Passing It On......

[bttrflyamby1981]

Hi all,

I'm worried that my 6year old daughter might have POTS. Or something of the like.

She has been complaining of her heart beating fast and she feels sick to her stomach alot. I have been kinda blowing it off for awile now. I guess my way of dealing with the possablity that she could be dealing with this too!

I know, not the best way to handle things. She seems to be up and down, she is still running around and having fun as a kid should, but I'm having that nagging feeling that something is going on with my child.

Just looking for support....thanks for listening,

Amber

[futurehope]

I do not know if this could be passed on or not. I just have a suggestion. Listen to your daughter and take seriously what she is saying to you.

I say this because I spent my entire childhood with a mother that did not take my symptoms seriously. The result was, I would hide what I was feeling because no one believed me or they labelled me a hypochondriac.

I do not want another child to go through what I did.

[Tammy]

I read your post and what came to mind is that you should go with your instincts because usually a mother's instincts are right. No one knows a child like their mother does... I'm learning this with my daughter and looking back, my mom always would tell me to never overdue because I wasn't that energetic and had some undiagnosed illness as a kid but recovered from that, so it never phased me, but a mother knows best (I didn't listen and now here I am:(

I know my mom "didn't feel good" quite often but she never complained about her symptoms so not sure if that's what she had or not, but I think sometime there's possibilities of being more prone to it than other's without family history.

- Tammy

[MightyMouse]

It does seem to run in some families, and we have a few here who have children that have been diagnosed. You should probably have her seen by a doctor who is familiar with ANS disorders.

Nina

[DSM3KIDZ]

Go with your gut. My doctor told me that kids just want to play and have fun so if they sit out or complain about something take it seriously. I followed my gut and possibly saved my son's life.

I hope she is not facing this and I can imagine as a mother how scary the thought of that could be. My daughter is 7 and I pray everyday she doesn't have to go through the crap we all have to.

Dayna

[dawn]

My 24 year old things that he has always had a mild case of POTS. He used to get tummy aches and vomit when he was little, especially in the heat. He has alot of tachycardia now but says it doesn't bother him much, says I'm used to it. I know I always had a high heart rate. When I had my physical for nursing school I remember my EKG heartrate was 130 and they had me see a cardiologist. That was 32 years ago.

I wouldn't worry unless she is really struggling. I fainted my whole life and no one ever panicked so I didn't either.

You will know when she is sick enough to take to the doctor. I wouldn't start a battery of tests unless she really has problems. It's not like there is cure.

Dawn

[Guest dionna]

my only medicine is my mentality on the illness. when she comes to you just give her kind words and try to help her in ways that you may have found to help you. i would take her to the doctor to see if something is going on but like dawn said... there isn't a cure. if she does faint or have problems breathing or something that could hurt her i would definately take her immediately. anything that looks abnormal. i hope that she gets better and i hope she doesn't have a serious problem. and yes most of the kids do just want to play and not be sick so i would take it seriously. and like all the others said, mom's just know.

dionna

[bttrflyamby1981]

Thank you all so much!!!

I'm feeling a little better about everything now. I'll keep my eye on her as I always do. To ease your mind

futurehope, I always take my children at their word. Who am I to judge how anyone is feeling? I know it's been done to me and I wouldn't want to do it to someone else, let alone my own child.

I did take her pulse. When sitting it was 85. Standing was at 110.

She has been complaining about her head hurting and feeling sick. And she was very weak the other morning when she woke up. She has been sleeping longer then normal too. For her sake, I hope she is coming down with a cold.

Thank again,

Amber

[MomtoGiuliana]

Let us know how she is doing. I worry about my 3.5 year old too. Most of the time she is very energetic and normal in behavior, but she has A LOT of tummy aches and this worries me only b/c of my condition and the fact that POTS is in my family. I have discussed this with her doctor and he asked that I keep a journal of her diet, but I find no correlation between diet and the tummy pains. She can go for months with none and then complain again.

