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PANDAS Specialist in NY?


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13 replies to this topic

#1 Jessica NY

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Posted 22 April 2008 - 12:56 PM

Hi, I am new here. Can anyone recommend a doctor in the NY area who specializes in treatment of PANDAS? My son is recently diagnosed and although I am going for a second opinion to a highly regarded peds neurologist tomorrow (4/23) he does not specialize in PANDAS (and he is not on my insurance, I am paying out of pocket). Anyone heard of a Dr. Rosario Triffiletti (sp) in New Jersey? Any help is appreciated. Thanks so much!


#2 faith

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Posted 22 April 2008 - 08:56 PM

Hello Jessica,
I think someone has mentioned that name here before. The following thread may help you out.

http://www.latitudes...p;hl=trifiletti


I would also be interested in who diagnosed and what the history of symptoms are in your child.


Faith

#3 Jessica NY

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Posted 23 April 2008 - 08:34 AM

Hello Jessica,
I think someone has mentioned that name here before. The following thread may help you out.

http://www.latitudes...p;hl=trifiletti


I would also be interested in who diagnosed and what the history of symptoms are in your child.


Faith



#4 Jessica NY

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Posted 23 April 2008 - 09:56 AM

My son, 10, was diagnosed with PANDAS on 3/24. We first noticed the facial tic on 3/1, but did not think anything of it. We thought he was just being a precocious 10 year old boy and rolling his eyes. When he started doing it more often, we thought it was an OCD issue, he has had little quirky things that he does since birth but then they go away after several weeks or a few months. Never anything that interfered with his daily living or school.

By 3/23 the tics were so bad he could not fall asleep that night. He also had developed a second facial tic. He would do one or the other and when asked about them said:

“I fee like I have to do it. If I don’t do it, I can’t stop thinking about doing it, until I do it. Then when I do it I feel better until I feel like I have to do it again”.

It took the doctor about 2 minutes to make the diagnosis. We have never even heard of PANDAS. She made an appointment for blood to be taken the next day, 3/26. We also saw our pediatrician on 3/25 for a quick strep test which came back negative and a overnight strep test which also came back negative.

The blood results which came back 3/31 were as follows: DNASE-B AB: 960; Anti-Streptolysis AB (ASO): 200; WBC: 3.6 (low); Hemoglobin 13.5 (low); Hematocrit 38.3 (low); MPV 8.3 (low); Glucose: 119 (high); Alkaline Phosphate: 254 (high). He also tested positive for some gene mutation that I have never heard of call the A1298BC, but negative for the C677T. I have no idea what this means.

On 3/31 she prescribed 10 days of Zithromyacin (he is allergic to penicillin). However, by the time 3/31 had rolled around his tics were barely noticeable already anyway, and he has also started with a vocal tic that sounded like the sound a guinea pig makes. So I do not know if the antibiotics helped with the tics, since they were mostly gone already, but he did seem to be a little more sunny in his disposition (he had been very clingy and moody for several weeks, which is actually nothing new, it was just worse than usual.)

My son has had language based learning issues from birth. Though he has several characteristics of Autism/Asperger’s/PDD, we are told that “he does not fit neatly into one box”. He currently receives speech and language services through the district and is classified as “learning disabled, other” and receives special education services. We had to fight tooth and nail for him to be classified, they wanted us to give him meds instead. He does have ADD, but we went down the meds road when he was 5-1/2 and it was not pleasant. He is not disruptive to anyone (he zones out), so currently he takes nothing for the ADD.

I should also tell you that he has had Scarlet Fever 4 times.

He had an MRI with and without contrast on 4/18 which came back normal.

Tonight we are going for a second opinion with another doctor, who is not on our plan, but he is supposed to be one of the finest pediatric neurologists in the country. I am hopeful he will be more knowledgeable than the doctor on our plan and offer up better information and treatment options. (She mentioned Immunoglobulin Therapy or Steroid injections?????)

I would be happy to give you the doctors’ names if you e-mail me privately.

Many thanks in advance for any thoughts, advice, support.

#5 Jessica NY

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Posted 23 April 2008 - 10:00 AM

The doctor I am seeing this evening is no Triffiletti, it is one here in Westchester. Just wanted to clariffy that.

#6 faith

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Posted 23 April 2008 - 10:56 AM

Jessica,
Just a little unclear, what is the basis of the PANDAS diagnosis as opposed to tic disorder? Is the 960 number considered high? Was your son ill with strep or sore throat prior to this episode on 3/23 of tics? Are you wanting to see other doctors in order to make certain?

The gene mutation you mention is something we have tested positive for too (my son is not PANDAS) You could look up "MTHFR". however we are positive on the C677T. I am not exactly sure how it plays into the tics, but for us it means that my son does not convert his B12 properly and so gets b12 in the already methylated form to bypass this problem. Has the doctor explained that treatment to you?

Faith

#7 Jessica NY

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Posted 23 April 2008 - 01:02 PM

The basis is the history of Scarlet Fever (strep with high fever and rash); the DNASE of 960 (should be about 170); and the AB(ASO) of 200 which should be 150. I guess these indicate that he has had strep recently (the last I remember is 7/07). I think the fact that the tic appearing kind of coincided with him getting sick with fever and sore throat is what initially led her to PANDAS, then the above blood work confirmed it for her (and again, apparently, recurring Scarlet Fever is strong a sign).

Interesting you bring up the B-12 though, she did check my son and he came out normal range. However, I get b-12 injections every 3 weeks because I have pernicious anemia (missing intrinsic factor in my digestive tract). My body does not absorb it so I have to have shots. What role does b-12 play in tics?

