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paona

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Everything posted by paona

  1. My 16 year old met about 5 teens with POTS when we stayed at the Ronald McDonald House. She was being diagnosed with POTS during this visit. While she didn't seem to need the rehab program we heard wonderful things about it both from teens and their parents. I know for my daughter just meeting other kids and being able to talk about it was helpful for her. I think hearing how severe their POTS got and how following the plan was helping seemed to motivate my daughter to follow through on what the Mayo set-up for her, well at least most of the time.
  2. My 16 year old uses fludrocort along with metoprolol tartrate (betablocker). Initially she was given it to help retain fluid and salt and raise her blood pressure. It did raise her blood pressure and make her feel a touch better but that is about all. The reason she needs it is to keep her blood pressure up enough to take her betablocker, which does help lessen most of her POTS symptoms. I think she also runs low on cortisol so I think it brings these levels up a touch but they still seem low to me. I also think that keeping her cortisol levels more stable she might even get through illnesses a little better. We will see as she was just diagnosed in May of this year. Also she is only on 1/2 tablet of a .1 mg tablet.
  3. My 16 year old was taken to a MinuteClinic at a pharmacy store. It is staffed only by a nurse. They waited for over an hour and then were told that since she was on fludrocort they could not give her the rapid strep test but that she would have to have it done by a doctor's order. My husband took her to an urgent care then. She saw a doctor and the test was negative. This is all rather new to us with the meds so we weren't aware that this might happen. Fortunately the doctor knew all about POTS and said he knew some of the doctors at the Mayo that dealt with that since he interned there. Just thought I'd pass this on. I don't know if anyone has encountered this with any of the fast clinics in stores that are just staffed by nurses.
  4. My 16 year old was diagnosed with POTS in May, at the Mayo. They said her ferritin levels were too low and she's been on Iron 65 mg (equivalent to 325 mg Ferrous Sulfate) twice a day since then. Presently her levels are normal but I don't have those in front of me. I don't view her diet as being low in iron so it surprised us that she needed this supplement, and currently still takes it. These are the results from May: Iron..........35-145 She had 70 Tot. Iron Bind Cap 250-400 She had 352 PCT Saturation ...14-50 She had 20 Ferritin........20-307 She had 10
  5. My 16 year old takes 1/2 - 1 tablet of .1 tablet of fludrocort which helps bring her blood pressure up a little. She has very low blood pressure to start with, with the bottom number usually in the low-med 40's but improved in the blood pressure area with the fludrocort. She takes metoprolol tartrate 25 mg tablets, a full one before she gets out of bed and another 1/2 with lunch. This so far has helped reduce the tachycardia, and many of her POTS symptoms. Things like her tremors, shaking, and digestion also improved with the beta blocker. She started the meds in May. She was on 2 tablets of the metoprolol tartrate but that was cut in half and then we tried an in-between dose. The reason it was reduced was her blood pressure went very low again even though for 4 months it was fine. Her resting heart rate was around 49 at that time as well, so another reason to reduce the beta blocker a little. So far all levels are better.
  6. I don't know the age of the youngest child considered to have POTS although I've read on here several people feeling like they had the same symptoms as young as age 6 or 7. Our 16 year old was officially diagnosed in May at the Mayo although I already suspected she might have POTS based on her symptoms and past testing that was missed by 2 other doctors, one being a specialist in POTS. We remember her complaining of her heart racing as young as age 7 and because of a family history of tachycardia (she didn't know about this) she had an EKG done, but it was done lying down. We decided to not do the holter monitor at that time, and unfortunately we didn't request it until she was 15, after a bout of H1N1 when we grew even more concerned about her symptoms. In the elementary years starting around age 7 she spent many days pale, nauseous, and with chest pain in the nurses office. The nurse felt she was sick but her teachers felt she was trying to get out of class. We also felt she was sick and basically enjoyed learning and not trying to avoid being in school. Around this time she had many sensory issues both to light and sound, auditory processing issues and visual perceptual issues. There is also a family history of autism so we wondered if she had some of the wiring of an autistic person without the social issues. We also felt that since she had many unusual allergies that her symptoms might be asthma or her allergies. Now looking back and seeing some of the sensory issues escalate when she would complain of heart racing, chest tightening, etc. we feel this was all part of POTS since a young age. The sensory issues are not as intense as they were when she was younger but they do flare up when her POTS is worse. You mentioned your son having anxiety and it seems to me that even if it has developed separately if he is having rapided changes in heart rate this could cause it or add to it. I would get some readings on his blood pressure and heart rate at times when he has any unusual symptoms and then when he doesn't seem to be symptomatic. I wish I knew what I now know about POTS because I think we could have had more supports in place much earlier for our daughter. We did therapies for the sensory and perceptual stuff but seeing how she reports those are clearing up with treatment for POTS, she might have suffered less.
