Just how bad is it?

[Jean123]

I read the discussion board weekly to keep up with everyone however, I never have time to respond. My son, who is 13, has been diagnosed with POTS. It seems to me like everyone has spells of tachy but doesn't feel it every single time you sit or stand. I realize that some have it worse than others. I see my son struggling with it every minute of the day. We finally got a tilt wheelchair where I can take him out of the house and STILL his heart rate goes up to over 115 while tilted. His therpist says it looks like he can only handle being at a 20 degree angle without his heart racing and his blood pressure dropping.

We have been going through this since the end of December. I'm afraid for him. He tries to be a hermit by staying in his room however, I won't let him. This has been the most horrific experience of my life. We leave tomorrow for Dallas to see a specialist there. I'm hoping for better days ahead. This illness has taken a toll on my family and how we communicate with each other. I miss my son's conversations in the kitchen and how he was always there to lend a helping hand. He is a great kid that I see drifting away from us.

Sorry to be so down. We are all just extremely concerned and frustrated right now. I know things will get better.

If you have any suggesstions on how to get him involved with peers his own age please let me know. We live in the suburbs of Houston Texas and I want him to know that he is not alone. I have already checked out the 'kid friendly' POTS websites.

[JLB]

Gosh, this must be so hard. I'm so sorry.

There will be things the doctors can do for him. Is he taking any meds already, doing things lifestyle-wise (fluid-loading, etc.) to ease the symptoms?

[Ernie]

Maybe you could get him to join dynakids. There are many of them like him on that forum.

Ernie

[MomtoGiuliana]

I agree that a kid's on-line forum may help him feel less isolated, and also connect with other kids experiencing the same challenges.

It is very likely to get better for him with treatment.

Katherine

[PattiL]

Lynna,

I'm so sorry to hear about your son. It is very frustrating for us as parents to watch this happen to our children and for us to feel so helpless that we can't 'make it all better'. Hopefully you will find some answers in Dallas. Does he have any brothers or sisters near his age? My boys were a tremendous help when Chrissy was at her worst. Even just telling her the silly things that went on in the lunchroom--anything to make her laugh.

My daughter was diagnosed with POTS 3 1/2 yrs. ago. I was a terrible time until we found the appropriate meds/Drs. She was unable to walk unassisted at the time and I literally went into the shower with her for her to take a shower. We also had to put a make -shift bedroom for her on our main level--it was much too difficult for her to walk up the stairs, even with help. She also missed her entire sophomore year of high school and was home tutored. She still has her bad days but, she is now finishing her associates degree (she's 19), drives and has a part-time job.

Lots of prayers to you. If you need to talk, e-mail me please. We all know what you're going through.

Patti

[morgan617]

My son has been ill since he was 11. He has a small base of friends that just know there are things he can't do. Does your son have friends you can sit down with and explain in simple terms what's going on, so they can just come over and see him, play video games or something? Most of my sons friends come here and they do the driving if they go anywhere. They have stayed very loyal to him. Hopefully your son will have some of the same kinds of friends. It seems when you can tell them, they aren't frightened, or afraid they'll get it or whatever makes them hang back. Good luck. Nothing is worse than having a chronically ill child, I sure know that. morgan

[sunisshining]

Hi,

I so sorry that your son and your family has to go through this. As frustrated as your family is with how he has changed, i bet he is probably just as frustrated or more frustrated..maybe? i've been in a position where i've been so sick that i didn't have the energy to get out of bed, but i didn't want to go be around my family in such a sick state because i didn't want them to see me that way cause i didn't want them to get upset or mad or frustrated. Could this be a possibility for him? I know it was/has been hard for me as a teenaged girl, but i can't imagine how hard it would be for a boy, just because i think even more is expected of boys socially. they're expected to tough stuff out more, etc, etc.

Maybe if you let him know (you probably already have) in an indirect way that you know he can't do as much but you still like his company. But don't tell him directly because then he will get more frustrated with how he can't do as much stuff. if your in his room with him, just tell him how you love being around him or you love his company..but not in a way that makes him feel guilty for being sick...uuuugggh..this is so hard. i'm trying to be helpful thinking back on my bad days...but i was sick and felt guilty, which i'm sure is how he's feeling. so it's like walking on ice or however that saying goes.

but i know that a biggie for me is that when i was around other people, even my family, i felt like if i wasn't acting better than i felt, i was being a failure or upsetting them...even tho this was so not true. but i think this is probably what he's feeling. and having to act well is really draining when u r sick. so that's probably why he stays in his room. also, there's probably stuff in his room that comforts him and he knows it well and he feels like strangers who don't know what's going on with him are less likely to come in and he'll not have to act like he feels better than he is.

i hope this makes sense. but it's not that he doesn't want to have fun or doesn't want to be around u. it's a frustrating situation for everyone. i know the times when i was really sick, everyone wanted one thing (for me to be like my healthy self, better) but because everyone was so scared, frustrated, upset....it led to tension and people feeling like other people desired more from each other (my parents felt guilty for not being able to do more and then would say "we're trying our hardest...") and i would get guilty for not being better and be like "i'm trying my hardest" and then i know the rest of my family disagreed/argued about the best way to treat me. my sister lost a patch of hair in the process...it's very stressful on the whole family. and there's not really a quick fix...maybe just knowing that everyone is trying his/her hardest and that no one should be blamed. i doubt your son wants to be a hermit and i doubt you want to have to be in a position of trying to get him out of his room, etc. Everyone misses the old him.

i would say to set up an area by the kitchen with some of his stuff where he can rest but i don't know if this will work. i kind of know what u mean because before i got really sick, i would cook and help in the kitchen with my mom ALL the time. But we've grown as a family and now my parents are the one's saying "no, don't do that, you need to save energy. go rest." and i'm the one saying, "i feel yucky anyway so i may as well try to do this." obviously, tho, right now i'm not as sick as your son. i thin kyou'll all, especially your son, just have to lower your expectations, as hard as it is..because u think that lowering them is like surrendering. but it's not, it makes it more tolerable.

i'll think about this more and post more or send u a message if i think of anything else.

hope it helps to see if from the other perspective? or bird's eye view maybe?

hugs!

and good luck with the specialists...but your family needs to stay strong because doctors come and go, but love is one of the best medicines - you have it even when doctors don't help.

love u lots and good luck!

also..is your son a member of dyna? (dynakids.org) i just filled out the registration form..it looks really nice and helpful and supportive!

good luck.

i'm keeping you and your family in my prayers,

sun