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gnomegarden

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Everything posted by gnomegarden

  1. Let me contribute this then-- the things I have gathered-- Please note that we are brand new to this and I have NO IDEA if these will fly. Maybe they will help you. Let me know if you have any ideas! I have this pamphlet to give them for all of the teachers http://www.dynakids.org/Documents/Educating_the_Dysautonomia_Student.pdf Here are the things we have been able to gather from online resources as being helpful to address in accommodating POTS and EDS Unlimited access to restroom Place to rest/recover during the day if necessary-- nurses office? Library? Unlimited access to drinking water during the day. Extra time on testing Extra time on homework/assignments Modifications of assignments of she misses any extended periods of time due to illness. Additional Excused absences Tardiness forgiveness. Tutoring for catch up work (@ school & @ home) Snacks if needed during day. Modifications/Waiver of Physical education for units she feels are too exhausting-- ie Track and field or in the case of her feeling especially weak/fatigued. Limited exposure to extremes in temperature-- heat, direct sunlight, cold. Limit time standing in-line or standing up Extra time to and from classes Extra time to get to buss in afternoon. Locker that is close to her homeroom An extra set of textbooks that she can keep at home to avoid carrying them home. Increased teacher and guidance communication with parents to keep her on track with class and home work. Some ideas we've had ( some specific to her middle school) are-- * allowing her to keep her cell phone on her during the day for emergency use only. * Having some sort of "flash-pass" that she can show a teacher during class in order to leave the classroom immediately without drawing added attention to herself. * She'll have to take medications twice during the school day at least. * She should be exempt from physical behavioral consequences to the class/group for individuals misbehavior. For instance on at least one occasion last fall/winter Ms. Copenhaver made the entire class do laps in the hallways and on the steps as a consequence for some errant classmates behavior.
  2. Hello-- I was wondering if anyone might be able to help with samples/ideas to include in a 504 plan for my middle schooler-- 8th grade. She has been out of school since thanksgiving 2010 and is very anxious about her return. We are trying to make is as supportive as possible. Have a meeting with the Principal and head of guidance this coming Wednesday to set something up-- I am looking for ANY things that others have found helpful in cases of Hyper POTS, EDS hypermobility, and suspected ADHD. Thanks SO MUCH!! Dawn
  3. Thank you dears. We have not tried any OTC meds. The one that makes you sleep sounds appealing as she sleeps so very little. She is trying to keep up with teleclass homeschooling, so that becomes a big deal- to not be able to sleep until 4-5 am sometimes and not being able to catch up in the mornings due to classes. It's a vicious circle.
  4. I was just reading the dizziness classifications thread My daughters dizziness seems to be the lightheaded, going-to-pass-out variety...and she has it all the time and so severely that she cannot function. Is there anything, aside from the passage of time and symptoms, that you guys have found to help with it?? ( She already pushes the salt and water. her meds are 10mg midodrine 4x day, and inderal 60 mg at night. She also just began zoloft-- .05cc/day) zzzzzz, Dawn
  5. I know! Hey it's almost RARE DISEASES DAY! feb 28th. Tell someone about POTS! http://rarediseases.info.nih.gov/RareDiseaseDay.aspx
  6. I just thought I'd put this out there for comment: My daughter is enrolled in the home and hospital schooling program whilst suffering POTS. I just called in because it is time for the big standardized test and the woman on the phone said that in her many years there, she had never even heard of POTS, and suddenly they have so many kids with it in the database there. We have only been in this grim dance since November, I know that I had never heard of it... Is it the case that awareness is just so lacking? is there an increase in cases? or has POTS been around to this extent all along? I of course am referring to all cases and not just kids. . Why is it not more studied in the medical world with so many folks suffering, and how do we get more docs to get on the case and be more interested? Wishing wellness for you all this morning. Xo
