Re: being weepy: was School saga - Part 2 - Lunch issues

[Guest guest]

In a message dated 9/25/02 10:18:07 PM Pacific Daylight Time, kass@...

writes:

<< She ate a sandwich (actually really just the

meat in it) and had a little bit of soda, and then suddenly just crashed

out of no where. >>

Kass,

Normal disclaimer in that, of course I'm just another mom, not a doctor, so

just offering my experiences here with our family....... If has meat

(protein/fat) and simple sugars (soda), he'll do exactly the same

thing.....especially with energy expenditure or heat added in. He has done

so much better on the low fat, higher complex carb/lower protein diet, but

still decompensates quickly with heat and exercise...especially heat. And,

" heat " here is ANY activity in 73 or so plus degree weather. Seriously, if

we were in Texas or another warm climate, we'd REALLY be in trouble. I often

think that is why does better than many of the other children on this

listserv, because we live in about the coolest year around climate in the

USA. (As an aside, I'm really surprised that there hasn't been more of an

influx of diagnosed mito patients into the Puget Sound area, because of our

temperatures. Maybe it's because we're still in the hinterland of mito

recognition/care here.)

Hope she is doing better soon! Dena

[Guest guest]

There really isn't a website, but the fodsupport.org website has some good

low fat recipes and we just try to stay away from fried, fatty foods and have

carbs available ALL the time. We try to stay away from simple sugars. When

we eat out, their favorite fast food meal is a baked potato with margarine

and a side salad from s.

I'm on the way to take the boys to their Japanese class, but I'll try to

write more later.

Dena

[Guest guest]

what kind of soda? it's just my opinion perhaps but I think soda is awful

for all of us, even though I love Coke and have a love/hate relationship

with it. i don't let have it at all. my daughter, who we have not

had tested but i see signs in her as well, can tolerate Coke, but gets ill

stomach, irritable, behaviour changes - mood swings, crying at the least

little thing- with 7 Up or sprite. They do have different ingredients, of

course. oh, and sprite gives me heart palpitations.

last year when was crying for hours at a time every day, it was due

to extra emotional stress added to lack of certain nutrients he was getting.

when we cleared up the nutrition, the crying went away, although he still

has alot of anxiety about the issue that was stressing him out at that time.

but now he just wants to discuss it (death) a lot.

cara

Re: being weepy: was " School saga - Part 2 - Lunch issues "

> In a message dated 9/25/02 10:18:07 PM Pacific Daylight Time,

kass@...

> writes:

>

> << She ate a sandwich (actually really just the

> meat in it) and had a little bit of soda, and then suddenly just crashed

> out of no where. >>

>

> Kass,

> Normal disclaimer in that, of course I'm just another mom, not a doctor,

so

> just offering my experiences here with our family....... If has

meat

> (protein/fat) and simple sugars (soda), he'll do exactly the same

> thing.....especially with energy expenditure or heat added in. He has

done

> so much better on the low fat, higher complex carb/lower protein diet, but

> still decompensates quickly with heat and exercise...especially heat.

And,

> " heat " here is ANY activity in 73 or so plus degree weather. Seriously,

if

> we were in Texas or another warm climate, we'd REALLY be in trouble. I

often

> think that is why does better than many of the other children on

this

> listserv, because we live in about the coolest year around climate in the

> USA. (As an aside, I'm really surprised that there hasn't been more of an

> influx of diagnosed mito patients into the Puget Sound area, because of

our

> temperatures. Maybe it's because we're still in the hinterland of mito

> recognition/care here.)

>

> Hope she is doing better soon! Dena

>

>

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

>

>

[Guest guest]

Hi Dena :-)

THANKS for sharing what you are seeing there. I tend to have more

faith in what other moms see (particularly when it comes to mito) than

the docs most of the time anyway......how many times have we all heard

this or that just cannot be happening to later have it proven it was.

Most docs have a hard time thinking outside the box, while us moms have

learned we don't have much choice in the matter. So what you share

here means alot to me, and makes me seriously stop and think.

Considering the ketone issues we have with Madison, I always pay special

attention to what you share here.

Madison too really shouldn't be out in anything over 75 (seems to be

our temp cut off thus far) and we are generally very careful about this,

just occasionally push it for special occasions and I think too because

I guess there is some hope maybe she can tolerate more than we think.

