Re: Leighs - feeding requirements Re Bill

[Guest guest]

The way Logan was diagnosed at 9 weeks was, well, I guess the easiest way to say it is from the start. Logan had some problems sleeping one night, he was up and down, restless. Finally, got him settled on my chest. We both fell asleep. When I woke up the next morning, I saw him laying there blue. I rushed him to the ER. They looked at him, called the chopper and off to Childrens Mercy in KC we went. They ran a battery of test, for like 2 weeks. EEG's, etc. They just thought he was having small seizures, but while at the hospital, they got more severe. He spent a week or so of that time in ICU. Well, when all the test were done they gave us a diagnoisis of Leighs. My has spent all the time, everytime, he has been at the hospital, there with him. I would travel back and forth with the other 2 kids in tow. They told us not expect Logan to live past 3. So we decided to let him live normally. We feed him, let him play, he get in trouble, sent to his room, just like the other 2. We

pretty much decided that we were going to take care of him as long as God allows us to have him here on Earth. I really am not doing justice to the way my wife has kept him going here. So please bear with me. From time to time, he goes back and spends 2 to 3 weeks in the hospital. Has to have the scans, the IV's, Levels checked, you name it. He won't walk or anything when he is at the point to going back. He will just lay around, not wanting to be touched. Well, we moved to Florida. Since being here, he has only been in the hospital one time for a week and the doctor confirmed Leigh's. But he also gave us a ray of hope, he has a couple of patients that have made it into their teenage years. So, basically, to answer this, we still have him on 13 meds a day, but after the meds are taken, he is treated like a normal kid. No special treatment. He was the one at Christmas of 2003 that threw his walker away. From that day on he has walked with just braces. He loves to go outside. He loves

to swing. He loves to play with the dog. You know, normal kid stuff. But there also the times, that he just wants to be held, those are the times that you can tell when he is ready to go back to the hospital. I hope I answered your question. I know some are going to say that I am full of it, but, I have been in your shoes. We had last rights read to him on 3 different occasions, from the doctor's telling us that he wouldn't be going home. We strongly believe in God, and so does Logan, you can tell. He tells stories about angels in his room. You just have to listen close to him to understand what he is saying. Me and , my wife, pray everynight, that if this is his last night on earth, did we give him a childhood to remember. Just let the kids be normal kids. Some have the fight in them to continue. Some don't. It is up to them if they want to fight this, they will. Logan is still having gripping problems, he still has things that irratate him, but he always fights through it and

continues on. If you show them that it bugs you that they are sick, then it bugs them too. If you are strong, cry outside the room, then they will be strong. Keep praying, I will pray for all the kids as I do everynight.akurtz1974 wrote:

Bill,It amazed me how you have said that Logan is progressing. My Eli with Leigh's has only lost abilities. We have tried and tried to keep what little abilities he had. On the other hand Eli's MRI showed his extreme damage to his brain at such a young age. How was Logan diagnosed at 9weeks? What made them want to test him? What is your secret to helping him do so well?I am confused. My understanding of Leigh's Changes everytime I meet another affected child. So many children all progressing differantly. Ann (Elijah's Mommy) > > Can anyone give me advice on feeding requirements> > Lucas is 16 months old & NG tube fed, he is very floppy in his muscle tone and doesn't move much.> > The Dietican currently has him down to have 1000ml of pedisure a day, but he doesn't seem to tolerate that much. We give him between 800 and 850 total, about 170 at a time give or take and about 170ml of water. feeds run every 3-4 hours at 40-50 minutes(200-250 rate) > > He is getting some reflux at the end of his feeds despite having Domperidone [antirelux medicine] > > Is this too much food for this kind of child?> > Has anyone had similar expieriences and found of ways around this?> > > > > > >

> > > > > > Send instant messages to your online friends http://uk.messenger.yahoo.com > > Please contact mito-owner with any problems or questions. > > > > --------------------------------->

[Guest guest]

How nice to have a dad giving his two

cents!! I really loved your ideas and inspiring story. Thanks for the

reminder!!

