New With Questions About My Teen

[1tiredmama]

Hello, everyone! I've been lurking for awhile, taking it all in. I have an 18 year old son with Asperger's, developmental delays, and PANDAS. After watching my son lose 60lbs in 18 months due to severe nausea, worse in the am, with no answers from 2 pediatric GI's, I finally figured it out myself. I Googled red hands/feet, low bp and temp, and weight loss/nausea. I really had no idea what I would find, but I did it! Two different doctors at The Children's Heart Institute have observed postural tach, hr doubles. Ttt was one of those occasions. Dx has dysautonomia, likely POTS. We have to see Dr. Abdallah for further tests and treatment.

Trying to keep an 18 y/o (with a healthy desire to be independent) who has Asperger's inflexibility, poor reasoning skills, no concept of time, and very poor memory due to dysautonomia on the road to health is daunting. He wants to get better, even thinks he is drinking enough... And, he has been sick his whole life, so he doesn't even perceive/report symptoms. I have a few questions:

* Why more tests? He's had an echo, ekg, holter, and ttt. What else can we expect? The last doctor mentioned bloodwork, beyond the regular ones he always gets. Looking for what?

* How does heat affect you? My son became very pale, slow, and weak from running errands with me in a car with minimally functioning AC. Why does this happen? How cautious should we be?

* Is tachy dangerous? He does not perceive it. Do I need to worry? What, besides standing, can bring it on? Heat?

* Sometimes, I see him pushing so hard to physically keep up with his friends on outings. I know he's not feeling well, but I stay out of it. He needs some normalcy and independence. Am I doing the right thing (particularly in this heat?) Or should I limit him a bit until this condition is under control?

He is 18, but I do have legal guardianship due to mental impairments as a result of his poor health. Thank you for sharing your knowledge and experiences. I admire all of you for putting one foot in front of the other each day, feeling energetic or lousy.

[corina]

Hi tiredmama, welcome to the forum! I don't have all the answers but hopefully others will chime in to help you on your way. I think it's not up to us what you should do or not, what works for one doesn't necessarily need to work for another. Also as your son is 18 it's difficult to tell him what (not) to do. I have an 18 year old as well (who has been fainting over the years for several times) and I've discussed (de)hydration with him. Just for him to keep in mind how important that is. A bottle of fresh water is in his backpack now when he goes out.

Although we are all different it's nice to know you're not alone!

[looneymom]

Welcome to the forum. I also have a son that has POTS. He was 11 when diagnosed and is now 13. Heat is very hard on him and he takes water or Gatorade whenever he leaves the house. My son also has tachycardia and it can happen sitting in recliner, sitting upright or upon standing. He has had some of the testing that you have mentioned. There is other testing that needs to be done to see if he has hyperpots but due to his health condition, this test cannot be ran right now. If doctors are suggesting other test, its because they may want to figure out what type of POTS your son has or if another underlying condition is causing the POTS. If he is able to be active, exercise, and socialize with friends, I would not stand in his way. It's a way of letting him figure out what he can handle. Eventually he will realize the importance of fluids and exercise.

[Christy_D]

My son is also 18 but doesn't socialize since he lost contact with his friends due to being homebound for the last 4 years. Like looneymom said above, I wouldn't stand in his way when it comes to socializing. As for testing, I have let them do all the testing they wanted if it brings answers and helps with the treatment. While my son was diagnosed with POTS in 2009, he wasn't diagnosed with MCAS until 2012 upon my urging for testing. I figure, the more the know the better line of treatment they can follow.

Also, my son has tachycardia and doesn't feel it. His heart rate has been up to 180 and he didn't feel any difference. He is also heat intolerant, which occasionally make him itch and gives him chest pains. It's all part of the condition, he finds cool showers help bring symptoms down if he gets too warm.

[lejones1]

Hi and welcome! I'm sorry that your son and your family is going through this right now, but it sounds like you're finally getting some answers so that's good! My answers to your questions are just based on my own experience, what's right for your son may different, but hopefully they can give you some ideas.

Why more tests? Because POTS is a syndrome, not a disease, meaning that it's really just a set of symptoms without a clear cause. Doctors still don't really understand the mechanisms behind POTS but there are number of things that seem to cause it - viruses, autoimmune disorders, other genetic conditions. Lots of, if not most, people can't find a cause but if you can and it's a manageable condition, that may help guide your son's treatment options. Your willingness to keep searching may also depend on the severity of his symptoms- if they're not too bad and are easily managed, it may not be worth going through the endless doctors appointments, testing, searching, but if it's severely affecting his quality of life you may decide it is. Also you mention that his diagnosis was likely POTS - there are other forms of dysautonomia and until those can be ruled in or out, that would be another reason to keep testing.

Heat is bad! I don't know that it's universal but it's definitely very common for people with dysautonomia to be bothered by heat. If you search around this forum you'll find plenty of posts about it. You can probably find a more scientific explanation elsewhere but basically the body's response to heat is vasodilation, meaning the capillaries on the surface of the body expand and the blood flows there to release heat. So the body has to work a little harder to keep pumping the blood from the surface back to organs - heart, brain, etc. This is a particular problem for people with dysautonomia because our bodies already struggle to get enough blood our organs. So the reason your son feels like that is because his body is overworking and he's still not getting enough blood to his brain. I don't go outside much but when I do I make sure I have a cold water bottle. You could also use wet cloths or ice packs. I think you can get cooling vests to wear as well but I don't know the details.

Whether your son's tachy is dangerous is definitely a question for his cardiologist because everyone is different - if he has another heart condition that's something to be aware of. If he's having tachycardia not relieved by laying down, that's something to mention to the doctor. But here's what mine told me: tachycardia in the absence of an arrhythmia isn't really dangerous, but it also depends on how high, how long, etc. Like your son, I don't really notice it...I may get tired and lightheaded but I rarely feel palpitations. I wear a HR monitor a lot and have occasionally looked down and noticed a HR of 200 or 215 but it drops as soon as I sit down. It was a little shocking at first and still frightens my mom, but now that I know that, for me, it's not dangerous, it's not something I worry about. Other things that can bring tachy on...for me, caffeine and alcohol. I think some people have actually said a little caffeine helps them but if he's a coffee or soda drinker, just ask him to watch how they affect him until he's sure. And I know he's underage but as a 23 year old I also know alcohol laws aren't always strictly followed...if you think there's a chance he may drink alcohol, or just as something to keep in mind in the coming years, you may want to mention to him that alcohol can be bad for dysautonomia. Like heat, alcohol causes vasodilation and also dehydration. I've tried it a couple of times and even a little bit makes me so miserable.

And I agree with the above posters, maybe don't try to limit his socializing and activity. Dysautonomia is awful thing to deal with at any age, but when we're young the social aspect is especially frustrating. We're supposed to be "invincible" and be able to run around and have fun and not really worry about getting tired or not taking care of ourselves or whatever, and it's difficult to accept restrictions. He will learn eventually learn his limits, even if takes a little pushing and crashing to find them.

Good luck!

[1tiredmama]

Thank you all for the warm welcome and the information I was seeking. I learned a few things! Very much appreciated!