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Re: Children Not Eating & Weird Eye Blinking/Squinting

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Becky,

Avery sounds so much like my Max. Mcdonalds french fries, been there,

done that. Now he barely eats those. Don't worry about what other people

think. Most of us know that we would do anything to get our kids to

eat. I let Max eat potato chips. Sour cream and onion. He likes salty

and sweet food only. He doesn't eat any fruit or veggies. Only sweets

and breads (carbohydrates) Right now we are in another barely eating

stage. He's had 2 bites of cookie, a few french fries and a few chips

today. He had 4 cups of milk. Max also used a bottle for a very long

time. I took it when he was 2yrs 3 or 4 mths. He still lives mostly on

milk. Preferably chocolate. We add some pedisure, chocolate of course.

As far as we know Max is unaffected, but we will be seeing a

neurologist in March. He has had three speech regressions. He has

gotten his speech back, but doesn't speak clearly. He had a weird

episode of something. He woke up screaming and slurring his speech.

After that he had several problems with his tongue. He would tell me

that it hurt and then talk like his tongue wasn't working right. He woke

up on another occasion and just asked me to come and pick him up. I put

him in bed with me and his arms and legs twitched. So I can relate to

the constant fear of something being terribly wrong. None of my

children have had seizures, but this wrorries me.

Sorry now I'm in competition for the longest post. I could keep going,

but I'll give you all a break.

Thanks for listening and Becky you can say too much anytime you please.

Barbara

mom to 5, Max 2 1/2, reflux and Corbin 17mths, possible mito,

reflux, asthma, enchephalopathy, oral motor and motor planning dyspraxia

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Becky,

You are very welcome. It's nice to help someone for a change. I feel

like I'm always asking questions. It is so nice to talk with people who

understand, isn't it?

Have a good night. and I hope to talk with you soon,

Barbara

Mom to 5, Max 2 1/2, reflux and Corbin 17mths, possible mito,

reflux, asthma, encephalopathy, oral motor and motor planning dyspraxia

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In a message dated 02/24/2000 10:53:41 PM Pacific Standard Time,

beckyg@... writes:

> Can anyone tell me why our kids don't want to eat or can't

> eat? Is it because of the muscles in the mouth/throat and the

> swallowing issue? Avery always seems to gag and/or have a hard time

> swallowin

doesn't eat much at all either. At times though, he has eaten almost

normally. Part of it was reflux adn esophagitis, but part of it isn't. He

has a fundoplication now, and I thought originally it could be a little too

tight making eating uncomfortable . . . the food gets backed up at the site

maybe. But even that doesn't exactly fit with his behavior. gags some,

too, but he has had multiple swallow studies that show his swallowing is

quite normal with a variety of textures, so it has been concluded that he

does not have a muscular or structural swallowing problem. I really think he

just doesn't feel the drive to eat like the rest of us do. So he eats a

little and we concentrate on working with him to enjoy the social aspect of

mealtimes, and we tube feed him for most of his nutrition. It works better

than the fight to get him to eat orally--which resulted in intractable

failure to thrive. I am told that sometimes children with mito whose eating

patterns are like will start to eat around school age. We will see.

But for now, I am happy with his pump and occasional bolus feedings to

supplement his horrible oral intake! It works for us.

Kathy Corley

mom to and

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Posted

Becky, I don't post often either, but I do have a little input on this

issue. For us, the best thing we ever did was to get a G-tube

(button). She has gone through stages of eating and not eating for years.

My take on it has been that her brain just doesn't provide the stimulus for

hunger. If you think about what the mitochondrial disease does to the

brain, it makes sense that not all things are working right. She also has a

high tolerance for pain, which I also attribute to brain dysfunction. In

the end, it is helpful to have specific diagnostic reasons for things if you

can help the situation, but for us, nothing helped and we ended up getting

the tube far later than we should have.

Additionally, I wouldn't begin to make nutritional decisions for you, but if

he likes the bottle, you might want to take to your pediatrician or

gastroenterologist about using something like Pediasure rather than milk.

For , we alternate the Pediasure with fiber and the plain Pediasure

because of constipation issues. Best of luck, ML

--

Lou

mom to ,14 Complex I & III (our happy,little entertainer); Jeff 16 and

Greg 10 (typical active boys)

----------

>

>To: Mitoonelist

>Subject: Children Not Eating & Weird Eye Blinking/Squinting

>Date: Tue, Feb 22, 2000, 2:41 AM

>

>

>

> First of all I have to tell you all how much support you have been

> giving me on a daily basis. I have only posted a couple of times but

> I look forward to getting the digest every day and reading it and

> feeling like I am not alone.

> Finally a topic hit REALLY close to home. That is the topic of not

> eating. Can anyone tell me why our kids don't want to eat or can't

> eat? Is it because of the muscles in the mouth/throat and the

> swallowing issue? Avery always seems to gag and/or have a hard time

> swallowing.

> My son has Complex III and he doesn't eat much at all. He takes

> bottles of whole milk for most of his nutrition and then there are

> the vitamins/supplements too. Right now he will eat baked beans

> (about 10-20 at dinner), canned peaches, multi-grain Cheerioes and

> some bread. And ... last but not least (yeah right, lol!) he will eat

> French Fries from Mcs. In fact a week ago when he got a cold

> from his sister that is all he ate for 3 days because that is the

> only thing WHATSOEVER that he would even look at. I really am not a

> bad mom that feeds my kids Happy Meals everyday but I knew that was a

> favorite of his and wanted him to eat something. That is just about

> it. I am at my wits end.

> He hasn't been to the doctor lately so I should be happy about that

> but I am worried that he has lost some weight. He seems to be feeling

> okay at least for Avery.

> He will be 2 in May and just started walking the past two months. A

> couple of days ago there were some posts about energy levels and

> sleeping patterns. My son too gets more energy in the evenings. He

> will stay up 'till midnight and then want to sleep 'till noon. I

> think everyone thinks I am a bad mom and just don't try hard enough

> to get him on a schedule.

> Folks, I am so sorry for such a long post. I really am but I have one

> more important question. Avery has been doing this really weird thing

> with his eyes lately. He blinks and squints them all of the time and

> sometimes it looks like he is trying to do it and at other times in

> looks involuntary or neurological or something like that. It seems

> like if my daughter would have done this I would have just thought

> that she was " going through a stage " or something but when Avery does

> something new I am convinced constantly that he has some new thing

> going wrong with him, that he is going to get REALLY sick and that he

> is going to die. It is completely awful to feel so paranoid all of

> the time. I am trying to be thankful for every day I have instead of

> the constant worrying but I am having a bad day today.

> For all of you out there that know about seizures and related issues

> does this at all sound familiar? Avery has never had an EEG and in

> fact I don't know much about them. The Dr. said that Avery might have

> seizures and that we will just need to watch him. Sometimes too it

> seems like he kind of spaces out which I have read can sort of be

> like a petit mal seizure.

> Any advice or input on the eating and/or the possible seizure

> activity?

> Thanks everyone for all of the support that you don't even know you

> give me every day. I am a silent part of your community. Just when I

> do talk I say too much. Sorry again for this being so long.

> Becky

> Mom to Avery (21 Months Old, Complex III, big Teletubbie fan) and

> (3 1/2 going on 13, unaffected?, Gymnastics/Ballet fan.)

>

>

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

> Get what you deserve with NextCard Visa! Rates as low as 2.9%

> Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

> no hidden fees, and much more! Get NextCard today and get the

> credit youdeserve! Apply now! Get your NextCard Visa at:

> http://click./1/912/1/_/368657/_/951461504/

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

>

> Brought to you by www.imdn.org - an on-line support group for those

> affected by mitochondrial disease.

>

>

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Hi Becky, My daughter is 2 1/2, with possible mito diorder. She

has motor developmental delays and a history of siezures. She also does the

obscure blinking and eye movements. I often thought they were seizures, or

some type of neurological activity. She has had multiple eeg's, mostly in

her first year of life when she was blatently having seizures, some eeg's

were mildly abnormal, but her last three were normal, even with these odd

eye movements. So go figure it out. Drs. have no clue. I personally feel

it could be something, but since she has gotten older they have definatly

decreased. Her cognitive development seems to be normal, though she is just

starting to walk along furniture--she'll be 3 in July. If Avery has never

had an EEG perhaps it may be something to consider. Has he had an MRI?

's was normal. If he has an eeg done and he doesn't do the eye

movements then nothing may show. It will be interesting hearing what others

have to say. Hang in the good days will out number the bad.

Randee (mom to 2 1/2-hypotonia, macrocephally, high arched, narrow

palate, ? mito, sweet little elmo crazed angel, ph 7, and Kerri almost

6)

Children Not Eating & Weird Eye Blinking/Squinting

>

>

> First of all I have to tell you all how much support you have been

> giving me on a daily basis. I have only posted a couple of times but

> I look forward to getting the digest every day and reading it and

> feeling like I am not alone.

> Finally a topic hit REALLY close to home. That is the topic of not

> eating. Can anyone tell me why our kids don't want to eat or can't

> eat? Is it because of the muscles in the mouth/throat and the

> swallowing issue? Avery always seems to gag and/or have a hard time

> swallowing.

> My son has Complex III and he doesn't eat much at all. He takes

> bottles of whole milk for most of his nutrition and then there are

> the vitamins/supplements too. Right now he will eat baked beans

> (about 10-20 at dinner), canned peaches, multi-grain Cheerioes and

> some bread. And ... last but not least (yeah right, lol!) he will eat

> French Fries from Mcs. In fact a week ago when he got a cold

> from his sister that is all he ate for 3 days because that is the

> only thing WHATSOEVER that he would even look at. I really am not a

> bad mom that feeds my kids Happy Meals everyday but I knew that was a

> favorite of his and wanted him to eat something. That is just about

> it. I am at my wits end.

> He hasn't been to the doctor lately so I should be happy about that

> but I am worried that he has lost some weight. He seems to be feeling

> okay at least for Avery.

> He will be 2 in May and just started walking the past two months. A

> couple of days ago there were some posts about energy levels and

> sleeping patterns. My son too gets more energy in the evenings. He

> will stay up 'till midnight and then want to sleep 'till noon. I

> think everyone thinks I am a bad mom and just don't try hard enough

> to get him on a schedule.

