Re: Just don't know what is happening to my 2 year old with PDCD!

[Guest guest]

Max has been crying because of pain at night for as long as we can remember...once she could talk, we learned abouther pain.....massage, ice or warm pack as well as Motrin may help. A warm bath before bedtime may also help.

Once Max received her wheelchair last year in October, we had a lot less problems with leg and ankle pains.

Hope some of this helps.

best regards

rosy

[Guest guest]

Me again...

I know for us and other moms I know...our mito kids just get this look in their eyes...this tired look and usually I could tell when the eyes started that droopy look that he had had enough...

deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.com

[Guest guest]

How do you know when your child needs a wheelchair? At this point we

could use the stroller. We are still trying to figure out how much

activity is too much. She will push herself to have fun, now that we

know we are trying to limit her, but don't know ourselves when to stop

her activity.

>

>

> Max has been crying because of pain at night for as long as we can

> remember...once she could talk, we learned abouther

pain.....massage, ice or warm pack

> as well as Motrin may help. A warm bath before bedtime may also

help.

>

> Once Max received her wheelchair last year in October, we had a lot

less

> problems with leg and ankle pains.

>

> Hope some of this helps.

>

> best regards

> rosy

[Guest guest]

Could it possibly be migranes? Grace gets very out of it and very irritable with migranes. It happened a few times before we figured out it was migranes. She now has a prescription for Periactin, wich helps prevent them. This really helps her and we do not see them any more.

Best wishes

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[Guest guest]

I think someimtes when my child over does it she cries at night. Have

you tried Tylenol? When she cries I would give that a try and see if

that helps. It might just be that simple.

DAWN

[Guest guest]

I haven't had much of a chance to read the other responses so pardon

me if this is a repeat... Our Lea frequently cries (it's more like a

scream- like an intense pain) at night as well, and from what I can

tell, it's always muscle cramps in her legs. She is 2, but is

completely non-verbal, so every time I try different things and what

always ends up working is a leg massage. After 15-20minutes she is

relaxed enough to get back to sleep... so I truly believe that she

suffers from leg cramps.

It also seems as though she is more apt to get them on a day where

she has alot of therapy or has a really high energy day and is busy

and going all day... (she still doesn't walk, but loves to cruise

furniture)

le and 2yo Lea, living with partial complex 1

and 6 other very healthy kiddos!

>

> Our Ellie, 2 1/2, was just diagnosed about a month ago from a

muscle

> biopsy. Ironically, in the recent months she has been getting

much

> weaker. Now in the last week, she has been screaming every night

> when she goes to bed, wakes up and screams, sometimes cries in her

> sleep. She has had 3 days where she has just screamed and cried

for

> half the day, she seems to be in pain, but she gets non-verbal

when

> she's like that. Sometimes I think she is just being two, because

> she seems to be able to stop for a while or seems to be milking

it,

> but then she will really seem to be in pain a few seconds later.

> Today after I managed to get some bacon in her for lunch she was

able

> to talk a little clearer, well talk at all I should say, and she

> wanted to go to bed and she said her fingers hurt. She has been

> taking it real easy the last couple of days so this time it

doesn't

> seem linked to too much activity. Does this sound like she is in

> crisis? She is not sleeping well at all. But, she does get

better

> for half the day, so I just don't get it. But, it's like she is

some

> other person, she is normally so happy and easy going. She used

to

> do this when she was much younger, but it didn't last for hours,

it

> was like attacks that came and went. Any possible explanations?

> Thank you,

> L

[Guest guest]

Ellie definately gets migraines, but this is something new. She has a

certain migrine look and holds her eyes, and wants a blanket over

head. Today when she screamed it seemed to be when she was going to

have to walk, until after her nap.

Thanks for your input everybody!!!! It really helps!

>

[Guest guest]

I have been giving her Motrin, and it doesn't touch it! I don't know

if her body just is used to Motrin now since she's been taking it for

2 years for migraines. I guess I need to ask the neuro about other

pain meds, now that I know what she has I am more willing to medicate

her. She already is on so much for all her different neurological

symptoms.

Thank you all!!!!!!!!!!

>

> I think someimtes when my child over does it she cries at night.

Have

> you tried Tylenol? When she cries I would give that a try and see if

> that helps. It might just be that simple.

>

> DAWN

[Guest guest]

I know this is going to sound weird, but I have hard muscle spasms, cramps

and

neuropathy in my legs. One thing that really triggers it is caffeine. I

have no idea

why, but some kinds of caffeine kill my legs. I don't know if your daughter

has had caffeine

lately, but if she has then maybe try to get rid of it for a few days to

see if it makes

a difference, definately better than more medicine. I cut it out of my

drinks and

dont drink tea anymore and I can tell an amazing difference. Hope this

helps.

I know not everyone is going to be the same, but its something simple to

maybe

help.

Lois

> [Original Message]

>

> To: <Mito >

> Date: 4/10/2005 8:46:39 PM

> Subject: Re: Just don't know what is happening to my 2 year old

with PDCD!

>

>

>

> I have been giving her Motrin, and it doesn't touch it! I don't know

> if her body just is used to Motrin now since she's been taking it for

> 2 years for migraines. I guess I need to ask the neuro about other

> pain meds, now that I know what she has I am more willing to medicate

> her. She already is on so much for all her different neurological

> symptoms.

> Thank you all!!!!!!!!!!

>

> >

> > I think someimtes when my child over does it she cries at night.

> Have

> > you tried Tylenol? When she cries I would give that a try and see if

> > that helps. It might just be that simple.

> >

> > DAWN

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Thanks, already cut out caffeine and chocolate because of seizures.

I am praying when she gets on the ketogenic diet it helps, because

nothing else seems to. We finally had a morning of her back to her

old self this morning, which is completely delightful. She had no

carbs for breakfast so maybe there is hope!! She did alot of laying

around but no crying or screaming. Yay!!!

> > >

> > > I think someimtes when my child over does it she cries at

night.

> > Have

> > > you tried Tylenol? When she cries I would give that a try and

see if

> > > that helps. It might just be that simple.

> > >

> > > DAWN

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

questions.

> >