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Children's Health For health and neurological concerns in children. |
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11-03-2015, 10:48 AM | #1 | ||
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Junior Member
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Today is not going good......
Dd woke up this morning in alot of pain and with alot of nausea. Yesterday afternoon seemed to be pretty good, she even felt like learning how to make an apple pie. It was short lived. ...... She had another MRI and blood work on Saturday not sure when we will get results back. Her next appointment is with Orthopedics on the 12th. Today is proving to be a bad day for her. Lots of prayers today for she and I. |
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04-16-2016, 05:22 PM | #2 | ||
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Junior Member
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Well we saw the geneticists yesterday and it looks like we finally have a dx.
Dd has been diagnosed with Mast Cell Activation Disorder. He is placing her on a strong antihistamine and a Mast Cell Stabilizer. She is also now required to eat a very clean low histamine diet. There are additional testing that he wants to do in order to solidify the dx and treatment. However, right now we are fighting with insurance to cover anything!! I am so glad to finally know what has been wrong with her all this time. He is not sure if the initial neck injury is specifically related or not and said we may never know that for sure. It will be hard for her to eliminate so many things from her lifestyle but she is determined so I have high hopes!!! |
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04-17-2016, 10:22 AM | #3 | ||
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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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04-25-2016, 01:44 PM | #4 | ||
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Legendary
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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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"Thanks for this!" says: | DejaVu (06-14-2016) |
05-05-2016, 01:59 PM | #5 | ||
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Junior Member
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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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"Thanks for this!" says: | DejaVu (06-14-2016) |
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