Re: Looking for thoughts

[Guest guest]

Hi,

I've been MIA for months now, but I'm looking for thoughts, too. I

hopw you don't mind if I jump in here. I have a little mito girl, , 5,

but I am looking for thoughts about a sibling. Mark, 6. Mark is healthy,

smart, cute, fine, or so I thought. He has been having some trouble staying

on task, and was diagnosed recently with ADHD..to know my husband, this was a

little less than surprising to me. Last week, he had a vision screening

(standard rule-out), and it turns out he cannot cross his eyes at all, he

cannot move them past midline when watching a fingertip, pen, whatever. If

something is too close to his face, he can't see it at all, and has double

vision with things that are close. He also has difficulty tracking anything

that is close to his face. This was blamed on weak eye muscles, and he will

be going to vision therapy. I know there is often an eye component to mito

with weak eye muscles. Not this, right? Anyone know anything about this

kind of eye issue?

Thanks, \

[Guest guest]

Hi,

I've been MIA for months now, but I'm looking for thoughts, too. I

hopw you don't mind if I jump in here. I have a little mito girl, , 5,

but I am looking for thoughts about a sibling. Mark, 6. Mark is healthy,

smart, cute, fine, or so I thought. He has been having some trouble staying

on task, and was diagnosed recently with ADHD..to know my husband, this was a

little less than surprising to me. Last week, he had a vision screening

(standard rule-out), and it turns out he cannot cross his eyes at all, he

cannot move them past midline when watching a fingertip, pen, whatever. If

something is too close to his face, he can't see it at all, and has double

vision with things that are close. He also has difficulty tracking anything

that is close to his face. This was blamed on weak eye muscles, and he will

be going to vision therapy. I know there is often an eye component to mito

with weak eye muscles. Not this, right? Anyone know anything about this

kind of eye issue?

Thanks, \

[Guest guest]

Interesting Kass about Madison's sleep study. also has frequent arousals

(but no complaints of pain), long night time sleep and then REM onset naps 2x

during the next day. Did Madison's sleep study include a nap study the next

day? Of course I'm intrigued since our kiddos present so similarly.

Regarding the muscle issue...we're still at Mayo, but 's EMG did come back

showing myopathy and all the docs agree that has muscle wasting, but his

is all proximal, from shoulders to hips.

We are not treating 's night time sleep issue, due to politics in Seattle.

We have a repeat sleep study scheduled here for Nov. 7th, but we're not staying

that long, so I hope to get the sleep study repeated in Seattle after we get

back (since had pCO2 elevations also on his sleep study).

Hang in there and have a fantastic trip,

Dena

p.s. Having 4 kids with significant reflux, yes, aspiration from reflux happens

quickly. Last October, was fine one day and in the hospital with a

reflux aspiration pneumonia 24 hrs. later.

[Guest guest]

{{{{{{{{Dena}}}}}}}

Sorry I have been so MIA lately. I have been reading of

your adventures at Mayo closely and have been keeping you all in my thoughts

and prayers. I know its been an incredibly long haul there and that

you've got to be desperate to get back home to your "little island".

:-) Hope its soon hun.

Yet another connection between our kids!!! No, they did not do

a nap study on her.....actually didn't even realize that there was such

a thing!! Course, nothing can ever be clear cut over here so we're

making some guesses at this point about whats going on. Something

is obviously waking her very frequently, just not something that we can

be for sure about. Keep me posted on what happens when you get another

one done on .

Thanks for sharing what your seeing with and the muscle wasting.

Not really sure of what to make of Chance's...its definatly an interesting

pattern to see.

Thanks too for the feedback on the aspiration....even if its not exactly

what I want to hear!! She's still wheezing, but otherwise has remained

symptom free. Hoping it stays that way since we have her on the antibiotics.

Thanks for the good wishes on our trip. Looking VERY forward to

escaping reality for a week!!!

Know I am keeping you all in my thoughts hun. Your incredibly

strong and resourcful and making a real difference for those kiddo's out

there.

BIG hugs,

Kass

waislandgirl@... wrote:

Interesting Kass about Madison's sleep

study. also has frequent arousals (but no complaints of pain),

long night time sleep and then REM onset naps 2x during the next day.

Did Madison's sleep study include a nap study the next day? Of course

I'm intrigued since our kiddos present so similarly.

Regarding the muscle issue...we're still at Mayo, but 's EMG

did come back showing myopathy and all the docs agree that has muscle

wasting, but his is all proximal, from shoulders to hips.

