Need Advice-Asher sick(long)

[Guest guest]

Hi,

Asher started complaining last night that his stomach hurt and he was very flushed, and puffy. I checked his temp and he was 101.7; I gave him Motrin but he threw it up. This a.m., he had a low fever. I took him to his pediatrician who, unfortunately, at this point, is clueless (and doesn't know it) about metabolic/mitochondrial disorders and, because we still don't have the diagnosis we are waiting for, doesn't treat Asher any different than any of the "normal" kids. The ped thought Ash either has a virus, sinus infection that caused him to throw up, or strep. We'll know about the strep test tomorrow. She did give us a prescription for an antibiotic but told us not to use it unless strep test is positive or if his nose and fever don't quit by Thursday. And she said just give him pedialyte for the day.

This afternoon his fever's up again. He's very red. I gave him Motrin. He has not thrown up at all since last night. I called the ped gastro (who has at least one mito patient and other metabolic patients) and he told me to make sure to go ahead and tube feed Asher like normal - he also told me to call Shoffner's office to see if there's anything else I should do. I know that Shoffner's at a conference so I don't think I"ll be able to reach him. The ped gastro was very concerned about Asher's not keeping his tube food down (I hope he does tonight) b/c of the whole issue of fasting. I'm scared because the last significant fever Asher had was in November and there was a 3 month downhill slide in all of his motor abilities, energy levels, fatigue, eating, etc. after that and then he got better when we got the G-tube in March. It was like his GI motility became SO MUCH worse after he was sick in November and it never improved. I don't want Asher to lose any other abilities. So, my question: Is there anything else I should be doing???

Sorry so long. Just worried.

Anne R

[Guest guest]

When Grace gets sick, we pump her full of Pedialyte. We start giving it at the first sign of a fever and do not stop until it is gone. Did you put the motrin through the tube? Usually if Grace is vomiting oral foods, she can still handle the medicine and pedialyte through the tube. She is not fed through her tube, so we do not have a pump. So, I slowly push about 2 ounces of Pedialyte every hour, day and night. With it being so slow, she is good about keeping it in. Best wishes, hope he is feeling better really soon.

[Guest guest]

hi anne,

i do not have any advice, but just went through the same symptoms

with my daughter two weeks ago. her fever reached 105 and she was

vomiting for 1 day. (this started the day before my boys had T&A

surgery--you know, when it rains, it pours!) she had a fever off

and on for a few days, and then was fine. so, hopefully your ped.

is right and it is just viral. we did the motrin/pedialyte, then

switched to her regular formula. her ped. did run blood work, and

also checked urine....she is good to cover all bases...everything

came back fine, so we managed at home.

good luck and i hope asher starts feeling better soon.

take care,

bethany

mom to brennan 7, palmer & anna grace (leighs) 4

> Hi,

>

> Asher started complaining last night that his stomach hurt and he

was very

> flushed, and puffy. I checked his temp and he was 101.7; I gave

him Motrin but

> he threw it up. This a.m., he had a low fever. I took him to his

pediatrician

> who, unfortunately, at this point, is clueless (and doesn't know

it) about

> metabolic/mitochondrial disorders and, because we still don't have

the diagnosis

> we are waiting for, doesn't treat Asher any different than any of

the " normal "

> kids. The ped thought Ash either has a virus, sinus infection that

caused him

> to throw up, or strep. We'll know about the strep test tomorrow.

She did give

> us a prescription for an antibiotic but told us not to use it

unless strep

> test is positive or if his nose and fever don't quit by Thursday.

And she said

> just give him pedialyte for the day.

>

> This afternoon his fever's up again. He's very red. I gave him

Motrin. He has

> not thrown up at all since last night. I called the ped gastro

(who has at

> least one mito patient and other metabolic patients) and he told

me to make sure

> to go ahead and tube feed Asher like normal - he also told me to

call

> Shoffner's office to see if there's anything else I should do. I

know that Shoffner's

> at a conference so I don't think I " ll be able to reach him. The

ped gastro

> was very concerned about Asher's not keeping his tube food down (I

hope he does

> tonight) b/c of the whole issue of fasting. I'm scared because the

last

> significant fever Asher had was in November and there was a 3

month downhill slide

> in all of his motor abilities, energy levels, fatigue, eating,

etc. after that

> and then he got better when we got the G-tube in March. It was

like his GI

> motility became SO MUCH worse after he was sick in November and it

never

> improved. I don't want Asher to lose any other abilities. So, my

question: Is there

> anything else I should be doing???

>

> Sorry so long. Just worried.

> Anne R