Fighting Sleep

[Guest guest]

Hello,

We need some help and/or advice. Our daughter, Ellie, will be 3

next week. She has mito complex IV with multiple brain lesions, no

balance and has recently begun losing muscle control of her eyes

(they are crossing quite a bit). She has also begun to fight

sleeping, which is where we need help.

We don't know if the no sleeping bit is a toddler stage or if it has

to do with the mito. But it is getting worse. She naps fine at

school (T, W & Th), but not at home. And at bedtime she is

completely and totally exhausted if she has not napped (sometimes

even if she has napped). And it seems it is taking less and less

for her to become overtired and exhausted. Her eyes are red and

swollen and will be half closed (she looks drunk!) but she cries and

fights going to bed. We recently moved her to a big girl bed but I

don't think that is the issue. She does do better going to sleep if

her Dad puts her down. The more she fights it the more she cries

and fusses. Then she just finally passes out.

Any thoughts? Since whiskey isn't an option, we thought someone

might have an idea or two. Thanks in advance...

KK & MK

[Guest guest]

Cod liver oil & Omega 3 fish oil can help with her eyes. Melatonin or 5-HTP will help with sleep. She sounds overstimulated, which will make it harder for her to "shut down" to sleep. Epsom salt baths before bed can help also. Calcium/magnesium/zinc supplement is also calming.

Cindy-GA

Fighting Sleep

Hello,We need some help and/or advice. Our daughter, Ellie, will be 3 next week. She has mito complex IV with multiple brain lesions, no balance and has recently begun losing muscle control of her eyes (they are crossing quite a bit). She has also begun to fight sleeping, which is where we need help. We don't know if the no sleeping bit is a toddler stage or if it has to do with the mito. But it is getting worse. She naps fine at school (T, W & Th), but not at home. And at bedtime she is completely and totally exhausted if she has not napped (sometimes even if she has napped). And it seems it is taking less and less for her to become overtired and exhausted. Her eyes are red and swollen and will be half closed (she looks drunk!) but she cries and fights going to bed. We recently moved her to a big girl bed but I don't think that is the issue. She does do better going to sleep if her Dad puts her down. The more she fights it the more she cries and fusses. Then she just finally passes out.Any thoughts? Since whiskey isn't an option, we thought someone might have an idea or two. Thanks in advance...KK & MK

[Guest guest]

My 28 mos. Old has has similar sleep

difficulties. She seems to be Mildly affected with mito, however has some brain malformations

that put her in the clinical area of being mildly retarded. She often seems

overstimulated and at bedtime it can be a fight. She also wakes up almost

screaming 4 times a night -= for food or milk, which she really needs. Anyway,

I would be open to suggestions too.

Here is what has helped me. First of all

limit motion prior to bed, high activity, even rocking her will stimulate her

instead of soothing her at bedtime. I do the bath before bed, books and dim

lights. I put her in her nightgown 30 min. prior to as a signal we are winding

down, but I have found the biggest help to be simply, distracting her. I put on

a story or song tape( audio) . Tell her stories etc. I also give her a massage with

some lavender lotion . I found that if there is any light or toys left out that

are visible it will distract her- so everything is picked up and light is as

dim as possible.

I have also given her some soft snuggly

toys that are safe to play with in bed. Sometimes, if I am really desperate and

it is a chilly night I even lay a heating pad in her bed for a bit, before I

tuck her in. Desperate moms will try anything. Anyone ever heard of a wet

diaper waking up a child?? Just wetting her diaper lightly will wake her up and

make her cry- even if it is not soaked. Egads!!!!

Take Care-

Suzanne in Arizona,

mom to Zoe , 27 mos.( working diagnosis mito,SCAD,

muscle biopsy results pending)

From: Cj

Sent: Friday, October 01, 2004

5:32 PM

To: Mito

Subject: Re: Fighting Sleep

Cod liver oil & Omega 3 fish oil can

help with her eyes. Melatonin or 5-HTP will help with sleep. She sounds

overstimulated, which will make it harder for her to " shut down " to

sleep. Epsom salt baths before bed can help also. Calcium/magnesium/zinc supplement

is also calming.

Cindy-GA

Fighting Sleep

Hello,

We need some help and/or advice. Our daughter, Ellie, will be 3

next week. She has mito

complex IV with multiple brain lesions, no

balance and has recently begun losing muscle control of her eyes

(they are crossing quite a bit). She has also begun to fight

sleeping, which is where we need help.

We don't know if the no sleeping bit is a toddler stage or if it has

to do with the mito.

But it is getting worse. She naps fine at

school (T, W & Th), but not at home. And at bedtime she is

completely and totally exhausted if she has not napped (sometimes

even if she has napped). And it seems it is taking less and less

for her to become overtired and exhausted. Her eyes are red and

swollen and will be half closed (she looks drunk!) but she cries and

fights going to bed. We recently moved her to a big girl bed but I

don't think that is the issue. She does do better going to sleep if

her Dad puts her down. The more she fights it the more she cries

and fusses. Then she just finally passes out.

Any thoughts? Since whiskey isn't an option, we thought someone

might have an idea or two. Thanks in advance...

KK & MK

[Guest guest]

We have the same issues with our 2 year old daughter Grace (non specific mito). Our Mito doc (Dr. Cohen) suggested Melatonin. It is available OTC and we were supposed to start with 1/2 a pill before bedtime.

For Grace this was unsuccessful by itself. Now we use 1 pill (crushed) and 10cc of Periactin at bedtime. The Melatonin helps her fall asleep and the Periactin keeps her asleep. The Periactin is prescription and used for many things. (For Grace we use it for appetite stimulant, migraines, and sleep.)

Best wishes.

[Guest guest]

I know this was posted quite awhile ago but have been busy moving. Our son, Lucas, 8 yrs old had similiar sleep issues. Melatonin worked for awhile for us but now he is on amitriptyline at bedtime. This has allowed him to fall asleep and he also is not tossing and turning in his sleep. We also used this for pain issues because we felt this was why he would be tossing and turning in bed. HTH, Loriann