Help! Fever-what from??? strange-

[Denae]

Hey.. I have tried about 3 times to post but my computer has not been cooperative today and I haven't had time to mess with it..

I got Ri up this afternoon and noticed that the area around her tube was really red, I called the ped before that and the said "its a virus"

whatever....

So after seeing her g-tube site I called them back and they defered me to the GI. GI said she needs to be seen and that we could just go to the primary care to have it looked at since we are so far away. UGH! This message I didn't get until almost 5pm, too late to call the ped back.

So in the mean time I emailed Dr.P, I don't expect to hear back from them until tomorrow, so I will talk to his nurse about it when she calls.

I mean, even if it is an infection at the tube site WHY just fevers at night? Thats wierd and makes no sense. I have checked her temp several times through the day today and no fever. I checked before she woke up as well AND after her last seizure.. no fever..

I am starting to really think it may be the phenobarb...

I am ready to scream.. I don't know and there are just to many factors to try and figure it out so as long as it is below 102, I am not going to worry about it...

[RathyKay]

Originally Posted by LIZARD

My phenobarb was jacked through the roof during my preg with my daughter, and I never had a fever from it. Is this an effect only seen in kids?

LIZARD

I have no idea. Did you go to that site? On page 3, in the first section

The following adverse reactions and their incidence were compiled from surveillance of thousands of hospitalized patients.

Fevers fall under the Less than 1 in 100 patients section, so it's a rarity. So, Riley is one in a million, and you're an average Jane. Hee. I would guess that data is probably mostly adult, but I don't know for sure. And Riley is on a few more meds; I'm not sure how that would factor in to all of this.

[Kira]

I don't usually post on CN but occasionally read here since my disease is often a childhood one (mitochondrial disease-- Complex I deficiency).

Anyway... my mito affects my whole body, since mitochondria are part of nearly every cell. I have problems with multiple organ systems because of it-- a long list of issues that I won't get into here (muscle, brain, autonomic, GI, heart, electrolytes & acid/base, sleep, breathing, etc, etc). One thing I have from my mito is autonomic dysfunction.

I am not saying that Ri does (or doesn't) have mito... or even that she does (or doesn't) have autonomic dysfunction... Autonomic dysfunction can be caused by lots of issues that affect the brain/nervous system, not just mito. So if she does have autonomic dysfunction, maybe it is caused by whatever is causing her epilepsy & peripheral nerve problems & so on.

Anyway... I get fevers like you described from my autonomic dysfunction. I will be fine -- NOT sick with an infection or anything -- and then out of the blue I will get a fever for a little while, which goes away on its own. Usually the temp is 99-101 F or so for me, though I don't know if this is typical. I will get red flushed skin that's hot to the touch, I FEEL hot/feverish, and sometimes get sweaty with it. Taking Tylenol or Motrin doesn't seem to help when I get these "fevers." They last anywhere from 30 min to a couple of hours, then go away on their own. Doing stuff to cool off, like cool washcloths or ice packs or cold drinks, makes me feel better... don't know if it makes the fever stop sooner or if it stops on its own.

I have a lot of other issues from my autonomic dysfunction, besides the fevers. It affects my heart rate, blood pressure, GI motility, etc. I have Central Sleep Apnea, which may be affected by my autonomic problems (don't know). It also gives me these weird "adrenaline rush" episodes that are hard to describe.

I get tachycardia (fast heart rate) from my autonomic dysfunction, though that is currently controlled pretty well with a beta-blocker (atenolol). Before I started taking the atenolol, my average resting heart rate was pretty high (90-110 bpm) and it would shoot up to really fast heart rates (150-160 bpm) for no reason even when I was resting, laying down, even sleeping (Ri's expected "normal" heart rate would be different than mine because she's a kid). The Holter monitor showed that it wasn't an arrythmia. Other times, though much less often, I would have a slow heart rate for no good reason... for me this is not serious enough to need intervention, like a pacemaker, though.

I also had trouble with blood pressure, but that is somewhat better on the atenolol as well. My usual resting BP was fine... 110-120/65-75... but it would shoot up higher than a "normal" person's would with things like pain, fever, sickness, exertion (as high as 160s/100s) and would also drop much lower than a "normal" person's would with things like position changes, dehydration, certain meds, etc (80s/50s). Now, with the atenolol, it is almost never high, but I do still get the low BP issues. Plus, because atenolol is actually a blood pressure med, my BP is lower on the atenolol (90-105/60-70 mmHg) and we can't increase my atenolol dose any higher because my blood pressure would be too low.

