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Thank goodness I have been re-educated


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Buster did a compare a while back of results- a very nice, organized chart! One of the things that was noticed (from our small sampling)was that kids on SSRIs seemed to have higher D2, although my daughter was not on an SSRI, she was on Lamictal, which I think does have some effect on serotonin. Its not clear if the meds are responsible for

elevation of D2 or if kids w/ high D2 are more likely to be prescribed those meds. But, I'm wondering if your child has had eating issues?

And I didn't think my daughter was in exacerbation at the time of her Cunningham blood draw- but have w/ more aggressive treatment (she was on a pretty wanky prophylactic zith regimen at the time) found that she can be way better than she was at the time-and we had a + strep test not too long after that.

Okaaay.

 

And this was from a blood draw when he was at a very low level. Sent it in then because we were drawing for other reasons and I really wanted to see his results. (And we just saw an infectious disease specialist last week who pretty much blew us off vis a vis PANDAS).

 

He mostly presents with motor and some vocal tics. I wonder if there's a correlation.

 

Do you guys think Dr. L would be interested in these levels? Or Buster? How do we start gathering and comparing all of our data?

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Thanks. This was, I think, our last appointment in our six year relationship. I won't go back. I will just have to drive an hour one way (and then 5 hours one way after we move this month!) to see Dr. Lin as our pediatrician from now on? The most amusing part was, after saying this about the CaM test, I mentioned that the other titer tests will come back in a week or so (anti tubulin, lysoganglioside, D1, D2), and he said, "Send them to me. I will want to see those."

 

Wes see Dr. Lin. Have I told you this before? We drove 19 hrs to see him. One of the great things with Dr. Lin is our insurance reimburses us and even if we didnt get reimbursed, he amazing and we would see him anyway.

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Thanks. This was, I think, our last appointment in our six year relationship. I won't go back. I will just have to drive an hour one way (and then 5 hours one way after we move this month!) to see Dr. Lin as our pediatrician from now on? The most amusing part was, after saying this about the CaM test, I mentioned that the other titer tests will come back in a week or so (anti tubulin, lysoganglioside, D1, D2), and he said, "Send them to me. I will want to see those."

 

Wes see Dr. Lin. Have I told you this before? We drove 19 hrs to see him. One of the great things with Dr. Lin is our insurance reimburses us and even if we didnt get reimbursed, he amazing and we would see him anyway.

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I can understand your pediatrician saying the CamK is meaningless, since it is not an FDA approved diagnostic test. I get that. We need to be cautious in interpretation. We need to understand that this is still in the research stages. Ok. I get that.

 

But.. why are the antineuronal antibody titers better??? It seems that those are even more difficult to put into perspective, and there is no article (that I know of) that Cunningham has written yet about those findings. (maybe there is, but I missed it).

 

I wonder if your doc confused Antinueronal Antibodies with Antineuclear antibodies that are FDA approved to test for autoimmune disorders.??

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My understanding is that since the PANDAS diagnosis is clinical, the CamK is meaningless in and of itself. There are quite a few clues for PANDAS - and if you have enough of those clues, then a doctor will begin to work with a treatment protocol, which will then give more clues. While this is very frustrating for a parent, it is really no different that many many diseases. I'd love to see this disease become more black & white like it namesake, but that seems unlikely. As we explored many illnesses for our daughter, I was surprised by how many were really a clinical diagnosis. Often they could rule something out, but once we got close, had to begin to use the clues rather than a specific blood test. There is a lot of grey in medicine - even in a strep test or a determination of whether an illness is viral or bacterial. Some of the clues that help diagnosis PANDAS - but ALL are not required - are pretty clearly laid out on Dr. K's website at http://www.webpediatrics.com/pandas.html. This is not yet a published study, but may be helpful to show to other doctors or to clarify yourself. I like the updates a lot - he explains the major & minor criteria and diagnoses by defining how many of the major or minor you would need. He does not use the CamK (since not published) but you can add Dr. C's work into the list. Even our PANDAS doc was careful to say that this is a study that helps define PANDAS, but she did not use our results by themselves (we had somewhere around a 133 at the end of exacerbation, with an elevated anti-lyg level).

