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About Kyler

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  1. I just wish this would go away!!!

  2. Thank You guys. You are helpful as usual.
  3. New doctor prescribed DDAVP for my son's worsening POTS symptoms and I have some questions before we start it. I read everything on here in the archives but the most recent discussions are from 2012. I understand the whole fluid sodium balance thing. We will be starting with 0.2 mg during the day on Monday. Kyler's symptoms have gotten worse and he had to go completely homebound for school and he has been having excessive urinating as one of his many symptoms. My question is if you eat high sodium foods steadily throughout the day can you still drink small amounts of liquid? My son currently
  4. Kyler (just turned 16) has to get his wisdom teeth out. I am assumong that there is some really awesome article that someone has to help explain POTS to the surgeon and any special considerations for the anesthesia. I was also wondering if we should try and skip general and just shoot for him getting local numbing (that's how I had mine removed cuz I was afraid of dying under general). Please share your experiences and articles with this if you have been thru it.
  5. The article that POTLUCK posted said that it increases vasodilation: "Improved vasodilation has been demonstrated at an oral dose of 500 mg of vitamin C daily" It seems that would go against the goal of vasoconstriction with midodrine for people that have pooling. Based on this article it also seems like it would help in some ways but with Kyler still having purple feet when he takes 60mg of midodrine a day I don't want to risk any extra dilation.
  6. My son has had his potassium and magnesium checked several times with no change and he can't take vitamins but everyone is different.
  7. We started 30 in the am and 30 in the pm and it was too much - sent us to the hospital due to severe chest pain, muscle spasms, and low BP and low HR. It really just dropped his HR too much for him - he also takes a beta blocker with it. We waited a year and when his symptms increased we tried it again at 15 and 7.5 and that is a magic number for him despite being 6'3 and 243 lbs. It really helped with his constipation and nausea.
  8. I am a medic and what I learned from my training and a lengthy lesson from my son's POTS doctor about being orthostatic and shock is that the human body has methods of compensating for malfunctions, illnesses, and injuries.He said that POTS pt.s are basically in a state of compensated shock every time they stand up. All parts of the nervous system are involved and it really explains the mechanisms involved in POTS (considering it an illness) . Here is an example. If you get hurt and you are bleeding heavily your body senses it and jumps into action. The main things that need blood flow in this
  9. My son is 15 and has been taking it (0.1 mg) for 2 years. He has grown 2 inches since then. He is 6'3 and weghs in at 243 lbs. It doesn't appear to have stunted his growth. I was told by a doctor that if something does stunt your growth it doesn't matter because eventually your body will acheive it's genetically pre determined height even if it just takes a bit longer due to something like not having food or some other reason. My son had no side affects. I was worried when I read the brochure from the pharmacy about the medication because it sounded scary but it has been very helpful in making
  10. I didn't try him because it says he sees adults. Does he see adolescents? Have you had a good experience with him?
  11. Your best bet is to only exercise in a sitting or laying position until you can tolerate standing. My son uses a recumbent bike/ rower combo - it's great. We also saved up some money and bought him a real recumbent trike for use outside in cool weather. The design is suck that he is almost laying on his back when he rides it. He just has to rest and let his heart rate go down BEFORE he stands up and gets off of it.
  12. My son takes 10 mg of Midodrine every 2 hours which usually equals 60 - 70 mg/day. He definitely has a better appetite when he takes it. I assume that it's because he has more blood flow to his gut when he remembers to take it so it decreases his nausea significantly. He has to take it so often becasue the doc says that his young metabolism is super fast and kicks it out. He is 6'3 and weighs 243 lbs. When the pharmacy messed up his beta blocker he was miserable and his HR wouldn't go below 160 each day and he lost his appetite even with Midodrine and he lost 20 lbs in 1 month til we figured i
  13. Hi, I haven't been on her in a really long time but hopefully you remember me - You really helped me thru the first few years of My son Kyler's diagnosis. I now have a friend with a daughter that pobably has POTS They live in central PA. I recall something abut you and your son going to Baltimore for treatment. If my memory is shot please forgive me. I'm trying to find a decent doc for them but I didn't like the ones on the dinet list for Pennsylvania. Please let me know where...

  14. I am so sorry that you and your daughter have to go thru this - the illness itself is bad enough but having to deal with ignorance from the people that are supposed to help you and her thru this just adds insult to injury. It is clear that they are either very uneducated on their responsibilities OR they are playing dumb to try and get out of helping. Depending on how severely this affects your daughters ability to learn, she may qualify for special education. I had my son tested early on because his SOL scores and grades dropped like a ton of bricks in 6th grade and he was diagnosed on the la
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