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question regarding pandas, uf doctor, UPPA test


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hello everyone -

 

just trying to gather all this info little by little and i am wondering how you find out if your child is pandas? Is it a simple test that a pediatrician could perform?

 

Also, ive seen a few of you mention a doctor (neurologist?) that you see at U of Florida, i believe. Is this doctor a DAN doctor or just a medical doctor and what did you go see them to accomplish?

 

also, the lab corp UPPA test we are having re-done because they exposed the container. We are doing it today and i hope to be able to post the results by friday.

 

thanks!

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Airbucket,

Hi, as far as finding about pandas, forget the pediatrition, some don't even know what that is, you'll have to seek a DAN doctor or Infectious Disease doctor. Try to inquire over the phone first, so you will know if they are educated about it and also what cost the visit would be. The Dan doc we saw did this as part of his bloodwork for my son, but I had also done it previously a few months earlier with an infectious disease doctor that our pediatrition referred us to. (its a blood test that will measure aso and dnase titers to see if they are normal or high). If you see a DAN doctor, they usually deal with the autistic spectrum, and this might be a good move for you considering your child has a few different issues. You will just give your son's history and what you want to accomplish through them is to find possible root causes of what is going on with your son, whatever the issue, and they should be able to take it from there. When we went, I was there because my son had tics and I was hoping to have some tests done that may uncover something. The did a blood panel that is a little more in depth than the common CBC (complete blood panel). They will try a variety of things (usually most non-invasive first) to see what works for your child.

 

Let me mention also that this could be pricey, it is usually not covered, and they may charge upwards of $500.00 for a consultation. However, our DAN is an allergiest as well, and we went in as an allergy patient hoping to see if allergies played a part in my son's tics, (so far that route has not completely worked for us) and so our visits were covered. So look into that first. I also wanted to mention, since you brought up "reflux" on the other thread about celiac, that was one of the things the DAN suggested could be a reason for the vocal tic my son had at that time. He said that some people do not show the usual symptoms of relflux but could have it--so he gave us "Previcid" to try, along with other suggestions, but in the end, I don't think that helped much either. But it could be something for you to look at.

 

I dont know about the Florida doctor, but I think it might be Dr. Murphy? May be a PANDAS researcher, but not sure. Are you in or near a big city. Finding docs is sure easier if so.

 

Faith

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We saw Dr. Murphy who is at University of Florida at Shands Medical Plaza. She is a psychiatrist who studies tic disorders and has worked alot with Susan Sweedo at NIMH on PANDAS research. Most Dr's may have heard of PANDAS but don't really know much. DAN Dr.'s are MD's but focus on Autistic Spectrum Disorders and there are a lot of similarities to the brain basal ganglia attack on autism and PANDAS. An ID Dr. can prescribe long term antibiotics. A neurologist may be able to shed some light on tic disorders for you. Dr. Murphy is the only Dr. that sat down and discussed my sons symptoms and there relationship to PANDAS. She discussed treatment and using OT therapy for motor delays. The DAN Dr. is an investment you can try to get insurance to cover it but be prepared to pay out of pocket. They are biomedical so give supplements to treat symptoms. They pay close attention to the individual person and review extensive blood work to see if there is a connection to symptoms and labs. The labs are usually covered by insurance. I think with PANDAS the use of both Dr's traditional and biomedical would be helpful. Here are some links.

http://www.drdemio.com/

http://mdc.mbi.ufl.edu/murphy.htm

Best wishes.

Michele

 

Airbucket,

Hi, as far as finding about pandas, forget the pediatrition, some don't even know what that is, you'll have to seek a DAN doctor or Infectious Disease doctor. Try to inquire over the phone first, so you will know if they are educated about it and also what cost the visit would be. The Dan doc we saw did this as part of his bloodwork for my son, but I had also done it previously a few months earlier with an infectious disease doctor that our pediatrition referred us to. (its a blood test that will measure aso and dnase titers to see if they are normal or high). If you see a DAN doctor, they usually deal with the autistic spectrum, and this might be a good move for you considering your child has a few different issues. You will just give your son's history and what you want to accomplish through them is to find possible root causes of what is going on with your son, whatever the issue, and they should be able to take it from there. When we went, I was there because my son had tics and I was hoping to have some tests done that may uncover something. The did a blood panel that is a little more in depth than the common CBC (complete blood panel). They will try a variety of things (usually most non-invasive first) to see what works for your child.