We are not treating 's night time sleep issue, due to politics

in Seattle. We have a repeat sleep study scheduled here for Nov.

7th, but we're not staying that long, so I hope to get the sleep study

repeated in Seattle after we get back (since had pCO2 elevations

also on his sleep study).

Hang in there and have a fantastic trip,

Dena

p.s. Having 4 kids with significant reflux, yes, aspiration

from reflux happens quickly. Last October, was fine one day

and in the hospital with a reflux aspiration pneumonia 24 hrs. later.

[Guest guest]

Hi Carol!!! It IS good to see you posting.

Scary thing is, I didn't even share everything thats happening over

here right now!!! Suffice it to say its been a wild couple of weeks.....LOL.

I am ready to get off the merry go round!!! :-)

Sorry to hear your kiddo is under the weather!!! Hope the doc

appointment goes well this afternoon.

Thanks for sharing what your seeing muscle-wise with your kids, and

for the feedback on the neurontin. Really helps hun.

We'll do our best to have some fun....LOL.

BIG hugs,

Kass

DuPont wrote:

Hey

Kass! Wow...you have

a LOT going on! With

regard to loss of muscle mass.... My

youngest has experienced this as well. He is not eligible for PT

right now at school and he is functioning well although we have some fatigue.

Coincidentally, he too is home sick. 4 days with a low grade fever

and a cough to scare the daylights out of you! We're going to the

doc today. My youngest,

Neal's, arms are thin as well. He stomach, however, has developed

a nasty case of cellulite! You might remember he is my horseback

rider and rides 4-5 X a week. We started it as therapy and it grew

into his own pony....lol. Anyway. I know the riding is helping

his trunk, but not enough. I have him sit on an exercise ball while

watching tv too. When

Neal saw Dr. Kelley, he mentioned the muscles being so weak. I don't

know if I'm hallucinating, but he also mentioned possibly doing some real

mild weight training! I just don't know if that's something PT could

do...I could do? If

anyone has done any mild weight training with their kids...please let me

know! OKAY....I have

no experience with Klonipin but I can tell you about Neurontin as I am

on it as well. I find

the Neurontin helps my neuropathy...but I did have some issues when I first

started it. I have

to get up and pee a lot. When I first started it I felt very groggy

in the morning. I would

watch the liquid intake at night. The grogginess goes away with time. Have

FUN!!!! in HAWAII!!!!! Carol

Looking for thoughts

Hi friends :-)

Sorry I have been so quiet lately, things are hectic over here.

I've

been reading though and sending thoughts and prayers where needed.

Welcome to all our new members too!!!

As always, when I need some knowledgable feedback, you all are who

I

come to :-)

Couple of things......

I had asked a question a while back about an observation I had

made that

it appeared Chance's arms were really thinning down, maybe even

"losing"

muscle mass. You all were wonderful as usual with your responses,

but

at the time, I just wasn't sure if I might be "seeing things".

Well, a

few things have come to light that I *think* lends itself to the

idea

that there is definatly something going on here, and guess I just

need

someone else to either say they agree or how I might be misinterpreting

it (honestly would love someone to tell me I am dreaming!!).

The first

thing is that Dr. Cohen did say that he was "low tone and low mass"

in

his forearms and hands. In that he's never really been considered

low

tone before (there was a time when they said he was in the

shoulder-girdle area, however then someone else would say he was

not),

this appears to be a "new" thing. Still wasn't sure though

whether it

was something thats been there all along and we just missed it,

or

more. I was prompted to look back at some old OT reports

on him after

getting his PT eval report this week, mostly because it noted his

manual

dexterity was the worst of the three areas tested. I thought

I

remembered that in the past his upper limb speed and dexterity

had been

age appropriate or better, but wasn't for sure.

So I went back and looked at all of his OT reports and the one PT

report. He'd had three full OT evals previously, with the

last one

being February 2001, and due to unforseen insurance issues, he

has 2 OT

reports for this year (February and June) and then the PT report

from

September. Sure enough the three from previous years has

his upper limb

speed and dexterity at age appropriate or better (last February

he was

ABOVE age approp at a 9yr old level...he was 8 1/2) and that this

was

his best area of the ones tested. All three reports from

this year have

upper limb speed and dexterity as his WORST area with a VERY significant

drop in skill level. Were it just one report I might could

tell myself

he was just having a bad day or was not cooperating, but have a

hard

time telling myself that when all three show such a significant

drop. I

also had a chance to chat with his PT this last week and sure enough,

its his upper body strength he is struggling with the most.