I also have GI motility issues -- gastroparesis, slow motility overall -- which are common in mito but can also be affected by autonomic dysfunction. The autonomic nervous system sends signals to the stomach/GI tract to contract & move food through. With gastroparesis & GI dysmotility, the muscles & nerves that control the movement of food through the GI tract aren't working. With gastroparesis, the food just kind of sits in my stomach because it takes a lot longer than it's supposed to for it to empty. My symptoms are nausea/vomiting, feeling full hours after eating (which makes me never want to eat), vomiting hours after eating and it still looks like what I ate hours ago (sorry for the graphic description), stomachaches, reflux, etc. The symptoms of slow intestinal motility are similar to gastroparesis, plus constipation, belly pain, distended/bloated belly, etc. There are LOTS of things that can cause GI motility problems, though... not just mito/autonomic dysfunction. Anything from med side effects to diabetes to brain/nervous system issues to GI diseases and so on.

Another thing that my autonomic dysfunction causes is trouble tolerating heat/cold & trouble regulating my body temperature in general. This includes my "fevers" but also means that I can't take it when it is hot or cold outside. I will get hot/flushed/sweaty or pale/mottled/cold more than a "normal" person, in temperatures that wouldn't bother a "normal" person, or even sometimes when it doesn't make sense to be "hot" (like in a cool room) or "cold" (like in a warm room). I'll get goosebumps, chills, etc when it doesn't make sense to... that kind of thing.

I have Central Sleep Apnea which is basically my brain not telling me to breathe often enough when I am sleeping. When I sleep, my breathing slows down or even stops/pauses, and the low O2/high CO2 eventually wakes me up to breathe. This makes me sleep very poorly. I just found out that I have this in January, and am waiting for my sleep clinic appointment so I can start a kind of BiPAP that gives you an extra breath when you aren't breathing enough. I don't know how much my Central Sleep Apnea has to do with autonomic dysfunction... but breathing is controlled by the autonomic nervous system. There is also a possibility that my meds are making it worse, but we can't really change any of my meds right now so we are just going to treat it. I have a muscle weakness from mitochondrial myopathy, so they think that respiratory muscle weakness may also be a factor for me.

The other thing my autonomic issues do is give me these weird, hard-to-describe "adrenaline rush" episodes. You know the feeling you get when you are driving and narrowly avoid getting into an accident, or when you go to walk down the stairs in the dark and miss the first stair and catch yourself just before you fall down the stairs? That "fight or flight"/"adrenaline rush" feeling? This is like that, only it just kind of happens without anything to provoke it, and it lasts longer (minutes/hours). They think these "episodes" are from bursts of sympathetic nervous system overactivity (the part of your autonomic nervous system that does the "fight or flight" response).

Anyway............ I started out just wanting to say "I get unexplained fevers like that from my autonomic dysfunction"... but then ended up describing all of the other strange stuff autonomic dysfunction does to me. Autonomic dysfunction is weird and can cause different symptoms in different people, though. And, even though in my case it is due to mito, autonomic dysfunction can be caused by a lot of different diseases that affect the brain/nerves. "Autonomic dysfunction" just means that there is something wrong with the autonomic part of your nervous system. Plus, I don't know if Ri's fevers are from autonomic stuff or something else, since she has so many issues... it is just that they sound similar to what I get. Whatever is going on, it sounds like she really is overdue for a break (and you, too)...

This is a really long post... if you read this far, thanks. I will stop babbling now

[wheeliebird]

I hope sweet Ri's fever soon breaks!! Give her some {{{HUGS}}} from me!!

[Kira]

I wanted to add that there are autonomic seizures (then I saw that Liz already posted about this). They can be partials & don't have to generalize. Plus, I would think that even seizures coming from other parts of the brain can affect autonomic parts of the brain, even if they don't start in autonomic areas, if they generalize/spread.

