Question for those with children who have hypotonia

[Wild Lupine]

My son has hypotonia. No one really knows why, he hasn't been diagnosed with a genetic or metabolic condition.

I've noticed he cannot stand the cold. Even bundled he is miserable outside when the temperature drops below 50 or so. I'm wondering if this is related to his low tone, that there isn't enough activity in his muscles to generate heat. I've never seen him shivering.

I'm not really looking forward to an entire winter indoors; if he's just uncomfortable I'd like to find  way to get him used to the cold. But if he's really dangerously unable to generate adequate body heat, then I guess I need to be very careful about outdoor activities, and possibly swimming, too.

Have any of you noticed this in your children? Do you need to make extra effort to keep your kids warm?

[sbgrace]

Hmmm...I'm mildly hypotonic and so is my son and both of us are pretty cold intolerant. I always thought it was because of low body fat if anything. If his body temperature is dropping/he isn't regulating body temperature you've got a serious issue of course but that would make me want to investigate metabolics more and I don't think it's likely what you're describing anyway? He just doesn't like cold and is easily cold, right?

What we do in the winter is layer including soft wool long underwear (top and bottoms), wool socks, wool gloves, hat, scarf, layers, layers, layers. I did watch my son and if he needed to we went inside. I'm not sure what's going on with your kiddo so I don't feel like my advice is helpful. But we still go outside in the winter. I've got to admit, though, that I hate it because I'm miserable when cold.

[Wild Lupine]

I'm not sure if his body temperature is dropping, or if he's just uncomfortable. But he is noticeably more uncomfortable than anyone else; all the neighborhood kids will be playing, even the young ones who have similar mobility as him, and he'll be crying to go inside. I'll try some more layers today and see if that helps. Looking back to last summer, I remember he didn't like being in deep water, even with me holding him, but was OK splashing around in knee deep water.

My 4 y.o. loves being outside and isn't bothered by even the coldest temperatures, so it'd be really tough on us if he needs to limit his time outside. We haven't been able to manage more than 20 minutes in the last few weeks, and it's going to get much colder soon.

No one who works with him thinks he needs metabolic testing, but we've been so focused on his feeding issues that his other concerns have taken a back seat lately.

[hadleys_mom]

Could it be an iron deficiency? My DS had a similar problem last winter and most of this summer until we realized his iron was low. With a supplement, he tolerated the cold better and slept through the night!  DD, who has hypotonia and is under weight, loves the cold and we struggle to keep her in warm clothes in the winter. 

[carrotsprout]

Try checking his temperature before you go outside and then go back inside and check his temperature again.  It's hard to get a good reading outside. 

Yes, we have issues with this.  I just monitor my daughter's temperature.  Everyone's guideline is different, but for us, if all else is well I start getting nervous when she drops below 97.   For several years I just guessed and observed.  I like the temperature method better because it is a lot easier to get 96.9 back up than it is to get 96.3 back up.  It's too difficult to gauge such a small difference on observation alone.

To get temps back up, try feeding him again. 

Bundling is great, but try to really focus on the layers even more than the bundling.  That way, he can still move well in spite of his low tone.  When you add bundling to a body that already has to work extra hard it can be hard to move well.  After that point, you have a cycle going.

[Wild Lupine]

Originally Posted by hadleys_mom 

Could it be an iron deficiency? My DS had a similar problem last winter and most of this summer until we realized his iron was low. With a supplement, he tolerated the cold better and slept through the night!  DD, who has hypotonia and is under weight, loves the cold and we struggle to keep her in warm clothes in the winter. 

It could be. He was slightly anemic and we've been giving him iron supplements for a few weeks. Maybe the supplements aren't enough.
 

Originally Posted by carrotsprout 

Try checking his temperature before you go outside and then go back inside and check his temperature again.  It's hard to get a good reading outside. 

Yes, we have issues with this.  I just monitor my daughter's temperature.  Everyone's guideline is different, but for us, if all else is well I start getting nervous when she drops below 97.   For several years I just guessed and observed.  I like the temperature method better because it is a lot easier to get 96.9 back up than it is to get 96.3 back up.  It's too difficult to gauge such a small difference on observation alone.

To get temps back up, try feeding him again. 

Bundling is great, but try to really focus on the layers even more than the bundling.  That way, he can still move well in spite of his low tone.  When you add bundling to a body that already has to work extra hard it can be hard to move well.  After that point, you have a cycle going.

I'll try the temperature thing. It would be good to have some hard data to give to his doctor if I need to. We live pretty far north so just saying, 'he gets cold in the winter,' doesn't sound like a very unusual complaint until you've either seen how miserable he is or have a number to go along with it.

[KCMichigan]

My DD has hypotonia (had PT for 2 yrs) and has a CP dx.

She is HEAT intolerant and cold indifferent.

She can not sense when she is cold and will run around with little on in the winter.....but if the temp goes above 70 she is sweating and red faced. She is average weight/body fat.

She seems to use SO MUCH more energy to do things that she stays warmer--she fatigue quickly and is physically less active than most kids her age, but she is fully mobile now (at age 5).

Her twin hates being  cold (as do I). I think it has to do w/ body chemistry a lot as well. DH and aforementioned DD run 'hot'. Myself and her twin run 'cold'.

[carrotsprout]

that is such a great idea!  you inspired me.  i never thought of taking the list to the doctor.

Quote:

I'll try the temperature thing. It would be good to have some hard data to give to his doctor if I need to. We live pretty far north so just saying, 'he gets cold in the winter,' doesn't sound like a very unusual complaint until you've either seen how miserable he is or have a number to go along with it.