Have also

noted that both arms are very thin all the way into the shoulder,

while

he's nicely filled out everywhere else. SO.....thinking this

might

explain the regression in handwriting skills, and more scary, that

this

seems to indicate that he really is losing muscle in his arms.

I am

assuming there is not much of anything we can do about it, but

would

love to hear from anyone that has any ideas for me. And definatly

want

to hear from anyone that might have some other ideas about what

might be

happening.

As an aside.......I was really shocked by his PT report as we've

always

known Chance was clumsy and not all that coordinated, but we'd

never

even considered the thought that he might be eligible for PT.

It was

his OT that did the eval in June that said she thought he might

benefit

from some aquatic PT so we went ahead with the eval. She

did the

Movement ABC and his scores indicate that he is BELOW the 1st percentile

for his age group and that this shows a definite motor deficiency.

A

total surprise and shock to me!!! Not sure whether this has

always been

the case and we just missed it, or of its something new too.

Then there is Abigail (4 1/2)......my healthy one!!! Well,

atleast

thats what I keep trying to tell myself. Abby started refluxing

in

January of this year (which interestingly is about the same age

that we

discovered that Madison was refluxing too), and it is the type

where she

was getting a mouthful and needing to spit it out (so, refluxing

all the

way into her mouth). To make a long story short, we've tried

a couple

of different meds and are currently on Zantac (150mgs a day) and

she is

STILL refluxing all the way into her mouth. There's been

no testing

done as the wait to see a GI doc here is anywhere from 3-6 months

and we

really thought we were going to be able to get a handle on things

without having to go that route. So the ped is handling it

thus far.

We went in to see her this last week and discussed again that the

reflux

is still happening and she's now approved us to go up to 225mgs

of

Zantac to see if that helps. I am NOT at all confident this

is going to

stop it, and am a little concerned about her being on such a high

dose,

but will give it a try and see.

We were there to see the ped for other reasons, but Abby began coughing

that morning when she got up (7:30 or so...and saw the ped at 9)

and I

figured since we were there I'd have her checked. She had

no fever,

had/has no symptoms earlier in the week or that day other than

the

cough, no one else in the house sick, but she has BRONCHITIS!!

We're

treating with antibiotics but the ped is wondering if its not from

aspiration considering the onset and the known refluxing she's

doing.

SO...for those that have dealt with aspiration pneumonia's, is

this what

you've seen in your kids?? Basically, sudden onset, little

or no other

symptoms, and recurrent refluxing into the mouth. I want

desperatly to

not think this is whats happening, but am having a hard time figuring

out what else might be going on. Am SO thankful we were there

that

morning and had her checked out because Lord knows I'd never have

taken

her in for a cough!!!

Finally, we're having some troubles with Madison's meds and I need

some

feedback. We recently did a sleep study that showed 111 arousals

in a 6

hour period of time, which explained the activity in her sleep,

and

likely some of her daytime fatigue. The sleep doc initially

questioned

pain as the cause after he looked over the testing, but while we

know

Madison does have some pain in her legs its hard to say how much

of the

time. With that, he decided to call it a sleep movement disorder,

but

did NOT call it one of the known sleep movement disorders (I am

assuming

the testing did not show the tell-tell movements to confirm this).

With

that she was put in Klonipan at 0.125mgs at night. At this

dose, for

whatever reason she was having a harder time falling asleep, but

WAS

sleeping better once she was out. We raised the dose to 0.250mgs

and

this seemed to do the trick. Problem is....she started school

about the

same time as starting the Klonipan so its impossible to know which

one,

or if both are contributing to an increase in day time faatigue

we've

been seeing since then. We spoke to Dr. Cohen about it all

and his

feeling is that its Peripheral Neuropathy pain and he recommends

we take

her off the Klonipan and get her onto Neurontin. We started

the

Neurontin 3 nights ago (and ceased giving the Klonipan) at 100mgs

(next

week we'll raise it to 200mgs, followed by 300mgs the next week).

We've

had three bad nights, with lots of moving aaround, waking one night

with

a nightmare, and one night wetting the bed (something she has done

almost never). I do think the Neurontin is the way to go,

just hate to

think it might be a few more weeks before she gets a decent nights

sleep

while we work her up on the dose. Any suggestions??

