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Trach

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Everything posted by Trach

  1. My daughter also has POTS and severe migraines. The greatest person we have in her life is Dr. Diana Lebron, pediatric headache specialist at Texas Children's Hospital. My older daughter also has migraines and sees Dr. Stephen Linder, pediatric neurologist/headache specialist in Dallas. My younger daughter's migraines were so severe that we could not get her POTS under control until her headaches were manageable. She was hospitalized so many times that I lost count. If possible I would recommend for your daughter to see a headache specialist. There is no reason why your daughter is not given medicine for migraines. My daughters take effexor but have tried every possible drug combination. Right now Cambia and Migranol work the best for getting rid of a migraine, but every person is different. There are studies that show it is important to address migraine pain in teens/ children or their pain receptors can be altered permanently. If the pain is not treated, the brain can perceive the pain as being worse as the person ages. Has your daughter had her homocysteine levels checked? High levels could require folate and B vitamins (which will help her headaches) but genetic testing may be advised to determine the reason for high levels. One more issue to consider is the side effect from the medication your daughter is taking. When I first took midodrine, it was a miracle drug for me. But eventually I was hospitalized for the first time in years with migraines. I finally figured out my migraines were much worse on midodrine so I switched to non generic ProAmatine. I was able to function for 4 months until my migraines came back with a vengeance. Unfortunately, I have now found that almost all of the POTS drugs and all hormones are migraine triggers for me. I know how hard it is to see your child in pain. I hope she is able to get relief soon.
  2. Both my levels and my daughter's levels were considered low when tested a few years ago. When my daughter experiened nausea after taking vitamin D, her nutritionist recommended taking her supplement after the biggest meal of the day. The nutritionist said vitamin D is more likely to be absorbed by our bodies when taken with heavier meals (usually higher protein/fat concentration). This method did seem to minimize her nausea. I have nausea all of the time so I cannot tell the difference!
  3. My daughter was homebound for 2 1/2 years, but we were very lucky to have a receptive school district willing to work with us. Instead of classifying my daughter as 504, the school suggested "other health impaired" classification to better protect her for absences and testing (even though she had been in gifted classes). As my daughter improved, we worked out a process where if she felt good, she would go to school. Her homebound teacher coordinated all homework and tests since my daughter was not on the class rolls. One important issue to get across with the teachers is to omit the "busy work". Your homework needs to be limited to what it takes to understand the subject matter. If my daughter understood her math homework by doing every third problem, then that was adequate for her teacher. The first eighteen months were horrible - half the time she missed homebound. She was in and out of the hospital for migraines. Homebound sessions were conducted in bed. An occipital nerve stimulator implant improved her migraines. She was eventually able to attend school in spurts. In her IEP, she always had a "buddy" walk with her because she passed out by herself in the bathroom. Our school always offered hardcopies of notes because of the brain fog. The principal was going to try to video tape the lessons - but we never got that to work right. My daughter was diagnosed when she was 10 years old. She finally started improving when she was 14. She is now back in school full time and is on the swim team. She still has insomnia, migraines, and pots flares but is back in GT classes. Two years ago I never imagined she would ever be able to attend school. So I want to offer you some hope.
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