't know if she now understands and accepts PANS symptoms as a whole. I know that some people have been very happy with her, and I know she has been very helpful to those. But, she would not treat my son, would not even respond to our calls or emails after 3 visits that we paid for, and honestly, left us hanging.

Edited May 18, 2013 by tpotter

[Kathy4Him]

I tried to pm you but you cannot receive any new msgs. I was wondering what it was that helped your son?

Thanks!

Beeskneesmommy -- I should have clarified about the cost. When Dr. Elia was at CHOP, CHOP participated with my insurance, but Dr. Elia (though she worked for CHOP) did not. Therefore, she was covered as out-of-network. Most people have a high out-of-network deductible as I do, so basically we paid the whole bill. I do believe she gave some discount for paying cash and that the actual bill was about $750.

In terms of Dr. Elia being a place to go if you feel your child needs plasmapheresis, I wouldn't in any way see Dr. Elia as a sure bet. In my opinion, she is far more likely to deny plasmapheresis than to allow it. She has a reputation to keep and she will only allow plamapheresis if she is pretty sure of success. As I mentioned, I both begged her and had a referral for plasmapheresis from Dr. T, yet she would not even considering trying it with my son.

Jag10 -- I am sorry for what your daughter went through. When I was in with my son I was expecting to have a pretty easy ride for plasmapheresis because Dr. T had sent her an e-mail highly recommending it for my son (included a video of my son to show the severity of his OCD). (Dr. T has no access to plasmapheresis. He would have sent me to Dr. L, but at that time she had limited hours, so he felt Dr. Elia would approve it faster). When Dr. Elia not only would not allow the plasmapheresis, but diagnosed my son with severe regular OCD, I mentioned Dr. T's e-mail to her. She opened up her e-mail in front of me, looking for his e-mail. She had pages and pages of unopened e-mails. She found the e-mail from Dr. T which had been sent many days prior. She had not opened it. She said she's too busy to read e-mails. Though she said it kindly, this is quite a statement to make, especially since the e-mail was from a doctor.

If I had it to do over, I would have asked Dr. T to personally call her. He told me out of professional courtesy, all doctors read e-mails from other doctors immediately, so a phone call wouldn't be necessary. He also felt the attached video would be "better than 1000 words" as he put it. He was shocked when I later told him she hadn't even read the e-mail. It wouldn't have made any difference though, even if she had. When I mentioned Dr. T, she simply said she and he have a different opinion on my son's diagnosis. That's OK, but she left no window open that perhaps he was right. She was emphatic that there was no way she could possibly be making a mistake. I think one of the biggest problems is that she is a psychiatrist. Dr. T is not. She saw herself as the correct one to make a psychatric diagnosis, not Dr. T who is a neurologist. Where Dr. T will say antibiotics first, psychotrophic drugs as a last resort, Dr. Elia will say psychotrophic drugs first unless there is emphatic evidence to do otherwise. This was very disappointing to me.

On the other hand, I do know of one case where she did allow plasmapheresis for a very, very severe child. This child was raging in the hallways at the hospital--a very different presentation of PANS than my son who is calm and personable. Nonetheless, he was very ill and we had to help him walk into her office.

I was resentful as well at the time though I know God used it both in my son's life and in ours, but looking back I simply see the problem as ignorance on her part of the true PANS picture. For instance, she doesn't understand the lyme trigger of PANS at all and wouldn't discuss it with me. Most PANS doctors after seeing the bloodwork that I brought to her, would have at least told me to see an LLMD (Dr. T did). So as I said, she is a psychiatrist first and foremost. I wouldn't even describe her as a psychiatrist that believes in PANS because she only believes in it by her definition. And PANS has many, many presentations. But as psychiatrists go, she is probably better than most for a PANS child because most don't believe in PANS at all. CHOP itself isn't PANS friendly. I just think for most on this forum, a psychiatrist is not the way to go for medical help. And medical help is what our children need.