> Folks, I am so sorry for such a long post. I really am but I have one

> more important question. Avery has been doing this really weird thing

> with his eyes lately. He blinks and squints them all of the time and

> sometimes it looks like he is trying to do it and at other times in

> looks involuntary or neurological or something like that. It seems

> like if my daughter would have done this I would have just thought

> that she was " going through a stage " or something but when Avery does

> something new I am convinced constantly that he has some new thing

> going wrong with him, that he is going to get REALLY sick and that he

> is going to die. It is completely awful to feel so paranoid all of

> the time. I am trying to be thankful for every day I have instead of

> the constant worrying but I am having a bad day today.

> For all of you out there that know about seizures and related issues

> does this at all sound familiar? Avery has never had an EEG and in

> fact I don't know much about them. The Dr. said that Avery might have

> seizures and that we will just need to watch him. Sometimes too it

> seems like he kind of spaces out which I have read can sort of be

> like a petit mal seizure.

> Any advice or input on the eating and/or the possible seizure

> activity?

> Thanks everyone for all of the support that you don't even know you

> give me every day. I am a silent part of your community. Just when I

> do talk I say too much. Sorry again for this being so long.

> Becky

> Mom to Avery (21 Months Old, Complex III, big Teletubbie fan) and

> (3 1/2 going on 13, unaffected?, Gymnastics/Ballet fan.)

>

>

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

> Get what you deserve with NextCard Visa! Rates as low as 2.9%

> Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

> no hidden fees, and much more! Get NextCard today and get the

> credit youdeserve! Apply now! Get your NextCard Visa at:

> http://click./1/912/1/_/368657/_/951461504/

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

>

> Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

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Becky,

I can so completely relate to all you posted....we live that life around

here, too! Several things you said hit home and i want to take a simute to

respond.

first and foremost, keep in mind that there is NOTHING " typical about any of

our kids...so what hoold true for my Lexi may not be true for your

Avery...but there ARE similarities and that can surely be a ray of hope when

dealing with a chronically ill child.

so as far as WHY they don't eat, let me explain it from two different

perspectives: first the metabolic end the way my doc described it (help me

out here, everyone else!!) and then from tmy perspective as a speech

pathologist. Mitochondrial disorders are a form of metabolic disorder, which

essentially means that it is an issue of breaking down fats and sugars

ingested from food and turning them into usable energy. So for many of our

kids (again, it depends on the type of ito problems you are dealing with, but

IN GENERAL), their bodies don't properly metabolize the foods they eat. So

the body then sends out the signal to the brain that it isn't hungry (even

though the body SHOULD be ravenously hungry!!). This is a difficult issue!

I know with Lexi that the feeling of hunger is almost NEVER there...we have

to CONSTANTLY tell her to eat, although there is nothing that is really

enticing to her...

Now the other side of that coin is the whole issue of oral motor

skills...compounding the lack fo a DESIRE to eat is very often tremendous

difficulty with the whole bite/suck/chew/swallow coordination that is

required for each and every bite. If Avery is hypersensitive inside his

mouth or has difficulty coordinating the muscles it takes to bite, chew, form

a bolus of food, and swallow it without choking it is probably not a very

pleasant experience to even attempt to eat.....

finally on the issue of atypical types of seizures...what you described could

very well be a type of seizure (although i'm not a doctor...don't even play

one on TV :) ) and if it were my kid doing that i would have an in-depth

chat with the neurologist...it might well be time for an EEG. However, i

will warn you that even the EEG is not always conclusive (Lexi has had 4 of

them, none of which has ever shown anything conclusive...yet the seizures

persist). So i guess what i am trying to say is listen to that mother's (and

father's) instinct... when you see something atypical, follow up on it.

i wish i could make some profound statement that could make all of us feel

better about the constant state of STRESS we all feel from living with a

chronically ill child.....guess it's just not one of my talents :( i

think the only way our family survives it is one seond, one minute, one hour

and one day at a time.....sometimes the good moments ACTUALLY outweigh the

bad ones and those are the days i live for :)

sorry for the long response...hope it helps a little

ruth

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Hi everyone,

My childern have weird eating habits they eat alot of juke food

because I can't get them to eat real food like meat and veggiesexcept foe

McDs fries I too will buy a happymeal just to see them eat my son and

daughter are above height and weight .They don't eat well but I'm afraid if

they don't eat anything that they will get sick. If I even show them

something I'm eating they will gag to vomiting, even smells will get them

sick like chinnes food . I don't know what to do either, but the Doctors say

that their getting what they need to live. But if they had a btter diet I

wonder if it would help their delays.

Thnks for your time

Vange

Re: Children Not Eating & Weird Eye Blinking/Squinting

> From: KCorley309@...

>

> In a message dated 02/24/2000 10:53:41 PM Pacific Standard Time,

> beckyg@... writes:

>

> > Can anyone tell me why our kids don't want to eat or can't

> > eat? Is it because of the muscles in the mouth/throat and the

> > swallowing issue? Avery always seems to gag and/or have a hard time

> > swallowin

>

> doesn't eat much at all either. At times though, he has eaten almost

> normally. Part of it was reflux adn esophagitis, but part of it isn't.

He

> has a fundoplication now, and I thought originally it could be a little

too

> tight making eating uncomfortable . . . the food gets backed up at the

site

> maybe. But even that doesn't exactly fit with his behavior. gags

some,

> too, but he has had multiple swallow studies that show his swallowing is

> quite normal with a variety of textures, so it has been concluded that he

> does not have a muscular or structural swallowing problem. I really think

he

> just doesn't feel the drive to eat like the rest of us do. So he eats a

> little and we concentrate on working with him to enjoy the social aspect

of

> mealtimes, and we tube feed him for most of his nutrition. It works

better

> than the fight to get him to eat orally--which resulted in intractable

> failure to thrive. I am told that sometimes children with mito whose

eating

> patterns are like will start to eat around school age. We will see.

> But for now, I am happy with his pump and occasional bolus feedings to

> supplement his horrible oral intake! It works for us.

>

> Kathy Corley

> mom to and

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> http://click./1/911/1/_/368657/_/951482238/

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

>

> Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

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Posted
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Hi it's Vange again,

The eye thing my daughter looks at something across the room acloses one eye

.. and the happy meal thing I but alot of them , the sleep issue my kids want

to stay up all night but there up no later then 9am if their still asleep I

fear the worse and slow go their rooms to see if their ok .My kids sound

alot like yours. I'm going to Dr. Cohon monday so I'm taking note as I read

emails.

Children Not Eating & Weird Eye Blinking/Squinting

>

>

> >

> >

> > First of all I have to tell you all how much support you have been

> > giving me on a daily basis. I have only posted a couple of times but

> > I look forward to getting the digest every day and reading it and

> > feeling like I am not alone.

> > Finally a topic hit REALLY close to home. That is the topic of not

> > eating. Can anyone tell me why our kids don't want to eat or can't

> > eat? Is it because of the muscles in the mouth/throat and the

> > swallowing issue? Avery always seems to gag and/or have a hard time

> > swallowing.

> > My son has Complex III and he doesn't eat much at all. He takes

> > bottles of whole milk for most of his nutrition and then there are

> > the vitamins/supplements too. Right now he will eat baked beans

> > (about 10-20 at dinner), canned peaches, multi-grain Cheerioes and

> > some bread. And ... last but not least (yeah right, lol!) he will eat

> > French Fries from Mcs. In fact a week ago when he got a cold

> > from his sister that is all he ate for 3 days because that is the

> > only thing WHATSOEVER that he would even look at. I really am not a

> > bad mom that feeds my kids Happy Meals everyday but I knew that was a

> > favorite of his and wanted him to eat something. That is just about

> > it. I am at my wits end.

> > He hasn't been to the doctor lately so I should be happy about that

> > but I am worried that he has lost some weight. He seems to be feeling

> > okay at least for Avery.

> > He will be 2 in May and just started walking the past two months. A

> > couple of days ago there were some posts about energy levels and

> > sleeping patterns. My son too gets more energy in the evenings. He

> > will stay up 'till midnight and then want to sleep 'till noon. I

> > think everyone thinks I am a bad mom and just don't try hard enough

> > to get him on a schedule.

> > Folks, I am so sorry for such a long post. I really am but I have one

> > more important question. Avery has been doing this really weird thing

> > with his eyes lately. He blinks and squints them all of the time and

> > sometimes it looks like he is trying to do it and at other times in

> > looks involuntary or neurological or something like that. It seems

> > like if my daughter would have done this I would have just thought

> > that she was " going through a stage " or something but when Avery does

> > something new I am convinced constantly that he has some new thing

> > going wrong with him, that he is going to get REALLY sick and that he

> > is going to die. It is completely awful to feel so paranoid all of

> > the time. I am trying to be thankful for every day I have instead of

> > the constant worrying but I am having a bad day today.

> > For all of you out there that know about seizures and related issues

> > does this at all sound familiar? Avery has never had an EEG and in

> > fact I don't know much about them. The Dr. said that Avery might have

> > seizures and that we will just need to watch him. Sometimes too it

> > seems like he kind of spaces out which I have read can sort of be

> > like a petit mal seizure.

> > Any advice or input on the eating and/or the possible seizure

> > activity?

> > Thanks everyone for all of the support that you don't even know you

> > give me every day. I am a silent part of your community. Just when I

> > do talk I say too much. Sorry again for this being so long.

> > Becky

> > Mom to Avery (21 Months Old, Complex III, big Teletubbie fan) and

> > (3 1/2 going on 13, unaffected?, Gymnastics/Ballet fan.)

> >

> >

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

> > Get what you deserve with NextCard Visa! Rates as low as 2.9%

> > Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

> > no hidden fees, and much more! Get NextCard today and get the

> > credit youdeserve! Apply now! Get your NextCard Visa at:

> > http://click./1/912/1/_/368657/_/951461504/

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

> >

> > Brought to you by www.imdn.org - an on-line support group for those

> affected by mitochondrial disease.

> >

>

>

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

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affected by mitochondrial disease.

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Posted
Posted

Vange,

Thanks for the post about Mcs ... if that's what you want to call it.

Strange how the kids will eat the fries when they won't eat anything else.

