concerns over excessive use of motrin...

[Guest guest]

Our doctors never have been concerned over the use of Motrin. Grace actually takes Motrin a lot, to protect her liver. She is absolutly never allowed Tylenol, though. She does have liver damage from mito, so we are even more cautious then some. We start Motrin, and a lot of fluids at the first sign of anything. You really have to decide, if the potential side affects of the medicine are worse than what it is fixing. Grace is currently on about 12 different prescriptions, to treat a variety of things. It may seem exessive, but for her it gives her quality of life. Without these medications she would not be the two year old she is. I would discuss your concerns with your doctor. Maybe they can offer another choice, or reassure you. I would defiantly not let a high fever go, though. Around here even the start of one, increases the risk of a lot worse things to go bad. It almost always results in a hospital stay, which are never fun. Best wishes.

[Guest guest]

So after brandons latest fever (it seems to have broken this

morning, it shot up at 4am to 106.5 again, but by 530 it was down to

103, and now its only 100, so i think were over the worst of it),

and looking at the calendar I have been keeping to keep track of his

fevers. I have come to realise that over the past 60 days

has had a fever over 101, 25% of the time. Tylenol will not touch

his fevers. motrin will only bring them down to an acceptable level

(102-104). The docs Ive seen this far just say to keep doing what

im doing, which is keeping him basically dosed on motrin, AND

tylenol for up to 5 days at a time, 2 times a month on average...

Now I know from experience that there are alot of risks that go

along with motrin use (stomach issues and such, I myself have mild

kidney damage from overuse of ibuprofen as a teenager, my doc didnt

know what else to do so he kept upping my dose... at one point i was

taking 600mg 4 times a day to control hip and spine inflamation)

So im worried that using motrin THAT much on such a tiny body (hes

only 19 months and 23 lbs) cant possibly be good for him...

but nothing else helps his fevers (Ive tried it all, sponging, tepid

baths, light clothes, popsicles, cold drinks, etc) so im at a

loss...

i know fevers are a common occurence in mito kids, do any of your

docs show concern over the use of medicines?

maybe im just searching for stuff to worry about now?

[Guest guest]

Hi,

I am sorry you are dealing with fevers---we used to get them alot

before we new the boys were sick. Tylenol never did a thing for them

either, Motrin barely lasted 4 hours. I think their is debate over

motrin use---we don't get the fevers anymore but we have been told

not to use motrin unless absolutely necessary: actually we were told

not to give anything unless absolutely necessary. Fevers that high

need something.

Motrin supposedly depletes cytochromes or something like that (I

can't remember) and cytochromes are something that the mitochondria

use.

The twins absolutely cannot tolerate a fever--anything over 103 for

more than a day would send them into a crisis. Have you seen an

immunologist? Cole has an IGG 3 deficiency---I think a number of

other kids have these issues as well. Has been tested?

Hope he is feeling better,

Kris

> So after brandons latest fever (it seems to have broken this

> morning, it shot up at 4am to 106.5 again, but by 530 it was down

to

> 103, and now its only 100, so i think were over the worst of it),

> and looking at the calendar I have been keeping to keep track of

his

> fevers. I have come to realise that over the past 60 days

> has had a fever over 101, 25% of the time. Tylenol will not touch

> his fevers. motrin will only bring them down to an acceptable

level

> (102-104). The docs Ive seen this far just say to keep doing what

> im doing, which is keeping him basically dosed on motrin, AND

> tylenol for up to 5 days at a time, 2 times a month on average...

> Now I know from experience that there are alot of risks that go

> along with motrin use (stomach issues and such, I myself have mild

> kidney damage from overuse of ibuprofen as a teenager, my doc didnt

> know what else to do so he kept upping my dose... at one point i

was

> taking 600mg 4 times a day to control hip and spine inflamation)

>

> So im worried that using motrin THAT much on such a tiny body (hes

> only 19 months and 23 lbs) cant possibly be good for him...

> but nothing else helps his fevers (Ive tried it all, sponging,

tepid

> baths, light clothes, popsicles, cold drinks, etc) so im at a

> loss...

> i know fevers are a common occurence in mito kids, do any of your

> docs show concern over the use of medicines?

> maybe im just searching for stuff to worry about now?

[Guest guest]

His IGA and others (I think he had 3 tests altogether) were all

normal except for one that was a bit high, so our doc said its

unlikely its an immune issue...

Im definately going to be asking about the motrin use when we see

the specialist...

were just at the beginning of all this right now, so its nice to

know waht questions to ask! thank you!

> > So after brandons latest fever (it seems to have broken this

> > morning, it shot up at 4am to 106.5 again, but by 530 it was

down

> to

> > 103, and now its only 100, so i think were over the worst of

it),

> > and looking at the calendar I have been keeping to keep track of

> his

> > fevers. I have come to realise that over the past 60 days

> > has had a fever over 101, 25% of the time. Tylenol will not

touch

> > his fevers. motrin will only bring them down to an acceptable

> level

> > (102-104). The docs Ive seen this far just say to keep doing

what

> > im doing, which is keeping him basically dosed on motrin, AND

> > tylenol for up to 5 days at a time, 2 times a month on

average...

> > Now I know from experience that there are alot of risks that go

> > along with motrin use (stomach issues and such, I myself have

mild

> > kidney damage from overuse of ibuprofen as a teenager, my doc

didnt

> > know what else to do so he kept upping my dose... at one point i

> was

> > taking 600mg 4 times a day to control hip and spine inflamation)

> >

> > So im worried that using motrin THAT much on such a tiny body

(hes

> > only 19 months and 23 lbs) cant possibly be good for him...

> > but nothing else helps his fevers (Ive tried it all, sponging,

> tepid

> > baths, light clothes, popsicles, cold drinks, etc) so im at a

> > loss...

> > i know fevers are a common occurence in mito kids, do any of

your

> > docs show concern over the use of medicines?

> > maybe im just searching for stuff to worry about now?