Suzanne in Az

From: BILL CARTER

Sent: Monday, April 04, 2005 2:08

PM

To: Mito

Subject: Re: Re: Leighs - feeding requirements Re

Bill

The way Logan

was diagnosed at 9 weeks was, well, I guess the easiest way to say it is from

the start. Logan

had some problems sleeping one night, he was up and down, restless. Finally,

got him settled on my chest. We both fell asleep. When I woke up the next

morning, I saw him laying there blue. I rushed him to the ER. They looked at

him, called the chopper and off to Childrens Mercy in KC we went. They ran a

battery of test, for like 2 weeks. EEG's, etc. They just thought he was having

small seizures, but while at the hospital, they got more severe. He spent a

week or so of that time in ICU. Well, when all the test were done they gave us

a diagnoisis of Leighs. My has spent all the time, everytime, he has been at

the hospital, there with him. I would travel back and forth with the other 2

kids in tow. They told us not expect Logan

to live past 3. So we decided to let him live normally. We feed him, let him

play, he get in trouble, sent to his room, just like the other 2. We pretty

much decided that we were going to take care of him as long as God allows us to

have him here on Earth. I really am not doing justice to the way my wife has

kept him going here. So please bear with me. From time to time, he goes back

and spends 2 to 3 weeks in the hospital. Has to have the scans, the IV's,

Levels checked, you name it. He won't walk or anything when he is at the point

to going back. He will just lay around, not wanting to be touched. Well, we

moved to Florida.

Since being here, he has only been in the hospital one time for a week and the

doctor confirmed Leigh's. But he also gave us a ray of hope, he has a couple of

patients that have made it into their teenage years. So, basically, to answer

this, we still have him on 13 meds a day, but after the meds are taken, he is

treated like a normal kid. No special treatment. He was the one at Christmas of

2003 that threw his walker away. From that day on he has walked with just

braces. He loves to go outside. He loves to swing. He loves to play with the

dog. You know, normal kid stuff. But there also the times, that he just wants

to be held, those are the times that you can tell when he is ready to go back

to the hospital. I hope I answered your question. I know some are going to say

that I am full of it, but, I have been in your shoes. We had last rights read

to him on 3 different occasions, from the doctor's telling us that he wouldn't

be going home. We strongly believe in God, and so does Logan, you can tell. He tells stories about

angels in his room. You just have to listen close to him to understand what he

is saying. Me and , my wife, pray everynight, that if this is his last

night on earth, did we give him a childhood to remember. Just let the kids be

normal kids. Some have the fight in them to continue. Some don't. It is up to

them if they want to fight this, they will. Logan is still having gripping problems, he

still has things that irratate him, but he always fights throug h it and

continues on. If you show them that it bugs you that they are sick, then it

bugs them too. If you are strong, cry outside the room, then they will be

strong. Keep praying, I will pray for all the kids as I do everynight.

akurtz1974

wrote:

Bill,

It amazed me how you have said that Logan is progressing. My

Eli

with Leigh's has only lost abilities. We have

tried and tried to

keep what little abilities he had. On the other

hand Eli's MRI

showed his extreme damage to his brain at such a

young age. How was

Logan diagnosed at 9weeks? What made them want to test him? What

is

your secret to helping him do so well?

I am confused. My understanding of Leigh's Changes

everytime I meet

another affected child. So many children all

progressing

differantly.

Ann (Elijah's Mommy)

>

> Can anyone give me advice on feeding

requirements

>

> Lucas is 16 months old & NG tube fed, he

is very floppy in his

muscle tone and doesn't move much.

>

> The Dietican currently has him down to have

1000ml of pedisure a

day, but he doesn't seem to tolerate that much. We

give him between

800 and 850 total, about 170 at a time give or

take and about 170ml

of water. feeds run every 3-4 hours at 40-50

minutes(200-250 rate)

>

> He is getting some reflux at the end of his

feeds despite having

Domperidone [antirelux medicine]

>

> Is this too much food for this kind of child?

>

> Has anyone had similar expieriences and found

of ways around this?

>

>

>

>

>

>

>

>

>

>

>

>

> Send instant messages to your online friends

http://uk.messenger.yahoo.com

>

> Please contact mito-owner

with any problems or

questions.

>

>

>

> ---------------------------------

>