Might we keep her

on the Klonipan till we reach the full dose of Neurontin??

Or do we

just need to ride this out??

Thanks for any thoughts you all might have!!!! Why is it when

it rains,

it pours!!??

BIG hugs,

Kass, proud mom to Chance(9), Madison(5....almost 6) and Abby (4

1/2)

PS....thinking and worrying about all of this for FOUR more days

and

then we are off to sunny Hawaii for Chance's Make A Wish trip!!!!

I am

determined to leave absolutly ALL of it at the door here when we

leave

and go and just be HAPPY for 8 days :-)

[Guest guest]

Kass,

The only experience I have is with the reflux. As for my Sam, yes,

brochitis, croup sudden resp infections happened fast. When Sam is having

issues of reflux she does " burp " it into mouth and even throws up with it.

Before her g-tube, Sam would be fine one nite and either early in am or

middle of night she would wake up coughing horribly and would even go

through spasm like coughing jags. Whwn I would take her in, sure enough it

would be some sort of resp infection. Only a few times did it turn to

pnuemonia for her, maybe I did not get her in quick enough. but it did seem

as though she was fine and then Wham, she was coughing bad. Reflux can cause

aspiration and micro aspiration. I dont know if this answers any of your

questions. if ya have any more please feel free to ask.

---s mom-5-mito -2-asthma

>

>Reply-To: Mito

>To: Mito

>Subject: Re: Looking for thoughts

>Date: Mon, 21 Oct 2002 06:07:28 -0400

>

>Hey Kass!

>

>Wow...you have a LOT going on!

>

>With regard to loss of muscle mass....

>

>My youngest has experienced this as well. He is not eligible for PT right

>now at school and he is functioning well although we have some fatigue.

>Coincidentally, he too is home sick. 4 days with a low grade fever and a

>cough to scare the daylights out of you! We're going to the doc today.

>

>My youngest, Neal's, arms are thin as well. He stomach, however, has

>developed a nasty case of cellulite! You might remember he is my horseback

>rider and rides 4-5 X a week. We started it as therapy and it grew into

>his own pony....lol. Anyway. I know the riding is helping his trunk, but

>not enough. I have him sit on an exercise ball while watching tv too.

>

>When Neal saw Dr. Kelley, he mentioned the muscles being so weak. I don't

>know if I'm hallucinating, but he also mentioned possibly doing some real

>mild weight training! I just don't know if that's something PT could

>do...I could do?

>

>If anyone has done any mild weight training with their kids...please let me

>know!

>

>OKAY....I have no experience with Klonipin but I can tell you about

>Neurontin as I am on it as well.

>

>I find the Neurontin helps my neuropathy...but I did have some issues when

>I first started it.

>

>I have to get up and pee a lot. When I first started it I felt very groggy

>in the morning.

>

>I would watch the liquid intake at night. The grogginess goes away with

>time.

>

>Have FUN!!!! in HAWAII!!!!!

>

>Carol

> Looking for thoughts

>

>

> Hi friends :-)

>

> Sorry I have been so quiet lately, things are hectic over here. I've

> been reading though and sending thoughts and prayers where needed.

> Welcome to all our new members too!!!

>

> As always, when I need some knowledgable feedback, you all are who I

> come to :-)

>

> Couple of things......

> I had asked a question a while back about an observation I had made that

> it appeared Chance's arms were really thinning down, maybe even " losing "

> muscle mass. You all were wonderful as usual with your responses, but

> at the time, I just wasn't sure if I might be " seeing things " . Well, a

> few things have come to light that I *think* lends itself to the idea

> that there is definatly something going on here, and guess I just need

> someone else to either say they agree or how I might be misinterpreting

> it (honestly would love someone to tell me I am dreaming!!). The first

> thing is that Dr. Cohen did say that he was " low tone and low mass " in

> his forearms and hands. In that he's never really been considered low

> tone before (there was a time when they said he was in the

> shoulder-girdle area, however then someone else would say he was not),

> this appears to be a " new " thing. Still wasn't sure though whether it

> was something thats been there all along and we just missed it, or

> more. I was prompted to look back at some old OT reports on him after

> getting his PT eval report this week, mostly because it noted his manual

> dexterity was the worst of the three areas tested. I thought I

> remembered that in the past his upper limb speed and dexterity had been

> age appropriate or better, but wasn't for sure.

