why doesnt he ever get any relief?

[mich333]

My 15 year old son who has POTS hasnt felt well for over a year.He has been suffering from this illness for almost 3 years but he use to get some good days. It seems most people with this illness get some relief and then crash. No matter what meds we try, he never feels well. Nothing has worked.

[AireScottie]

I've got a couple ideas.  Have you tried taking him off the beta-blocker and Lexapro one at a time?  Some of us get much worse on beta-blockers and antidepressants.  I'm on neither, because they can both drop BP, and in my case dropped it drastically.  Second, there are a number of us who get help from taking Mestinon, so you might ask his doctors if he can try that.  Has he tried wearing the ugly compression stockings?  I can't imagine being a teen boy and having to do that, but they do make a difference.

Lastly, have his doctors considered looking for an underlying cause?  I no longer have "good days" either, but it's because there was an underlying cause destroying the nerves, which none of the POTS meds treat.  Did he get mono or anything like that before the POTS started?  Is there ANY chance he has an autoimmune disease?  Any tick bites, diabetes, or B12 deficiency?  Has he been to a Neurologist for evaluation?  Has he had an EMG?  Or did they give you the usual line about how there's no way to determine a cause?  Here's a MedHelp info page so you can see some of the possible causes:
http://www.medhelp.org/medical-information/show/74

I hope you get some answers!

[CHRISTYDRAKE]

I can totally relate.  My son is 14(15 in February), and has been sick daily since last February.  He has not gone to school since then.    Prior to February, it was sick for a week well for 3-7 days, then repeat.  At least there were non-sick days.  Some of his days now, he becomes 'functional' earlier in the day then other days are not until evenings.  We call those 'functional earlier days' the good days.

We were in Cleveland the week before last, where he was diagnosed with POTS and autonomic neuropathy.  His abdominal pain seems to be getting better, but we are still dealing with nausea.

To add insult to all of this injury, our govenor just cut from the budget the funding for the On-line classes he is taking.  We will now have to pay for these classes @ $325 per class, per semester-it adds up to a hefty fee.  

[karinosa]

My heart goes out to both of you as I don't know what I would do if it was my kids dealing with what I have to deal with, many times when I have felt very sick I just keep telling myself better me than them, so I definately feel for the two of you.

Now in my case it all started after a virus and I only had to deal with this for one year, I'm on my second year and it is much better, I don't know if it is because it started with a virus and it left my body now or it was all the vitamins that I got put on by a Naturopath.

I was also on a beta blocker and it didn't help, but the vitamin therapy has definately been what worked, I stopped them this last summer and I relapsed very quickly.

What I was told by the Cardiologist when I told her that the vitamins seem to be what was doing the difference she agreed, she said that it would make sense, I have a very fast heart rate and she said that since my heart is working so hard even if I'm just sitting it is making all the other organs work harder than they need to therefore deplenishing my body of many nutrients, and by pumping my body with all these extra vitamins I'm making up for what I'm loosing.

I had a full blood work done about a month ago as I wanted to see that I was not overdosing myself with all these vitamins and I'm in the mid ranges for all so I know that my body is using quite a bit of it but with taking all these pills it is able to maintain the levels to a good range and I truly believe that - that is what helped me.

I would suggest a Naturopath visit and see what vitamins they would put your boys to take, they would know based on their symptoms what is that their bodies are needing.

I hope that soon they will be able to start enjoying life again, it is not fare that kids have to go thru any of this or for parents to have to witness and feel like they can't just take it away!

Hugs,

Karin

[Heiferly]

I see you are in FL, and unfortunately, the closest major dysautonomia clinic to you--Vanderbilt--does not see patients under 18.  If you ever do reach a point where you want to pursue full autonomic testing, you would likely have to fly all the way to the Midwest.  As others have had recent success with pediatric autonomic specialists in Cleveland, and Cleveland is one of the handful (you can literally count them on one hand) of places in the country that has the equipment to do full batteries of autonomic testing, that would be my recommendation.  It is possible that this more specialized testing could help shed more light on the specifics of your son's case and perhaps indicate a specific cause or point to treatment approaches more targeted to him specifically.  It also sometimes happens that the testing is a disappointment, so it's a decision everyone has to weigh in light of travel issues, insurance, etc.  

Here is contact information on the major Dysautonomia hospitals, but as I said, not all of them see children.  I would assume Christydrake might be able to give you names of specific doctors they saw in Cleveland if you're interested in going that route.  

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196