  7. Thanks for all of your posts thus far. I Have tried Dr. Kurana-- he was our first contact. His intake person said he would not see her due to her age. I have not tried "appealing" that with him. I might get to that I will also look into Dr Goodkin. It is at least a couple of hours from here looks like We have been traveling to Dr Abdallah in VA for a month and a half, which would be fine if it was working out. But it is most definitely not at the moment. He is very busy and seemingly overwhelmed. While he is so lovely and compassionate, we cannot seem to get any sort of help for her unless we are there in front of him. There is NO communication between his office and any other dr's offices-- which is making it impossible for me to try and get her help at other places. And the trip is so hard on her. It is about 2 hours, and because of scheduling we generally have to leave at 6 am to avoid traffic problems. I know that driving to OHIO might be better-- it is 4 months wait and at least 9 hours. I am trying to make that appointment anyway. We are here, a stone's throw from ( and employed by!)Hopkins -- "best of the best" and all that-- and cannot find someone to see her. It is sickening. She is so so severe and cannot do anything but lie in bed and suffer. I am watching her diminish in spirit and health with each passing day. I realize that this is not particularly unique for being severely afflicted with POTS-- I am just going crazy sitting here trying everyday to find her some help and meeting wall after wall. Nothing seems to be helping thus far and I am crazy with frustration. How is this all "OK" ? Seems insane to have such sickness and to have to fight so hard to find a thread of help. I got a letter off to dr Francomano yesterday, whom we are hoping to see for genetics... I am hoping that when she gets back, she may have some ideas for us. If she does-- I'll be sure to share them!! Sorry to get on a bit of a rant...Thanks for listening. Please let me know if you have any other ideas!
  8. Hello all-- I am wondering if anyone has experience with any docs at Hopkins or any in Maryland that have expertise or even just successful experience with treating POTS?? Dr Rowe at Hopkins is not taking new patients and we are absolutely desperate to find someone nearby who will be interested and able to help my daughter. She is so very severe, and is just so sad. Please post here or PM if you have any ideas for us. Thanks so much.
  9. Best of luck to you both. In my prayers. Dawn
  10. On another note-- I am also looking for help on how to continue and coordinate my daughters care. We began with her Pediatrician and a Cardio at JHU... neither of which really knew what to do with the severity of her presentation, I think. Then we went to see Dr Abdallah and consequently the other docs were all too happy to "jump ship" so to speak. Now we are in the hands of a Doc in whom I have the greatest hope for the recovery of my daughters health...but he is so, so busy, and I feel a lack of clear understanding/direction here on our journey. MAybe it is just the helplessness of wanting to DO and FIX. I understand that this is an illness that is very hard to define-- I just feel so frustrated. And worried. Doc did mention for us to see a geneticist--I gather that this who would determine any of the hypermobility issues. What about MCAD? What kind of Doc do I look into for that? And are there any other tests that I should be looking into for her? Then what about complimentary medicine and/or supplements/alternative modalities?? I feel like we need a project manager! Since that looks to be me, if there is anyone who can recommend a good conceptual map/way to set about all of this, I'd sure appreciate it! At our last visit she had a TTT and was determined to be hyper-adrenergic. I know that this is in part decided through her BP soaring as well as her Pulse rate ( as well as her flushing and hot flashes)-- but does this not require any further tests to decide it?? WE, through a series of unbelievable antics during our stay at JHU, never were able to complete a 24 hour urine study. I know that this shows the presence of a A pheo. tumor, but does the catecholamine info also contribute info towards the Hypo Ad. dx?? I have been unclear as to whether I should follow up and press for that.. or which doc to even request it from now! Please help if you can. I very much appreciate you all, and wish you great healthy days ahead! Thanks, Dawn