 

Let me mention also that this could be pricey, it is usually not covered, and they may charge upwards of $500.00 for a consultation. However, our DAN is an allergiest as well, and we went in as an allergy patient hoping to see if allergies played a part in my son's tics, (so far that route has not completely worked for us) and so our visits were covered. So look into that first. I also wanted to mention, since you brought up "reflux" on the other thread about celiac, that was one of the things the DAN suggested could be a reason for the vocal tic my son had at that time. He said that some people do not show the usual symptoms of relflux but could have it--so he gave us "Previcid" to try, along with other suggestions, but in the end, I don't think that helped much either. But it could be something for you to look at.

 

I dont know about the Florida doctor, but I think it might be Dr. Murphy? May be a PANDAS researcher, but not sure. Are you in or near a big city. Finding docs is sure easier if so.

 

Faith

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thank you so much for your replies, they are so helpful. I am now searching for a DAN doctor in florida, however my concern is that my son may have no root causes because he has had all kinds of symptoms since birth, as an infant he was similar to how he is now even. Does that possibly mean that what my son has is purely genetic and will nt respond to treatments because the root cause is chemical?

 

I am very intersted in Dr Murphy - i think because my son has so many varied issues that it would be good ot see both a psychiatrist and a DAN doctor. Do other people do this kind of thing?

 

I am wondering why i cant just tell the pediatrician to order the blood test for the titers. He usually will do as i ask even if he doesnt understand!

 

alright thank you all so very much!

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Airbucket,

 

By all means, if your pediatrition is that type, well, go for it! I just meant that most don't really have much education on this and may even discourage or dismiss this, and so didn't want you to waste your time. But whatever tests you could get through him would be a great start. Bring him some data so you could explain exactly what you are requesting and go from there. he is probably familiar with your son's health issues, so explain you are further investigating some things and hope he can help.

 

Good Luck,

Faith

 

P.S. regardless of what the root cause is, it is good to have this test at least to rule out, and you never know what or how these issues start, for all you know he could have had strep infections as a baby that you may not even have suspected, so I say do it if you can. As of now, this seems not to be the issue for my son but I am always on top of this topic and am STILL onthe lookout for anything and do bring him in to beg for a strep culture if I suspect one. I feel you never know how much ANYTHING can play into this. :)

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we saw dr murphy at UF as well. we have been for my daughter's evaluation and we go back in two weeks. i will learn more then. they took four vials of blood from my daughter---when i looked at the lab sheet i saw that dr murphy ordered MANY tests/screens with her blood---not sure what they all are but i know some were lead/mercury testing, etc. we saw a neurologist and were very unhappy with the lack of a treatment plan for our daughter and their disregard for supplements/diet--and we saw a top neurologist at a highly regarded children's hospital. I will know more about the blood tests on Nov 2nd when we go back to dr murphy to get results, etc. i can share that with you as well when i know more---ALSO, i asked the neurologist to test her blood and she looked at me and said "what would i be looking for? TS doesn't show up in blood"---they just don't get it, alot of them. and they want to treat the symptom and not get to the cause of it---

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we saw dr murphy at UF as well. we have been for my daughter's evaluation and we go back in two weeks. i will learn more then. they took four vials of blood from my daughter---when i looked at the lab sheet i saw that dr murphy ordered MANY tests/screens with her blood---not sure what they all are but i know some were lead/mercury testing, etc. we saw a neurologist and were very unhappy with the lack of a treatment plan for our daughter and their disregard for supplements/diet--and we saw a top neurologist at a highly regarded children's hospital. I will know more about the blood tests on Nov 2nd when we go back to dr murphy to get results, etc. i can share that with you as well when i know more---ALSO, i asked the neurologist to test her blood and she looked at me and said "what would i be looking for? TS doesn't show up in blood"---they just don't get it, alot of them. and they want to treat the symptom and not get to the cause of it---

 

 

Hi Amy,

regarding your visit to Dr. Murphy--did you just persue this on your own? Did you see her for the tics or to pursue pandas testing? I mean, does she also handle tic disorders, regardless if it is pandas related?how long ago did you have the tests as you mention getting test results in November, wondering why it takes that long. Did she indicate she could help with tic disorders even if not pandas related, and I am assuming from your post that they took blood for other testing as well.

 

Thanks

Faith

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