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JuneFlower

Going To Fly To Wi Finally!!

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We finally have an appointment for a specialist in WI. I am so relieved. I had to book a flight and hotel and car. I hope it is all worth it. At least if we go, I can say I tried everything.

My daughter remains to ill to go to school. Migraines, stomach pain, nausea, severe insomnia, inability to gain weight and her BMI is way too low. Tomorrow we go to nutritionist to see if she gained enough weight. If not, she wants to hospitalize her. Sigh. I just want to cry.

Also her school is fighting us on the IEP and we had to get a lawyer.

June

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I hope you finally get some answers and the much needed help your daughter needs. How long of a wait do you have for your appointment? Hopefully not too long,

Christy

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Where are you going? I've been to Froedtert. I like them but can't afford the drive. Why would her school be fighting IEP? My son has ADHD and he got it no problem. I think being too sick to attend school is more a reason to get it.

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I'm glad you got this scheduled June. Hope you and your daughter will finally get some answers and can work from there. Keeping my fingers crossed for you.

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Michelle, ADHD is a well known condition. Dysautonomia is not. But b/c she is on cardiac meds and passes out the lawyer said she qualifies under a heart condition. So not sure how they think they will get away with this…My school district is notorious for fighting this stuff.

We are going to Childrens Hospital of Wisconsin.

Thanks Corina, BigSkyFam, Christy and Michelle,

June

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Hang in there June! Sounds like you are on the right track. What doctor will you be seeing? If your daughter is too sick to attended school , then your school will have to provide for her educational needs. Your lawyer should be able to help you with this situation. Sending cyber hugs and prayers for you and your daughter.

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June, I just saw Dr. Chelimsky as a new patient on monday. Dx of POTs (mild) and chronic vestibular migraine. He is VERY good, very personable and VERY knowledgeable. For the POTs he has me on a reconditioning program and some supplements to increase my energy levels, and for the migraines....for now just trying to get good, solid sleep through melatonin and benadryl.

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I think I am seeing his wife, not sure. I'm glad it was helpful for you. My daughter has already tried melatonin and benadryl with no success. In fact I thought neither were recommended in POTS. Hmmm

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I have a very mild form of POTs (my Hr goes up about 20 bpm after 5 minutes) and it is most likely caused by the tapering of the anti-depressant I am on (which started this whole business), but that said Dr. Chelimsky wanted me to get good, deep sleep for both the POTS, but especially, the vestibular migraines. So yes for some POTSies it may not be good, I don't know.

I have heard his wife is really good too, so if it is her you are seeing (or both of them), I am sure you will get some help for your daughter!!! xoxox

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thanks, I hope so. I'm glad your case is mild. My daughter seems to have a severe complicated form. The cardiologist is really at a loss and that is why I am seeing chelimsky. Her cardiologist would rather us go to Mayo but it didn't appeal to me . I hope I am making the right decision.

June

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