Re: Audrey very restless

[Guest guest]

One, what did you give to your children to calm them down so they weren't in distress? I told Amie last night that I think Audrey was in pain and she isn't able to tell us. Amie is afraid to give Audrey anything because fo what the Doctor said about affecting her respiratory drive but I did tell Amie they may have to make a choice between having her like she was last night and taking a chance on the meds.

had this sort of sleeping pattern the last few months and was in pain the last couple months. Nothing worked until we tried Neurontin. I know I am always praising that drug but it really helped so I am praising it once again! We did end up increasing it a few times but he was never 'drugged' on it. It helped with his pain, neuropathy, and myotonic seizures he only had while sleeping...

deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.debwells.com/

[Guest guest]

Kathy:

I have no words of advice for you in this area as Leah has never experienced

any thing of this. But please don't feel guilty for how you are feeling.

I think you have seen things being a nurse and your mind is telling you

things you really don't want to think right now. Especially if the disease

is truly progressing. I've been thinking of you guys a lot especially when

you weren't on line and then you popped up and told us why and it was a relief

for me. I'm saying a little prayer for you all right now just to ease your

fears and what is happening to you all as a family. In a way it is good

if you are ready to have her go to heaven. It's one of the steps on death

and dying. We all hate to think that; but it is healthy if you can think

and feel that way. Of course I'm not in your shoes and if that time ever

comes for me; I may feel differently. The mysteries of life. Especially

with our children. We dislike to see them suffer and be challenged. I hope

you can get some answers from this group.

Nerenhausen

mom to Leah

kathy boone wrote:

Hi all,

Once again I am asking for some help. Last night Amie called and

wanted me to come over as Audrey was having some problems. When I got there

Audrey was very restless and jerky. The jerking was like her seizures, it

was like she was having horrible muscle spasms over her whole body, plus

she was doing a different thing with her eyes, that I can't quite explain.

Her pupils were slightly dilated, and she kept rolling her eyes back like

she does when she is trying to go to sleep, but then she would jerk, her

eyes would open but we aren't sure if she was seeing or not. We called the

doctor and he told us to give her some Klonopin but he was very reluctant

to do that. He is afraid anything will affect her respiratory drive. She

has been having more problems this last week with increased congestion in

spite of the use of her Vest twice daily, plus more problems with reflux,

her muscles are now non-existent, as they have atrophied to th! e point they are not there. The Doctor told Amie last week that he feels the disease

is really progressing.

I guess what I am asking of those of you that have been through this

is a couple of things. One, what did you give to your children to calm them

down so they weren't in distress? I told Amie last night that I think Audrey

was in pain and she isn't able to tell us. Amie is afraid to give Audrey

anything because fo what the Doctor said about affecting her respiratory

drive but I did tell Amie they may have to make a choice between having her

like she was last night and taking a chance on the meds.

I hate what this disease is doing to Audrey! She has suffered so

much. When I see her like she was last night I think I am ready for her

to go to heaven, but then I feel so guilty for feeling that way that I hate

mayself. The thought for loosing her terrifies me but the thought of her

in pain is worse.

What can we do? Any help would be greatly appreciated.

Kathy, grandma to Audrey, 3 years

Please contact mito-owner with any problems or questions.

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[Guest guest]

Kathy,

I'm so sorry Audrey is suffering so. When you explained what Audrey was doing, it sounded just like what Lindsey did last week when she had her monster seizure. The funny thing with the eyes...Lindsey's rolled back and to the side. She did have her eyes open but, was not alert to her surroundings.

I like Deb's idea of trying Neurontin. We have not tried that drug but, what I have read about it sounds like it works effectively. We give Diastat and yes, it does relax the system so sometimes their breathing is relaxed and they need oxygen to get their sats up. It's like finding the lesser of two evils...easing her pain or helping her to breathe. I hate the thought of you even having to make those decisions.

Please know that I pray for Audrey and all of you. Audrey is so lucky to have such a loving family. Please give her a big hug from all of us!

