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Everything posted by kclynn

  1. I can't quite figure out why but what keeps coming into my mind is how when people are totally hypothermic they sometimes undress themselves. I looked into it further and found this article (it is geared toward survivalists but hey). It does explain the phenominon very well. Whether it applies to your son, I don't know. Ooops forgot the link http://www.survivaltopics.com/survival/paradoxical-undressing My son will say he is freezing but his skin is burning and and flushed. Also, you know you can fill tube socks with rice and put them in the microwave and warm them. You could lay them around his body that way and then remove them one at a time. They stay warm a really long time.
  2. My son won't drink it cold but likes V8 warm especially with a griled cheese.
  3. Julie, the bottle says 200 mg per 5 ml when reconstitute, so 100 mg per dose for him. Sounds like a slightly different formulation (it isn't the EryPed) but is the Erythromycin Ethylsuccunate though. Lenna, I can not remember and it bugs me because I am usually better about writing things down that are said.
  4. Diagnosing and treating POTS/Dysautonomia is definately a process. Sounds like you have a pretty good team who is interested in finding the right treatment and finding possible causes. Keep a symptom diary (maybe you already do). It is possible to have POTS and other concurrent dysyautonomia or conditions. You are right, the medication he put you on can take a few weeks to show results.
  5. For the past week my son has noticed his knuckles are red, not painful or swollen. A teacher even asked if he punched someone! He also has a huge painful knot in the muscle on his forearm. Anyone else have this? The red knuckles kind of worry me.
  6. Not sure which border you are at. I got it from CVS, a national chain. That one did actually have to get it from another pharmacy but they said they just didn't stock it (maybe it isn't widely used). If you are near a US pharmacy - perhaps they could order it. First you have to get it to try it to see if it helps. If so, then you can figure out how to get a regular supply. My bottle says Abbot Laboratories, North Chicago, IL, USA, 60064 Good Luck!
  7. Hmmm... Same stuff. Thats what they said - CVS I will double check. I know they didn't have all of what we needed, just one bottle. He takes 2.5 ml 3 times a day. The Dr. said half hour b4 meals but the scrip just says 3 times a day. It is a tough one to do at school so for the next few days I think we will do half hour before eating AM and PM and just get the extra dose in right after school because hubby didn't get an extra bottle for the school (he gets out pretty early and we eat late). How long did it take to notice a difference?
  8. Dr. Ding-You Li in Kansas City I agree, my son has been through enough tests. Eventually he should improve greatly and I think this will also. In the meantime hopefully we can find something to help him feel better. And yes, it is the liquid form. We have to go get new bottles every 10 days. A friends elderly mother was on Reglan and became very, very sick and the Dr. were not catching that it was the Reglan, she did after reading about the side effects and putting it together.
  9. Good visit, not too long but Dr. seemed very good. My son is very tired of long dr. visits so not necessarily a bad thing. He said probably Gastroparesis (no surprise there). Started him on Erythromycin low dose for a couple weeks to see if it helps, if not try another med (I didn't catch the name of it) and if not then probably some tests, scope, etc.. Macks Mom and Thankful, I saw your kids have had some success with this med so I am a bit hopeful. I asked him if he had many patients with Dysautonomia and his anwer was He has a few every year but probably more than they know because they don't generally look for it. I thought it was an interesting and honest answer. He is approaching as being caused by the flu that caused the POTS but not sure that makes any difference as it is all poorly understood anyway. My concern was he recognize my son's Dysautonomia and POTS which he clearly did, discussing with us the various workings of the sympathetic and parasympathetic nervous system in regards to intestinal issues and the autonomic nervous system.
  10. Yes! Yes! You must feel a huge weight lifted. Sometimes you just have to get to the right person who will make a difference but you have to keep looking and standing up for yourself Glad to hear your appt. is soon. Keep us updated!
  11. No suggestions, but thanks for the great link! Handy one to have bookmarked or even keep in the medical file, just in case.
  12. My son take .2 and for awhile the Dr. had him on more, but didn't make a difference and it can affect the adrenals so another Dr. took him back down to .2. Everyone is right, you should check with your Dr. before making changes and what works for one does not work for another. Another thing I noticed it when people say it worked for me or it didn't work for me they don't say how much they took or how long they tried it AND sometimes meds don't work but with another med then they both work better. Always take information from here as points to discuss with your Doctor. This goes for supplements also.
  13. The Drs. at Mayo said my son should get up and read until he is sleepy (not stay in bed) and that he should read something really boring, think dictionary, shakespear, wall street journal, book you have read 5 times.... Do not go to bed until you are tired and get up at the same time in the AM.
  14. We also only had a 10 minute TTT. They did tell us that he should not have meds for 3 days prior which made it so we needed to stay over the weekend (which we were prepared to do). Just be sure to write down ALL your questions, prioritize them, ask about tests and what they hope to accomplish. It could be you have more information as you discuss these things. Make sure you clarify contact protocol.
