calling mums with older children with heart conditions.

2bmum · Oct 9th, 2009, 19:15 PM

My lo has a thickening of the walls and a problem with both valves not working correctly. He always has cold hands and feet, even in the house with the heating on and I've been told that when he is older he will not beable to do any extreme sports, run around too much ie being on footie teams or do much pe while at school.

Im already worrying about when he wants to go play with friends and gets breathless. I don't want to make him feel like he is different by constantly reminding him to take i easy or to go rest but I don't want him to make himself ill either.

Also do your children have constantly cold hands and feet and does this effect them, how do you cope with it? He has thick socks and mittens on 99% of the time atm but I can't expect him to do that in 15 years time lol

How do you cope with it all? Any advice greatly received.

2bmum · Oct 10th, 2009, 15:05 PM

anyone?

mrso · Oct 10th, 2009, 23:29 PM

I wish that I could offer some advice for you but I really have none.

My mother-in-law was diagnosed with IHSS as a child, which sounds kind of similar to what your son has. We have our children checked by one of the nations best Pediatric Cardiologist to ensure their health/any future problems we might run into.

Have you taken your son to a specialist? They might be able to answer more questions for you.

Sorry I dont have any answers.

2bmum · Oct 11th, 2009, 04:52 AM

Thanks for the reply, he sees the local pediatrician once a month and sees the specialist in Birmingham every 3 months as they can do graphs there which can't be done locally. The answer I got re his hands and feet was, they were;nt sure if it will improve. The answers I've been given have been quite vague so thought I'd ask if anyone else has a child with similar problems

mrso · Oct 11th, 2009, 23:08 PM

I understand your concern!!! Just make sure that your specialist is a good one. I live in the US so I have nobody to recommend. We have to travel 6 hours one way to see our Ped. Cardio doctor.

I would insist on answers from your specialist. You deserve to have as much information as possible. If you are not happy with what they give you then maybe seek out a better physician.

Oct 9th, 2009, 19:15 PM	#1
2bmum Other Active BnB Member Join Date: Apr 2009 Location: Wales Posts: 442	calling mums with older children with heart conditions. My lo has a thickening of the walls and a problem with both valves not working correctly. He always has cold hands and feet, even in the house with the heating on and I've been told that when he is older he will not beable to do any extreme sports, run around too much ie being on footie teams or do much pe while at school. Im already worrying about when he wants to go play with friends and gets breathless. I don't want to make him feel like he is different by constantly reminding him to take i easy or to go rest but I don't want him to make himself ill either. Also do your children have constantly cold hands and feet and does this effect them, how do you cope with it? He has thick socks and mittens on 99% of the time atm but I can't expect him to do that in 15 years time lol How do you cope with it all? Any advice greatly received.

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Oct 10th, 2009, 15:05 PM	#2
2bmum Other Active BnB Member Join Date: Apr 2009 Location: Wales Posts: 442	anyone?

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Oct 10th, 2009, 23:29 PM	#3
mrso Mum (Mom) Chat Happy BnB Member Join Date: Feb 2009 Location: WY Posts: 1,406	I wish that I could offer some advice for you but I really have none. My mother-in-law was diagnosed with IHSS as a child, which sounds kind of similar to what your son has. We have our children checked by one of the nations best Pediatric Cardiologist to ensure their health/any future problems we might run into. Have you taken your son to a specialist? They might be able to answer more questions for you. Sorry I dont have any answers.

Status: Offline

Oct 11th, 2009, 04:52 AM	#4
2bmum Other Active BnB Member Join Date: Apr 2009 Location: Wales Posts: 442	Thanks for the reply, he sees the local pediatrician once a month and sees the specialist in Birmingham every 3 months as they can do graphs there which can't be done locally. The answer I got re his hands and feet was, they were;nt sure if it will improve. The answers I've been given have been quite vague so thought I'd ask if anyone else has a child with similar problems

Status: Offline

Oct 11th, 2009, 23:08 PM	#5
mrso Mum (Mom) Chat Happy BnB Member Join Date: Feb 2009 Location: WY Posts: 1,406	I understand your concern!!! Just make sure that your specialist is a good one. I live in the US so I have nobody to recommend. We have to travel 6 hours one way to see our Ped. Cardio doctor. I would insist on answers from your specialist. You deserve to have as much information as possible. If you are not happy with what they give you then maybe seek out a better physician.

Status: Offline

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