Kim - Mom to and Lindsey (3) Partial Complex I

Audrey very restless

Hi all,

Once again I am asking for some help. Last night Amie called and wanted me to come over as Audrey was having some problems. When I got there Audrey was very restless and jerky. The jerking was like her seizures, it was like she was having horrible muscle spasms over her whole body, plus she was doing a different thing with her eyes, that I can't quite explain. Her pupils were slightly dilated, and she kept rolling her eyes back like she does when she is trying to go to sleep, but then she would jerk, her eyes would open but we aren't sure if she was seeing or not. We called the doctor and he told us to give her some Klonopin but he was very reluctant to do that. He is afraid anything will affect her respiratory drive. She has been having more problems this last week with increased congestion in spite of the use of her Vest twice daily, plus more problems with reflux, her muscles are now non-existent, as they have atrophied to the point they are not there. The Doctor told Amie last week that he feels the disease is really progressing.

I guess what I am asking of those of you that have been through this is a couple of things. One, what did you give to your children to calm them down so they weren't in distress? I told Amie last night that I think Audrey was in pain and she isn't able to tell us. Amie is afraid to give Audrey anything because fo what the Doctor said about affecting her respiratory drive but I did tell Amie they may have to make a choice between having her like she was last night and taking a chance on the meds.

I hate what this disease is doing to Audrey! She has suffered so much. When I see her like she was last night I think I am ready for her to go to heaven, but then I feel so guilty for feeling that way that I hate mayself. The thought for loosing her terrifies me but the thought of her in pain is worse.

What can we do? Any help would be greatly appreciated.

Kathy, grandma to Audrey, 3 yearsPlease contact mito-owner with any problems or questions.

[Guest guest]

I don't have any advice, just wanted to let you know Audrey will be in our

prayers. You are an amazing grandmother. Amie is so blessed to have you

living close and able to come over easily to help her. I am sure it eases

her mind some to know not only that you are there, but that medically you

are able to help too due to your nurses training. I am sure it is hard to

watch Audrey suffer and the feeling you are having are very normal. We were

prepared and at times prayed for Asenath's suffering to end back when her

migraines were continual and so horrible in 2002. No parent or grandparent

can watch the suffering without these mixed emotions. Thank you for

communicating to us.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Audrey very restless

> Hi all,

>

> Once again I am asking for some help. Last night Amie called and wanted

> me to come over as Audrey was having some problems. When I got there

> Audrey was very restless and jerky. The jerking was like her seizures, it

> was like she was having horrible muscle spasms over her whole body, plus

> she was doing a different thing with her eyes, that I can't quite explain.

> Her pupils were slightly dilated, and she kept rolling her eyes back like

> she does when she is trying to go to sleep, but then she would jerk, her

> eyes would open but we aren't sure if she was seeing or not. We called

> the doctor and he told us to give her some Klonopin but he was very

> reluctant to do that. He is afraid anything will affect her respiratory

> drive. She has been having more problems this last week with increased

> congestion in spite of the use of her Vest twice daily, plus more problems

> with reflux, her muscles are now non-existent, as they have atrophied to

> the point they are not there. The Doctor told Amie

> last week that he feels the disease is really progressing.

>

> I guess what I am asking of those of you that have been through this is a

> couple of things. One, what did you give to your children to calm them

> down so they weren't in distress? I told Amie last night that I think

> Audrey was in pain and she isn't able to tell us. Amie is afraid to give

> Audrey anything because fo what the Doctor said about affecting her

> respiratory drive but I did tell Amie they may have to make a choice

> between having her like she was last night and taking a chance on the

> meds.

>

> I hate what this disease is doing to Audrey! She has suffered so much.

> When I see her like she was last night I think I am ready for her to go to

> heaven, but then I feel so guilty for feeling that way that I hate

> mayself. The thought for loosing her terrifies me but the thought of her

> in pain is worse.

>

> What can we do? Any help would be greatly appreciated.

>

> Kathy, grandma to Audrey, 3 years

>

[Guest guest]

Kathy,

We use amitriptyline on Lucas. He was frequently

restless and seemed to be in pain. It was recommended

by our palliative care doctor. It has been wonderful

for Lucas. He was having muscle spasming of his legs

and would not sleep through the night including a 48

hour stint without sleeping. You walk in his room and

wonder if he is breathing since he sleeps so calm now.