She did not explain to me much about the mutation either or why she ran that test. I am really looking forward to seeing this other doctor this eveing and seeing what he has to say. I am hopeful he will have better and more complete answers for me. I feel like this other doctor does not know what she is going. An then if I am still not satisfied, I am going to see this other doctor in NJ who apparently specializes in it.

Have you heard of treating PANDAS with steroid injections? That is what she offered to me. That or the Immunoglobulin therapy (which I read is only for the most severe cases, which I do not think my son is). These are what sent me running to another doctor....she sees my son for 2 mimuntes, makes the diagnosis and wants to inject him with things...very frustrating

#8 bmom

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Posted 23 April 2008 - 02:58 PM

Of course I am fighting to get a diagnosis and have gone to many doctors that have not heard of PANDAS and if so only want to treat it with blood pressure meds so who knows? :lol:

#9 kim

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Posted 25 April 2008 - 06:38 AM

Jessica,

Did you find enough information on the MTHFR mutation?

Did the new neuro have any helpful idea's for your son?

I hope it went well. It's so sad how these kids have real health issues, and nothing but drugs are offered. It took sooo many children to become sick, before anyone wanted to even guess what was happening. I'm really hopeful that insurance covered Dr.s will get involved in some of this testing and treatment soon. I know the most recent family Dr. that we have, is much more respectful and open to listening and testing than anyone in the past. He's younger than any GP Dr. we've seen before so maybe that has something to do with it.

These are some articles with info on MTHFR

The first one has some good links, the 2nd is pretty technical if you're not familar with all of these words, but does show how all of these things all work in a cycle and gives supplement info. There is also a forum that deals specifically with the genetic mutations that appear to be often involved. If you want the link for that site, just ask.


http://ghr.nlm.nih.gov/gene=mthfr

Methionine Transsulfuration Pathway
http://www.autismweb...n/jilljames.htm

Migrain and MTHFR mutation
http://www.ncbi.nlm....Pubmed_RVDocSum

#10 Guest_alyssa_*

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Posted 17 October 2008 - 05:50 AM

Hi, I am new here. Can anyone recommend a doctor in the NY area who specializes in treatment of PANDAS? My son is recently diagnosed and although I am going for a second opinion to a highly regarded peds neurologist tomorrow (4/23) he does not specialize in PANDAS (and he is not on my insurance, I am paying out of pocket). Anyone heard of a Dr. Rosario Triffiletti (sp) in New Jersey? Any help is appreciated. Thanks so much!





I've heard of him, He's the doctor that got me well. I have PANDAS. I saw him when I was in 4th grade. He ordered me to have IVIG and a pulse corticord steroid treatment. He then persecribed zithromax for me to take propholaxisly to prevent further strep infections.

#11 colleenrn

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Posted 17 October 2008 - 07:32 AM

Alyssa,
I was wondering if you can provide a little more information regarding taking Zithromax prophylactically please. I am desperately trying to convince my doctor to go that route with at least two of my children, possibly three of them. I convinced them to do 5 days of Zithromax and when I saw improvement, I talked them into giving me another 10 days, and I am still slowly seeing improvement. I want to keep them on it longer, but I am going to really need to convince them to do so. How long have you taken Zithromax? Have you always taken the dose of 250mg three times per week or did you start with a different dose? Do you remember why your doctor chose Zithromax? Is your doctor concerned about using it long term? Do you have to ever get blood tests done to check liver function? I know you must be so busy in college, so I really appreciate your time and any answers you may have for me!!
Colleen

#12 michele

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Posted 17 October 2008 - 08:02 AM

Alyssa,
I thought your mom said you went to Dr. Karen Onel and she was the one who got you well. Did Dr. Rosario also work with her? I know she is now in Chicago now. How are you doing now? I am glad you are posting here. It helps to hear from a PANDAS child turned adult! We are all at such a loss at how to treat our kids from this awful illness that causes so many symptoms.

Michele

Hi, I am new here. Can anyone recommend a doctor in the NY area who specializes in treatment of PANDAS? My son is recently diagnosed and although I am going for a second opinion to a highly regarded peds neurologist tomorrow (4/23) he does not specialize in PANDAS (and he is not on my insurance, I am paying out of pocket). Anyone heard of a Dr. Rosario Triffiletti (sp) in New Jersey? Any help is appreciated. Thanks so much!





I've heard of him, He's the doctor that got me well. I have PANDAS. I saw him when I was in 4th grade. He ordered me to have IVIG and a pulse corticord steroid treatment. He then persecribed zithromax for me to take propholaxisly to prevent further strep infections.



#13 eamom

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Posted 17 October 2008 - 11:10 AM

Rosario Trifiletti (a pediatric neurologist) is the author (along with 3 Italians) of a really interesting review paper.
http://jcn.sagepub.c...stract/21/9/727 I have the full text hard copy...I think when dh bought it he forgot (or lost?) to save an electronic copy. ^_^ (If anyone comes accross a free version online let me know!) The paper has a lot of wonderful insights...discusses PANDAS variants (chronic PANDAS, adult onset PANDAS, Body Dysmorphic Disorder). It also has a chart comparing PANDAS and Sydenham Chorea...interesting stuff.

#14 ajcire

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Posted 20 October 2008 - 01:37 PM

I would love to know what dr. in NY or NJ you are seeing as I am in process of trying to determine if this is what my ds is suffering from. I have an appt with a ped. in oradell... my ped referred me there based just on him having another patient use him. My own dr's office said it was beyond them... and actually out of all the dr's in the practice I go to, only 1 believes in it and he is the one who referred me.




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