I guess if your doctor says your kids are above weight and height then you

should just " look at the big picture " so to speak. That is what Avery's doc

keeps telling me is that we need to not focus on each and every meal just the

big picture ... is he growing ... is he gaining weight? Those sort of things. He

says that obviously because it's partly true I'm sure but also he's not the one

who has to sit for hours trying to get their kid to eat something!

So, thanks for helping me put things into perspective too. I don't think Avery

has lost any weight and he is growing so that would be a pretty good " big

picture " I guess.

Oh well, thank God for Happy Meals! LOL!

Becky

At 10:46 PM 2/25/2000 -0500, you wrote:

>

>

>Hi everyone,

> My childern have weird eating habits they eat alot of juke food

>because I can't get them to eat real food like meat and veggiesexcept foe

>McDs fries I too will buy a happymeal just to see them eat my son and

>daughter are above height and weight .They don't eat well but I'm afraid if

>they don't eat anything that they will get sick. If I even show them

>something I'm eating they will gag to vomiting, even smells will get them

>sick like chinnes food . I don't know what to do either, but the Doctors say

>that their getting what they need to live. But if they had a btter diet I

>wonder if it would help their delays.

>

>

>Thnks for your time

>

>Vange

> Re: Children Not Eating & Weird Eye Blinking/Squinting

>

>

>> From: KCorley309@...

>>

>> In a message dated 02/24/2000 10:53:41 PM Pacific Standard Time,

>> beckyg@... writes:

>>

>> > Can anyone tell me why our kids don't want to eat or can't

>> > eat? Is it because of the muscles in the mouth/throat and the

>> > swallowing issue? Avery always seems to gag and/or have a hard time

>> > swallowin

>>

>> doesn't eat much at all either. At times though, he has eaten almost

>> normally. Part of it was reflux adn esophagitis, but part of it isn't.

>He

>> has a fundoplication now, and I thought originally it could be a little

>too

>> tight making eating uncomfortable . . . the food gets backed up at the

>site

>> maybe. But even that doesn't exactly fit with his behavior. gags

>some,

>> too, but he has had multiple swallow studies that show his swallowing is

>> quite normal with a variety of textures, so it has been concluded that he

>> does not have a muscular or structural swallowing problem. I really think

>he

>> just doesn't feel the drive to eat like the rest of us do. So he eats a

>> little and we concentrate on working with him to enjoy the social aspect

>of

>> mealtimes, and we tube feed him for most of his nutrition. It works

>better

>> than the fight to get him to eat orally--which resulted in intractable

>> failure to thrive. I am told that sometimes children with mito whose

>eating

>> patterns are like will start to eat around school age. We will see.

>> But for now, I am happy with his pump and occasional bolus feedings to

>> supplement his horrible oral intake! It works for us.

>>

>> Kathy Corley

>> mom to and

>>

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

>> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

>> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

>> http://click./1/911/1/_/368657/_/951482238/

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

>>

>> Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

>>

>

>

>

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

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Posted
Posted

Ruth,

Thank you so much for taking the time to send me the long response and please

never apologize for that because when I read what you wrote I almost cried.

First because I know that someone else understands how hard it is to do this

sort of life on a day to day basis and secondly, no one has ever explained the

whole eating issue to me. It makes sense now.

Avery never ever seems to be hungry. He plays with and picks at his food. He

puts it in his mouth and chews it a little (small bites) and then spits it out

and takes a drink of juice or something. Then he takes another piece in his

mouth and the same routine follows. After about five or so pieces, he finally

chews it enough to swallow.

No one is quite sure why he does this. Also, he never bites anything off. I mean

like he will put a graham cracker in his mouth or a cookie or a cracker ... it

just hangs out of his mouth. He looks like a silly puppy dog carrying a bone. He

WILL NOT bite it at all. Very strange.

One more thing I wanted to mention is that from day one Avery has NEVER EVER

drooled. Not when he's been teething or anything. Never one drop of drool on his

chin. Have you ever heard of that or has anyone who is reading this ever heard

of a problem with saliva or something? Who knows.

As far as the eye thing goes they are having us take Avery to an opthamalologist

and also his doctor wants us to video tape the squinting episodes and send them

to him (because he is 2 1/2 hrs away from us) so he can see what it looks like.

Says he doesn't think we will need an EEG yet.

Avery has never had an EEG or an MRI.

Well anyhow, thanks for all of the help and support. Bye the way, what is Lexi's

diagnosis if you don't mind me asking?

Hope to talk more soon and really, thanks again.

Becky

At 07:47 PM 2/25/2000 EST, you wrote:

>From: hilandgang@...

>

>Becky,

>I can so completely relate to all you posted....we live that life around

>here, too! Several things you said hit home and i want to take a simute to

>respond.

>

>first and foremost, keep in mind that there is NOTHING " typical about any of

>our kids...so what hoold true for my Lexi may not be true for your

>Avery...but there ARE similarities and that can surely be a ray of hope when

>dealing with a chronically ill child.

>

>so as far as WHY they don't eat, let me explain it from two different

>perspectives: first the metabolic end the way my doc described it (help me

>out here, everyone else!!) and then from tmy perspective as a speech

>pathologist. Mitochondrial disorders are a form of metabolic disorder, which

>essentially means that it is an issue of breaking down fats and sugars

>ingested from food and turning them into usable energy. So for many of our

>kids (again, it depends on the type of ito problems you are dealing with, but

>IN GENERAL), their bodies don't properly metabolize the foods they eat. So

>the body then sends out the signal to the brain that it isn't hungry (even

>though the body SHOULD be ravenously hungry!!). This is a difficult issue!

>I know with Lexi that the feeling of hunger is almost NEVER there...we have

>to CONSTANTLY tell her to eat, although there is nothing that is really

>enticing to her...

>

>Now the other side of that coin is the whole issue of oral motor

>skills...compounding the lack fo a DESIRE to eat is very often tremendous

>difficulty with the whole bite/suck/chew/swallow coordination that is

>required for each and every bite. If Avery is hypersensitive inside his

>mouth or has difficulty coordinating the muscles it takes to bite, chew, form

>a bolus of food, and swallow it without choking it is probably not a very

>pleasant experience to even attempt to eat.....

>

>finally on the issue of atypical types of seizures...what you described could

>very well be a type of seizure (although i'm not a doctor...don't even play

>one on TV :) ) and if it were my kid doing that i would have an in-depth

>chat with the neurologist...it might well be time for an EEG. However, i

>will warn you that even the EEG is not always conclusive (Lexi has had 4 of

>them, none of which has ever shown anything conclusive...yet the seizures

>persist). So i guess what i am trying to say is listen to that mother's (and

>father's) instinct... when you see something atypical, follow up on it.

>

>i wish i could make some profound statement that could make all of us feel

>better about the constant state of STRESS we all feel from living with a

>chronically ill child.....guess it's just not one of my talents :( i

>think the only way our family survives it is one seond, one minute, one hour

>and one day at a time.....sometimes the good moments ACTUALLY outweigh the

>bad ones and those are the days i live for :)

>

>sorry for the long response...hope it helps a little

>

>ruth

>

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

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>0.0% Intro APR, online balance transfers, Rewards Points, no

>hidden fees, and much more! Get NextCard today and get the credit

>you deserve! Apply now! Get your NextCard Visa at:

>http://click./1/966/1/_/368657/_/951526058/

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

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Posted
Posted

Randee,

Thanks so much for the support. I just feel like the eye thing isn't normal and

it bothers me so I guess I will investigate it as far as I can and see where it

takes me. Who knows?

I don't want to dream up stuff that could be wrong with Avery ... he has enough

problems of his own. I feel like the next thing that will happen is for me to be

accused of Munchausen by Proxy. I seem to have a new symtom every time I call

the doctor for Avery and sometimes he makes me feel like I am crazy.

Oh well, thanks for listening to me babble.

Avery has never had an EEG or MRI. Just the muscle biopsy and some urine and

blood tests.

Thanks again,

Becky

>>

>> Hi Becky, My daughter is 2 1/2, with possible mito diorder. She

>> has motor developmental delays and a history of siezures. She also does

>the

>> obscure blinking and eye movements. I often thought they were seizures,

>or

>> some type of neurological activity. She has had multiple eeg's, mostly in

>> her first year of life when she was blatently having seizures, some eeg's

>> were mildly abnormal, but her last three were normal, even with these odd

>> eye movements. So go figure it out. Drs. have no clue. I personally

>feel

>> it could be something, but since she has gotten older they have definatly

>> decreased. Her cognitive development seems to be normal, though she is

>just

>> starting to walk along furniture--she'll be 3 in July. If Avery has

>never

>> had an EEG perhaps it may be something to consider. Has he had an MRI?

>> 's was normal. If he has an eeg done and he doesn't do the eye

>> movements then nothing may show. It will be interesting hearing what

>others

>> have to say. Hang in the good days will out number the bad.

>> Randee (mom to 2 1/2-hypotonia, macrocephally, high arched, narrow

>> palate, ? mito, sweet little elmo crazed angel, ph 7, and Kerri almost

>> 6)

>> Children Not Eating & Weird Eye Blinking/Squinting

>>

>>

>> >

>> >

>> > First of all I have to tell you all how much support you have been

>> > giving me on a daily basis. I have only posted a couple of times but

>> > I look forward to getting the digest every day and reading it and

>> > feeling like I am not alone.

>> > Finally a topic hit REALLY close to home. That is the topic of not

>> > eating. Can anyone tell me why our kids don't want to eat or can't

>> > eat? Is it because of the muscles in the mouth/throat and the

>> > swallowing issue? Avery always seems to gag and/or have a hard time

>> > swallowing.

>> > My son has Complex III and he doesn't eat much at all. He takes

>> > bottles of whole milk for most of his nutrition and then there are

>> > the vitamins/supplements too. Right now he will eat baked beans

>> > (about 10-20 at dinner), canned peaches, multi-grain Cheerioes and

>> > some bread. And ... last but not least (yeah right, lol!) he will eat

>> > French Fries from Mcs. In fact a week ago when he got a cold

>> > from his sister that is all he ate for 3 days because that is the

>> > only thing WHATSOEVER that he would even look at. I really am not a

>> > bad mom that feeds my kids Happy Meals everyday but I knew that was a

>> > favorite of his and wanted him to eat something. That is just about

>> > it. I am at my wits end.

