Ongoing low temp

Personal stories of individuals and families affected by Kawasaki disease
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tobysmama
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Ongoing low temp

Post by tobysmama » Fri Jun 05, 2009 9:49 am

My little boy contracted KD late 2006 and was diagnosed jan 2007. During his treatment (2 doses of IVIG and 2 of steriods) he suffered a hyperthermic episode and his body started shutting down. His body temp dropped to 33.2 deg celcius during his 2nd dose of IVIG. When the treatment was ended it came up- back to 40 deg c by the end of the day!(need less to say we needed further treatment)

However, since his recovery he has a constant body temp of 35 deg rather than the normal 36-37.5.

Has anyone else had a similar experience? As we are in Australia there is no large research body and very little is known by our doctors other than what is resourced from journals and publications.

bethroth
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Re: Ongoing low temp

Post by bethroth » Fri Jun 05, 2009 11:49 am

My son was treated on June 6 2002. Since then my sons normal body temp is 97.0 to 97.1. Unless he runs a temp then it will go as high as 105. As a baby and young child (before KD) he was a normal 98.6. No one has been able to tell me why his body temp has changed. They just say "well that is normal for him". Sorry I can't convert the numbers to metric for you. Wish I could be of more help to you but I hope it helps that you are not alone.

Beth

maerev
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Re: Ongoing low temp

Post by maerev » Sun Oct 11, 2009 10:02 pm

Hello,

My sister contracted KD at age 3, she is now 13. She's suffered from multiple chronic issues since KD, one of them being hypothermia. About 2-3 times a year she goes through phases, 2-3 weeks long where her body temperature drops below normal. All she can do then is sleep, 15+ a day until her body temperatures rise again. And then a few days later her temperature will shoot up pass 100... then at least we can use aspirine. This is associated with migraine.

liquidambar
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Re: Ongoing low temp

Post by liquidambar » Mon Oct 12, 2009 8:08 am

I know my daughter and son both after an illness, or running a high fever and are recovering will then become cold as a fish. One time my daughter really felt cold after an illness enough to worry me.

By then I had a great big fat medical book and read in the recovery phase the temperatue of the body runs slightly lower than the normal body temperature.

So that is normal!

I know this is not what you two are saying, but I thought I would tell you about that part of hypothermia. The low temperatures is staying around for maerev' son, and bethroth's sister is two weeks prior to a high temperature, with migraines, I understand. Bethroth is this always been this way? Or is it recent (starting her period is what I was wondering?) Hormones are messed up in this too somehow?

maerev
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Re: Ongoing low temp

Post by maerev » Mon Oct 12, 2009 3:11 pm

Thanks for your comment. As far as I can remember it's always been that way for my sister. Unexplained hypothermia and fever cycles which just come and go.
Many things have gone wrong for her since KD. Similar to the stories of people who are now past childhood she has suffered from an array of issues ranging from rashes, allergies, fatigues, migraines and the temperature issues. One thing that indeed seems to have gone wrong is her hormones. I haven't heard of similar situations, but within weeks of KD my sister started putting on a lot of weight and growing much faster than normal. She went from being a kid with little appetite to being constantly hungry... She was just turning 10 I believe when she got her period, and was fully developed by age 12 (most people think she is 18...).
One might say this has nothing to do with KD as other kids may experience similar patterns (especially if they eat a lot obviously), and that's totally possible. In her case the timing though was quite odd and the change very sudden.
As in most things with the long terms effects of KD it seems hard to make sense of what is, may or may not have been caused by KD...

liquidambar
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Re: Ongoing low temp

Post by liquidambar » Mon Oct 12, 2009 4:31 pm

My daughter did okay with her period for about a year when she started, and then she would not stop! They almost did not get it stopped, it took two years before they finally got the right hormone pill to make her stop spotting. They even gave her a shot, to make her stop for six months. Don't ever let them do that to your sister. I let this quack of a doctor treat her before he suggested a D and C , then I saw the light , fled, and found some excellant doctors. Even she was very pleased, bless her heart. But that shot turned my daughter from a sweet little thing to a person that could not stand to hear my voice. Even when the shot wore off, she did not really return to the personailtiy she had before.
She has been on birth control pills since she has been 13 years old. She too grew over night, but not fat, just really matured.
Always had a nice figure untill she was 23 and then in one year she gained I would guess 100 pounds!!! She is still on the pill, and I think she always will be.
I think it is something connected to hormones and Kawasaki's. Too bad more is not known.

My father-in-law always told me that his temperature ran a little below normal too. That is true, because I took him to many of a doctor's appointment, and the nurses always commented on his temperture being low. He accepted it that for him the lower body temperature was normal for him, but he complained all his life of not feeling well.

GeneBasler
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Re: Ongoing low temp

Post by GeneBasler » Thu Nov 19, 2009 2:57 pm

My (age 4) son's normal well temp has been 97.1-97.4 for as long as we can remember. We are now 36 hours after IVIG treatment and wondering what we should be looking for. He's playing, but not at his normal energy level.

yady610
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Re: Ongoing low temp

Post by yady610 » Tue Nov 24, 2009 7:24 pm

My daughter was just diagnosed and treated for KD on 11/19/09. Luckiliy, her pediatrician diagnosed within 5 days of the fever onset. She underwent the IVIG and aspirin treatment without complications. Since her treatment she has also had low temperature between 34-35.6 degrees. But no further complications. I'm not sure since it's been so recent her temperatures will eventually increase to normal. I'll keep you posted as time progresses. Ari's Mom

LGrove
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Re: Ongoing low temp

Post by LGrove » Wed Jun 03, 2015 3:09 pm

This is very interesting. My 5 year son was diagnosed was kawasaki 3 months ago and has had on/off low body temp (as low as 34.8) ever since but never seems shivery or Ill, just tired.
He was diagnosed with tonsillitis last week while on holiday in Spain. He had the strawberry tongue the day after, slight red eyes and chapped lips, but he wasn't ill enough to worry. I've just noticed his fingers are peeling so I've googled and found out you can have kawasaki twice!
Has anyone had a mild reoccurrence of symptoms months after?
I'm taking him to docs tomorrow, but he seems quite well, just tired.

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