Daughter with symptoms

[Largehearted Moderator Find all posts View Profile Close Largehearted]

Hi everyone. It has been a while since I posted regularly. I had to have my gall bladder removed and then the next week I was out of town.

Anyway, for the last month my 8 year old daughter has been complaining of feeling dizzy and at times she says her legs are very tired. We do not know for sure what is going on, but our family Dr., knowing I have HCM, has set us up for an echo with a pediatric cardiologist from Hershey Medical Center. It is scary to be sure, but we have to keep moving forward to see what is going on.

Has anyone else had small children with similar symptoms? I know the symptoms can be all over the map, but I thought I would ask anyway.

We go in on Thursday and I will keep you posted.

Peace,
Leon

[Sarah Brave Heart Find all posts View Profile Close Sarah]

Re: Daughter with symptoms

Dear Leon,

You beat me to the punch. (see other post)

I hope your daughter is clear and I wish you all the best.

take care,

s

[Danielaeh Contributor Find all posts View Profile Close Danielaeh]

Re: Daughter with symptoms

Hi!

How is your daughter?
It is important to ask and check every thing you feel you want or need- so will be relax and enjoy life.
I know some patients that had strange feelings in the legs.
Also my son had some.
My doctor asked me to write when it happens - after activity? after eating? after sleeping? so he will be able to give as an answer. There are some children that will have this feelings in the legs while growing and not always there is a connection to HCM.

[Largehearted Moderator Find all posts View Profile Close Largehearted]

Re: Daughter with symptoms

We just found out this week that our daughter shows no signs of HCM! Whew! What a relief. Her dizzyness may be related to needing more liquids and a slowed BP response. We are working on having her drink lots of water and taking salt tablets. Hopefully that will make a difference soon. Thanks for asking.
Peace,
Leon

[Sarah Brave Heart Find all posts View Profile Close Sarah]

Re: Daughter with symptoms

Yeah!!! Good news. Keep us posted!!



S

[Danielaeh Contributor Find all posts View Profile Close Danielaeh]

Re: Daughter with symptoms

Thank you for sharing !
GREAT NEWS!

[hismom Junior Contributor Find all posts View Profile Close hismom]

Re: Daughter with symptoms

Hi Guys! Haven't posted in awhile. My son has HCM and he often complains after a busy day of playing that his legs hurt. He has woken up at night before in alot of pain if he played to vigorously and wouldn't drink the water like he is supposed too. It has come down too, if he wants to go play then he MUST drink his water reguarly throughout the time he is outside with his friends. He's good about letting me know when he isn't feeling well but the nightime leg pain is a constant if we aren't careful.Generally after a day of hard play I give him some motrin with his reg. meds to help ease the muscle pain. From my understanding this comes from him having blockage over the aortic valve that carries the blood throughout the body. Essentially , it just doesn't flow as well as it should so the muscles don't get ALL the oxygen they need. Just like in exercising when you are told to breathe correctly. If you don't get enough oxygen your body releases lactic acid which is what causes the muscles soreness. So, anywho~ just wanted to let you know you are not alone in that experience. Take care and hope everyone is well.

[Danielaeh Contributor Find all posts View Profile Close Danielaeh]

Re: Daughter with symptoms

Hi!

Sometimes a massage helps, starting from the foot.
My son likes it a lot!!
I prefer the massage instead of giving more meds. Ask a specialist hoo is the best way to do it to children.
Have you talk with your cardiologist about the pains?
They are not always a cause of HCM/HOCM.

[Alison Whybro Atria Find all posts View Profile Close Alison Whybro]

Re: Daughter with symptoms

Dear all,
It has been interesting reading about children having 'pains' in their legs. My 6 year old daughter (with HCM) complained of very bad pains in her legs a couple of weeks ago. It was unusual for her to complain like this so I took her to our GP. The GP wasn't sure what caused the pains (said it could be growing pains, didn't think it was 'heart' related). It happened for 2 to 3 days in a row but then stopped. Anna hasn't complained since.
Thanks to everyone who shares on this website, it is such a help to hear other people's stories and gain information. My daughter Anna recently had a 24hour halter monitor test - results came back all clear (no arthymias during that period). It felt good to receive some positve news!
Have a great week everyone,
Alison
Auckland, New Zealand

[Toogoofy317 Member of 1000 Post Club! Find all posts View Profile Close Toogoofy317]

Re: Daughter with symptoms

Regarding the leg pains. You might want to make sure the potassium levels are normal. Not long ago I was experiencing severe leg cramps I went to my Dr. about it and she checked my potassium levels and found them low. She said cramping was on of the first signs of deficiency and to be careful because it could cause arrythmias as well. My deficiency was due to an unbalance of lasix and potassium so I now take supplements. Hope this helps!

Mary

[hismom Junior Contributor Find all posts View Profile Close hismom]

Re: Daughter with symptoms

The potassium issue is interesting. Kollin takes a daily multivitamin and eats bananas as well as your regular monkey would so I do not think that is his specific issue but I do think that could be something for others to check on. I have to 2nd the opinion that this site is so great for sharing information. Everyone remember to check with your doctor before making any changes in your routine.

And i can't remember who mentioned the massage but we do that as well. Even at 4 he likes the Johnson's Baby lotion w/lavendar. So I use that and start at his "piggie toes" and work up. He giggles and relaxes all at once. Take care everybody!!!