>> > He hasn't been to the doctor lately so I should be happy about that

>> > but I am worried that he has lost some weight. He seems to be feeling

>> > okay at least for Avery.

>> > He will be 2 in May and just started walking the past two months. A

>> > couple of days ago there were some posts about energy levels and

>> > sleeping patterns. My son too gets more energy in the evenings. He

>> > will stay up 'till midnight and then want to sleep 'till noon. I

>> > think everyone thinks I am a bad mom and just don't try hard enough

>> > to get him on a schedule.

>> > Folks, I am so sorry for such a long post. I really am but I have one

>> > more important question. Avery has been doing this really weird thing

>> > with his eyes lately. He blinks and squints them all of the time and

>> > sometimes it looks like he is trying to do it and at other times in

>> > looks involuntary or neurological or something like that. It seems

>> > like if my daughter would have done this I would have just thought

>> > that she was " going through a stage " or something but when Avery does

>> > something new I am convinced constantly that he has some new thing

>> > going wrong with him, that he is going to get REALLY sick and that he

>> > is going to die. It is completely awful to feel so paranoid all of

>> > the time. I am trying to be thankful for every day I have instead of

>> > the constant worrying but I am having a bad day today.

>> > For all of you out there that know about seizures and related issues

>> > does this at all sound familiar? Avery has never had an EEG and in

>> > fact I don't know much about them. The Dr. said that Avery might have

>> > seizures and that we will just need to watch him. Sometimes too it

>> > seems like he kind of spaces out which I have read can sort of be

>> > like a petit mal seizure.

>> > Any advice or input on the eating and/or the possible seizure

>> > activity?

>> > Thanks everyone for all of the support that you don't even know you

>> > give me every day. I am a silent part of your community. Just when I

>> > do talk I say too much. Sorry again for this being so long.

>> > Becky

>> > Mom to Avery (21 Months Old, Complex III, big Teletubbie fan) and

>> > (3 1/2 going on 13, unaffected?, Gymnastics/Ballet fan.)

>> >

>> >

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

>> > Get what you deserve with NextCard Visa! Rates as low as 2.9%

>> > Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

>> > no hidden fees, and much more! Get NextCard today and get the

>> > credit youdeserve! Apply now! Get your NextCard Visa at:

>> > http://click./1/912/1/_/368657/_/951461504/

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

>> >

>> > Brought to you by www.imdn.org - an on-line support group for those

>> affected by mitochondrial disease.

>> >

>>

>>

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>> Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

>>

>

>

>

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Posted
Posted

Becky,

My son is 9 and has autism and probable mito(unofficially diagnosed). He

had terrible problems eating when he was little. Figured out over the years

(OT)that his gag reflex was at the tip of his tongue and he would put so much

food in his mouth(to get deep pressure) and he would not chew properly and

swallow and then choke and gag. I taught him behaviorally " bite and pull " to

eat a roll. Hand over hand. He still does this but I can remind him now

just by saying bite and pull or eat little bites. Good chewing. He was always

a picky eater. Please do not think it is your fault. I used to cater his

meals for him for years. Like just Celeste pizza and pretzels. Or he'd eat

5 things then change to 5 other things. He is eating much better and more

variety's since he went on the vitamin cocktail

Bart used to squint and do things with his eyes too. Someone atold that was

a self-stim. He likes to do that. I notice he'll do that more when the sun

is really bright. He also does it when he is visualizinig a video in his

head.

Kathy F

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Posted
Posted

Kathy,

WOW, thank you for the information.

I will try showing Avery how to pull or rather bite and pull. I think that would

help.

As far as the eye thing goes I found what you said really interesting because

Avery does this a lot when he is on the floor watching Teletubbies. He also used

to sway his head back and forth while laying on the floor too. He seemed to do

that because it felt good. Maybe this other thing is a self stimulating thing

too. I don't know.

Thanks so much for the information.

Becky

At 02:19 PM 2/26/2000 EST, you wrote:

>From: KAFoley2@...

>

>Becky,

> My son is 9 and has autism and probable mito(unofficially diagnosed). He

>had terrible problems eating when he was little. Figured out over the years

>(OT)that his gag reflex was at the tip of his tongue and he would put so much

>food in his mouth(to get deep pressure) and he would not chew properly and

>swallow and then choke and gag. I taught him behaviorally " bite and pull " to

>eat a roll. Hand over hand. He still does this but I can remind him now

>just by saying bite and pull or eat little bites. Good chewing. He was always

>a picky eater. Please do not think it is your fault. I used to cater his

>meals for him for years. Like just Celeste pizza and pretzels. Or he'd eat

>5 things then change to 5 other things. He is eating much better and more

>variety's since he went on the vitamin cocktail

>Bart used to squint and do things with his eyes too. Someone atold that was

>a self-stim. He likes to do that. I notice he'll do that more when the sun

>is really bright. He also does it when he is visualizinig a video in his

>head.

>Kathy F

>

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

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>Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

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>

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Posted
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hi,

my son is not diagnosed yet but drooling was one of the questions asked of

us...in our case our son drooled excessively. My son also squints, his EEG

showed abnormalities but not seizures (lots of spiking).

h

Re: Children Not Eating & Weird Eye Blinking/Squinting

>

>

> Ruth,

> Thank you so much for taking the time to send me the long response and

please never apologize for that because when I read what you wrote I almost

cried. First because I know that someone else understands how hard it is to

do this sort of life on a day to day basis and secondly, no one has ever

explained the whole eating issue to me. It makes sense now.

> Avery never ever seems to be hungry. He plays with and picks at his food.

He puts it in his mouth and chews it a little (small bites) and then spits

it out and takes a drink of juice or something. Then he takes another piece

in his mouth and the same routine follows. After about five or so pieces, he

finally chews it enough to swallow.

> No one is quite sure why he does this. Also, he never bites anything off.

I mean like he will put a graham cracker in his mouth or a cookie or a

cracker ... it just hangs out of his mouth. He looks like a silly puppy dog

carrying a bone. He WILL NOT bite it at all. Very strange.

> One more thing I wanted to mention is that from day one Avery has NEVER

EVER drooled. Not when he's been teething or anything. Never one drop of

drool on his chin. Have you ever heard of that or has anyone who is reading

this ever heard of a problem with saliva or something? Who knows.

> As far as the eye thing goes they are having us take Avery to an

opthamalologist and also his doctor wants us to video tape the squinting

episodes and send them to him (because he is 2 1/2 hrs away from us) so he

can see what it looks like. Says he doesn't think we will need an EEG yet.

> Avery has never had an EEG or an MRI.

> Well anyhow, thanks for all of the help and support. Bye the way, what is

Lexi's diagnosis if you don't mind me asking?

> Hope to talk more soon and really, thanks again.

> Becky

>

>

> At 07:47 PM 2/25/2000 EST, you wrote:

> >From: hilandgang@...

> >

> >Becky,

> >I can so completely relate to all you posted....we live that life around

> >here, too! Several things you said hit home and i want to take a simute

to

> >respond.

> >

> >first and foremost, keep in mind that there is NOTHING " typical about any

of

> >our kids...so what hoold true for my Lexi may not be true for your

> >Avery...but there ARE similarities and that can surely be a ray of hope

when

> >dealing with a chronically ill child.

> >

> >so as far as WHY they don't eat, let me explain it from two different

> >perspectives: first the metabolic end the way my doc described it (help

me

> >out here, everyone else!!) and then from tmy perspective as a speech

> >pathologist. Mitochondrial disorders are a form of metabolic disorder,

which

> >essentially means that it is an issue of breaking down fats and sugars

> >ingested from food and turning them into usable energy. So for many of

our

> >kids (again, it depends on the type of ito problems you are dealing with,

but

> >IN GENERAL), their bodies don't properly metabolize the foods they eat.

So

> >the body then sends out the signal to the brain that it isn't hungry

(even

> >though the body SHOULD be ravenously hungry!!). This is a difficult

issue!

> >I know with Lexi that the feeling of hunger is almost NEVER there...we

have

> >to CONSTANTLY tell her to eat, although there is nothing that is really

> >enticing to her...

> >

> >Now the other side of that coin is the whole issue of oral motor

> >skills...compounding the lack fo a DESIRE to eat is very often tremendous

> >difficulty with the whole bite/suck/chew/swallow coordination that is

> >required for each and every bite. If Avery is hypersensitive inside his

> >mouth or has difficulty coordinating the muscles it takes to bite, chew,

form

> >a bolus of food, and swallow it without choking it is probably not a very

> >pleasant experience to even attempt to eat.....

> >

> >finally on the issue of atypical types of seizures...what you described

could

> >very well be a type of seizure (although i'm not a doctor...don't even

play

> >one on TV :) ) and if it were my kid doing that i would have an

in-depth

> >chat with the neurologist...it might well be time for an EEG. However, i

> >will warn you that even the EEG is not always conclusive (Lexi has had 4

of

> >them, none of which has ever shown anything conclusive...yet the seizures

> >persist). So i guess what i am trying to say is listen to that mother's

(and

> >father's) instinct... when you see something atypical, follow up on it.

> >

> >i wish i could make some profound statement that could make all of us

feel

> >better about the constant state of STRESS we all feel from living with a

> >chronically ill child.....guess it's just not one of my talents :( i

> >think the only way our family survives it is one seond, one minute, one

hour

> >and one day at a time.....sometimes the good moments ACTUALLY outweigh

the

> >bad ones and those are the days i live for :)

> >

> >sorry for the long response...hope it helps a little

> >

> >ruth

> >

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

> >Get what you deserve with NextCard Visa! ZERO! Rates as low as

> >0.0% Intro APR, online balance transfers, Rewards Points, no

> >hidden fees, and much more! Get NextCard today and get the credit

> >you deserve! Apply now! Get your NextCard Visa at:

> >http://click./1/966/1/_/368657/_/951526058/

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

> >

> >Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

> >

> >

>

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

> Start your own free email group on eGroups.