He too has had respiratory problems and yet it has

been good for him. Loriann

--- kathy boone wrote:

> Hi all,

>

> Once again I am asking for some help. Last night

> Amie called and wanted me to come over as Audrey was

> having some problems. When I got there Audrey was

> very restless and jerky. The jerking was like her

> seizures, it was like she was having horrible muscle

> spasms over her whole body, plus she was doing a

> different thing with her eyes, that I can't quite

> explain. Her pupils were slightly dilated, and she

> kept rolling her eyes back like she does when she is

> trying to go to sleep, but then she would jerk, her

> eyes would open but we aren't sure if she was seeing

> or not. We called the doctor and he told us to give

> her some Klonopin but he was very reluctant to do

> that. He is afraid anything will affect her

> respiratory drive. She has been having more

> problems this last week with increased congestion in

> spite of the use of her Vest twice daily, plus more

> problems with reflux, her muscles are now

> non-existent, as they have atrophied to the point

> they are not there. The Doctor told Amie

> last week that he feels the disease is really

> progressing.

>

> I guess what I am asking of those of you that have

> been through this is a couple of things. One, what

> did you give to your children to calm them down so

> they weren't in distress? I told Amie last night

> that I think Audrey was in pain and she isn't able

> to tell us. Amie is afraid to give Audrey anything

> because fo what the Doctor said about affecting her

> respiratory drive but I did tell Amie they may have

> to make a choice between having her like she was

> last night and taking a chance on the meds.

>

> I hate what this disease is doing to Audrey! She

> has suffered so much. When I see her like she was

> last night I think I am ready for her to go to

> heaven, but then I feel so guilty for feeling that

> way that I hate mayself. The thought for loosing

> her terrifies me but the thought of her in pain is

> worse.

>

> What can we do? Any help would be greatly

> appreciated.

>

> Kathy, grandma to Audrey, 3 years

>

[Guest guest]

Kathy, I am so sorry to hear about the pain and suffering Audrey

your family are going through. I am always saying a prayer for you.

Geri-Anne and Wyatt, complex I

> Hi all,

>

> Once again I am asking for some help. Last night Amie called and

wanted me to come over as Audrey was having some problems. When I

got there Audrey was very restless and jerky. The jerking was like

her seizures, it was like she was having horrible muscle spasms over

her whole body, plus she was doing a different thing with her eyes,

that I can't quite explain. Her pupils were slightly dilated, and

she kept rolling her eyes back like she does when she is trying to go

to sleep, but then she would jerk, her eyes would open but we aren't

sure if she was seeing or not. We called the doctor and he told us

to give her some Klonopin but he was very reluctant to do that. He

is afraid anything will affect her respiratory drive. She has been

having more problems this last week with increased congestion in

spite of the use of her Vest twice daily, plus more problems with

reflux, her muscles are now non-existent, as they have atrophied to

the point they are not there. The Doctor told Amie

> last week that he feels the disease is really progressing.

>

> I guess what I am asking of those of you that have been through

this is a couple of things. One, what did you give to your children

to calm them down so they weren't in distress? I told Amie last

night that I think Audrey was in pain and she isn't able to tell us.

Amie is afraid to give Audrey anything because fo what the Doctor

said about affecting her respiratory drive but I did tell Amie they

may have to make a choice between having her like she was last night

and taking a chance on the meds.

>

> I hate what this disease is doing to Audrey! She has suffered so

much. When I see her like she was last night I think I am ready for

her to go to heaven, but then I feel so guilty for feeling that way

that I hate mayself. The thought for loosing her terrifies me but

the thought of her in pain is worse.

>

> What can we do? Any help would be greatly appreciated.

>

> Kathy, grandma to Audrey, 3 years

[Guest guest]

dear kathy,

i am so sorry for you and your grandbaby. karlee beth done this. her

neuro told us to give klonipin, but he was worried about the resp. we

gave it to her. sometimes i felt it might have been working. i dont

think anything really helped. we tried it all! amitriptiline,

valium , keppra, morphine, duragesic patch, diastat, tylenol. at

tines i thought they were working. i just felt she was in pain and i

wanted to make sure she was comfortable. deb had told me over the

phone to ask the doc to give karlee neurotin. they wouldnt do it. i

think that is the only med that we did not try. i felt so bad for

karlee beth, i was afraid i was drugging her, they kept telling me

that we werent. i finally realized that i was not going to overdose

her.

this is so hard. and i am so so sorry. i hope her day has gotten

better. you and your family are in my thoughts. just keep on the docs

and hopefully they will listen and try to make audrey comfortable.

davonne,

moma to karlee beth 11-14-02 8-10-04, kaitlin 8, and karson 3