 

Personally, if the treatment then does not work, or does not work to about 95%, I'd quickly get the child into a therapy program if they have OCD, so that they can learn to control it to some degree themselves, while you continue to look for treatment. (ERP therapy). Otherwise, the terror can be quite overwhelming. Also, if your child does not reach 95% fairly quickly, some additional testing to rule out illnesses such as Lyme (use Igenex testing) or Lupus or a gut disorder would be wise. Trying different antibiotics and at different levels is clearly a complicated thing, but has worked wonders for a lot of kids. But really, a local pediatrician is (most of the time) not qualified or able to manage this.

 

For a long time, we went to doctors that ruled out PANDAS for our daughter due to titers alone. She was classic on other fronts, especially with the sudden onset & classic dramatic exacerbations. We had to find an expert on PANDAS in order to get the treatment that works incredibly well for her so far. It's kind of like expecting your local pediatrician to diagnose and treat Lupus - they should clearly refer you to someone that knows what they are talking about. Then they can support. But the education about PANDAS is still in it's infancy, so they often think it is a simple disease like a simple case of strep. It is not - it is a neurological disease, with an immune or autoimmune component, and as such, is a complex illness.

 

Hope you find someone soon that can help!

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No, no eating issues at all (eats everything and always with a good appetite. We joke that he's been eating like a teenager since he's been a toddler. But he's no at all overweight -- just has a high metabolism, like I do.)

 

No SSRIs, no other meds at all.

 

A more gradual onset of symptoms -- not classic overnight -- but always a high DNASE. Only one positive culture in 5 years. But whole family just showed high ASO and DNASE levels and we all had negative throat cultures. Go figure.

 

But, vis a vis serotonin, he has always been a very deep and very heavy sleeper. Even as an infant. Slept way more than the other babies in his daycare. Think there's a connection?)

 

 

Buster did a compare a while back of results- a very nice, organized chart! One of the things that was noticed (from our small sampling)was that kids on SSRIs seemed to have higher D2, although my daughter was not on an SSRI, she was on Lamictal, which I think does have some effect on serotonin. Its not clear if the meds are responsible for

elevation of D2 or if kids w/ high D2 are more likely to be prescribed those meds. But, I'm wondering if your child has had eating issues?

And I didn't think my daughter was in exacerbation at the time of her Cunningham blood draw- but have w/ more aggressive treatment (she was on a pretty wanky prophylactic zith regimen at the time) found that she can be way better than she was at the time-and we had a + strep test not too long after that.

Okaaay.

 

And this was from a blood draw when he was at a very low level. Sent it in then because we were drawing for other reasons and I really wanted to see his results. (And we just saw an infectious disease specialist last week who pretty much blew us off vis a vis PANDAS).

 

He mostly presents with motor and some vocal tics. I wonder if there's a correlation.

 

Do you guys think Dr. L would be interested in these levels? Or Buster? How do we start gathering and comparing all of our data?

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For a long time, we went to doctors that ruled out PANDAS for our daughter due to titers alone. She was classic on other fronts, especially with the sudden onset & classic dramatic exacerbations. We had to find an expert on PANDAS in order to get the treatment that works incredibly well for her so far. It's kind of like expecting your local pediatrician to diagnose and treat Lupus - they should clearly refer you to someone that knows what they are talking about. Then they can support. But the education about PANDAS is still in it's infancy, so they often think it is a simple disease like a simple case of strep. It is not - it is a neurological disease, with an immune or autoimmune component, and as such, is a complex illness.

 

Hope you find someone soon that can help!

 

I like the way you summed that up.......From you mouth to God's ears....that there are panda/pit docs and we can just get refered to as specialists.....

Until then, i have yet to meet 1 panda doc other than those listed on this board....

everyone i have met has been to good/to smart/to above acknowledging pand/pits

So just like Phasmid...i take my kids to docs who politely dismiss me....

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