>

> So I went back and looked at all of his OT reports and the one PT

> report. He'd had three full OT evals previously, with the last one

> being February 2001, and due to unforseen insurance issues, he has 2 OT

> reports for this year (February and June) and then the PT report from

> September. Sure enough the three from previous years has his upper limb

> speed and dexterity at age appropriate or better (last February he was

> ABOVE age approp at a 9yr old level...he was 8 1/2) and that this was

> his best area of the ones tested. All three reports from this year have

> upper limb speed and dexterity as his WORST area with a VERY significant

> drop in skill level. Were it just one report I might could tell myself

> he was just having a bad day or was not cooperating, but have a hard

> time telling myself that when all three show such a significant drop. I

> also had a chance to chat with his PT this last week and sure enough,

> its his upper body strength he is struggling with the most. Have also

> noted that both arms are very thin all the way into the shoulder, while

> he's nicely filled out everywhere else. SO.....thinking this might

> explain the regression in handwriting skills, and more scary, that this

> seems to indicate that he really is losing muscle in his arms. I am

> assuming there is not much of anything we can do about it, but would

> love to hear from anyone that has any ideas for me. And definatly want

> to hear from anyone that might have some other ideas about what might be

> happening.

>

> As an aside.......I was really shocked by his PT report as we've always

> known Chance was clumsy and not all that coordinated, but we'd never

> even considered the thought that he might be eligible for PT. It was

> his OT that did the eval in June that said she thought he might benefit

> from some aquatic PT so we went ahead with the eval. She did the

> Movement ABC and his scores indicate that he is BELOW the 1st percentile

> for his age group and that this shows a definite motor deficiency. A

> total surprise and shock to me!!! Not sure whether this has always been

> the case and we just missed it, or of its something new too.

>

> Then there is Abigail (4 1/2)......my healthy one!!! Well, atleast

> thats what I keep trying to tell myself. Abby started refluxing in

> January of this year (which interestingly is about the same age that we

> discovered that Madison was refluxing too), and it is the type where she

> was getting a mouthful and needing to spit it out (so, refluxing all the

> way into her mouth). To make a long story short, we've tried a couple

> of different meds and are currently on Zantac (150mgs a day) and she is

> STILL refluxing all the way into her mouth. There's been no testing

> done as the wait to see a GI doc here is anywhere from 3-6 months and we

> really thought we were going to be able to get a handle on things

> without having to go that route. So the ped is handling it thus far.

> We went in to see her this last week and discussed again that the reflux

> is still happening and she's now approved us to go up to 225mgs of

> Zantac to see if that helps. I am NOT at all confident this is going to

> stop it, and am a little concerned about her being on such a high dose,

> but will give it a try and see.

>

> We were there to see the ped for other reasons, but Abby began coughing

> that morning when she got up (7:30 or so...and saw the ped at 9) and I

> figured since we were there I'd have her checked. She had no fever,

> had/has no symptoms earlier in the week or that day other than the

> cough, no one else in the house sick, but she has BRONCHITIS!! We're

> treating with antibiotics but the ped is wondering if its not from

> aspiration considering the onset and the known refluxing she's doing.

> SO...for those that have dealt with aspiration pneumonia's, is this what

> you've seen in your kids?? Basically, sudden onset, little or no other

> symptoms, and recurrent refluxing into the mouth. I want desperatly to

> not think this is whats happening, but am having a hard time figuring

> out what else might be going on. Am SO thankful we were there that

> morning and had her checked out because Lord knows I'd never have taken

> her in for a cough!!!

