Fevers seem like every 14 days
AnonymousApril 11, 2007 at 8:03 pm
Our almost 3 year old has a fever tonight (99.1, which for him is a fever) and was 101 last night. He did not have one in the daytime hours.
I counted on the calendar and discovered his last fever was 14 days ago and the one prior was 14 days prior to that. I wrote the dr. and told him about the 14 day thing.
Although 100.5 is considered a fever in the hospital, Dell starts getting very weak when the temp. is in the 99 range. Of course, our pediatrician does not agree with that but he’s not at my home seeing him.
Our neurologist agrees with my husband and I that the fevers have something to do with his disease, I guess it’s actually the immune system. The neurologist that we consulted with at Johns Hopkins does not agree it has to do with cidp but there is not way it does not.
Any input would be appreciated.
April 11, 2007 at 8:44 pm
Kevin has a fever tonight as well, he did not go to school either, he had a headache. We are set to have another ivig April 27th (42 days). There are no other symptoms, he stregnth is great, still is able to walk on his heels, I am so confused! Is it a cold, is it cidp? I hope some day we can figure these things out!!!!!! Dawn:)
AnonymousApril 11, 2007 at 9:07 pm
Hi Lori: There are some older posts on fevers and GBS. I had fevers and still get them from the beginning, always at night. At first they were up to 102.5 every night for several weeks, but now rarely go above 99.5. That doesn’t seem like much of course to most doctors, but whenI get the fevers I am completely wiped out and must get into bed. Fortunately they do not come so often if I am careful about overdoing. I am sure it is one of those GBS things that are not understood yet, for I have spoken to several who have struggled with the fevers. Good luck, Jeff
AnonymousApril 11, 2007 at 9:53 pm
Fevers are the immune system “kicking in” saying we have a problem here. The heat from the fever is what attacks the virus/bacteria this is causing the problem. Unfortunately, with GBS/CIDP our wiring is messed up and we get strange messages and responses. That said ~ we really don’t know much about residuals yet so [I]any symptom could be our disease process[/I]. The moment a medical person says “it can’t be related” look out! There is no way that they can know for positive 😮
I firmly believe that only as we, the patients, “educate” the medical community will the truths become known.
I use to have fevers but as time has moved on (12 yrs.) it’s pretty rare now but I still get the sweats after over-doing 🙁
I can only imagine the worry and frustrations which come with caring for your precious child. I wish each one “well”. Hugs to all 🙂
AnonymousApril 11, 2007 at 11:23 pm
Lori, I also have these fevers. i’ve had them for many years, in my opinion they are a symptom and are related. mine started with my very first onset of tingles and numbness, which oddly enough came about 5 years before my paralysis event, along with the sweats and other symptoms. i know this sounds weird but these frequent fevers are different then say a fever i would get with an illness, i can’t describe the difference but it is there, maybe because i know they go away just about as fast as they come on, unlike the fevers associated with an illness. if that makes sense. go with your feelings, they are never wrong when it comes to your kids!
AnonymousApril 12, 2007 at 10:53 am
I just had an idea…
Is it possible that the fevers are from the solumedrol? Or did they start before he was put on it?
This is what I’m thinking …
Steroids affects your adrenal glands. Basically they shut down in the person & the steroids do the work for them (this is how Emi’s nurse explained it to me). I’m thinking that a rise in the steroid levels in his body or the way that his body is absorbing them might cause a fever. The adrenal glands control many different chemical balances in our bodies.
Or I could be completely off base. It was one of those crazy thoughts that pop into my head from time to time.
AnonymousApril 12, 2007 at 8:10 pm
Jerimy and Kelly,
Dell started oral steroid almost immediately after being dx, about 12/05. He’s only been on Solumedrol since Dec.
In 2006, he had fever March, April, May, Sept and Oct.
This year, he’s had it Jan, March and April. Comparing 2006 to 2007, he had it a total of 9 days in 2006 and so far 7 days and it’s only April. Almost always, his fever is not blamed on anything, no sore throat, ears are always fine, etc. It’s of unknown origin.
I never thought about the solumedrol having anything to do with the fevers. I will have to research that and ask the neurologist. We go for another treatment Sat. so I will ask him about that.
Thanks for everyone’s replys.
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