  7. I don't have POTS, my 16 year old does. I do have Meniere's so I will share a little about that. In my late 20's I had sudden fullness in both ears (like cotton in them) and loud whooshing sounds. Soon after I had significant hearing loss in both ears. I did not have vertigo but did have a few times of dizziness and loss of equilibrium where I would bump into walls walking down a hallway. I was diagnosed with Meniere's based on the symptoms and my hearing test. There is no way to see the changes in the inner ear without damaging it. All research is done on cadavers for that reason, I do know that environmental and food allergies can affect Meniere's and autoimmune issues may be a factor in triggering Meniere's. My Meniere's was episodic for about 5 years and then it was not an issue except being left with a mild hearing loss in my right year. Then 20 years later I woke up having significant hearing loss in both ears leaving me unable to use a phone or even having a one-one conversation without struggling through it. For me I believe there is a direct correlation to my difficulties controlling my Hashimoto's (autoimmune hypothyroid). The damage seems to be more intense now leaving me with moderate hearing loss and constant tinnitus (sounds) in my right ear and a mild loss in my left ear. This time around I have had severe vertigo where at times it lasted 24 hours with the room spinning at a very fast pace or would jump up and down repeatedly. I don't know if there is a correlation with dysautonomia and Meniere's but I do know that anytime the body is not regulating right it can cause problems with Meniere's. I would also think that blood flow changes could impact Meniere's. I would encourage consulting an ENT if you are experiencing fullness in your ears, new ringing or whooshing sounds, hearing changes, and vertigo or dizziness that follows. http://www.pehni.com/patient_ed/menieres_disease.htm http://www.pehni.com/referring/menieres_BPV.pdf (information on Meniere's from Dr. Paparella who does research on Meniere's)
  8. We also saw Dr. Fischer back in May of this year. We also had a positive experience. We stayed at the Ronald McDonald house as we needed access to kitchen facilities and a fridge. While there my 16 year old daughter met several adolescents that were part of the rehab program. I think for her just meeting and talking to others helped her understand the importance of following through on the program set-up for her. She heard their stories and how limited they were before starting this program. I think one young man had been hospitalized for a few months and arrived in a wheelchair. The first day of rehab they had him up and playing basketball. We met these kids after they were about 2 weeks in the program and they felt very positive about the progress they had made. Since I already suspected my daughter had POTS I had already started some of the suggestions before we had the diagnosis at the Mayo. We also had been trying to help support our daughter through numerous symptoms since she was around 7 years old. Looking back we now believe this was all part of POTS for her. Like your son my daughter was also iron deficient even though she has a diet rich in iron. Some test also indicated that she was very out of condition for a girl her age. My daughter already was on fludrocort to try and bring her low blood pressure up. Dr. Fischer added metoprolol tartrate (beta blocker) and my daughter immediately lost the nausea and gained an appetite for the first time in 2 years, Additionally other symptoms for her left or lessened. She was instructed to have water at her bedside and take the metoprolol with 8 ounces of water and stay in bed 10 more minutes. Then she also was instructed to do the exercises that your son has. She has pretty much worked up to 30 minutes of aerobic type activity, 6 days a week, and usually gets her 12 cups of water, and measured salt each day. Since parts of the program were already in place for her, they just bumped up some expectations for her, and they didn't suggest the rehab program. We hope to come down on her fludrocort but for now it was agreed it gave her some relief, and would be left as is. She has taken numerous vitamins for many years and she remains on those as well as a laxative, but that dose is lessening. She remains on a special way of eating due to her unusual allergies. She still has several triggers that make some days worse than others but has just sort of adapted since she has had much of this since very young. We are still working on the concept of owning more of this without us (parents) managing it. The Mayo suggested weekly meetings talking about what goal she could take on for the week. Basically she does well with short term goals.
