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Introduction and a question
Hi everyone. My 14 year old son was diagnosed last week with POTS after a 4 day stint in the PICU and a tilt table test. He has been experiencing episodes of fainting with convulsions since Jan of this year. In June, he was diagnosed with SVT and put on Inderal. He had bi-weekly ekg from our primary doctor. When we saw the pediatric cardio, she really didn't see any svt but said that as long as his episodes stopped, stay on it. Everything was good until the end of Sept, he fell at a friends house and broke out his tooth, back to the cardiologist group and saw another doctor who told me that he was fine, nothing was wrong with him, his primary was making it up, he was making it up and give him more salt. Primary doctor lowered his Inderal and ordered more tests. He kept having episodes and finally our primary got an adult cardio to look at him. He agreed with the primary and called the pediatric cardio and insisted on several tests. The next morning, another episode and the ped cardio did a direct admit to the ICU. During the tilt test his heart rate rocketed to over 150 (his average is 80) and stayed there for over 15 minutes until his blood pressure dropped and he passed out. The table broke and took some time to fix it and lower it. Scariest thing I have ever seen and I have caught him several times before, but this was different. The cardio had no idea what had happened and had never seen a reaction like that. She called several doctors to find out what happened and finally got a diagnosis of POTS. So I was handed a piece of paper somewhat describing POTS, given a prescription for Midodrine and sent on our merry way. We have seen 2 neurologists and both don't have any idea what we are talking about. I have no idea who to see to treat my son, our insurance company has no idea and so we are in limbo. His school won't let him back in until we can guarantee that he won't fall in school. We can't, so they are suggesting home schooling.
So now my questions, does anyone know of a doctor in South Florida with experience in this? How much worse does this get? Is anyone successful on Midodrine? How can we tell if he has other disorders linked to this like Marfan or EDS, which doctor for these?
We have bought a watch with a heart rate monitor on it for him to keep an eye on his pulse (he has no clue when it races) and a blood pressure cuff. I take his BP every morning and at night to try and get a baseline.
Thanks in advance :)
Jennifer
So now my questions, does anyone know of a doctor in South Florida with experience in this? How much worse does this get? Is anyone successful on Midodrine? How can we tell if he has other disorders linked to this like Marfan or EDS, which doctor for these?
We have bought a watch with a heart rate monitor on it for him to keep an eye on his pulse (he has no clue when it races) and a blood pressure cuff. I take his BP every morning and at night to try and get a baseline.
Thanks in advance :)
Jennifer
We live in Missouri and my son has not gone to school since February. He is on Homebound and takes On-Line classes (that were free until our Govenor just cut it from the budget, so starting in Jan will have to pay for). Our Homebound teachers, Math and English, come in the evening since someone over the age of 21 must be there.
The on line classes are great, as he can do them when he is feeling well enough(sometimes at 2 am since he suffers from insomnia as well). He is a freshman, but when he graduates, it will be with his regular high school. (Hopefully he will get back to regular school someday).
The on line classes are great, as he can do them when he is feeling well enough(sometimes at 2 am since he suffers from insomnia as well). He is a freshman, but when he graduates, it will be with his regular high school. (Hopefully he will get back to regular school someday).
sounds like my oldest son; he was 6'1 at 13 and about 130lbs :) size 12 shoe lol he had some of the vision problems and the tubes that connect his kidneys to the bladder collapsed when he was 11.
Homeschooling can be done strictly by you the parents; but there are some downsides to that - he can only get a GED equivilent; whereas if you do the FL virtual school online www.flvs.net he's enrolled as a public student and will get a regular diploma.
Also; you can ask for a home bound teacher - the county/state will provide him a teacher to coordinate work and do all the leg work for you since he has a medical condition and they requested him not be back in school until he's not passing out. The homebound teacher may take some phone calls and finding the right person to get one; but that may be an option also.
I only know about this because my youngest son is Autistic and I've homeschooled for 1 1/2 yrs now, when he's old enough, I'll enroll him in the FLVS and back in public school system.
Homeschooling can be done strictly by you the parents; but there are some downsides to that - he can only get a GED equivilent; whereas if you do the FL virtual school online www.flvs.net he's enrolled as a public student and will get a regular diploma.
Also; you can ask for a home bound teacher - the county/state will provide him a teacher to coordinate work and do all the leg work for you since he has a medical condition and they requested him not be back in school until he's not passing out. The homebound teacher may take some phone calls and finding the right person to get one; but that may be an option also.
I only know about this because my youngest son is Autistic and I've homeschooled for 1 1/2 yrs now, when he's old enough, I'll enroll him in the FLVS and back in public school system.
Thanks for the tip on the virtual school. I will definitely look into that. I not sure how we are going to home school unless they are willing to travel to my mother's house. I work full time and financially cannot take anymore time off than absolutely necessary.
Why I mentioned Marfans is because at one of our visits to the ER the doctor asked about it. My son is very tall for his age (6'1"), skinny (130lbs.) and has long fingers and toes. I didn't think much about it until he had his POTS diagnosis and I read that a lot of people have that and EDS. Now I asked my uncle and he doesn't think Nick has it. So who knows?
