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kclynn

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Everything posted by kclynn

  1. Thanks Christy and FB. It helps to feel not so alone!
  2. Today I am feeling so sad. My son was so depressed last night having potsy symptoms with all those jerks. WHY does he have to have this crap piled up on him?? Could that Dr. be wrong? He will be 17 this week.
  3. Our school would allow on-line and in school but not in school and part time homebound. They do not pay for the online though so I guess they wouldn't care (although the district does offer some online classes themselves which are free to us). Puppylove is right, do you have a Dr. that will back you up? That could help a lot. Every district will be different in how they go about offering the free and appropriate education, but there are basic legalities and guidelines they need to do.
  4. He doesn't have loud and disruptive vocals, his vocals would be more a soft sound made when actually having the worst of his jerks, so he is fortunate to not have to deal with those symptoms during school, and he actually rarely has them at school, or is mostly able to cover them with a purposeful movement. We thought the Neuro was awesome, and he didn't recommend any other meds.
  5. My son saw a neurologist who thinks he has Tourettes. It was a very long and detailed visit. I have a high confidence in the Neuro, though he does not know a lot about POTS. My son started the Jerks and Tremors at nearly the same time, very suddenly, as he showed Pots Symptoms. The jerks had been very seizure like. The Dr. said he has probably had this mildly (and there are some things that would validate this) for a long time but that the stress of the Dysautonomia brought it out significantly. My son had some tremors in the office during the appt. and the Dr. said those were tics. The
  6. Stick with the pediatric autonomic specialists. There are differences between adults with dysautonomia and teens with dysautonomia. How is the exercise going? This can be very successful but start very slowly and work your way up. It really is good to start with conservative treatment. I think you should schedule an appt if you think you need one. You probably have a lot of questions since your diagnosis. Many people here keep testing because they don't get better but most teens with pots do. I know you feel awful, and it isn't ever easy but recovery is in your future
  7. we also noticed no correlation to HR specifically, but lately his rate has been running 100 - 120's plus and he seems to be running down and more fatigued and susceptible to other symptoms.
  8. My son did this last year, nearly exactly as you described. He would sometimes know things off the table next to him or sometimes we heard a huge crack when his hand would hit the edge of the table. They would just fly around uncontrollably. It was a phase that lasted several months, and will disappear for weeks or months, then reappear, but they have been much more mild. Are you taking Reglan?
  9. Issie, that is what I have done, I have copies of records and send what is pertinent and timelines I have done. I am pretty sure they appreciate this anyway, what busy Dr. wants to wade through hundreds of pages of records. No one has asked for more and I think the specialists really want to come to their own conclusions anyway.
  10. I think next to impossible to change records. You may be able to include your own letter to add to her medical file. Possibly most people here have had the experience you speak of so the Dysautonomia specialists generally have seen that a lot and it shouldn't phase them. I have been told my son's medical records will be sealed when he is 18. He has "that" in his also, by a neurologist who even knew about his dysautonomia/POTS diagnosis from Mayo no less.
  11. Petunias Mom, We were saying exactly the same back around spring break, that everything was like last year when he was first diagnosed. He couldn't get out of the recliner. He did get back to school after a couple of weeks and has been there everyday. He did try full time but ended up with part-time after a month. As much as he hates it, it is what has allowed him to be able to function. When he was having a horrible time during Nov and Dec and got behind, He was able to catch up. If he had been full time I know he would have failed everything. He is actually doing quite well with his g
  12. Christy, I SO hope that you get your answers this time.
  13. The FDA has issues with people not "complying with its orders" Ooooo better stop this dangerous drug from crossing the border! They are making it harder and harder. I thought I saw a notice they aren't shipping from Canada anymore. As of right now, this pharmacy in Kansas makes it for about the same cost as the one in Mass. so that is good. My problem is getting a prescription for it!