I always seem to regret and wish we had just stuck to what we know is the

case.....grrrrrr. I'll learn won't I!!! Living in Texas

though, honestly she misses SO much because there is such a small window

of temps she can tolerate. This year she's having problems with the

cold too, so our window closes a little more I am afraid (we'll have to

see when the temps finally drop lower exactly what and how she tolerates

it). I WISH we lived where you are!!!! We talk about moving

frequently, just to allow her more experiences, but with all our family

support here its not something thats really an option in the end.

:-(

I'd really like to try and experiment and see how she does.........do

you know of a good website or book that could help me with following a

diet like your kids are on?? I admit to being totally clueless when

it comes to food, but have made the committment to make diet changes this

year while we have Chance home from school (his issues are different when

it comes to foods, but significant and definatly need to be addressed).

I have a feeling some diet changes would make a difference for all of us,

knowing how significant they can be in all the different scenarios we have

playing out over here. Anyway......if you have ANY resources for

me, I'd be incredibly appreciative!!!

BIG hugs,

Kass

waislandgirl@... wrote:

In a message dated 9/25/02 10:18:07 PM

Pacific Daylight Time, kass@...

writes:

<< She ate a sandwich (actually really just the

meat in it) and had a little bit of soda, and then suddenly just

crashed

out of no where. >>

Kass,

Normal disclaimer in that, of course I'm just another mom, not

a doctor, so

just offering my experiences here with our family.......

If has meat

(protein/fat) and simple sugars (soda), he'll do exactly the same

thing.....especially with energy expenditure or heat added in.

He has done

so much better on the low fat, higher complex carb/lower protein

diet, but

still decompensates quickly with heat and exercise...especially

heat. And,

"heat" here is ANY activity in 73 or so plus degree weather.

Seriously, if

we were in Texas or another warm climate, we'd REALLY be in trouble.

I often

think that is why does better than many of the other children

on this

listserv, because we live in about the coolest year around climate

in the

USA. (As an aside, I'm really surprised that there hasn't

been more of an

influx of diagnosed mito patients into the Puget Sound area, because

of our

temperatures. Maybe it's because we're still in the hinterland

of mito

recognition/care here.)

Hope she is doing better soon! Dena

[Guest guest]

Amazing Maggie!!!! I "love" trying to explain these symptoms to the

school and others taking care of her and convincing them that it MEANS

something is not right and they need to take them seriously. It was

literally the only clues we had that there was something wrong last year

when she developed severe acidosis, and the only additional symptom was

vomiting. Ultimatly, its usually all we have to go on when she is

crashing and makes monitoring her and being VERY observant so vital.

It doesn't help either that she is already a pale child to begin with!!!!

The weeping and begging to go home is NEW!!! LOL She is

usually virtually non-verbal and just doesn't seem to have the energy to

react when she gets into this state, finding it difficult to even respond

to anything we say to her. The school loved this too when I told

them she wasn't likely to SAY something if she is having a problem!!!

Its all just SO easy to miss with her, as I am sure you see with Mamie

Rose (BTW, LOVE the name) too.

It IS "nice" to know there are others out there seeing the same things......sort

of gives what we have observed and know some more credibility!!!

Just wish I could completely understand whats happening during those times.....or

actually, WHY she responds the way she does is more like it. It sure

makes things more complicated sometimes.

BIG hugs,

Kass

orrmullane@... wrote:

In a message

dated 9/26/2002 1:18:23 AM Eastern Standard Time, kass@... writes:

She

gets that pale look with dark circles under her

eyes, slumps in her chair, gets very

floppy, and then she just started

weeping begging to please just go

home.

Oh my heavens, this is just exactly

what Mamie Rose does. You've described it perfectly. Except

the weeping begging to go home part. Mamie Rose just signs "home,

mom". I didn't know there were other kids out there like her.

Maggie

[Guest guest]

Hi Cara :-)

Actually had to sit here and think for a second which kind it was!!!

It was root beer I am pretty sure. I am actually pretty anti-soda

with the kids too, and they never get it here at home (except for maybe

a sip of mine every once in a while), but we tend to go along with it when

they get a kids meal and there are not really any other options.

I really should have just had her drink water, just didn't think about

it at the time. Interestingly, considering how most kids LOVE soda,

she has never been a big fan and actually will order milk or water when

we are out at restaurants, even if the option for a soda is there, and

she never drinks more than a few sips when we get it for her otherwise

(one would think I would GET A CLUE and just quit getting it for her huh!!??

LOL).

Thanks a ton for sharing what you have seen over there with this kind

of thing. Makes sense!!! Wondering how you determined

was lacking some nutrients he needed??? As I mentioned in another

email, I am wanting to make some diet changes and am looking for information

on the different things we can look at to see if its having an impact on

things here.

