Christy_D

I monitered my sons bp/hr for 3 months daily. There was no rhyme or reason as to how he was feeling in relation to his bp/hr. On days when his vitals were normal, he could be bedridden or other days when his vitals were crazy high, he could be feeling good. I don't understand it. He is also a night owl. He is sick everyday in the morning thru part of the afternoon. Usually by the evening he is fine(still feeling nauseated but functional anyway).

I got the "Finest Natural" brand of D3 at Walgreens. It is a softgel. He is taking 2000 IU per day. My son also used to take Metroprol(?) but it made his resting heart rate go to low, so he was always tired ( his lights were on but he definitely wasn't home). He currently takes Doxepin -100 mg, we just upped it from 50 mg a month ago, so that also might be helping. He takes .1 mg of fludrocortisone and that keeps his dizziness at bay. The doctor also has him taking Thermatabs to get the extra salt he needs. My sons symptoms are nausea(this is the one that we are trying to still get under control), dizziness, migraines, hot spells, heavy limbs, brain fog, abdominal pain, sleep issues,fatigue. I probably forgot one or two there are so many. The doxepin has something in it that also helps him sleep. He takes erythomycin for his gastroparesis. He was also diagnosed with small fiber neuropathy. From everything I've read, Vitamin D is very important for the nervous system. I get really tired of dismissive doctors. We actually only deal with his two POTs doctors now because every other doctor wants to still label him as having anxiety and trying to ditch school. Even the original cardiologist who diagnosed him with POTS wanted to blame the nausea on anxiety. He didn't know what else to do for him other than fludrocortisone. So we headed to Cleveland to get help.

My son's blood test came back that he was extremely vitamin D deficient (below 10). It's no wonder since he rarely made it outside in the past year. Since starting a vitamin D supplement 2 weeks ago he has had improvement. He had the best week he has had in several months last week. He slept normal hours, and had no problems falling asleep. He still woke up every day nauseated but he became functional by noon, instead of 3 -7 in the evening (or some instances not at all). I didn't have to cancel his homebound teachers a single day. The vitamin D, plus his other meds seems to be helping. I'm keeping my fingers crossed that it just wasn't a fluke and that the vitamin D is the reason. Hopefully this continues and maybe in the fall he can at least make it to school in the afternoon.

We live in St Louis and drive through Indianapolis on our way the have our son treated in Cleveland. I recommend finding a doctor that specializes in autonomic issues. We see a neuro at University Hospital in Cleveland. He gave my son the Tilt Table Test and the Thermoregulartory Sweat Test, along with MRIs and such. It is good to find a doctor that not only diagnoses but is involved with the treatment.

Flop, that is the same pillow my son got from the chiropractor. He loves it too, after he got used to it.

My son uses one of those expensive pillows that his chiropractor recommended. They measured him to get the right size and everything. He hated it at first, but once he got used to it, he now can't sleep without it. It does help with the neck issues he was experiencing.

My son, who is 15, plays on line games. He has friends he talks to regularly via the internet. It seems to keep him in the loop with them. That way he is not as secluded, it's definitely not the same as being with his friends but it seems to help.

My son takes 2 salt tablets in the morning and 2 at bedtime, he has had no problems. In the morning it is with breakfast, and at bed time he probably still has food in his stomach since he snacks a lot.

Hi, My 15 year old son has POTS, Gastroparesis and small fiber neuropathy. He has the symptoms you listed, but his most debilitating symptom is nausea. He also has occassional brain fogs, can't think or concentrate. He doesn't like heat, especially on his abdomin, but if he gets too hot he will start itching all over. He used to have frequent migraines, but those have stopped or they have become silent(no pain) but cause the nausea. My daughter (18) has some of the symptoms, but she is quite functional. She has the pupil thing going on too. Christy

My daughter has blood pooling on the right side of her face. I have been told that the nerves on that side of her face don't work correctly, they don't circulate the blood so it begins to pool. She is now 18 and has had laser surgery twice to remove the pooling. It appears that about every 3 years or so she will have to have this done. A dermatologist called it Port Wine Stain, even though what I've read about that is it is a birth mark, she wasn't born with it.

Since my son's diagnosis, we have made a total of 3 trips to Cleveland(since October). We are scheduled to go back in July. Each trip had additional tests run, trying to figure out the cause of his nausea(decided it is neurological). Our follow up in July is (as of right now) just a doctors appt-no tests are scheduled. I am frequently on the phone with their office, letting them know what meds are working/not working. We try new medications, they just call in the presciption or mail it to me. We don't have any doctors where we live that we use for his treatment, they have all been uncooperative, so we really have no choice. Even after diagnosis, they wanted his nausea labeled as anxiety. When the doctors in Cleveland said we could get some of the tests run where we live, the pediatric GI here said he would not request the tests. So our only resource is Cleveland. My son has been sick every single day since Feb 09. He is in bed until at least 2:00 and then slowly is able to start becoming functional. Frequently it is later than 2:00 or not functional at all. So we are putting every effort into getting him somewhat more functional. He is missing his teenage years, no longer plays sports, no longer goes to school, etc...

Your description describes my son as well, but not as bad at that early age. He did not get terrible until age 11. He was diagnosed at 14. The doctors before that kept wanting to blame it all on anxiety. When he was little he got sick almost every time he got in the car. We, too, travel 9 hours to see the specialists. They have been great. We see Dr Gisela Chelimsky in Cleveland. She is a pediatric gastro. We also see her husband who is a neurologist(autonomic specialist). They have done testing to rule out my sons nausea (he no longer vomits) being caused from his GI process. He does have gastroparesis though. They believe my sons nausea is caused from the migraine process. Right now we are just changing the dosage in his medication to see if that helps. All of his other symptoms are mostly under control with the current meds, just still working on the nausea. Keep advocating for your daughter, you know her best. I had refused to let them blame anxiety as the cause of my sons ailments- I knew him best.