  15. We saw Dr. Renaud. She is a pediatric neurologist. She was fine. After she looked at our records and saw all the previous neuro workups she immediately sent us for the autonomic testing. We saw her after all our visits when we returned to Mayo for a follow up but our situations was we were there the week before Christmas, so it was hard to get into everything while we were there that week. If you have any down time and you want to try to get appts. moved up while you are there, you can check in at 8 and again after lunch (double check the times with the dept you are trying to get into) and they may be able to work you in. But you will see Dr. Knoebel as the primary coordinator of your daughters care. The pediatric Dept. is really nice and a different feel than the rest of the clinic (not that the rest isn't nice, just different). If they send you for a cardiac exercise test I hope you get Dr. Allison. He was our favorite Dr. there. If you want to PM me I can tell you more.
  16. Everytime Drs. see my son's urine they freak out. It is a dark, dark orange color (and when it dries like on the rim, it is pink). It has been tested, and tested and been this way since he was a toddler. The tests are always perfect. Had a 24 hour test last year but that was for a Pheo which was neg as well. I have just been looking at this possibilty night before last. I have looked at it b4, too. the thing is he has no pain and they talk so much about pain and having attacks and his is like this every day for his whole life and I can't say he has the type of pain they seem to talk about. He has been super sensitive to the sun from time to time (pins and needles and rash when the sun directly hits his skin but even then that isn't often). I hope someone has more info on this one. Thanks for bringing this up
  17. Katybug and All, I agree about the activity level having an impact. My son has been feeling better, other than constant nausea and intestinal symptoms, since Christmas and his activity level is up, even doing a couple overnights with friends, mild crash and good recovery. He has been waking every morning at 8:30 and up by 9. These past few days he is having many more tremors, mild jerks (which have been 95% gone) and chills and fatigue. His mood has been great. Other than the overnights he hasn't been doing anything extra, just average activity. So I agree about the activity - its just that POTS keeps moving the line and for us, anyway, you never know how much is too much! Sigh.... Of course the weather changed pretty drastically this week, so that could be it, too. Petunia's Mom, has your weather changed a lot the past month and also, Christmas is a really stressful time. It could be that tipped the scales to make her feel worse, just as a lot of the kids have a downhill slide in sept/oct when school starts because of all the stress. .1mg is a very low dose. It could be she needs a little more. Has she tried Midodrine or any other meds?
  18. I printed off some things from the Dyna website and gave to my son's Psychiatrist. I think I did the brochure about your student has dysautonomia and you have dysautonomia, that way he had an idea about what the school should be doing and the challenges face by a student with pots at school. You can also order those brochures and they are a little more professional looking on glossy paper. He knew nothing of Dysautonomia, either, but it was obvious he took time to read the information and "got it" My son's first psychiatrist also "got it" and was really nice but she wasn't a good fit at all. His current one is amazing. I think this isn't unsual to have to try a couple out to find one who you feel really comformtable. Maybe send the information ahead of your appt with a brief cover letter to make your first appt more productive.
  19. They called the Dr.? Also on the Dynakids website is a brochure your can copy off in a booklet form called something like Your Student Has Dysautonomia. It even has information in it on people who have dysautonomia may have anxiety, not the other way around. It has ALOT of information in it specifically directed to the school. Also, the have a video called the goofy slipper lecture which has two parts, 1 describes the physical part (whats happening and why do you have all those symptoms) and the 2nd part is again directed at the school and a lot of the things you need. Now, a lot of those things will be for after you actually get back to school but they are not helping you do that right now. These tools will help to validate everything for you. Dyna was especially formed to help kids and parents and families like yours. Call them Trach (Trish) gave you very good information in your other post on how to pursue your rights. I give you a lot of credit, you know how to reach out and are obviously smart and articulate. Honestly, I don't know how they can't take you seriously, and they will if you make them. It's time for you to start calling the shots. Sorry if the school is too busy, you have been more than patient and it is past time for them to help you. Paona also gave you good advise on getting an advocate. I was just reading back over your post. It is possible the Social Worker was asking leading questions? Perhaps she misinterpretted his answers? It is possible he said you should be in school (and that would be best if you can work your way to get there even a little each day) But, that takes work and support from the school as well. There was no way my son could go to school all last year so I do understand where you are right now. Just saying the Dr. could have said something like that which could be taken the wrong way. It is also possible your Dr. doesn't want to get involved with the school which is sad but you have already taken steps to see Dr. Abdallah, so I wouldn't spend too much energy on the current Dr. except to possibly clarify what he told the school people. Also, it is not up to the school people to interpret your diagnosis and what you do or don't have. You already have proof of a medically verified disability and they really have no choice but to accomodate you. If they are ignoring you or refusing you services you certainly should have a legal case against them. Do not give them all your records with the notes on every discussion with the Dr. This is none of their business. All they need is your diagnosis from the Dr. They will want them and they will do things like this to try to avoid giving you services as well. I would question everything the school tells you. It is unfortunate (understatement) that you have to deal with this and try to get well too. I have been thinking about you all day and this makes me very sad I hope you get in to see Dr. Abdallah soon. I know he does get cancellations and you are close so you could get there pretty quickly. Call and check for cancellations. Also, let the office people know that you could be there on short notice. They actually called me to see if we wanted to come sooner. I hope things go well for you.