We don't have any real signs that she is emotionally stressed, but then

she's alot like her brother and tends to internalize these things, so its

hard to say. Definatly something I'll look for and see if it might

be playing a role. My guess is that its when she starts to feel bad/gets

tired and its the only response she can muster, its just NOT her typical

reaction to things at all, so is interesting.

Thanks again for the feedback!!!

BIG hugs,

Kass

"C. Waller" wrote:

what kind of soda? it's just my opinion

perhaps but I think soda is awful

for all of us, even though I love Coke and have a love/hate relationship

with it. i don't let have it at all. my daughter,

who we have not

had tested but i see signs in her as well, can tolerate Coke, but

gets ill

stomach, irritable, behaviour changes - mood swings, crying at

the least

little thing- with 7 Up or sprite. They do have different

ingredients, of

course. oh, and sprite gives me heart palpitations.

last year when was crying for hours at a time every day,

it was due

to extra emotional stress added to lack of certain nutrients he

was getting.

when we cleared up the nutrition, the crying went away, although

he still

has alot of anxiety about the issue that was stressing him out

at that time.

but now he just wants to discuss it (death) a lot.

cara

[Guest guest]

Kass,

I believe it was amino acid testing that pointed out he had some possibilities that his nutrition was not adequate. Some of them were elevated that are common in metabolic conditions, or so I have been told, but some others may have been diet related.

At the time he was so distressed for hours every day and I just had a gut feeling that he needed more B vitamins. I started letting him eat wheat again, higher in B's than other flours we were using, and he got better. It was pretty dramatic so I don't think it was the grief therapy he was getting, especially since he still talks about dying several times a day for a moment or two.

cara

Re: being weepy: was "School saga - Part 2 - Lunch issues"

Hi Cara :-) Actually had to sit here and think for a second which kind it was!!! It was root beer I am pretty sure. I am actually pretty anti-soda with the kids too, and they never get it here at home (except for maybe a sip of mine every once in a while), but we tend to go along with it when they get a kids meal and there are not really any other options. I really should have just had her drink water, just didn't think about it at the time. Interestingly, considering how most kids LOVE soda, she has never been a big fan and actually will order milk or water when we are out at restaurants, even if the option for a soda is there, and she never drinks more than a few sips when we get it for her otherwise (one would think I would GET A CLUE and just quit getting it for her huh!!?? LOL). Thanks a ton for sharing what you have seen over there with this kind of thing. Makes sense!!! Wondering how you determined was lacking some nutrients he needed??? As I mentioned in another email, I am wanting to make some diet changes and am looking for information on the different things we can look at to see if its having an impact on things here. We don't have any real signs that she is emotionally stressed, but then she's alot like her brother and tends to internalize these things, so its hard to say. Definatly something I'll look for and see if it might be playing a role. My guess is that its when she starts to feel bad/gets tired and its the only response she can muster, its just NOT her typical reaction to things at all, so is interesting. Thanks again for the feedback!!! BIG hugs, Kass "C. Waller" wrote: what kind of soda? it's just my opinion perhaps but I think soda is awful for all of us, even though I love Coke and have a love/hate relationship with it. i don't let have it at all. my daughter, who we have not had tested but i see signs in her as well, can tolerate Coke, but gets ill stomach, irritable, behaviour changes - mood swings, crying at the least little thing- with 7 Up or sprite. They do have different ingredients, of course. oh, and sprite gives me heart palpitations. last year when was crying for hours at a time every day, it was due to extra emotional stress added to lack of certain nutrients he was getting. when we cleared up the nutrition, the crying went away, although he still has alot of anxiety about the issue that was stressing him out at that time. but now he just wants to discuss it (death) a lot. caraPlease contact mito-owner with any problems or questions.

[Guest guest]

We have had this issue going on forever with Miranda. She HATES to go out. It makes us all insane. Even if its something thats enjoyable, she still just wants to stay home. Then when we do manage to get her to where we are going, within a short time, she says, "go home now" and gets very whiney. For instance our local fair is going on now, we had to bribe her to get her there! ( and food and rides certainly dont work) I always just assumed it was from whenever we went out, it was to go to the dr!!

