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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 takes in about 8000 mg/day of sodium. The doctor said only a few sips of liquid for 8 hrs after taking it. That's not a problem at night but during the day it might not go well. For those who have taken it or are currently taking it how much fluid (estimated ounces per day) do you take in? My other concern is that if this makes his body "normal" while he is on it then what will his other meds do to him while he is on ddavp bc he take a lot of meds.to try and have normal vital signs. I am worried that for instance that with lots of extra fluid in his system that the 60 mgs if midodrine may hurt him by raising his bp too high. I plan monitoring him closely but I am SUPER freaked out by this one. We are only trying because he has basically become house bound at this point. Any experiences or tips would be appreciated. I'm so glad that I have this wonderful resource. Totally love you all!!!
  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 order are #1- your brain, #2-your guts (organs and intestines),#3- your skin (it's an organ too). So when your brain senses that it is running low on blood (from blood loss, severe dehydration, blood pooling in your extremities from POTS, extreme vasodilation etc.) it freaks out and kicks out Epinephrine (adrenaline) to #1 - increase your heartrate in order to get more blood/oxygen to your brain,#2- to constrict your blood vessel (epinephrine is a natural vasopressor). One of the reasons that POTS patients are often pale and have cold sweaty hands or feet is because another thing your brain does in this situation is that it "steals" most of the blood from your skin to use in your brain and guts - this is called shunting from your extremities - unfortunately with POTS this isn't alll that effective because the autonomic nervous system doesn't allow your vessels to constrict enough to fix the problem . So this initial burst of adrenaline is meant to increase your blood pressure which is why it will initially drop when you stand but then can spike as the adrenalin kicks in. For some people the high HR maintains this BP and others can not maintain the BP despite their HR. The problem with super high HR is that your heart doesn't have time to fully refill before it contracts again so your brain may loose needed blood as a result and after a certain point you pass out so your brain gets the blood/oxygen that it needs - it's a catch 22. This is where beta blockers can both help or hurt. Your HR MUST increase to compensate so if you block it too much (or get an ablation) then you pass out but if you under treat it you have other problems and you still pass out. It was tough to find the perfect dose for my son - He takes 2.5 mg of betaxolol (a 1/4 os a pill) in the PM and 5 mg (half) in the AM. The doctor origanally prescribed 5 mg in PM and 10 in the AM but it dropped his HR too much which in turn almost made him pass out. Along with the doc we tweaked it to it's current level - his sitting HR has to stay above 90 and his standing HR has to stay above 120 or he feels faint - without the bb it would go above 200 which is WAY too high. A POTS specialist would understand this whereas a normal doc feels that everyone should have the same HR parameters so some people are debilitated by too much beta blocking. Back to the whole blood flow thing. So this is where some other POTS symptoms come in to play. Your body has to steal blood flow from your stomach and intestines sometimes because your other organs (liver, kidneys) need it more so you end up with nausea and other various GI symptoms because of the disruption no matter how brief. Every part of your body is affected by the decreased blood flow and increased adrenalin issues. There are obviously other affects that a malfunctioning autonomic nervous system has but the whole high HR part is mainly due to the lack of blood flow tothe brain caused by venous pooling. there are articles that explain this all over the net and in many medical books. You can read about compensated and decompensated (when your BP starts to drop) shock as well as POTs and put the 2 together to help understand it. The hardest part is that every human body compensates and respond differently. My son's doctor told me that testosterone plays a huge part in the fact that men can compensate WAY better than women because progesterone is a potent vaso dialator. He said that my son has severe POTS so he can only become upright because he is a boy - he would be bed ridden if he was female - scary!!! My son's vitals look almos exactly like yours when he is under medicated. Pulse pressure usually narrow when there is some external force compressing the ventricle and keeping it from filling - this can occur from a blow to the chest and cause a condition called pericardial tamponade. I asked my son's doc about the same thing bc it freaked me out and he told me that the reason in POTS i because there is not enough blood or time when the blood is pooling and the HR is increased to adequetaly fill the ventrilcle so it mimics tamponade. He showed me on echocardiogram that while my son was lying flat his left ventricle was the size of a golf ball when it filled and then he stood up and it was the size of a grape at it's fullest. I hope that this helps - sorry it's so long. Please PM me if you have any more questions. Serena
  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 my son feel better and we didn't notice anything but improvement. With all of the new meds. that my son started we decided to start with half of what the doctor said (unless it is time release - florinef is not). This has worked well and we found that we had to stay at a lesser dose on some of them but the full dose of Florinef is great for him. good luck. Have you been to a POTS doctor for evaluation??
  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 it out. That's the only weight loss he has ever had. He has permanent goose bumps but doesn't complain of any other side affects.
  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 last week of school that year a age 12. At the beggining of the next school year we started the testing process and the results were shocking. His "verbal comprehension' scores were near genius levels and his "working memory score" was borderline mental retardation level. This qualified him as special eduction under OHI (other health impairment) and we have been set ever since - the hjave to do whatever you ask for to educate her properly if you get this qualification. My son gets picked uo at 11am and goes to school for one block (90 mins.) and lunch for the socialization and they bring him home at 1:30. He does hios other classes with a homebound teacher and the SCHOOL bought him Rosetta stone to do spanish. He is on track for a normal advanced studies diploma. They CAN NOT by law deny you a 504 or an IEP if you have a good doctors note that describes the illness, how it affects her ability to learn, and some of the accomadations that would help her. If they do you can get a lawyer that will help you own the school and then you can name it after your daughter and fire all the idiots that discriminated against her - sorry this just makes me so mad. They are violating the law by not giving you what you need for her and you need to let them know that you know that. We are so lucky that we have had very few problems but I am sad for those who have to struggle to get what they need. You definitely need to start by contacting the Head of the special education department for the entire school system. If you don't get results then go higher and higher even if you end up going all the way up the local government - they will listen eventually. Feel free to PM me - I would love to help any way that I can. Good luck and hang in there. Serena
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