> http://click./1/1882/1/_/368657/_/951557553/

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

>

> Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

>

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Posted
Posted

I have felt this way also - the docs think we are somehow making this stuff

up....as if we LIKE going back and forth to the docs! To me, it should

raise a huge red flag when a mom keeps calling or coming back in - something

is just not right. Instead alot of them begin to ignore what we are saying -

karen h

Children Not Eating & Weird Eye Blinking/Squinting

> >>

> >>

> >> >

> >> >

> >> > First of all I have to tell you all how much support you have been

> >> > giving me on a daily basis. I have only posted a couple of times but

> >> > I look forward to getting the digest every day and reading it and

> >> > feeling like I am not alone.

> >> > Finally a topic hit REALLY close to home. That is the topic of not

> >> > eating. Can anyone tell me why our kids don't want to eat or can't

> >> > eat? Is it because of the muscles in the mouth/throat and the

> >> > swallowing issue? Avery always seems to gag and/or have a hard time

> >> > swallowing.

> >> > My son has Complex III and he doesn't eat much at all. He takes

> >> > bottles of whole milk for most of his nutrition and then there are

> >> > the vitamins/supplements too. Right now he will eat baked beans

> >> > (about 10-20 at dinner), canned peaches, multi-grain Cheerioes and

> >> > some bread. And ... last but not least (yeah right, lol!) he will eat

> >> > French Fries from Mcs. In fact a week ago when he got a cold

> >> > from his sister that is all he ate for 3 days because that is the

> >> > only thing WHATSOEVER that he would even look at. I really am not a

> >> > bad mom that feeds my kids Happy Meals everyday but I knew that was a

> >> > favorite of his and wanted him to eat something. That is just about

> >> > it. I am at my wits end.

> >> > He hasn't been to the doctor lately so I should be happy about that

> >> > but I am worried that he has lost some weight. He seems to be feeling

> >> > okay at least for Avery.

> >> > He will be 2 in May and just started walking the past two months. A

> >> > couple of days ago there were some posts about energy levels and

> >> > sleeping patterns. My son too gets more energy in the evenings. He

> >> > will stay up 'till midnight and then want to sleep 'till noon. I

> >> > think everyone thinks I am a bad mom and just don't try hard enough

> >> > to get him on a schedule.

> >> > Folks, I am so sorry for such a long post. I really am but I have one

> >> > more important question. Avery has been doing this really weird thing

> >> > with his eyes lately. He blinks and squints them all of the time and

> >> > sometimes it looks like he is trying to do it and at other times in

> >> > looks involuntary or neurological or something like that. It seems

> >> > like if my daughter would have done this I would have just thought

> >> > that she was " going through a stage " or something but when Avery does

> >> > something new I am convinced constantly that he has some new thing

> >> > going wrong with him, that he is going to get REALLY sick and that he

> >> > is going to die. It is completely awful to feel so paranoid all of

> >> > the time. I am trying to be thankful for every day I have instead of

> >> > the constant worrying but I am having a bad day today.

> >> > For all of you out there that know about seizures and related issues

> >> > does this at all sound familiar? Avery has never had an EEG and in

> >> > fact I don't know much about them. The Dr. said that Avery might have

> >> > seizures and that we will just need to watch him. Sometimes too it

> >> > seems like he kind of spaces out which I have read can sort of be

> >> > like a petit mal seizure.

> >> > Any advice or input on the eating and/or the possible seizure

> >> > activity?

> >> > Thanks everyone for all of the support that you don't even know you

> >> > give me every day. I am a silent part of your community. Just when I

> >> > do talk I say too much. Sorry again for this being so long.

> >> > Becky

> >> > Mom to Avery (21 Months Old, Complex III, big Teletubbie fan) and

> >> > (3 1/2 going on 13, unaffected?, Gymnastics/Ballet fan.)

> >> >

> >> >

> >>

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

> >> > Get what you deserve with NextCard Visa! Rates as low as 2.9%

> >> > Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

> >> > no hidden fees, and much more! Get NextCard today and get the

> >> > credit youdeserve! Apply now! Get your NextCard Visa at:

> >> > http://click./1/912/1/_/368657/_/951461504/

> >>

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

> >> >

> >> > Brought to you by www.imdn.org - an on-line support group for those

> >> affected by mitochondrial disease.

> >> >

> >>

> >>

>

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

> >> WANT FREE MAGAZINES?

> >> Sample over 500 magazines in 30 categories-- all for FREE at

> >> FreeShop.com, your source for thousands of free and trial offers!

> >> http://click./1/1610/1/_/368657/_/951495860/

>

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

> >>

> >> Brought to you by www.imdn.org - an on-line support group for those

> >affected by mitochondrial disease.

> >>

> >

> >

> >

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

> >eGroups.

> >The best way to communicate by email in a group.

> >Start your own free email group!

> >http://click./1/1885/1/_/368657/_/951537442/

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

> >

> >Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

> >

> >

>

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Posted
Posted

Hi! I just wanted to know what kind of activity you think might be seizure

related... I lost the earlier posts and remember making a note to comment on

this one.... btw..I liked the live for each moment of each day thing,,I hear

ya....

( Matty's mom)

Re: Children Not Eating & Weird Eye Blinking/Squinting

>From: hilandgang@...

>

>Becky,

>I can so completely relate to all you posted....we live that life around

>here, too! Several things you said hit home and i want to take a simute to

>respond.

>

>first and foremost, keep in mind that there is NOTHING " typical about any

of

>our kids...so what hoold true for my Lexi may not be true for your

>Avery...but there ARE similarities and that can surely be a ray of hope

when

>dealing with a chronically ill child.

>

>so as far as WHY they don't eat, let me explain it from two different

>perspectives: first the metabolic end the way my doc described it (help me

>out here, everyone else!!) and then from tmy perspective as a speech

>pathologist. Mitochondrial disorders are a form of metabolic disorder,

which

>essentially means that it is an issue of breaking down fats and sugars

>ingested from food and turning them into usable energy. So for many of our

>kids (again, it depends on the type of ito problems you are dealing with,

but

>IN GENERAL), their bodies don't properly metabolize the foods they eat. So

>the body then sends out the signal to the brain that it isn't hungry (even

>though the body SHOULD be ravenously hungry!!). This is a difficult

issue!

>I know with Lexi that the feeling of hunger is almost NEVER there...we have

>to CONSTANTLY tell her to eat, although there is nothing that is really

>enticing to her...

>

>Now the other side of that coin is the whole issue of oral motor

>skills...compounding the lack fo a DESIRE to eat is very often tremendous

>difficulty with the whole bite/suck/chew/swallow coordination that is

>required for each and every bite. If Avery is hypersensitive inside his

>mouth or has difficulty coordinating the muscles it takes to bite, chew,

form

>a bolus of food, and swallow it without choking it is probably not a very

>pleasant experience to even attempt to eat.....

>

>finally on the issue of atypical types of seizures...what you described

could

>very well be a type of seizure (although i'm not a doctor...don't even play

>one on TV :) ) and if it were my kid doing that i would have an in-depth

>chat with the neurologist...it might well be time for an EEG. However, i

>will warn you that even the EEG is not always conclusive (Lexi has had 4 of

>them, none of which has ever shown anything conclusive...yet the seizures

>persist). So i guess what i am trying to say is listen to that mother's

(and

>father's) instinct... when you see something atypical, follow up on it.

>

>i wish i could make some profound statement that could make all of us feel

>better about the constant state of STRESS we all feel from living with a

>chronically ill child.....guess it's just not one of my talents :( i

>think the only way our family survives it is one seond, one minute, one

hour

>and one day at a time.....sometimes the good moments ACTUALLY outweigh the

>bad ones and those are the days i live for :)

>

>sorry for the long response...hope it helps a little

>

>ruth

>

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

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Posted
Posted

Becky, My matty also has these squinting episodes.. Sometimes I think they

are definitely seizure related because they precede seizures. But,,, other

times I believe that his meds prevent the actual outward signs of the

seizure,, and his eyes go kind of haywire because that is what is affected

in his case,,,,,He has ptosis and now amblyopia... Does this make any

sense?/ Also Matty has has 3 eeg's and nobody has been able to tell what is

going on..Great HuH!

( Matty's Mom)

Re: Children Not Eating & Weird Eye Blinking/Squinting

>

>

>Ruth,

>Thank you so much for taking the time to send me the long response and

please never apologize for that because when I read what you wrote I almost

cried. First because I know that someone else understands how hard it is to

do this sort of life on a day to day basis and secondly, no one has ever

explained the whole eating issue to me. It makes sense now.

>Avery never ever seems to be hungry. He plays with and picks at his food.

He puts it in his mouth and chews it a little (small bites) and then spits

it out and takes a drink of juice or something. Then he takes another piece

in his mouth and the same routine follows. After about five or so pieces, he

finally chews it enough to swallow.

>No one is quite sure why he does this. Also, he never bites anything off. I

mean like he will put a graham cracker in his mouth or a cookie or a cracker

.... it just hangs out of his mouth. He looks like a silly puppy dog carrying

a bone. He WILL NOT bite it at all. Very strange.

>One more thing I wanted to mention is that from day one Avery has NEVER

EVER drooled. Not when he's been teething or anything. Never one drop of

drool on his chin. Have you ever heard of that or has anyone who is reading

this ever heard of a problem with saliva or something? Who knows.

>As far as the eye thing goes they are having us take Avery to an

opthamalologist and also his doctor wants us to video tape the squinting

episodes and send them to him (because he is 2 1/2 hrs away from us) so he

can see what it looks like. Says he doesn't think we will need an EEG yet.

>Avery has never had an EEG or an MRI.

>Well anyhow, thanks for all of the help and support. Bye the way, what is

Lexi's diagnosis if you don't mind me asking?

>Hope to talk more soon and really, thanks again.

>Becky

>

>

>At 07:47 PM 2/25/2000 EST, you wrote:

>>From: hilandgang@...

>>

>>Becky,

>>I can so completely relate to all you posted....we live that life around

>>here, too! Several things you said hit home and i want to take a simute

to

>>respond.

>>

>>first and foremost, keep in mind that there is NOTHING " typical about any

of

>>our kids...so what hoold true for my Lexi may not be true for your

>>Avery...but there ARE similarities and that can surely be a ray of hope

when

>>dealing with a chronically ill child.

