RE: What should I do now? Need help!

[Guest guest]

Kim,

I have found with doctors that you have to go with your gut. Mommy's

intuition is usually right about these things, and when their not, well,

it's better to be safe than sorry. It's been a little over a year since her

last MRI, correct? Since then, she's had several siezure episodes. A lot

can happen in a year with these types of diseases once they pick up steam

(at least from what I've seen in my family). What is his description of

sick enough? My brother had grand mal siezures; they are scary for the

loved one who has to rush them to the hospital. You feel so helpless. Then

it takes so long to get back on track after the whole seizure/hospital

episode. It's much better to be informed as much as possible about the

progression of your child's/loved one's disease, especially with seizures.

It got to the point with my brother that we could see the seizure coming on

by watching telltale signs. What kind of doctor are you seeing? Maybe if

you are not satisfied with that doctor, you should seek a second opinion.

Bottom line is this: a doctor has many patients to keep up with. We have

just our child(ren) to keep up with. They cannot give as much attention as

we can to the situation. Don't give up. Your child's quality of life

depends on it. Many blessings.

Caroline

>

>Reply-To: Mito

>To: Mito

>Subject: What should I do now? Need help!

>Date: Wed, 28 Jul 2004 03:31:13 -0000

>

Hi~Madison is 5 and mito has been talked to us by her genetics and

the muscle biopsy has also been talked but at our last visit 3 weeks

ago, the dr. felt Madison is just not sick enough. I understand

that BUT in May she finally showed clear partial seizures on an eeg

and was put on zonegran. She had 3 seizures when she was 2 but

always normal eegs until now. She has always complained of her legs

hurting for about 2 years and she fatigues very easily compared to

her peers. Anyways, the past 4 days she has complained every night

of her legs hurting and tonight I found her laying on the kitchen

floor b/c her legs were hurting. The past month she has had about 4

potty accidents-Monday she woke up b/c she had wet the bed. Very

unusual for her. I feel like I should call the dr but what do I

say? Every blood test has been done and all come back normal except

3 weeks ago she had a high level of beta alanine amino acids but then

the 2nd test was normal. I was told it was a fluke. Should I ask

for anything else to be done. I asked for a MRI since she is now

showing clear seizures but the dr said since Madison had a normal one

June 2003 then it would be the same. I do not want to sound like a

crazy mom but my gut is telling me to push for more. My question

is: Is there anything else any of you suggest I say to the dr?

Sorry for so long. Please know I read daily but hardly post b/c I do

not have the knowledge on mito like many of you do. Thanks ahead for

any replies.

Kim

Please contact mito-owner with any problems or questions.

[Guest guest]

Kim,

I am new to Mito too, and I have so little knowledge about it

myself, but I wanted to tell you that we are in a very similar

situation. My son is 5, and when we went to the genetics dr last

monday, they told me to make an appt with the neuro, GI, (due to

chronic constipation, I suspect delayed gastric emptying, and eating

issues) and when I asked if the neuro would do an MRI, they told me

it's doubtful that he would because Devin just doesn't seem affected

enough. I was upset at first because, although I haven't seen any

seizure activity in him, there are other things going on and I want

to see what might show up on a scan. They said their report to the

neuro would not tell him to do an MRI, but ask questions, and see

what he might do. One thing that helped me to calm down a bit is to

realize that they see children who are much more affected than our

children may be, so they may not take us as seriously as other

parents requesting an MRI and whatever else. In that way I was kind

of thankful. I am going to push as hard as I can for an MRI when we

see the neuro on Friday though. Anything worth fighting for is never

easy is it? And our children are definately worth it!! *Ü*

We have also discussed a muscle biopsy. They only do frozen at our

hospital, and our doc recommended they send us to Atlanta, San

Diego, wherever there is an opening. I wonder if insurance pays for

that kind of thing? I haven't checked it out. I hope you can get the

muscle biopsy too, because I know how it feels wondering what is

going on with your child and not having any answers!

Good luck to you,

e

[Guest guest]

All tests for Wyatt always came back with in the normal range.

Sometimes they were high normal but still normal. They finally

started to suspect mito when he was sick and we ran lactic acid

tests. It came back above the normal range. We then did a skin

biopsy that confirmed complex I, however the muscle biopsy is up for

debate. They are running some more tests on it. Anyways my point

been is that maybe wait until she is sick and then have some blood

tests done. Something might show up at that time. Good luck.

Geri-Anne and Wyatt, Complex I-

-- In Mito , " mkbarrow2 " wrote:

> Hi~Madison is 5 and mito has been talked to us by her genetics and

> the muscle biopsy has also been talked but at our last visit 3

weeks

> ago, the dr. felt Madison is just not sick enough. I understand

> that BUT in May she finally showed clear partial seizures on an

eeg

> and was put on zonegran. She had 3 seizures when she was 2 but

> always normal eegs until now. She has always complained of her

legs

> hurting for about 2 years and she fatigues very easily compared to

> her peers. Anyways, the past 4 days she has complained every

night

> of her legs hurting and tonight I found her laying on the kitchen

> floor b/c her legs were hurting. The past month she has had about

4

> potty accidents-Monday she woke up b/c she had wet the bed. Very

> unusual for her. I feel like I should call the dr but what do I

> say? Every blood test has been done and all come back normal

except

> 3 weeks ago she had a high level of beta alanine amino acids but

then

> the 2nd test was normal. I was told it was a fluke. Should I ask

> for anything else to be done. I asked for a MRI since she is now

> showing clear seizures but the dr said since Madison had a normal

one

> June 2003 then it would be the same. I do not want to sound like

a

> crazy mom but my gut is telling me to push for more. My question

> is: Is there anything else any of you suggest I say to the dr?

> Sorry for so long. Please know I read daily but hardly post b/c I

do

> not have the knowledge on mito like many of you do. Thanks ahead

for

> any replies.

> Kim