I Am Worried My Son Has Dysautonomia

[sarct]

Nothing specific has happened, but there are some things that have me wondering. He is 5 years old, and has begun kindergarten. Every morning he has to line up at the door and wait for the bell to ring. He can not stand still in the line. Because I tell him he must stand still to not bump his friends he now sits on the flower bed border thing and jumps up when the bell rings. He over heats when we are in a line or standing or walking. I am currently pregnant and I worry that I have passed my condition onto my child, and now I worry about the child inside me too. Andrew is very well behaved. It is like he physically can't stand still when need be.

Does anyone have advice on what I should do? I don't want to run a bunch of tests on him if it isn't necessary. It is just a feeling I get. I was 8 when my symptoms started. He reminds me of me when I was young and going through things very similar. He isn't misbehaving when he is moving. He sways, twists his body, or goes from foot to foot. Not in a add way.

[EarthMother]

I was just out of college was first diagnosed with "tachycardia on mild excertiom" (yeah like standing!). So I also probably had POTS at a young age. As a mother of three including two small frame very thin girls, I also see signs of POTS in them as well. My youngest (12) sits with her legs all crossed up underneath her at her desk. No doubt she instinctively compensates for blood pooling. She also struggles with heat especially in PE.

I have an accurate wrist blood cuff that I use to gauge my sitting/standing HR and BP. It's normal for my kids to see me use it and not alarming when I have on occasion tested them.

For me,as long as they remain active, healthy and happy kids -- I don't worry. I moved them from their pediatrician to my Primary Physician who treats my POTS, years ago. And I trust if there comes a time to look further into my kids wellness that he'll let me know.

Good luck with your healing journey and that of your cherub and cherub-2-b.

~EM

[Ernie]

Hi,

You can have him tested or be careful about the triggers and tell him to avoid them as much as possible.

[MomtoGiuliana]

I worry about my 5-yr old too. She is thin-framed too. She craves fluids--wants to drink a lot--and sometimes seems to get uncomfortable if she hasn't had something to drink for awhile. She also sometimes will lie down in the middle of doing something--although she won't lie down for long and is just as active as any other child her age. Because she has not seemed at all disabled it doesn't seem to make sense to me to have her tested or to even mention my thoughts to her pediatrician. I do make sure to keep (us both) hydrated and make sure she gets enough rest. Since one of my sisters has POTS I am sure what I have is likely to have a genetic component.

[jump]

If it's not interfering with your son's daily life too much, you could just wait and mention it to his pediatrician at your next appointment. Perhaps the pediatrician could check his pulse lying down and standing (not a TTT, just a quite pulse-check) which wouldn't be a scary test but might give you a little more information.

[sarct]

Thanks for the replys. I am glad you mentioned the drinking thing. My son drinks quite a bit of water, and he always asks for very cold water with ice. He will also be engaged in an activity and then out of nowhere he will just lay down, and say he is bored. After a few moments he is back and playing again. I think I will have his ped do a laying to standing test on him. He thinks it is fun to go to his well check ups and get all the tests. He is not scared of that at all. His doctor did mention to me that he has a large lung capacity. She spent a lot of time listening to him breath from his back, because she was impressed with how large his capacity is. He liked that.