  14. My son's GI says this would be a good med to try for his nausea and GI trouble. But, he won't prescribe. He says its not legal for him to do so. I don't know if that is true or perhaps the children's hospital prohibits it? He did tell me how much to get for him if I could get it from somewhere! I found a pharmacy in Kansas that will compound it and it would be $60 a month so the cost is surprisingly reasonable. So I asked his primary, and she won't prescribe it either. She is in Missouri and when I talked to the Medicine Shoppe in Missouri they told me the Missouri Pharmaceutical board
  15. Issie, O my Gosh! That sounds horrible! Mine is bad enough, 3 breaks and a dislocation. 3 months no weight bearing, I did have surgery. I think he is a good surgeon, know others who he has done surgery on and everyone loves him, including the hospital staff, I have 2 pins (will remove) that are holding the tendon, bunch of screws and hardware, and two plates. Lucky me. One of those things that really sets you on your butt when you think everything is so bad. Now I know, things stink (the fibro/cfs mom taking care of the potsy teen) but really, could be worse. AND it is amazing how ma
  16. My son would say anything and everything, but then can eat anything sometimes. His nausea doesn't appear to be tied to a certain food or food type.
  17. I hadn't heard that about Zofran, something to think about. My son now gets nauseous even smelling or thinking about food. I hate this. I know that may be a result of over a year of getting nauseous when he eats. He has stopped losing weight for now, I think he forces himself to eat. Sometimes he only eats applesauce for lunch and a protein shake for breakfast. But late he will eat a meal (like 9:00) which might actually go down ok, but the nausea will happen, maybe half way through or 30, 60, 90 minutes later. For now Zofran is all we got, if it gives him a temporary relief. He doesn
  18. Christy, I decided to call and ask and they said they do look for Mast Cells during the biopsy. What the nurse said is "If they see them they usually count them out and note them on the report" for what its worth. So no mention of mast cells, does that mean no mast cells? Hmmm...
  19. Christy, I will look into Doxepin. Dr. is now looking into domperidone. I started a new thread, apparently I took the word of the nurse but have since talked to the Dr. I wonder how many patients are sent on their way on the word of nurses when the Dr. might have been willing to try more. Send me an email and let me know how you are doing
  20. I should know better. Yesterday we talked to the nurse and she was just relaying the information from the current test. Now I will say if we had allowed it the Dr. would not neccasarily call us but she did say she would have the Dr. call us and he did! We had a great conversation. He is still concerned about how to help us. He believes he probably sees quite a few patients with dysautonomia that are undiagnosed. I asked him about Domperidone and he thought that could be a great medication for my son, discussed the issues of getting it, is going to talk to his colleague who has used it a
  21. Thanks, Issie, I had 3 breaks, 2 pins, 5 screws, 2 plates Nothings guaranteed, but I will do what they tell me. Already have home health coming for pt. Can you PM with the name of the site and brand of probiotic?
  22. Domperidone and doxepin are on my list to ask about. Dizzy, they did test and biopsy for celiac and h pylori, negative. Issie, I will have to get some new probiotics. We have used them in the past and didn't really notice any help but no they won't hurt. Maybe a different brand will help. Dizzy, while I do feel that for some diet changes can help a lot I can not do that right now, nor get him to an integrative Dr. We tried one last fall, but she just wanted to refer us to another Dr. an hour in the wrong direction. There was more to why I didn't pursue it, though. I don't know of any
  23. He gave my son Erythromycin, then Bethanechol, I also said no to Reglan. They made no difference. Then he had done an EGD scope and Colonoscopy. They did biopsies. Every thing is normal but my son has exactly the same trouble, can't eat and too much BR time, WAY too much, daily. He gets nauseous thinking of eating sometimes, sometimes forces himself to eat, usually nauseous with that, feels full very soon, sometimes he can eat a lot and this is usally late, in the early evening and 2 hours later he has to go with varying results. So now what, they have written him off. The GI Dr. was nic
  24. Could be reaction to the meds you are taking now?
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