>>

>>so as far as WHY they don't eat, let me explain it from two different

>>perspectives: first the metabolic end the way my doc described it (help

me

>>out here, everyone else!!) and then from tmy perspective as a speech

>>pathologist. Mitochondrial disorders are a form of metabolic disorder,

which

>>essentially means that it is an issue of breaking down fats and sugars

>>ingested from food and turning them into usable energy. So for many of

our

>>kids (again, it depends on the type of ito problems you are dealing with,

but

>>IN GENERAL), their bodies don't properly metabolize the foods they eat.

So

>>the body then sends out the signal to the brain that it isn't hungry (even

>>though the body SHOULD be ravenously hungry!!). This is a difficult

issue!

>>I know with Lexi that the feeling of hunger is almost NEVER there...we

have

>>to CONSTANTLY tell her to eat, although there is nothing that is really

>>enticing to her...

>>

>>Now the other side of that coin is the whole issue of oral motor

>>skills...compounding the lack fo a DESIRE to eat is very often tremendous

>>difficulty with the whole bite/suck/chew/swallow coordination that is

>>required for each and every bite. If Avery is hypersensitive inside his

>>mouth or has difficulty coordinating the muscles it takes to bite, chew,

form

>>a bolus of food, and swallow it without choking it is probably not a very

>>pleasant experience to even attempt to eat.....

>>

>>finally on the issue of atypical types of seizures...what you described

could

>>very well be a type of seizure (although i'm not a doctor...don't even

play

>>one on TV :) ) and if it were my kid doing that i would have an

in-depth

>>chat with the neurologist...it might well be time for an EEG. However, i

>>will warn you that even the EEG is not always conclusive (Lexi has had 4

of

>>them, none of which has ever shown anything conclusive...yet the seizures

>>persist). So i guess what i am trying to say is listen to that mother's

(and

>>father's) instinct... when you see something atypical, follow up on it.

>>

>>i wish i could make some profound statement that could make all of us feel

>>better about the constant state of STRESS we all feel from living with a

>>chronically ill child.....guess it's just not one of my talents :( i

>>think the only way our family survives it is one seond, one minute, one

hour

>>and one day at a time.....sometimes the good moments ACTUALLY outweigh the

>>bad ones and those are the days i live for :)

>>

>>sorry for the long response...hope it helps a little

>>

>>ruth

>>

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

>>Get what you deserve with NextCard Visa! ZERO! Rates as low as

>>0.0% Intro APR, online balance transfers, Rewards Points, no

>>hidden fees, and much more! Get NextCard today and get the credit

>>you deserve! Apply now! Get your NextCard Visa at:

>>http://click./1/966/1/_/368657/_/951526058/

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

>>

>>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>>

>>

>

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Posted
Posted

Barbara,

All I can say is thank you. I have gotten so many supportive emails/posts. I

have never before felt this way about what I am doing or trying to do.

You folks are giving me some confidence in myself. I am always second guessing

myself and everything about Avery and worrying I am doing the wrong thing.

Sad to say, I am " glad " and that is not the right word but relieved to hear that

other people's children don't eat well either. That is a terrible thing to say

but let me explain.

I am not the " best " cook in the world and not extremely organized. We don't

always eat balanced meals anyway but I try very hard with Avery but it doesn't

seem to matter. So what I am saying is that I have blamed myself for Avery not

eating well thinking if only I could find what he likes to eat or maybe try more

often to get him to eat the stuff he doesn't like.

Now I know that others are experiencing the same thing. Others that probably

cook better than me are trying to feed their kids and they aren't eating either

except for stuff that may not be exceptionally good for them? At least it is

something.

Avery had a fever last week and spent the whole time twitching funny. It drove

me nuts. I assumed it was the fever. Who knows?

Avery's speech seems to be delayed too. He only says Momma and Dadda and a

couple of other sounds. He seems to understand but just won't/can't talk.

Hopefully this will improve.

Thanks again Barbara.

Becky

Mom to Avery (almost 2) w/Complex III and Mom to (3 going on 13) Not

affected.

At 11:17 AM 1/31/2000 -0500, you wrote:

>

>

>Becky,

>

>Avery sounds so much like my Max. Mcdonalds french fries, been there,

>done that. Now he barely eats those. Don't worry about what other people

>think. Most of us know that we would do anything to get our kids to

>eat. I let Max eat potato chips. Sour cream and onion. He likes salty

>and sweet food only. He doesn't eat any fruit or veggies. Only sweets

>and breads (carbohydrates) Right now we are in another barely eating

>stage. He's had 2 bites of cookie, a few french fries and a few chips

>today. He had 4 cups of milk. Max also used a bottle for a very long

>time. I took it when he was 2yrs 3 or 4 mths. He still lives mostly on

>milk. Preferably chocolate. We add some pedisure, chocolate of course.

>

>As far as we know Max is unaffected, but we will be seeing a

>neurologist in March. He has had three speech regressions. He has

>gotten his speech back, but doesn't speak clearly. He had a weird

>episode of something. He woke up screaming and slurring his speech.

>After that he had several problems with his tongue. He would tell me

>that it hurt and then talk like his tongue wasn't working right. He woke

>up on another occasion and just asked me to come and pick him up. I put

>him in bed with me and his arms and legs twitched. So I can relate to

>the constant fear of something being terribly wrong. None of my

>children have had seizures, but this wrorries me.

>

>Sorry now I'm in competition for the longest post. I could keep going,

>but I'll give you all a break.

>

>Thanks for listening and Becky you can say too much anytime you please.

>

>Barbara

>mom to 5, Max 2 1/2, reflux and Corbin 17mths, possible mito,

>reflux, asthma, enchephalopathy, oral motor and motor planning dyspraxia

>

>

>

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Posted
Posted

,

That can be so frusterating. I think that Avery's nurse thinks I am a

hypochondriac or at least for Avery's sake.

Avery's therapist keeps telling me that I am Avery's own expert ... that no one

else knows him like me so I keep telling myself that all of the time when I am

feeling like they think I am crazy.

Let's all say to ourselves ... " no one knows our child like we do ... no one

knows our child like we do ... "

:)

Becky

At 03:51 PM 2/26/2000 -0500, you wrote:

>

>

>I have felt this way also - the docs think we are somehow making this stuff

>up....as if we LIKE going back and forth to the docs! To me, it should

>raise a huge red flag when a mom keeps calling or coming back in - something

>is just not right. Instead alot of them begin to ignore what we are saying -

>

>karen h

> Children Not Eating & Weird Eye Blinking/Squinting

>> >>

>> >>

>> >> >

>> >> >

>> >> > First of all I have to tell you all how much support you have been

>> >> > giving me on a daily basis. I have only posted a couple of times but

>> >> > I look forward to getting the digest every day and reading it and

>> >> > feeling like I am not alone.

>> >> > Finally a topic hit REALLY close to home. That is the topic of not

>> >> > eating. Can anyone tell me why our kids don't want to eat or can't

>> >> > eat? Is it because of the muscles in the mouth/throat and the

>> >> > swallowing issue? Avery always seems to gag and/or have a hard time

>> >> > swallowing.

>> >> > My son has Complex III and he doesn't eat much at all. He takes

>> >> > bottles of whole milk for most of his nutrition and then there are

>> >> > the vitamins/supplements too. Right now he will eat baked beans

>> >> > (about 10-20 at dinner), canned peaches, multi-grain Cheerioes and

>> >> > some bread. And ... last but not least (yeah right, lol!) he will eat

>> >> > French Fries from Mcs. In fact a week ago when he got a cold

>> >> > from his sister that is all he ate for 3 days because that is the

>> >> > only thing WHATSOEVER that he would even look at. I really am not a

>> >> > bad mom that feeds my kids Happy Meals everyday but I knew that was a

>> >> > favorite of his and wanted him to eat something. That is just about

>> >> > it. I am at my wits end.

>> >> > He hasn't been to the doctor lately so I should be happy about that

>> >> > but I am worried that he has lost some weight. He seems to be feeling

>> >> > okay at least for Avery.

>> >> > He will be 2 in May and just started walking the past two months. A

>> >> > couple of days ago there were some posts about energy levels and

>> >> > sleeping patterns. My son too gets more energy in the evenings. He

>> >> > will stay up 'till midnight and then want to sleep 'till noon. I

>> >> > think everyone thinks I am a bad mom and just don't try hard enough

>> >> > to get him on a schedule.

>> >> > Folks, I am so sorry for such a long post. I really am but I have one

>> >> > more important question. Avery has been doing this really weird thing

>> >> > with his eyes lately. He blinks and squints them all of the time and

>> >> > sometimes it looks like he is trying to do it and at other times in

>> >> > looks involuntary or neurological or something like that. It seems

>> >> > like if my daughter would have done this I would have just thought

>> >> > that she was " going through a stage " or something but when Avery does

>> >> > something new I am convinced constantly that he has some new thing

>> >> > going wrong with him, that he is going to get REALLY sick and that he

>> >> > is going to die. It is completely awful to feel so paranoid all of

>> >> > the time. I am trying to be thankful for every day I have instead of

>> >> > the constant worrying but I am having a bad day today.

>> >> > For all of you out there that know about seizures and related issues

>> >> > does this at all sound familiar? Avery has never had an EEG and in

>> >> > fact I don't know much about them. The Dr. said that Avery might have

>> >> > seizures and that we will just need to watch him. Sometimes too it

>> >> > seems like he kind of spaces out which I have read can sort of be

>> >> > like a petit mal seizure.

>> >> > Any advice or input on the eating and/or the possible seizure

>> >> > activity?

>> >> > Thanks everyone for all of the support that you don't even know you

>> >> > give me every day. I am a silent part of your community. Just when I

>> >> > do talk I say too much. Sorry again for this being so long.

>> >> > Becky

>> >> > Mom to Avery (21 Months Old, Complex III, big Teletubbie fan) and

>> >> > (3 1/2 going on 13, unaffected?, Gymnastics/Ballet fan.)

>> >> >

>> >> >

>> >>

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>> >> affected by mitochondrial disease.

>> >> >

>> >>

>> >>

>>

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>> >> Brought to you by www.imdn.org - an on-line support group for those

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>> >>

>> >

>> >

>> >

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>affected by mitochondrial disease.

