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12 Year old daughter suffering with Chronic Neck pain

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Old 04-17-2016, 10:22 AM   #51
pogo
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Wow, that is great news! I hope you let people know how things go. Wishing you all the grit you'll need on the insurance front - we work with a case manager who is not allowed to talk directly with the referral approvals people (who are not docs) so it's beyond absurd.
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Old 04-25-2016, 01:44 PM   #52
Dmom3005
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I have never heard of this. The only other thing I can think of is
that you might try a massage therapist.

Donna
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Old 05-05-2016, 01:59 PM   #53
thowell
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Update:

Finally got insurance changed!!! What a nightmare that has been but now we are able to move onto a different pediatrician that is more than willing to work with our geneticist.

We have yet to see much improvement is dd's health but the doc warned us that it would be a long slow process. Alot of people with MCAD get worse before they get better once they start treatment. Dd will also need to have one marrow test to confirm dx. Hoping to then go to Mayo Clinic in Florida where they have MCAD specialist and research team.

Taking 1ml cromolyn sodium oral 3x a day before each meal. 1 50mg hydroxzine each night before bed. Have appointment tomorrow with new pediatrician and Monday with geneticist. May adjust meds. Will update again.
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