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Discussion Starter #1
Many of you know of our struggle to find a diagnosis for our sons.<br><br>
Look at this article. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/shake.gif" style="border:0px solid;" title="shake"><br><br><a href="http://www.tufts.edu/communications/stories/071502ForgottenPatients.htm" target="_blank">http://www.tufts.edu/communications/...enPatients.htm</a><br><br><i>"Doctors in general are very poorly trained in these metabolic disorders," Dr. Mark Korson - a specialist in pediatric metabolic disorders at the Floating Hospital for Children at the Tufts' New England Medical Center - told the Cape Cod Times. "It's not in their minds. It's a fault of our whole system."<br><br>
According to the Tufts expert, the number of physicians that are board-certified to treat metabolic disorders has been on a decline: Only 21 doctors in the country passed in 1999, down from 29 in 1993. As a result, these rare conditions continue to be missed by physicians.<br><br>
"My concern is that no one will diagnose these kids. These disorders are forgotten and the patients are forgotten," Korson - an assistant professor of medicine -- told the Times.</i>
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/irked.gif" style="border:0px solid;" title="irked">: Oy. Doesn't that give you such a warm fuzzy feeling. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hammer.gif" style="border:0px solid;" title="hammer">
 

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Wow only 21 - and that was 8 years ago, I wonder what the numbers are like now. Definitely doesn't give you a warm fuzzy feeling.
 

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I'm not surprised. My neurologist flat out told us we may never have an answer to why Maura has delays because "medical science isn't interested in issues that have progress - they only seem to research ones with regression." Niiiiice. Thanks medical researchers!
 

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<div>Originally Posted by <strong>mamaverdi</strong> <a href="/community/forum/post/7994461"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">peekyboo, that is so sad.</div>
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Well, in a sense, yes. But at least the doctor had the guts to tell us this instead of giving us false hope that if we just run all the right tests, jump through all the right hoops, etc, we would find a diagnosis. I saw a statistic recently that 30-40% of children who are diagnosed with delays will NEVER get a diagnosis. That to me is sad. Especially since many doors are shut to you if you don't have a diagnosis.
 

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"Only 21 doctors in the country passed in 1999"<br><br><br>
OK, anybody have a list of where these guys are?
 

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Discussion Starter #8
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<div>Originally Posted by <strong>peekyboo</strong> <a href="/community/forum/post/7994770"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Well, in a sense, yes. But at least the doctor had the guts to tell us this instead of giving us false hope that if we just run all the right tests, jump through all the right hoops, etc, we would find a diagnosis. I saw a statistic recently that 30-40% of children who are diagnosed with delays will NEVER get a diagnosis. That to me is sad. Especially since many doors are shut to you if you don't have a diagnosis.</div>
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I agree. But it also might mean that these diseases are so far outside of his area that he wouldn't be sure what to run. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/bag.gif" style="border:0px solid;" title="Bag">:<br><br><div style="margin:20px;margin-top:5px;">
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<div>Originally Posted by <strong>cchrissyy</strong> <a href="/community/forum/post/7995015"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">"Only 21 doctors in the country passed in 1999"<br><br><br>
OK, anybody have a list of where these guys are?</div>
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No, but I am going to start researching that tonight. (I do know who the docs are in SF Bay area.)<br><br>
I can tell you who the doctors are in various areas, but some have better reputations than others. And some are downright dangerous in their misinformation.<br><br>
I do know that you don't have to be board certified in metabolic disease to claim you are a metabolic doctor. <shiver with fear>
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/banghead.gif" style="border:0px solid;" title="banghead">
 

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"(I do know who the docs are in SF Bay area.)"<br><br>
PLEASE PM me with their names if you've heard any good about them at all. thanks!
 

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Discussion Starter #11
Yes I have. I will say, that the person I spoke to did not know about the doc's diagnosing ability. But that he does take very good care of her son who was identified through Newborn Screening.<br><br>
Btw, doing an advanced newborn screen is a good place to start: <a href="http://www.pedatrix.com" target="_blank">www.pedatrix.com</a> You need a doctor to order it, but that can be anyone with RX priviledges.
 

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thanks for your help! we're tyring to leave no stone unturned (MRI, EEG, allergist, gastroenterologist, etc).<br>
We're about to do all sorts of special testing next week with a DAN! Dr, and depending on what we learn from that I will absolutely also be interested in checking the metabolic stuff.<br>
Also, we're waiting back on some digestive enzyme stuff from an endoscopic biopsy.<br><br>
while we wait for the biopsy and DAN! results, I'll read up on this metabolic stuff. I saved the last thread on it, know I need to educate myself!
 
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