>> >

>> >

>>

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>>

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Posted
Posted

,

I guess it was me asking about Avery. He sometimes stares off into space and I

cannot get his attention and he is doing this weird blinking and squinting

thing. He seems to do it when he is happy or excited. He just closes his eyes

and they squint really bad like if you try to both close and open your eyes at

the same time. Does that make sense?

Anyhow, that is what we were talking about.

No EEG has ever been done and he has had no other seizure history.

That was about it.

:)

Becky

At 10:38 PM 2/26/2000 -0500, you wrote:

>

>

>Hi! I just wanted to know what kind of activity you think might be seizure

>related... I lost the earlier posts and remember making a note to comment on

>this one.... btw..I liked the live for each moment of each day thing,,I hear

>ya....

>

>( Matty's mom)

>

> Re: Children Not Eating & Weird Eye Blinking/Squinting

>

>

>>From: hilandgang@...

>>

>>Becky,

>>I can so completely relate to all you posted....we live that life around

>>here, too! Several things you said hit home and i want to take a simute to

>>respond.

>>

>>first and foremost, keep in mind that there is NOTHING " typical about any

>of

>>our kids...so what hoold true for my Lexi may not be true for your

>>Avery...but there ARE similarities and that can surely be a ray of hope

>when

>>dealing with a chronically ill child.

>>

>>so as far as WHY they don't eat, let me explain it from two different

>>perspectives: first the metabolic end the way my doc described it (help me

>>out here, everyone else!!) and then from tmy perspective as a speech

>>pathologist. Mitochondrial disorders are a form of metabolic disorder,

>which

>>essentially means that it is an issue of breaking down fats and sugars

>>ingested from food and turning them into usable energy. So for many of our

>>kids (again, it depends on the type of ito problems you are dealing with,

>but

>>IN GENERAL), their bodies don't properly metabolize the foods they eat. So

>>the body then sends out the signal to the brain that it isn't hungry (even

>>though the body SHOULD be ravenously hungry!!). This is a difficult

>issue!

>>I know with Lexi that the feeling of hunger is almost NEVER there...we have

>>to CONSTANTLY tell her to eat, although there is nothing that is really

>>enticing to her...

>>

>>Now the other side of that coin is the whole issue of oral motor

>>skills...compounding the lack fo a DESIRE to eat is very often tremendous

>>difficulty with the whole bite/suck/chew/swallow coordination that is

>>required for each and every bite. If Avery is hypersensitive inside his

>>mouth or has difficulty coordinating the muscles it takes to bite, chew,

>form

>>a bolus of food, and swallow it without choking it is probably not a very

>>pleasant experience to even attempt to eat.....

>>

>>finally on the issue of atypical types of seizures...what you described

>could

>>very well be a type of seizure (although i'm not a doctor...don't even play

>>one on TV :) ) and if it were my kid doing that i would have an in-depth

>>chat with the neurologist...it might well be time for an EEG. However, i

>>will warn you that even the EEG is not always conclusive (Lexi has had 4 of

>>them, none of which has ever shown anything conclusive...yet the seizures

>>persist). So i guess what i am trying to say is listen to that mother's

>(and

>>father's) instinct... when you see something atypical, follow up on it.

>>

>>i wish i could make some profound statement that could make all of us feel

>>better about the constant state of STRESS we all feel from living with a

>>chronically ill child.....guess it's just not one of my talents :( i

>>think the only way our family survives it is one seond, one minute, one

>hour

>>and one day at a time.....sometimes the good moments ACTUALLY outweigh the

>>bad ones and those are the days i live for :)

>>

>>sorry for the long response...hope it helps a little

>>

>>ruth

>>

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

>>Get what you deserve with NextCard Visa! ZERO! Rates as low as

>>0.0% Intro APR, online balance transfers, Rewards Points, no

>>hidden fees, and much more! Get NextCard today and get the credit

>>you deserve! Apply now! Get your NextCard Visa at:

>>http://click./1/966/1/_/368657/_/951526058/

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

>>

>>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

>>

>

>

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

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Posted
Posted

,

What is amblyopia?

It could be that the eyes are just the small manifestation of somthing " bigger "

so to speak that could happen if they weren't on their " cocktails. "

This stuff gets so deep and I get so confused.

Becky

At 10:49 PM 2/26/2000 -0500, you wrote:

>

>

>Becky, My matty also has these squinting episodes.. Sometimes I think they

>are definitely seizure related because they precede seizures. But,,, other

>times I believe that his meds prevent the actual outward signs of the

>seizure,, and his eyes go kind of haywire because that is what is affected

>in his case,,,,,He has ptosis and now amblyopia... Does this make any

>sense?/ Also Matty has has 3 eeg's and nobody has been able to tell what is

>going on..Great HuH!

>

> ( Matty's Mom)

> Re: Children Not Eating & Weird Eye Blinking/Squinting

>

>

>>

>>

>>Ruth,

>>Thank you so much for taking the time to send me the long response and

>please never apologize for that because when I read what you wrote I almost

>cried. First because I know that someone else understands how hard it is to

>do this sort of life on a day to day basis and secondly, no one has ever

>explained the whole eating issue to me. It makes sense now.

>>Avery never ever seems to be hungry. He plays with and picks at his food.

>He puts it in his mouth and chews it a little (small bites) and then spits

>it out and takes a drink of juice or something. Then he takes another piece

>in his mouth and the same routine follows. After about five or so pieces, he

>finally chews it enough to swallow.

>>No one is quite sure why he does this. Also, he never bites anything off. I

>mean like he will put a graham cracker in his mouth or a cookie or a cracker

>... it just hangs out of his mouth. He looks like a silly puppy dog carrying

>a bone. He WILL NOT bite it at all. Very strange.

>>One more thing I wanted to mention is that from day one Avery has NEVER

>EVER drooled. Not when he's been teething or anything. Never one drop of

>drool on his chin. Have you ever heard of that or has anyone who is reading

>this ever heard of a problem with saliva or something? Who knows.

>>As far as the eye thing goes they are having us take Avery to an

>opthamalologist and also his doctor wants us to video tape the squinting

>episodes and send them to him (because he is 2 1/2 hrs away from us) so he

>can see what it looks like. Says he doesn't think we will need an EEG yet.

>>Avery has never had an EEG or an MRI.

>>Well anyhow, thanks for all of the help and support. Bye the way, what is

>Lexi's diagnosis if you don't mind me asking?

>>Hope to talk more soon and really, thanks again.

>>Becky

>>

>>

>>At 07:47 PM 2/25/2000 EST, you wrote:

>>>From: hilandgang@...

>>>

>>>Becky,

>>>I can so completely relate to all you posted....we live that life around

>>>here, too! Several things you said hit home and i want to take a simute

>to

>>>respond.

>>>

>>>first and foremost, keep in mind that there is NOTHING " typical about any

>of

>>>our kids...so what hoold true for my Lexi may not be true for your

>>>Avery...but there ARE similarities and that can surely be a ray of hope

>when

>>>dealing with a chronically ill child.

>>>

>>>so as far as WHY they don't eat, let me explain it from two different

>>>perspectives: first the metabolic end the way my doc described it (help

>me

>>>out here, everyone else!!) and then from tmy perspective as a speech

>>>pathologist. Mitochondrial disorders are a form of metabolic disorder,

>which

>>>essentially means that it is an issue of breaking down fats and sugars

>>>ingested from food and turning them into usable energy. So for many of

>our

>>>kids (again, it depends on the type of ito problems you are dealing with,

>but

>>>IN GENERAL), their bodies don't properly metabolize the foods they eat.

>So

>>>the body then sends out the signal to the brain that it isn't hungry (even

>>>though the body SHOULD be ravenously hungry!!). This is a difficult

>issue!

>>>I know with Lexi that the feeling of hunger is almost NEVER there...we

>have

>>>to CONSTANTLY tell her to eat, although there is nothing that is really

>>>enticing to her...

>>>

>>>Now the other side of that coin is the whole issue of oral motor

>>>skills...compounding the lack fo a DESIRE to eat is very often tremendous

>>>difficulty with the whole bite/suck/chew/swallow coordination that is

>>>required for each and every bite. If Avery is hypersensitive inside his

>>>mouth or has difficulty coordinating the muscles it takes to bite, chew,

>form

>>>a bolus of food, and swallow it without choking it is probably not a very

>>>pleasant experience to even attempt to eat.....

>>>

>>>finally on the issue of atypical types of seizures...what you described

>could

>>>very well be a type of seizure (although i'm not a doctor...don't even

>play

>>>one on TV :) ) and if it were my kid doing that i would have an

>in-depth

>>>chat with the neurologist...it might well be time for an EEG. However, i

>>>will warn you that even the EEG is not always conclusive (Lexi has had 4

>of

>>>them, none of which has ever shown anything conclusive...yet the seizures

>>>persist). So i guess what i am trying to say is listen to that mother's

>(and

>>>father's) instinct... when you see something atypical, follow up on it.

>>>

>>>i wish i could make some profound statement that could make all of us feel

>>>better about the constant state of STRESS we all feel from living with a

>>>chronically ill child.....guess it's just not one of my talents :( i

>>>think the only way our family survives it is one seond, one minute, one

>hour

>>>and one day at a time.....sometimes the good moments ACTUALLY outweigh the

>>>bad ones and those are the days i live for :)

>>>

>>>sorry for the long response...hope it helps a little

>>>

>>>ruth

>>>

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

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>>>

>>

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>>

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>>

>

>

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Posted
Posted

YES, YES, YES!! does the exact same thing! He used to sort of squint and

cross his eyes. I thought he was doing it because it was fun to see how the

world looked cross-eyed. Now he blinks a lot, particularly when he's walking or

having fun...kind of looks like a nervous tick, not a seizure.

Becky Goodell wrote:

>

>

> ,

> I guess it was me asking about Avery. He sometimes stares off into space and I

cannot get his attention and he is doing this weird blinking and squinting

thing. He seems to do it when he is happy or excited. He just closes his eyes

and they squint really bad like if you try to both close and open your eyes at

the same time. Does that make sense?

> Anyhow, that is what we were talking about.

> No EEG has ever been done and he has had no other seizure history.

> That was about it.