>

> Finally, we're having some troubles with Madison's meds and I need some

> feedback. We recently did a sleep study that showed 111 arousals in a 6

> hour period of time, which explained the activity in her sleep, and

> likely some of her daytime fatigue. The sleep doc initially questioned

> pain as the cause after he looked over the testing, but while we know

> Madison does have some pain in her legs its hard to say how much of the

> time. With that, he decided to call it a sleep movement disorder, but

> did NOT call it one of the known sleep movement disorders (I am assuming

> the testing did not show the tell-tell movements to confirm this). With

> that she was put in Klonipan at 0.125mgs at night. At this dose, for

> whatever reason she was having a harder time falling asleep, but WAS

> sleeping better once she was out. We raised the dose to 0.250mgs and

> this seemed to do the trick. Problem is....she started school about the

> same time as starting the Klonipan so its impossible to know which one,

> or if both are contributing to an increase in day time faatigue we've

> been seeing since then. We spoke to Dr. Cohen about it all and his

> feeling is that its Peripheral Neuropathy pain and he recommends we take

> her off the Klonipan and get her onto Neurontin. We started the

> Neurontin 3 nights ago (and ceased giving the Klonipan) at 100mgs (next

> week we'll raise it to 200mgs, followed by 300mgs the next week). We've

> had three bad nights, with lots of moving aaround, waking one night with

> a nightmare, and one night wetting the bed (something she has done

> almost never). I do think the Neurontin is the way to go, just hate to

> think it might be a few more weeks before she gets a decent nights sleep

> while we work her up on the dose. Any suggestions?? Might we keep her

> on the Klonipan till we reach the full dose of Neurontin?? Or do we

> just need to ride this out??

>

> Thanks for any thoughts you all might have!!!! Why is it when it rains,

> it pours!!??

>

> BIG hugs,

> Kass, proud mom to Chance(9), Madison(5....almost 6) and Abby (4 1/2)

>

> PS....thinking and worrying about all of this for FOUR more days and

> then we are off to sunny Hawaii for Chance's Make A Wish trip!!!! I am

> determined to leave absolutly ALL of it at the door here when we leave

> and go and just be HAPPY for 8 days :-)

>

>

>

>

>

[Guest guest]

Hi , I have heard of opthalmoplegia being associated with certain

mitochondrial diseases. For instance progressive opthalmoplegia (paralysis

of eye muscles) is associated with Kearns Sayre syndrome. Not sure if this

is the same thing as what you are describing though. I hope you are able to

see an expert soon.

Lori and (complex I and IV)

Re: Looking for thoughts

> Hi,

> I've been MIA for months now, but I'm looking for thoughts, too. I

> hopw you don't mind if I jump in here. I have a little mito girl, ,

5,

> but I am looking for thoughts about a sibling. Mark, 6. Mark is healthy,

> smart, cute, fine, or so I thought. He has been having some trouble

staying

> on task, and was diagnosed recently with ADHD..to know my husband, this

was a

> little less than surprising to me. Last week, he had a vision screening

> (standard rule-out), and it turns out he cannot cross his eyes at all, he

> cannot move them past midline when watching a fingertip, pen, whatever.

If

> something is too close to his face, he can't see it at all, and has double

> vision with things that are close. He also has difficulty tracking

anything

> that is close to his face. This was blamed on weak eye muscles, and he

will

> be going to vision therapy. I know there is often an eye component to

mito

> with weak eye muscles. Not this, right? Anyone know anything about this

> kind of eye issue?

> Thanks, \

>

>

>

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

>

>

[Guest guest]

Thanks so much :-)

BIG hugs,

Kass

R wrote:

Aloha Kass,

Just

wanted to send you warm wishes and pleasant thoughts as you head off to Hawaii.

I

know Dena is dealing with muscle wasting with . They

are at Mayo right now trying polycose and

pectin (?) maybe.Anyway she might

be able to give you a heads up on what they are trying.No

more info just well wishes for a great time.And

I wholeheartedly support you leaving all the problems at the door and getting

some R and R.

Take

care,

Riley

-----Original

Message-----

From:

Kass

Sent:

Sunday, October 20, 2002 10:26 PM

To:

Mito

Subject:

Looking for thoughts

Hi

friends :-)

Sorry I have been so quiet

lately, things are hectic over here. I've

been reading though and

sending thoughts and prayers where needed.

Welcome to all our new members

too!!!

As always, when I need some

knowledgable feedback, you all are who I

come to :-)

Couple of things......

I had asked a question a

while back about an observation I had made that

it appeared Chance's arms

were really thinning down, maybe even "losing"

muscle mass. You all

were wonderful as usual with your responses, but

at the time, I just wasn't

sure if I might be "seeing things". Well, a

few things have come to

light that I *think* lends itself to the idea

that there is definatly

something going on here, and guess I just need

someone else to either say

they agree or how I might be misinterpreting

it (honestly would love

someone to tell me I am dreaming!!). The first

thing is that Dr. Cohen

did say that he was "low tone and low mass" in

his forearms and hands.

In that he's never really been considered low

tone before (there was a

time when they said he was in the

shoulder-girdle area, however

then someone else would say he was not),

this appears to be a "new"

thing. Still wasn't sure though whether it

was something thats been

there all along and we just missed it, or

more. I was prompted

to look back at some old OT reports on him after

getting his PT eval report

this week, mostly because it noted his manual

dexterity was the worst

of the three areas tested. I thought I

remembered that in the past

his upper limb speed and dexterity had been

age appropriate or better,

but wasn't for sure.