Why I mentioned Marfans is because at one of our visits to the ER the doctor asked about it. My son is very tall for his age (6'1"), skinny (130lbs.) and has long fingers and toes. I didn't think much about it until he had his POTS diagnosis and I read that a lot of people have that and EDS. Now I asked my uncle and he doesn't think Nick has it. So who knows?
Jennifer; for marfan's syndrome I took my oldest children (now 23 & 24) to USF here in Tampa. They have a wonderful team who works specifically with this; or they used to 8 -10 years ago when I had them tested.
My oldest son actually has a variation of it and my oldest daughter was on the outer edge of the dx. She had more of the clinical symptoms and he had higher scale #'s (sorry my brain just froze, so they may not make sense I'll have to find their paperwork).
You can always look up USF and find their number and give them a call to see.
I have NCS and OI; along with heart problems and other things. Midodrine works ok for me - my biggest thing is getting in the recommded amount of salt daily. Fluids and protein and some other things like raising the head of the bed, compression socks/hose seem to help some days, but not others.
For school; I'd suggest FL virtual school - it's free and he can work on his own pace and if he stays with it; he can graudate with his class or switch back to public school if he gets to feeling better. And if I remember correctly, he can even do extra cirrucular [sp] activities if you want him to.
My oldest son actually has a variation of it and my oldest daughter was on the outer edge of the dx. She had more of the clinical symptoms and he had higher scale #'s (sorry my brain just froze, so they may not make sense I'll have to find their paperwork).
You can always look up USF and find their number and give them a call to see.
I have NCS and OI; along with heart problems and other things. Midodrine works ok for me - my biggest thing is getting in the recommded amount of salt daily. Fluids and protein and some other things like raising the head of the bed, compression socks/hose seem to help some days, but not others.
For school; I'd suggest FL virtual school - it's free and he can work on his own pace and if he stays with it; he can graudate with his class or switch back to public school if he gets to feeling better. And if I remember correctly, he can even do extra cirrucular [sp] activities if you want him to.
That is what we are wondering (genetics). I have looked at the EDS symptoms and my son has severe scarring issues, my mom bruises easily and a has some pretty bad scars, so who knows. Who would I go to for testing for that?
As for the norepinephrine, it was a blood test. I had the urine test for serotonin when they were looking for carcinoid.
Nick had another episode yesterday morning getting out of bed and broke his nose. So school is out for a while. He was so excited about going back. His midodrine has been upped to 10mg 3x's a day and they are adding florinef. We could tell a difference in his heart rate and blood pressure. And, more importantly, he could tell by watching his watch. He noticed how his heart rate would skyrocket when he stood up. His blood pressure is still pretty low today but his heart rate is back to normal.
As for the norepinephrine, it was a blood test. I had the urine test for serotonin when they were looking for carcinoid.
Nick had another episode yesterday morning getting out of bed and broke his nose. So school is out for a while. He was so excited about going back. His midodrine has been upped to 10mg 3x's a day and they are adding florinef. We could tell a difference in his heart rate and blood pressure. And, more importantly, he could tell by watching his watch. He noticed how his heart rate would skyrocket when he stood up. His blood pressure is still pretty low today but his heart rate is back to normal.
It sound like genetics. I have it my 15 year old and now my 12 year old. Look into EDS. That is what genetic defect I think runs in my family. I went through many of the same symptoms 10 years ago but went on meds. Then years Later my older daughter got diagnosed and 2 months ago my little on so now we know it is on the gene. My daughters are getting tested with a gentic DR. in Miami in Jan. How did they see your levels were high? Blood? Also the type of pots is genetic.
Thanks Kelly, I'll send my number. You would think the south Florida would have a lot of experienced doctors? My son has a lot of issues with headaches, chest pains and exhaustion. My uncle is a Gastroenterologist (sp) and he is the one who kept insisting to the cardio and neuro that something was wrong. I'm lucky in that area. We are trying to go back to school on Monday and I have had to fill out a lot of paperwork. He has been out of the hospital for 2 weeks now and hasn't had an episode but he is really tired in the mornings. Have you heard about Dr. Young at Jackson Memorial? He is head of the EP department and is the one who diagnosed him.
In an interesting turn of events, I think I have the hyperadrenal form of POTS. I am gathering info on it to give to my uncle to help him look for the signs. I have been tested for everything imaginable for the past 2 years and finally last February they discovered that my norepinephrine levels were off the charts. They have been searching for a pheochromocytoma since then. I have the palpations, have always been dizzy when I get up, difficult time moving after laying in bed, migraines, cannot walk for more than a couple of hours (legs, ankles and feet swell and are extremely painful, takes 2 days to recover), diagnosed with MVP 6 years ago, flushing that never goes away (that's what started the search), insane panic attacks at all hours, wake up sweating, thought I was starting pre-menopause again (I'm only 37), extreme fatigue, so many other things. It escalated after my last pregnancy.