  9. Certainly sounds like it from the reading I've done. My now 16 year old had H1N1 over a year ago and her POTS symptoms became severe. She was not diagnosed at the time but we already knew she had tachycardia and very low blood pressure. She needed IV fluids and was in bed over 10 days. She was tested for Addison's soon after this and we also requested her first holter monitor. She currently has a skin staph infection and while it is healing (lab results just came in so a different antibiotic is needed), the readings on her bottom number for blood pressure are 40-46 since this bacterial infection. Two days before the skin showed the infection she started with POTS symptoms again. As the poster above mentioned many factors can make POTS worse. For my daughter it is allergies, bacterial infections and viruses. Fortunately the doctors are watching her very carefully with this infection. The best antibiotic would have been one with sulfa in it but since she had a rash from a sulfa-based drug when little they will try this first. They want to see her again this week to make sure it isn't in her lymph nodes or glands, and to make sure her blood pressure comes back up.
  10. My 16 year old was recently given these instructions by her doctor concerning morning time. She was told to take her beta blocker with 8 ounces of water (kept by her bed) and then lie down 10 minutes. Then she sits on her bed and does 20 arm curl ups with weights, then 10-20 squats, and then 20 up and down on toes. I think those are the exercises but basically ones to pump blood throughout the body.
  11. I don't have POTS. My daughter is the one with it. I have had a colonoscopy though, and was not put to sleep but had some kind of IV sedation. I have a very curved colon and past experiences with flexible sigmoidoscopy were so painful that I had to have them stop the procedure both times but I did not have sedation for those. I put off the colonoscopy because of my fear and it actually went very smoothly for me with the sedation. I was not tired or spaced out form it, and even though I had a few twinges times of pain I had a wonderful doctor that talked me through it. Perhaps you can have it done without anesthetic. Most people use a form of sedation where you remain awake rather than anesthetic. Also the doctor doing the procedure said a colonoscopy is usually less painful than a sigmoidoscopy.
  12. My 16 year old's 504 accommodations are: She can be provided with a visual copy of class notes from teacher or designated student. Multi-step directions can be broken down into smaller steps. Visual tasks will be monitored by staff (she has had problems with visual perception at times) When absent for medical reasons, she will not be penalized for class participation points. They will either be excused or she will be allowed to make them up as decided by teacher and student. She can be given labeling cues in math to minimize visual errors. When feeling faint and unable to focus or retain information, she will notify teachers and discuss if concepts or information needs to be provided or taught again. She will remain from having foods at school with dyes and preservatives because of allergic reactions. When her Irlen lenses are in transition and not filtering correctly, she with be allowed to wear a hat with a brim to help filter light. These were accommodations last year and before the diagnosis of POTS. At this point she no longer uses the Irlen glasses. Individual teachers have been very supportive to her even before the POTS diagnosis. She is an excellent student and excels easily so I think her teachers don't see her as trying to avoid things and are willing to help out the few times she does struggle. Elementary school was a whole different journey and she was pretty clobbered physically but without a diagnosis. She got very little support and we had to fight for a 504 then.
  13. I'm new but just wanted to let you know about our experience at Rochester Mayo. Our 16 year old daughter was diagnosed with POTS there in May of this year. We originally were told it would be a year wait but it ended up being 6 months. All of her appointments were in pediatrics. Her main doctor was Dr. Fischer(he has much information about pediatric POTS online). She had 5 days of appointments and we were very pleased with the comprehensive testing that was done. The previous specialist in POTS that we saw in our city, felt that she needed an evaluation for autonomic dysfunction but didn't feel she had POTS because of her overall low blood pressure. Dr. Fischer was very helpful in explaining the differing opinions around POTS diagnosis and told us pediatric patients frequently have low blood pressure and the criteria can be different in diagnosing them versus an adult. During that week we met with a variety of specialists, including a neurologist, and a psychologist that helped lay out part of the plan and showed us a video featuring other youths with POTS explaining their plans for improving. Since our daughter has presented with symptoms since age 7, we felt that Dr. Fischer ordered lots of tests to evaluate whether it was autoimmune, genetic, etc. We left there with a very specific plan. Our daughter also met several adolescents involved in their rehab program for those with pain issues, fatigue, POTS, etc. Our daughter was not in need of that program but met about 5 teens with POTS when we were at the Ronald McDonald House. It was interesting to hear their stories of how severe they were when they first came to the Mayo and the progress they were already making after several weeks. Overall we heard lots of positives about the pediatric section of Mayo. Paona
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