So I went back and looked

at all of his OT reports and the one PT

report. He'd had three

full OT evals previously, with the last one

being February 2001, and

due to unforseen insurance issues, he has 2 OT

reports for this year (February

and June) and then the PT report from

September. Sure enough

the three from previous years has his upper limb

speed and dexterity at age

appropriate or better (last February he was

ABOVE age approp at a 9yr

old level...he was 8 1/2) and that this was

his best area of the ones

tested. All three reports from this year have

upper limb speed and dexterity

as his WORST area with a VERY significant

drop in skill level.

Were it just one report I might could tell myself

he was just having a bad

day or was not cooperating, but have a hard

time telling myself that

when all three show such a significant drop. I

also had a chance to chat

with his PT this last week and sure enough,

its his upper body strength

he is struggling with the most. Have also

noted that both arms are

very thin all the way into the shoulder, while

he's nicely filled out everywhere

else. SO.....thinking this might

explain the regression in

handwriting skills, and more scary, that this

seems to indicate that he

really is losing muscle in his arms. I am

assuming there is not much

of anything we can do about it, but would

love to hear from anyone

that has any ideas for me. And definatly want

to hear from anyone that

might have some other ideas about what might be

happening.

As an aside.......I was really

shocked by his PT report as we've always

known Chance was clumsy

and not all that coordinated, but we'd never

even considered the thought

that he might be eligible for PT. It was

his OT that did the eval

in June that said she thought he might benefit

from some aquatic PT so

we went ahead with the eval. She did the

Movement ABC and his scores

indicate that he is BELOW the 1st percentile

for his age group and that

this shows a definite motor deficiency. A

total surprise and shock

to me!!! Not sure whether this has always been

the case and we just missed

it, or of its something new too.

Then there is Abigail (4

1/2)......my healthy one!!! Well, atleast

thats what I keep trying

to tell myself. Abby started refluxing in

January of this year (which

interestingly is about the same age that we

discovered that Madison

was refluxing too), and it is the type where she

was getting a mouthful and

needing to spit it out (so, refluxing all the

way into her mouth).

To make a long story short, we've tried a couple

of different meds and are

currently on Zantac (150mgs a day) and she is

STILL refluxing all the

way into her mouth. There's been no testing

done as the wait to see

a GI doc here is anywhere from 3-6 months and we

really thought we were going

to be able to get a handle on things

without having to go that

route. So the ped is handling it thus far.

We went in to see her this

last week and discussed again that the reflux

is still happening and she's

now approved us to go up to 225mgs of

Zantac to see if that helps.

I am NOT at all confident this is going to

stop it, and am a little

concerned about her being on such a high dose,

but will give it a try and

see.

We were there to see the

ped for other reasons, but Abby began coughing

that morning when she got

up (7:30 or so...and saw the ped at 9) and I

figured since we were there

I'd have her checked. She had no fever,

had/has no symptoms earlier

in the week or that day other than the

cough, no one else in the

house sick, but she has BRONCHITIS!! We're

treating with antibiotics

but the ped is wondering if its not from

aspiration considering the

onset and the known refluxing she's doing.

SO...for those that have

dealt with aspiration pneumonia's, is this what

you've seen in your kids??

Basically, sudden onset, little or no other

symptoms, and recurrent

refluxing into the mouth. I want desperatly to

not think this is whats

happening, but am having a hard time figuring

out what else might be going

on. Am SO thankful we were there that

morning and had her checked

out because Lord knows I'd never have taken

her in for a cough!!!

Finally, we're having some

troubles with Madison's meds and I need some

feedback. We recently

did a sleep study that showed 111 arousals in a 6

hour period of time, which

explained the activity in her sleep, and

likely some of her daytime

fatigue. The sleep doc initially questioned

pain as the cause after

he looked over the testing, but while we know

Madison does have some pain

in her legs its hard to say how much of the

time. With that, he

decided to call it a sleep movement disorder, but

did NOT call it one of the

known sleep movement disorders (I am assuming

the testing did not show

the tell-tell movements to confirm this). With

that she was put in Klonipan

at 0.125mgs at night. At this dose, for

whatever reason she was

having a harder time falling asleep, but WAS

sleeping better once she

was out. We raised the dose to 0.250mgs and

this seemed to do the trick.

