Re: Re: My youngest son, is.really sick, Prayers please!

[Guest guest]

RH

I have a 0 complex I as you do, but have not had stroke like episodes. My

mother had one that we know of. It depends on where the bad mito are. If in

the brain, then more of those symptoms. This is the reason that those in the

same family with the same defect can have such different symptoms.

I know you do well on a low carb diet, but the brain burns glucose almost

exclusively, so you might need more glucose when there are brain symptoms.

This is just my thinking, not a doctors. I do know that when my mother had

hers, they gave her D10 and then gave her insulin so her blood sugars didn't

get too high. She responded very well to this.

laurie

>

> Reply-To:

> Date: Wed, 23 Feb 2005 18:13:31 -0000

> To:

> Subject: Re: My youngest son, is.really sick, Prayers please!

>

>

>

> Our thoughts are with you, I hope everything is okay.

>

> Um, but, am I correct to say this is a new symptom for him and for

> your family in general? This sounds a lot like episodes I have,

> especially the clenched fists part. Soooo, without an update, not

> sure where you guys are at, but as an adult who has had these

> episodes, hang in there if they say " it is just mito " . Being sick

> can bring out all sorts of episodes...

>

> I thought almost mito patients have stroke-like and seizure-like

> episodes, is that a wrong impression? Maybe only Complex I involved

> patients, or MELAS type?

>

> P.S. I have had many of these episodes, and have no permanent damage

> from them, except there's a tiny chance that I have a small amount of

> peripheral neuropathy from it (pinky and outside of left arm feel a

> bit tingly). But I play sports, so I guess it doesn't affect my

> muscles.

>

> Again, hope everything is okay and you work through his illness.

>

> Take care,

> RH

>

>

>

>>

>> Just a quick note to tell you about what is happening here.

>> woke up sick Thursday morning with a resp infection coughing, and

>> having trouble keeping his feedings down his g-tube. When he has

> this

>> problem we can run into trouble with his seizures because he

> doesn't

>> get the right dose of meds when he can't keep his meds and formula

>> down. Anyway, I took him to the Ped on Thursday and she put him on

>> Biaxin. He was up nightly coughing and with a high fever. Yesterday

>> morning I went to get him out of bed and help him to the potty when

>> he FELL out of the bed. He CAN'T WALK!!!!! I helped him take a few

>> steps, but he was " toe walking holding his body to one side and

>> CLAWING his fist up in a ball,,,,,,,,like a person with CP. I

> called

>> my neighbor and she came over in her pjs. We had him try to walk

> and

>> he looked like a baby taking his first few steps.:-( Called the

>> Neuro who told me that is one of 3 things.

>> 1. Fever induced Neuro problems

>> 2. Mycologic Seizures that affected his muscles and should resolve

> on

>> it's own

>> 3. Stroke like episode caused by lack of glucose to the brain due

> to

>> the Mito Disease. A real stroke is caused by a blood clot that

> causes

>> lack of O2 to the brain. In our case with Mito, the brain lacks

>> glucose energy which we are already deficient in. The illness has

>> robbed all the energy from his body and now his brain is being

>> affected. We HOPE that as his body gets back to norm and uses the

>> glucose properly, he will recover completely. We have no idea when

>> his will happen or if he will recover 100% but I am TRYING to stay

>> positive about the whole thing! My house looks like a bomb hit it---

>> laundry (clean) is piled up on the couches and the kids and Dennis

>> are doing the " pick thru method to get dressed in the morning. " I

> am

>> unable to leave him because if he tries to get out of bed he falls

>> and he has already taken a fall with my help to the bathroom! He

>> fell off the potty because his balance is so bad and since he toe

>> walking and dragging his leg and hand he can't reach out to catch

>> himself.

>>

>> Sorry this is so much longer than intended but my computer is in my

>> bedroom so I was able to sit here and watch him at the same time.

> It

>> is nice to have adult contact after all these days stuck in this

>> room. I have had my neighbor and 's caregiver here yesterday

>> when all Hell broke lose, but today I am solo due to their

> schedules.

>>

>>

>> Who is tired, upset, scared & surrounded by a dirty house

>

>

>

>

>

>

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