CP and temperature regulation issues?

[CrazyOldCatLady]

DS may or may not have CP. Since he was born we've noticed that his temperature starts to rise if he's too warm. It's happened 3 or 4 times in hot hospital waiting rooms, once last summer when he was outdoors on a very warm day and I think it's happening again now. Obviously he's had temps at other times as well but what makes these instances stand out is that there are no other symptoms really other than sleepiness.

I've half wondered if it's possible that this could be a result of brain damage - that his temperature regulation is just not right. I've asked his paed and our GP and they both looked at me as if I had ten heads, but I've been doing a bit of googling here (while I wait for the creche to ring me back with an update!) and it actually does seem to be a possible effect of CP.

Has anyone any firsthand knowledge of this? Or does anyone just want to tell me that I'm imagining things? Because that would be good...

I could tell you that you are imagining things, but sadly, I'd be lying.

Bee has a very similar problem - to the point that she wears a cooling vest from mid-May until September when she is outside, and it is written into her medical safety plan that she cannot go outside at school if the temperature is above 22*C.

If you want a bit more concrete information, google "autonomic dysfunction"

DD has problems with temperature control but she does not have CP - she has another rare condition, but she is not mobile.
We have to take great care with her in hot weather, as once she gets hot it is difficult for her to cool down, and we have to resort to fans as just removing clothing may not be enough. She is also epileptic and overheating can cause a seizure.

Equally, we have to make sure she does not get cold as she finds it difficult to raise her body temperature too. On occasions when she has been 'knocked out' by medication to stop a seizure or had a General anaesthetic, we have had to take extra precautions to keep her warm as she goes hypothermic and in hospital have often had to borrow a hot air blower with a special blanket to get her temperature back to normal.

I do not know the reason for this problem - we just always say that DD has a broken thermostat, and make sure that anyone who cares for her is aware of the problem and watches out for it. We are not obsessed with taking her temperature though, we just use the back of our hands against the top of her chest as a guide - as she often has cold hands even if her body temp is ok.

Sorry... I misread your initial post.

Are you basing the "may or may not have CP" on the "overheats easily"? If so, you are WAY off.

Some people are more sensitive to temperature than others. In BigBlueBus's DD's case, as in Bee's case, the temperature regulation is only one part of much larger challenges. However, if the temp issue is why you are suggesting CP, I can honestly understand why you are being looked at like you have ten heads.

When it is an effect of CP, it is almost always present in moderate to severe CP. Not in "may or may not have" CP. Is the potention CP the opinion of the GP? Does your DS have documented brain damage (seen on imaging)? If not, what makes you feel he has sustained brain damage in the first place?

I just may be in the wrong head space, but on second reading of your OP, getting too warm 3 or 4 times, and once when outside on a really hot day is NOT a medical issue, it is an overheated child. Please, don't look for problems - because you WILL find them...

Since you seem to be interested in learning about these things, forget autonomic dysfunction, google "heat illness"

Thanks, folks.

Bee, 22 degrees seems to be about the point where he starts to struggle. He doesn't have problems with cold though, he actually seems happier at low temperatures.

The creche have him Calpol this afternoon and his temperature came down fairly fast. Is that consistent with this, or am I barking up the wrong tree?

Sorry, BeeMom, I missed your third post.

There were problems during DS's birth. His heart was stopped for up to 20 minutes before he was born. It took them 12 minutes to resuscitate him. He had seizures constantly for the first 24 hours and was in a very bad way for the first two weeks, at which stage we were told that he had sustained very severe brain damage, because he displayed none of the normal newborn reflexes, had severe hypotonia and wouldn't feed at all. An MRI at 2 weeks did show 'shadows consistent with a traumatic birth', we were told, but the paed told us that she doesn't have much faith in MRI as a diagnostic tool in cases like this because it's too blunt an instrument.

He made what they called a 'miraculous' recovery over the next 4 days or so and gave every appearance of being a normal newborn after that, aside from very severe reflux, but we've been told that they can't rule out CP conclusively till he's 4 or 5.

Am I allowed to ask questions without being labelled as neurotic now, please?