  20. When do you Dr. Abdallah? He should help you out, my son saw him Also contact Dynakids. Debbie Dominelli should be able to help you and there is actually a ton of information on the website. I believe there is information out there that documents that anxiety is sometimes present as a pysiological result of the pots. It IS medically verifiable. A really good analogy is that CANCER patients also go to therapists to help them cope. They often also have anxiety as the result of their illness. Would they deny homebound based on the fact that they see a therapist. It sounds like you need to get really pushy. I would send them a certified letter stating that your denial of services is prejudicial and that you will take it to court if that is required, but that you would rather not do so. Someone mentioned an advocate. That is an excellent idea. Have you joined the Dynakids. I know their are other kids who have been throught the same crap, unfortunately. BTW, have you contacted your therapist? What is their position on this? That could make a huge difference if they will validate that your anxiety is a result of your illness. Good luck, this makes me truly sad. My son also was homebound all last year, not being able to get off the couch.
  21. Thanks, Jangle. All I know is that it is helping so much. I just hope it lasts. I think our experiences are the same as many. Meds may seem to work for a time, then either you figure out it really wasn't or the body adjusted to it too quickly and it isn't working any more or as well. We are cautiously optimistic
  22. Interesting topic. My son is 16. He goes to school part time but this fall his brainfog became so progressively worse that daily he was having trouble understanding the simplest of directions. He said it was like someone speaking a foriegn language. Plus he couldn't form words or thoughts. In addition he sometimes gets "loopy" or giddy. Thank goodness I have already warned the school that he may act intoxicated because to someone who doesn't know that is how he appears. He has had to endure some bullying as a result and things became desperate. At that point we pursued some medical relief. Beverly Karabin had suggested some medications to discuss with his primary care doc. She prescribed Focalin XR which is similiar to Ritalin. The difference for him has been nothing short of miraculous. He can focus, is clear thinking, is back to being able to progess through his algebra. It lasts about 12 hours and we can tell when it wears off. We really hated to add yet another medication but so far (and it has only been since Christmas) this has been a success. He is on the lowest dose. Jangle, t he cerebral hypoperfusion certainly explains some of his symptoms and when the giddy symptoms occur laying flat on his back, feet up, definately helps in about 20 minutes to an hour, but doesn't help a lot with the more generalized brain fog as it occures during times when he has spent times sitting in a recliner with feet elevated or even laying flat. Would the reduction of neurogenesis be an influence here. His brain fog is severe, yet the Focalin clears it. I don't think the Focalin is acting significantly on his circulation or blood pressure. Elfie, here is a link to a publication by Dr. Grubb you could copy to take to your Dr. where it describes using these type of meds (ritalin, etc...) in patients for pots. The list of meds is on page 4 I believe. You could try it. I think you would know very quickly whether it would help or not. http://circ.ahajournals.org/content/117/21/2814.full.pdf+html
  23. Brenda, So glad you were able to find someone closer and also responsive! You so right about needing someone who will be there. We also have been able to find a wonderful Cardiac Electrophysiologist closer to home, but even he said my son is complicated and doesn't respond so I thought it would be worthwhile to go see the Drs. in Toledo to consult, since an appt became available and I had sent in paperwork ages ago. Hopefully we won't need to return and can have a better team. I am glad we did. My comments were also from my own experience with another very good Dr., good when you are in the office, not very responsive once you have left.
  24. Tz, Thank you for the support. We are a year into this (post diagnosis, major symptoms over the prior year, and minor symptoms for several yrs prior to that). My son is 16. I think he will cope better and do better overall if we can improve the GI troubles. He doesn't complain, he just doesn't eat. Partly he gets reflux and nausea when he eats, and partly I wonder if he is not eating to avoid symptoms, now. PetuniasMom, Sorry to hear she isn't doing as well. Our kids sure are up and down. I noticed my son seems to have symptoms in groups and cycles and now we are recycling :} His myclonic movements are 95% improved (clonidine that he started a month ago, maybe?) I hope it lasts. He still tremors some but that is better as well. His flushing episodes are better as well, and he doesn't come out of the bathroom quite as wiped out either all the time, waking up with flushes and massive sweating not so much either, still happens, just not so much, so I wonder if the Clonidine is helping all of that as well. If we can get this nausea and ibs stuff at least improved, it will make a difference for him. When you first start down this road you hope there will be something that will help everything, but we pretty quickly found out it doesn't work that way. When you can't stand up, walk, total loss of balance, that is what you work on and the GI stuff has had to wait. Hopefully now we can get this figured out.
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