[Christianmom]

Hi Kathy N,

Don't want to steal this thread, but basically after our experience with Dr. Elia in Nov. of 2011, I continued to work with Dr. T running lots and lots of bloodwork. Eventually things started strongly pointing towards lyme. Dr. T had already tried many antibiotic combos on my son without success (which is why we were pursuing plasmapheresis) and suggested I find an LLMD (though he encouraged me that he would always be there if we still needed him).

 

We chose to pursue Dr. Klinghardt's natural treatment of lyme through Dr. Schwartz in Jenkintown, PA because my son had already been on antibiotics for 15 months and I was concerned about this. My son began seeing Dr. Schwartz in January of 2012 and improved slowly to about 80% by December of 2012 and seemed like he would soon be at 100%. For the most part, he was antibiotic-free during that time, though he was on many, many supplements. In January of 2013, he began to quickly and drastically regress. We were frightened to continue down the natural path and were able to get in with Dr. Horowitz's assistant, Dr. Yunker, so we pursued that path. We began with her in the beginning of March of this year. (We saw Dr. Horowitz himself as well for about 45 min. He was very kind. I asked him what went wrong. He felt that my son's lyme had simply broken through the natural antibiotics). Dr. Yunker treated my son for parasites (for the second time, Dr. Schwartz had done this already) and my son soon came out of the "worst of worst." She is now trying different antibiotic combinations. Currently he is on amoxicillin 4,000 mg. (will up to 6,000) with Probenecid. In a couple of days we will add azithromycin/tindamax (4 days azith/3 days tindamax). He is also on several supplements for inflammation, KPU, and methylation.

 

Since we've been going to Dr. Howowitz, my son's had great days when you'd never know anything was wrong (like yesterday), good days, and bad days. But no terrible days like we had in January.

 

I cleared space in my inbox if you want to pm again. Sorry, I didn't know it was full!

[tpotter]

Hi Kathy N,

Don't want to steal this thread, but basically after our experience with Dr. Elia in Nov. of 2011, I continued to work with Dr. T running lots and lots of bloodwork. Eventually things started strongly pointing towards lyme. Dr. T had already tried many antibiotic combos on my son without success (which is why we were pursuing plasmapheresis) and suggested I find an LLMD (though he encouraged me that he would always be there if we still needed him).

 

We chose to pursue Dr. Klinghardt's natural treatment of lyme through Dr. Schwartz in Jenkintown, PA because my son had already been on antibiotics for 15 months and I was concerned about this. My son began seeing Dr. Schwartz in January of 2012 and improved slowly to about 80% by December of 2012 and seemed like he would soon be at 100%. For the most part, he was antibiotic-free during that time, though he was on many, many supplements. In January of 2013, he began to quickly and drastically regress. We were frightened to continue down the natural path and were able to get in with Dr. Horowitz's assistant, Dr. Yunker, so we pursued that path. We began with her in the beginning of March of this year. (We saw Dr. Horowitz himself as well for about 45 min. He was very kind. I asked him what went wrong. He felt that my son's lyme had simply broken through the natural antibiotics). Dr. Yunker treated my son for parasites (for the second time, Dr. Schwartz had done this already) and my son soon came out of the "worst of worst." She is now trying different antibiotic combinations. Currently he is on amoxicillin 4,000 mg. (will up to 6,000) with Probenecid. In a couple of days we will add azithromycin/tindamax (4 days azith/3 days tindamax). He is also on several supplements for inflammation, KPU, and methylation.

 

Since we've been going to Dr. Howowitz, my son's had great days when you'd never know anything was wrong (like yesterday), good days, and bad days. But no terrible days like we had in January.

 

I cleared space in my inbox if you want to pm again. Sorry, I didn't know it was full!

I will add to this. We also do ART (that's what Dr. S. does that Christianmom mentioned), but we use a different provider...both are good, though.) But, we are also followed by an LLMD, and have been using abx according to the ILADS protocol, and have for the past 2 1/2 years. If you are dealing with Lyme, I truly believe you have to use abx, but need a good protocol, and also use a natural approach, as well to support the immune system, gut, clear the body of other things like parasites, mold, etc, that all play a role in clearing lyme. It's not easy, and certainly not inexpensive. It will take time.