No, I apologise for my bluntness. I have been dragged along on some wild rides with drip feeding, and frankly can be a bit suspicious...

That sounds like a very traumatic birth - I am sure it still haunts you.

MRI at that young can be unreliable - for sure. If he were to have another one now, you might have a totally different image, either pristine, or wide damage that he seems to have managed to overcome. Interestingly enough... you mention he had horrendous reflux... that can be autonomic, too.

If it is autonomic (at least in our case) Calpol doesn't generally help - that is often the easiest way to tell if Bee is having an autonomic fever or if there is another source. However, I know of other families that it does help for.

With regard to the CP, the longer he goes without showing overt signs (ataxia, spasticity) the better chance he has to have avoided it, but it is important to remember that he could have some very subtle damage that is affecting temperature regulation or other autonomic functions without having CP. By its definition, CP is a movement disorder, so if it isn't affecting motor function, it isn't defined as CP.

From a heat standpoint, there isn't anything we can do from a "medical" perspective. As she gets older, Bee's heat/cold tolerance is getting worse, so we are very mindful of the temperature/humidity outside. She has her cooling vest for the summer, and extra layers (including a wheelchair blanket) in the winter. Like BBB, we don't use the thermometer much, we check more by touch. I generally check with the back of my wrist against her back - her peripheral circulation is poor, so hands and feet are cold (in fact, for Bee, warm hands are almost always a good hint that she will be hospitalised soon - as they only happen when she is developing a blood infection).

Prevention and limiting heat exposure (and making sure that his carers are on the same page) is the key...

ds has severe CP and struggles with body temperature. He also doesnt usually get an 'illness temperature'. Both are linked with severe CP and brain damage.

I have this, not from CP but other reasons. Am currently sitting with an ice packs tied around my neck, hot weather is not my friend. Bought the ice packs from a CP specialist

Autonomic dysfunction is the name

Apology totally accepted, BeeMom. I can see that I came across as totally overreacting and silly. And I'd say you must find it terribly frustrating to hear someone making such apparently groundless assumptions, given how much you must be going through.

To be honest it's been on my mind even more than usual lately. His paed had been talking about discharging him next month (I'm not sure how that ties in with not being able to tell till he's 5 - plus we were supposed to get another MRI when he turned 1 and that never materialised), so we'd been feeling cautiously optimistic. But he started walking last week and he seems to be leading with his right foot in an odd way; plus, when he was crawling, he never really got past the one-knee-and-one-foot crawl. So I'm wondering if the asymmetry is meaningful, and I'm getting scared. None of the things I'm worrying about seem major but together they're enough to freak me out badly.

I'd suggest that it might be wise to ask for a PT assessment before he is discharged from Paed. Chances are the paed feels that the GP can re-refer if the needs seems apparent.

Try not to get too freaked out - now that he is walking, it'd be really good to have a PT look at him - just to see if there is any strong evidence of asymmetry or spasticity. If there is, you'll be given exercises to do with him, PT at this age is primarily a way of working specific movements into play.

One of the things that you can do to keep him cool outside is to get a misting fan (this one is overpriced, but you get the idea). They are a fun way to cool down and can make the difference between hiding inside on a warm day and going out to have fun. Of course, a wide brimmed, light coloured hat is a must, as well...

He attended a physio from birth but she discharged him at 11 months. I might give her a ring and ask her to see him once more now that he's on the move.

He's never outside without his sunhat, just like me and his sister! We all burn very easily. The mist fan looks good, I'll definitely give something like that a try - he's clearly not someone who does well in heat, whatever the cause.

The poor little sausage is up in bed for the last 45 minutes. He was awake for most of last night, only slept for half an hour in creche today, and is grey and silent with exhaustion (silence really isn't his usual style!) - but DH just stuck his head in the door and DS was lying awake looking at him.

I definitely think one more look would be a good idea now that he is walking - she could be able to tell you of his unusual gait is a developmental thing or something that might cause him a challenge down the road...

We concentrate our outside play in the morning and evening during the summer, still gives Bee her time outside, but reduces the "risk" of overheating.