My son has yet to go to school a single day of his freshman year. His counselor said, with the homebound teachers and the on line classes he is taking, he will be able to participate in his schools graduation when the time comes. He has a 504 plan that the school initiated with me. They informed me of all the help we were eligible to receive because of his illness. Make sure your school steps up and provides you with all the help you need. Last year, when my son was in 8th grade he received homebound while he was attending school. For every day he missed, they gave us 1 hour of homebound help. It kind of worked as a tutor to help him stay caught up and give him instruction where he needed it. The 504 plan does require your doctor to fill out a portion of the form, so he needs to be on board.

Time for a new doctor. My son has not gone to school in over a year, and his doctors completely understand, as does his school. He is on homebound schooling, they send a teacher to our house for his English and Math class. Then he takes the rest of his classes on line. Most of his schoolwork is done in the evenings since he is sickest in the morning thru afternoons. We have yet to find the right drug for him, although he has relief from many of his symptoms on his current meds, but we can't get rid of the nausea. He was on Toprol but it brought his heart rate down to 46, so even though he was feeling better, he was mentally checked out. He slept all of the time and his grades dropped because he wasn't functioning mentally.

My son also sees both Dr Chelimsky's(Thomas and his wife Gisela). They are both wonderful caring people. We live in St Louis and travel to Cleveland to have them treat my son. They have looked for the root of my sons nausea, and have ruled out it being caused by the GI system. It is caused neurologically. While my son was having testing done last week, Dr Chelimsky stopped by so we didn't have to make another trip to the hospital to see him. I highly recommend them,(he is a neurologist, she is a pediatric gastro). It does take about 3 or 4 months to get in, but it was well worth the wait.

My son, who has POTS, his heart rate varies from day to day. I track it daily, along with other things. Some days his heart rate only goes up 10 to 20, while other days it goes up 50 to 60 from sitting to standing. When he had his tilt test he was having a good week, so he was borderline during the test. So I think it can vary.

My son also has major sleep issues with his POTS. He was also diagnosed with Restless Leg Syndrome during his sleep study. He currently takes Doxepin. It stopped working for him, too, so we are upping his dosage. His dosage was pretty small for his height and weight. He started weaning up to the new dosage Saturday and it seems to be working. Once he has been on it for awhile, I'm sure it will become ineffective again, but hopefully not.

I feel your pain. My son turned 15 in February, and spent the whole day in bed, practically the whole month. We are in Cleveland right now(3rd trip) getting more tests done. His main symptoms are mainly GI , always nauseated. It is so unfair that they loose their childhood. My son has not been to school in a year, and this should be his freshman year. Hopefully, these tests help us with something. Theses doctors have been great and are always trying to help, this helps us stay positive. My son also just grew again and seems to be worse. He is now 6'1". They keep teasing him in the hospital, since we go to the pediatric units, his feet hang off the bed. They said he has the record this month for being the biggest. Keep your head up, just keep trying to get him some relief.

My son was diagnosed at 14, he is now 15. (although symptoms started around 11 ). He is 6' 1". His also became terrible after a 7" growth spurt. He went from 5'4" to 5'11" in 15 months. He was very thin but has put on a little weight with his inactivity. He currently weighs 155.

For my son, he doesn't have the constant dizziness, he has constant nausea. He has been in bed for the past month almost non-stop. Some days he has been able to get up for an hour or two. This has been the worst month since becoming ill. He was diagnosed last June, but didn't start getting help from doctors until October. For us, it has been trial and error with different medications. Most of all of his other symptoms with the current medication are gone, but the dibilitating symptom-NAUSEA, is still there and getting worse. He is on homebound schooling and we haven't been able to have his teachers come in a month. We are going back to Cleveland next week and they are going to try a new med then. It is an injectible so they have to train me on how to give him shots. So our experience has been trying new med after new med.

My son used to frequently get this, except he called it licorice legs. He has not had this though since he started on Doxepin. We used to have to help him walk, he would put one arm around my shoulders and the other arm around my husbands just to get down the hall.

My son had a colonoscopy in October but it was done in Cleveland by his autonomic gastro dr. They made sure he had an IV and that he was very hydrated. He came through it okay. The aniestesiologist(?) was very well versed with dysautonomia and turned the IV up and let us know what could happen because of the autonomic dysfunction. During the colonoscopy my sons heart rate dropped to 20. The stopped until he restabalized, but other than that everything went fine. Good luck.

I've read that it can takes teens into their early 20's before the recover. My son has been sick for a couple of years now(daily for 1 full year now). He is going to be 15 on Thursday. I hope it doesn't take that long.

That is great news. That gives me more hope for my son. He will be 15 next week. We are still trying to get his figured out. He hasn't been to school for a full year now, but this does give us hope that we will get it figured out.

My son had a TST test the other day. We haven't gotten the results yet (our doctor was not there). They put the orange powder on him and put him in the sweat box. He turned purple on his legs and arms and the top part of his chest. The main part of his torso remained orange for the most part. Should you sweat everywhere? He can't stand any heat on his stomach, abdomin area. It makes him feel sick. I'm guessing if he doesn't sweat there, the organs aren't being cooled down?