She gets that pale look with dark circles under hereyes, slumps in her chair, gets very floppy, and then she just startedweeping begging to please just go home.Oh my heavens, this is just exactly what Mamie Rose does. You've described it perfectly. Except the weeping begging to go home part. Mamie Rose just signs "home, mom". I didn't know there were other kids out there like her.Maggie

[Guest guest]

In a message dated Thu, 26 Sep 2002 2:31:20 PM Eastern Standard Time,

lappan@... writes:

> We have had this issue going on forever with Miranda. She HATES to go out. It

makes us all insane. Even if its something thats enjoyable, she still just wants

to stay home. Then when we do manage to get her to where we are going, within a

short time, she says, " go home now " and gets very whiney. For instance our local

fair is going on now, we had to bribe her to get her there! ( and food and rides

certainly dont work) I always just assumed it was from whenever we went out, it

was

> to go to the dr!!

>

It's just the opposite with . He wants to " go, go, go " but then he wilts.

That's why we got the folding wheelchair, so that I can ask him " how are you

feeling today " when we get at our destination and I let HIM decide if he wants

to walk or use the wheelchair. When we went to see and ,

was feeling okay but wasn't, so he used the wheelchair because of

extreme fatigue and a bit of a cough. I said that they need a double w/c

sometimes. Fortunately, we haven't had an outing where they've been extra

fatigued at the same time. I hope that day never comes.

Dena

[Guest guest]

Miranda does have a convaid stroller that tilts, so she just rides in that when we are out and often sleeps. She just hates to go out. She will be 6 in December

Re: being weepy: was "School saga - Part 2 - Lunch issues"

> We have had this issue going on forever with Miranda. She HATES to go out. It makes us all insane. Even if its something thats enjoyable, she still just wants to stay home. Then when we do manage to get her to where we are going, within a short time, she says, "go home now" and gets very whiney. For instance our local fair is going on now, we had to bribe her to get her there! ( and food and rides certainly dont work) I always just assumed it was from whenever we went out, it was > to go to the dr!!>It's just the opposite with . He wants to "go, go, go" but then he wilts. That's why we got the folding wheelchair, so that I can ask him "how are you feeling today" when we get at our destination and I let HIM decide if he wants to walk or use the wheelchair. When we went to see and , was feeling okay but wasn't, so he used the wheelchair because of extreme fatigue and a bit of a cough. I said that they need a double w/c sometimes. Fortunately, we haven't had an outing where they've been extra fatigued at the same time. I hope that day never comes.DenaPlease contact mito-owner with any problems or questions.

[Guest guest]

For instance our local fair is going on now, we had to bribe her to get her there! ( and food and rides certainly dont work) I always just assumed it was from whenever we went out, it was to go to the dr!!

...

ours is in town too... has always LIVED for the fair...asks about it all year! We went and he had major meltdowns (they seem to happen more when we are out) and only rode two rides and then asked to go ride more later after we had eaten and then decided he ws too tired. So unlike him! Also, he got chilled (we put the jacket on) and had a hard time getting the shiver off...this happened the other night at our house too...after that he just zonked out...like crashed tired...anyone know about that?

you don't live in the memphis area do you?

deb

[Guest guest]

In a message dated 9/26/02 9:24:43 PM Pacific Daylight Time,

VisibleWorship@... writes:

<< Also,

he got chilled (we put the jacket on) and had a hard time getting the shiver

off...this happened the other night at our house too. >>

This is common with autonomic dysfunction/lack of temp. control. R.

will either be too hot or chill very easily. I try to encourage him to put a

jacket on early, as the temp. starts dropping for the evening. And, he uses

a wet suit for swimming, even at an indoor pool.

Dena

[Guest guest]

Hi Deb,

We are in North Eastern PA. Smal town called Berwick ( anyone else close by??) We live near the Bloomsburg fair, which is the next town over.

Re: being weepy: was "School saga - Part 2 - Lunch issues"

For instance our local fair is going on now, we had to bribe her to get her there! ( and food and rides certainly dont work) I always just assumed it was from whenever we went out, it was to go to the dr!!...ours is in town too... has always LIVED for the fair...asks about it all year! We went and he had major meltdowns (they seem to happen more when we are out) and only rode two rides and then asked to go ride more later after we had eaten and then decided he ws too tired. So unlike him! Also, he got chilled (we put the jacket on) and had a hard time getting the shiver off...this happened the other night at our house too...after that he just zonked out...like crashed tired...anyone know about that?you don't live in the memphis area do you?deb Please contact mito-owner with any problems or questions.

[Guest guest]

It was literally the only clues we had that there was something wrong last year when she developed severe acidosis

Hi Kass,

I find this so interesting. Mamie Rose has never been acidotic that we knew about. But then we're at the beginning stages of knowing about this disease, and have lots more to learn!

Maggie