I believe that higher heart rates and ranges from sitting to standing are normal for children--e.g., her heartrate that you described may not be considered tachy in a child.

Take care,

Katherine

PS How are YOU doing these days?!

[sally]

Hi,

Go with your feelings, children can have adult illnesses as well. mine had migraines at about the age of 5. plus there are children even babies that can have tummy disorders such as crohns disease. Hopefully it is nothing serious but I would get it checked out before she unknownly considers it normal and stops complaining and just tolerates it as her normal state. good luck and hope she feels better soon.

[bttrflyamby1981]

Thanks MomtoGiuliana and Sally,

She seems to be doing ok, but I'm keeping a very close eye on her. I will tell her doctor or even mine. If they don't know what I'm talking about they may just blow me off. So I will do what I can.

MomtoGiuliana..I haven't been doing well, but I'm making it. Thanks for asking.

Amber

[haromell]

I didn't read through all the posts, so I don't know if this was posted already...sorry if it was. Dysautonomia is a genetic and can be passed on, but that isn't always the case. Also, there is also a viral onset. Most of the people I know have the viral onset. Although, myself, cousin, mom, & aunt have genetic. My mother, cousin, & I either have some sort of syncope or POTS OR both....Which My cousin and I do have both (lucky draw...which is what I tell her ) We all have FMS and CFS. My grandmother has migraines with the rest of us. I'll just stop with that. We have a laundry list.... I always tell them we are a special family. My cousin is 12... I do know your fear...I have 2 boys. My sister has 2 girls and one on the way.

Also go to www.dynakids.org....it's a dysautonomic form for kids and parents. I know they have a lot of info on how dysautonomia and how it affects kids. I haven't checked the main page recently...so they may have put different articles up.

Take care!

[sstephan]

Hi

I am going through this as well with my one and a half year old daughter. We have seen several specialists. My father has an undiagnosed mild case of POTS I am sure of it along with his father. My daughter has periods of blue lips, quivering, somewhat rapid heart rates, etc. Luckly I have a wonderful pediatrician. The debate right now is if it is autonomic related. My daughter is not considered to have familial dysautonmia which can be quite severe and causes developmental delays. However, some doctors feel that POTS can occur in children and some doctors do not. I keep a journal with my daughter's symptoms and her activity level at the time and food consumed. She is doing very well, however, I agree Mom's know best. I surely hope that our children do not have to deal with what we have. I would suffer with this illness day after day just so that she would not have to live her life with this. Hope things are going well for you.

Susan

[Guest Julia59]

Amber---I truly hope your daughter doesn't have this.

I suspected my Son may have it at one time---still not sure he doesn't. He still gets fast heart rates---tachycardia---feels run down/panic attacks, and stomach upset ect. on occasion When he was younger I down played it so he wouldn't be afraid, but I also set up an appointment with the doctor to make sure his heart was OK. I didn't down play it in a mean way. I took him serious, but I had to help him find a way to shake it off. Basically brain wash him that it's not anything serious---and I let myself worry about making sure it really wasn't. He's never passed out. I think the way I handled it payed off. He does very well now when he has any spells----he just get's though them like a champ----and he also knows i'm in his corner. that always helps.

I made them do an echo to make sure the heart structure was OK---no bad valves ect., and an EKG to rule anything else out. He also has ADD like me---well I actually have ADHD---it's not true that it doesn't carry into adulthood---I'm 47. I just reassured him that what was happening wasn't dangerous once we found out his heart was OK. He's 25 now, and doing fine.

Julie :0)

[bttrflyamby1981]

Thanks again!

I do need to get her heart checked out, as well as some other things. Epilepsy runs on her fathers side of the family so I'm worried about the headaches she tells me she is having.

She has had surgery on both her eyes 2x now, she has been hospitalized with UTI when she was 1 week old! And she had scarlet fever 2 years ago. My poor girl!!! My heart just breaks for her!

Thanks again for the support,

Amber