> :)

> Becky

>

> At 10:38 PM 2/26/2000 -0500, you wrote:

> >

> >

> >Hi! I just wanted to know what kind of activity you think might be seizure

> >related... I lost the earlier posts and remember making a note to comment on

> >this one.... btw..I liked the live for each moment of each day thing,,I hear

> >ya....

> >

> >( Matty's mom)

> >

> > Re: Children Not Eating & Weird Eye Blinking/Squinting

> >

> >

> >>From: hilandgang@...

> >>

> >>Becky,

> >>I can so completely relate to all you posted....we live that life around

> >>here, too! Several things you said hit home and i want to take a simute to

> >>respond.

> >>

> >>first and foremost, keep in mind that there is NOTHING " typical about any

> >of

> >>our kids...so what hoold true for my Lexi may not be true for your

> >>Avery...but there ARE similarities and that can surely be a ray of hope

> >when

> >>dealing with a chronically ill child.

> >>

> >>so as far as WHY they don't eat, let me explain it from two different

> >>perspectives: first the metabolic end the way my doc described it (help me

> >>out here, everyone else!!) and then from tmy perspective as a speech

> >>pathologist. Mitochondrial disorders are a form of metabolic disorder,

> >which

> >>essentially means that it is an issue of breaking down fats and sugars

> >>ingested from food and turning them into usable energy. So for many of our

> >>kids (again, it depends on the type of ito problems you are dealing with,

> >but

> >>IN GENERAL), their bodies don't properly metabolize the foods they eat. So

> >>the body then sends out the signal to the brain that it isn't hungry (even

> >>though the body SHOULD be ravenously hungry!!). This is a difficult

> >issue!

> >>I know with Lexi that the feeling of hunger is almost NEVER there...we have

> >>to CONSTANTLY tell her to eat, although there is nothing that is really

> >>enticing to her...

> >>

> >>Now the other side of that coin is the whole issue of oral motor

> >>skills...compounding the lack fo a DESIRE to eat is very often tremendous

> >>difficulty with the whole bite/suck/chew/swallow coordination that is

> >>required for each and every bite. If Avery is hypersensitive inside his

> >>mouth or has difficulty coordinating the muscles it takes to bite, chew,

> >form

> >>a bolus of food, and swallow it without choking it is probably not a very

> >>pleasant experience to even attempt to eat.....

> >>

> >>finally on the issue of atypical types of seizures...what you described

> >could

> >>very well be a type of seizure (although i'm not a doctor...don't even play

> >>one on TV :) ) and if it were my kid doing that i would have an in-depth

> >>chat with the neurologist...it might well be time for an EEG. However, i

> >>will warn you that even the EEG is not always conclusive (Lexi has had 4 of

> >>them, none of which has ever shown anything conclusive...yet the seizures

> >>persist). So i guess what i am trying to say is listen to that mother's

> >(and

> >>father's) instinct... when you see something atypical, follow up on it.

> >>

> >>i wish i could make some profound statement that could make all of us feel

> >>better about the constant state of STRESS we all feel from living with a

> >>chronically ill child.....guess it's just not one of my talents :( i

> >>think the only way our family survives it is one seond, one minute, one

> >hour

> >>and one day at a time.....sometimes the good moments ACTUALLY outweigh the

> >>bad ones and those are the days i live for :)

> >>

> >>sorry for the long response...hope it helps a little

> >>

> >>ruth

> >>

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

> >>Get what you deserve with NextCard Visa! ZERO! Rates as low as

> >>0.0% Intro APR, online balance transfers, Rewards Points, no

> >>hidden fees, and much more! Get NextCard today and get the credit

> >>you deserve! Apply now! Get your NextCard Visa at:

> >>http://click./1/966/1/_/368657/_/951526058/

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

> >>

> >>Brought to you by www.imdn.org - an on-line support group for those

> >affected by mitochondrial disease.

> >>

> >

> >

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

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> >

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Posted
Posted

ON the squinting and blinking.... has actually been hooked up to a 24

hour telemetry, so that we could show the staff how visual triggers will cause

seizure activity. We can use the introduction of a toy with stripes, or hole

patterns... but the same effect can be manifested by JESS by squinting and

looking out at light or up at church lights

(depending on how desperate she is for that stim release). We have had to remove

all mini-blinds, screens, striped clothing and especially patterns with white

and black... they are really triggers. She will stare at something for 10 - 20

seconds and if you don't cover her eyes, she will have a grand mal seizure. This

took us a while to discover,

longer to prove... and once proven, the whole resident team at UCLA was amazed

but absolutely no help in making sense of it. This may be very isolated to my

little partner, but if it sounds familiar... I'll be glad to share any history

we have. Sharon C.

Steve Fitzgerald wrote:

>

>

> YES, YES, YES!! does the exact same thing! He used to sort of squint

and cross his eyes. I thought he was doing it because it was fun to see how the

world looked cross-eyed. Now he blinks a lot, particularly when he's walking or

having fun...kind of looks like a nervous tick, not a seizure.

>

> Becky Goodell wrote:

>

> >

> >

> > ,

> > I guess it was me asking about Avery. He sometimes stares off into space and

I cannot get his attention and he is doing this weird blinking and squinting

thing. He seems to do it when he is happy or excited. He just closes his eyes

and they squint really bad like if you try to both close and open your eyes at

the same time. Does that make sense?

> > Anyhow, that is what we were talking about.

> > No EEG has ever been done and he has had no other seizure history.

> > That was about it.

> > :)

> > Becky

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Posted
Posted

Becky -

Kennedy (2.3 yrs, mito c-3 deficiency) began to exhibit squirrelly eye

motions at about six months. She slowly lost the ability (or desire) to

focus, and then her eyes began to roll around a bit. Then her pupils began

to either dilate/constrict opposite to the proper reaction or did not react

at all. We did all the godawful tests only to hear that she had a " cherry

red spot " where the eye organ and neuro tissue meet. We never received a

definitive answer. The only thing we know is that the eye organs themselves

are perfect, but we have no evidence that she can see more than very dimly.

She does not follow object motion, but does appear to respond differently to

different people upon sight only. Dunno if this is helpful, but wanted to

share it nevertheless.

Bless you - Hairston

Children Not Eating & Weird Eye Blinking/Squinting

> >>

> >>

> >> >

> >> >

> >> > First of all I have to tell you all how much support you have been

> >> > giving me on a daily basis. I have only posted a couple of times but

> >> > I look forward to getting the digest every day and reading it and

> >> > feeling like I am not alone.

> >> > Finally a topic hit REALLY close to home. That is the topic of not

> >> > eating. Can anyone tell me why our kids don't want to eat or can't

> >> > eat? Is it because of the muscles in the mouth/throat and the

> >> > swallowing issue? Avery always seems to gag and/or have a hard time

> >> > swallowing.

> >> > My son has Complex III and he doesn't eat much at all. He takes

> >> > bottles of whole milk for most of his nutrition and then there are

> >> > the vitamins/supplements too. Right now he will eat baked beans

> >> > (about 10-20 at dinner), canned peaches, multi-grain Cheerioes and

> >> > some bread. And ... last but not least (yeah right, lol!) he will eat

> >> > French Fries from Mcs. In fact a week ago when he got a cold

> >> > from his sister that is all he ate for 3 days because that is the

> >> > only thing WHATSOEVER that he would even look at. I really am not a

> >> > bad mom that feeds my kids Happy Meals everyday but I knew that was a

> >> > favorite of his and wanted him to eat something. That is just about

> >> > it. I am at my wits end.

> >> > He hasn't been to the doctor lately so I should be happy about that

> >> > but I am worried that he has lost some weight. He seems to be feeling

> >> > okay at least for Avery.

> >> > He will be 2 in May and just started walking the past two months. A

> >> > couple of days ago there were some posts about energy levels and

> >> > sleeping patterns. My son too gets more energy in the evenings. He

> >> > will stay up 'till midnight and then want to sleep 'till noon. I

> >> > think everyone thinks I am a bad mom and just don't try hard enough

> >> > to get him on a schedule.

> >> > Folks, I am so sorry for such a long post. I really am but I have one

> >> > more important question. Avery has been doing this really weird thing

> >> > with his eyes lately. He blinks and squints them all of the time and

> >> > sometimes it looks like he is trying to do it and at other times in

> >> > looks involuntary or neurological or something like that. It seems

> >> > like if my daughter would have done this I would have just thought

> >> > that she was " going through a stage " or something but when Avery does

> >> > something new I am convinced constantly that he has some new thing

> >> > going wrong with him, that he is going to get REALLY sick and that he

> >> > is going to die. It is completely awful to feel so paranoid all of

> >> > the time. I am trying to be thankful for every day I have instead of

> >> > the constant worrying but I am having a bad day today.

> >> > For all of you out there that know about seizures and related issues

> >> > does this at all sound familiar? Avery has never had an EEG and in

> >> > fact I don't know much about them. The Dr. said that Avery might have

> >> > seizures and that we will just need to watch him. Sometimes too it

> >> > seems like he kind of spaces out which I have read can sort of be

> >> > like a petit mal seizure.

> >> > Any advice or input on the eating and/or the possible seizure

> >> > activity?

> >> > Thanks everyone for all of the support that you don't even know you

> >> > give me every day. I am a silent part of your community. Just when I

> >> > do talk I say too much. Sorry again for this being so long.

> >> > Becky

> >> > Mom to Avery (21 Months Old, Complex III, big Teletubbie fan) and

> >> > (3 1/2 going on 13, unaffected?, Gymnastics/Ballet fan.)

> >> >

> >> >

> >>

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> >> affected by mitochondrial disease.

> >> >

> >>

> >>

>

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Posted
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I really don't understand all of this. Why do these guys do such strange things?

It makes my heart race and my stomach sink. But, I feel better knowing that

someone else has seen the same thing before. Again, common theme here, makes me

feel not so alone.

:)

Becky

(Avery, Complex III)

At 08:56 AM 2/27/2000 -0200, you wrote:

>

>

>YES, YES, YES!! does the exact same thing! He used to sort of squint and

cross his eyes. I thought he was doing it because it was fun to see how the

world looked cross-eyed. Now he blinks a lot, particularly when he's walking or

having fun...kind of looks like a nervous tick, not a seizure.

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