What an insane medical nightmare. Thanks to everyone who has responded :)
In an interesting turn of events, I think I have the hyperadrenal form of POTS. I am gathering info on it to give to my uncle to help him look for the signs. I have been tested for everything imaginable for the past 2 years and finally last February they discovered that my norepinephrine levels were off the charts. They have been searching for a pheochromocytoma since then. I have the palpations, have always been dizzy when I get up, difficult time moving after laying in bed, migraines, cannot walk for more than a couple of hours (legs, ankles and feet swell and are extremely painful, takes 2 days to recover), diagnosed with MVP 6 years ago, flushing that never goes away (that's what started the search), insane panic attacks at all hours, wake up sweating, thought I was starting pre-menopause again (I'm only 37), extreme fatigue, so many other things. It escalated after my last pregnancy.
What an insane medical nightmare. Thanks to everyone who has responded :)
Hey, its Kelly from South Florida. I'm the mom who meets with a few other moms in the area. I can tell you there are no good doctors around here. We all however work with DR. Iskowitz in Margate, but we also go to out of state doctors. Iskowitz is good for the Cardio, but he is unfamiliar with the Gastro, pain etc. So he will work with other Dr's. I use Grubb in toledo and the other south Florida people go to I think Dr. Aballah of something like that in Virginia. E-mail me your number and I will see if we could get together.I have a good Gastro Doctor in Miami. Read my post on my daughter whom got better taking a cocktail of drugs. She has been symptom free for almost 1 year. My other 12 year old just developed it though. My other friend says you can call the head of Dyna I think her name is Debbie. Also my daughters both went into hospital homebound schooling while they were symptomatic. It is through the public schools here and was very good.
How is your son doing? My son(14) also is seeing both Dr Chelimsky's. We started seeing them last month and go back in January. They were both very thorough and caring. They spent a lot of time with us.
With my son, they can't yet figure out why he is nauseated every day. He had a gastric emptying test done today, so hopefully that will tell us something.
My son has POTS, autonomic neuropathy, as well as other symptoms. His main complaint is the nausea and abdominal pain. He has no reflex on the right side of his abdomen.
With my son, they can't yet figure out why he is nauseated every day. He had a gastric emptying test done today, so hopefully that will tell us something.
My son has POTS, autonomic neuropathy, as well as other symptoms. His main complaint is the nausea and abdominal pain. He has no reflex on the right side of his abdomen.
Thanks for the information. I also read that Jacksonville doesn't treat children under 16. And Ohio is a long way to travel right now but perhaps one day. I went to dyna kids and there is a doctor about 12 hours away. Dyna kids is a great place, I printed some information from there to give to my son's school. He has an appointment scheduled for next month the the doctor who made the diagnosis in Miami.
Mayo Jacksonville does not have an autonomic lab, unfortunately. We've had others look for treatment there. I am very sick at the moment and can't post more right now but will ASAP. Sorry.
Hi, Jade!
I haven't been on this site in quite a while, and your question was the first I saw when I got on it tonight. I have a son who is now almost 16 with POTS and several other dysautonomic symptoms. He has chronic dizziness, chronic migraine (has had a continuous headache now for 2 years), and chronic nausea. We live in Columbia, SC, and have had some wonderful care here, and this is where we really got the dysautonomia diagnosis. The thing was that no one really knew how to address all the symptoms resulting from this one underlying cause. We have ended up driving to Cleveland, Ohio (about 11 hours for us) to see Dr. Thomas Chelimsky and Dr. Gisela Chelimsky at the Dysautonomia Clinic at Case Western Reserve University Hospitals. They are one of only 12 centers in the United States that does have an Autonomic Lab, and they do specialize in treating children. I would encourage you to also check out www.dynakids.org if you haven't already done that, because you might find a little more information on other doctors nearer to you. You might even try Mayo Clinic in Jacksonville. Check with their Neurology department and talk with someone to see if they have an Autonomic Lab. Although POTS has cardiology symptoms, the disorder is primarily neurological. Best wishes to both you and your son. There are some excellent treatments for POTS, although it can take some trial and error.
I haven't been on this site in quite a while, and your question was the first I saw when I got on it tonight. I have a son who is now almost 16 with POTS and several other dysautonomic symptoms. He has chronic dizziness, chronic migraine (has had a continuous headache now for 2 years), and chronic nausea. We live in Columbia, SC, and have had some wonderful care here, and this is where we really got the dysautonomia diagnosis. The thing was that no one really knew how to address all the symptoms resulting from this one underlying cause. We have ended up driving to Cleveland, Ohio (about 11 hours for us) to see Dr. Thomas Chelimsky and Dr. Gisela Chelimsky at the Dysautonomia Clinic at Case Western Reserve University Hospitals. They are one of only 12 centers in the United States that does have an Autonomic Lab, and they do specialize in treating children. I would encourage you to also check out www.dynakids.org if you haven't already done that, because you might find a little more information on other doctors nearer to you. You might even try Mayo Clinic in Jacksonville. Check with their Neurology department and talk with someone to see if they have an Autonomic Lab. Although POTS has cardiology symptoms, the disorder is primarily neurological. Best wishes to both you and your son. There are some excellent treatments for POTS, although it can take some trial and error.
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