One thing I thought of is that you mentioned that you thought she might be dehydrated. I know that hydration can really affect autonomic symptoms for a lot of us. Maybe they would let you increase her fluids, if you think she could tolerate the added volume (or if you could get her to just drink more). Is she getting as much fluid via G-tube as another kid her age & size would get from food & drink in a day? Is she one of those kids that gets dehydrated easily & just plain needs more fluids anyway? Maybe her meds affect how much fluid she needs? I know you need extra fluids with some seizure meds (Topamax comes to mind)...

The simplest thing that helps me when I get those autonomic fevers is doing stuff to cool down (anything you'd do in summer when you're hot)... cool washcloths, cold drinks, popsicles, cool showers, a cool room, less clothing/blankets, etc. Even if it doesn't make the fever go away any faster, it feels better.

Does she get any other signs/symptoms of autonomic stuff when she has the fevers? Things like fast heart rate, feeling dizzy, skin getting extra flushed OR pale &/or extra hot OR cold to the touch, GI stuff, etc? I don't know if she could tell you if she feels weird in other ways, like the "adrenaline rush" feeling I was talking about in my other post... but when I get that "adrenaline rush" feeling it makes me feel like I want to crawl out of my own skin & I get agitated & moody with it... so maybe you could kind of tell based on behavior. Of course, feeling feverish can make you moody & increase your heart rate & make you hot/flushed & all of that... Maybe the key would be to see if any of this stuff is different for her than when she gets a "regular" fever with a cold/infection? Or if it is happening more than usual even when she's not having a weird fever? I don't know...

Of course, the fevers could have nothing to do with autonomic issues, too... Like you said, maybe it is a med effect, or an infection, or something...

I hope that, whatever it is, you either get it figured out soon, or that it just plain goes away on its own (wouldn't that be great?)...

[Margaret Diann]

There is a chemical that causes autoimmune issues ... lots of them

and there is often a fever with it, too

It is in carpet cleaning and home cleaning products, and often not disclosed

Look at symptoms for CFIDS

and look into 2-butoxyethanol

Find the anemia that BUTYL causes

Chart to track autoimmune hypothalamus issues

Helps to find 'the anemia' ... CFIDS fatigue ... not generally found by doctors


I think it has widespread application - because many people in various walks of life are affected, but don't know it

Ask Congress to required disclosure of ingredients in Home Cleaning Products

"I'm convinced that metabolic features (changes in cholesterol and lipid profile, changes in glucose uptake and cell use, mitochondrial diseases and so on) are among main underestimated issue of 2-BE," says a French journalist


This chemical can cause high or low blood sugar, high or low blood pressure; high or low body temp; High or low ... any glandular hormones - often thyroid with gall bladder issues prior; Horrible headaches; short term memory loss

'civilian gulf war syndrome' aka CFIDS

so as to this issue also: mitochondrial disease-- Complex I deficiency


I suspect it is something that 2-butoxyethanol exposure would cause. Look for exposure signs: flatulence with diarrhea following unrelated to dietary issues; flu symptoms, the sniffles, etc

Look for multiple autoimmune issues ... even in the family line ... and look for abnormal blood sugar as a clue to this chemical's exposure

Example:

Grande Mal Seizures to Feveral Seizures to Fainting to Dizziness

Baby having severe seizures with instant high fever

____________________


Look into BUTYL for CFIDS, CFS, FM & 'Military Syndromes' *

An e-mail request to the CDC

on Flu Symptoms

Traces of blood in urine?

Diarrhea then Constipation?

Seizures Fainting Dizziness

[Kira]

so as to this issue also: mitochondrial disease-- Complex I deficiency


I suspect it is something that 2-butoxyethanol exposure would cause. Look for exposure signs: flatulence with diarrhea following unrelated to dietary issues; flu symptoms, the sniffles, etc

My mitochondrial disorder is due to a genetic mutation.

[Margaret Diann]

This chemical is a teratogen chemical

and it can affect one's genes

Scott Hamilton is a good example of 'birth defects' from a parent or parents being poisoned by such a chemical. (At least the pattern is there)

Has someone in the family had diabetes (a side effect) ... or fought in a war...? ... or had Chronic Fatigue Immune Dysfunction Syndrome, CFS, FM?

[Kira]

I don't want to get into it right now. I have a lot of solid lab/biopsy/mtDNA/etc evidence supporting the diagnosis.

For more info on mito: United Mitochondrial Disease Foundation's website is a good place to start (www.umdf.org)