  11. Thanks Lyn and Julie. I really appreciate the kindness. I was reading a bit today and stumbled upon a post here on "motivating a 13 year old" I think what I was trying to communicate in my post above was very much in line with the sort of things I was reading there versus trying to push my daughter academically. It is a much lower bar I am afraid. I completely acknowledge that she does not feel good, but she is so content to just lay around in bed for days upon days. I worry about the fact that she sees no sunlight, or people that don't venture up to her bed; I know that the loss of muscle tone and such only adds to the problems also.... She also just doesn't naturally possess a "motivated" sort of temperament. She will just lie there and read or ipod or craft forever... I worry that she is becoming a bed-bound invalid! She has already had to stop going to school and has been home schooling for the past month.Her initial docs were very concerned about her not getting up and about. I am also not sure if she is depressed-- I know that she feels physically uncomfortable at the least, but when we do manage to get her downstairs with the rest of the family, she does seem more alert/active and engaged in "life", even if its just from the sofa instead of bed. Any thoughts or advice is very much appreciated, I am just so worried about her. I am going to post a separate thread on figuring out how to coordinate her care. Please see and respond if you have any ideas. Thanks so much!!!! Dawn
  12. Oh sorry-- sarah, I wanted to respond and thank you as well! Can you tell me how you coped with being so affected?? I hope that we can look forward to her getting better as well! I will check out those papers, thanks. What are the problems withhyper adrenergic pots and beta blockers?? I am still trying to figure out how to understand this very undefined illness... I will have to read about mcad, as I have no idea what it is. The first dr who dx'd her with POTS was so reassuring. "she just needs more salt and fluids, and she'll be fine. She will outgrow it very quickly" is the way I remember it . I had of course never heard of it, and sure had NO idea that those first few dizzy spells would so quickly turn into such a life altering problem. For the whole family! I try not to get too discouraged, but it is hard when it's all been so bad thus far! Thanks again.
  13. Thanks Julie and Sarah. This seems such a super nice community! I really appreciate your welcome and thoughts. Julie-- are you local to Hopkins then?? We are. In fact employed there. Much to our sadness, dr Rowe would not see our daughter, even after pleadings and campaigning from colleagues Just too busy. It is very frustrating If you are local I'd love to maybe talk to you about other local resources. Yes, we are seeing a geneticist as soon as I can get the paperwork done-- I thought we'd try dr francomano at Gbmc as I have heard good things of her. I am open to ideas though!! My daughter is so low functioning right now. It is hard and confusing as a parent to not really know when to " push them" an when to not. She has begun home schooling for now and manages to keep entertained pretty well lying in bed. I just want her to get some of her life back. I know she feels awful. It just seems like so much inactivity cannot be ok. She is drinking a lot of fluids and higher salt in diet. She does not tolerate the salt pills at all. As i mentioned the meds are not obviously helping at this point. She is having nightmares and is exhausted. I am wondering if this is the toprol's influence. . I don't mean to blah on and on. If you have any other thoughts on how to make things easier for them in the acute swings, I'd love to hear. Thanks again.
  14. Hello. I have been lurking for a bit, and want to say hello. I have a 12.5 year old daughter who was diagnosed with POTS at Hopkins just before the Holidays. She saw dr Abdallah in Reston last Friday and he dx'd severe hyperadrenergic pots and recommended seeing a genetics dr for looking into Ehlers-danlos. I think what I mostly am looking for is help with understanding how to best proceed in all of this. From reading here, I understand that there is usually something else that causes the pots to occur? How does one go about trying to figure that out?? I just want to help my sweet daughter-- it's as if she has been taken away by this. She is mostly bedridden. Losing weight. Her chief comPlaints are feeling super dizzy all the time with hot flashes and feeling disassociated. She can't even go to the restroom across the hall without hanging on to things. She has started midodrine and toprol. She says she thinks it has helped some, but she is also recovering froma horrid stomach flu that she came down with fri night. Her ttt was very hard to get through. I remember only that her hr jumped to 174 on tilt, which was at least 50 Pts. I am not sure what else to add-- just that I am so sad and feel so ineffective in helping her at this point. Any moms that might have advice, I'd love some!. Please excuse my typing--banana fingers on an iPhone! Dawn
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