Problem is....she started school about the

same time as starting the

Klonipan so its impossible to know which one,

or if both are contributing

to an increase in day time faatigue we've

been seeing since then.

We spoke to Dr. Cohen about it all and his

feeling is that its Peripheral

Neuropathy pain and he recommends we take

her off the Klonipan and

get her onto Neurontin. We started the

Neurontin 3 nights ago (and

ceased giving the Klonipan) at 100mgs (next

week we'll raise it to 200mgs,

followed by 300mgs the next week). We've

had three bad nights, with

lots of moving aaround, waking one night with

a nightmare, and one night

wetting the bed (something she has done

almost never). I do

think the Neurontin is the way to go, just hate to

think it might be a few

more weeks before she gets a decent nights sleep

while we work her up on

the dose. Any suggestions?? Might we keep her

on the Klonipan till we

reach the full dose of Neurontin?? Or do we

just need to ride this out??

Thanks for any thoughts you

all might have!!!! Why is it when it rains,

it pours!!??

BIG hugs,

Kass, proud mom to Chance(9),

Madison(5....almost 6) and Abby (4 1/2)

PS....thinking and worrying

about all of this for FOUR more days and

then we are off to sunny

Hawaii for Chance's Make A Wish trip!!!! I am

determined to leave absolutly

ALL of it at the door here when we leave

and go and just be HAPPY

for 8 days :-)

Please

contact mito-owner with any problems or questions.

Your

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Terms of Service.

Please contact mito-owner with any problems or

questions.

[Guest guest]

Kass:

Which one of the Islands are you going to? One thing to keep in mind is if

you go to the beach at all, go in the morning. My brother lived on Maui and

they learned to go to the beach in the morning like every one else and say

the afternoon for the tourists and they also found out that it is hotter in

the afternoon. But it is sure beautiful over there. You are going at a good

time. Have fun, relax, take pictures and come back refreshed and refueled

and recharged.

N. mom to Leah

Kass wrote:

> Hi friends :-)

>

> Sorry I have been so quiet lately, things are hectic over here. I've

> been reading though and sending thoughts and prayers where needed.

> Welcome to all our new members too!!!

>

> As always, when I need some knowledgable feedback, you all are who I

> come to :-)

>

> Couple of things......

> I had asked a question a while back about an observation I had made that

> it appeared Chance's arms were really thinning down, maybe even " losing "

> muscle mass. You all were wonderful as usual with your responses, but

> at the time, I just wasn't sure if I might be " seeing things " . Well, a

> few things have come to light that I *think* lends itself to the idea

> that there is definatly something going on here, and guess I just need

> someone else to either say they agree or how I might be misinterpreting

> it (honestly would love someone to tell me I am dreaming!!). The first

> thing is that Dr. Cohen did say that he was " low tone and low mass " in

> his forearms and hands. In that he's never really been considered low

> tone before (there was a time when they said he was in the

> shoulder-girdle area, however then someone else would say he was not),

> this appears to be a " new " thing. Still wasn't sure though whether it

> was something thats been there all along and we just missed it, or

> more. I was prompted to look back at some old OT reports on him after

> getting his PT eval report this week, mostly because it noted his manual

> dexterity was the worst of the three areas tested. I thought I

> remembered that in the past his upper limb speed and dexterity had been

> age appropriate or better, but wasn't for sure.

>

> So I went back and looked at all of his OT reports and the one PT

> report. He'd had three full OT evals previously, with the last one

> being February 2001, and due to unforseen insurance issues, he has 2 OT

> reports for this year (February and June) and then the PT report from

> September. Sure enough the three from previous years has his upper limb

> speed and dexterity at age appropriate or better (last February he was

> ABOVE age approp at a 9yr old level...he was 8 1/2) and that this was

> his best area of the ones tested. All three reports from this year have

> upper limb speed and dexterity as his WORST area with a VERY significant

> drop in skill level. Were it just one report I might could tell myself

> he was just having a bad day or was not cooperating, but have a hard

> time telling myself that when all three show such a significant drop. I

> also had a chance to chat with his PT this last week and sure enough,

> its his upper body strength he is struggling with the most. Have also

> noted that both arms are very thin all the way into the shoulder, while

> he's nicely filled out everywhere else. SO.....thinking this might

> explain the regression in handwriting skills, and more scary, that this

> seems to indicate that he really is losing muscle in his arms. I am

> assuming there is not much of anything we can do about it, but would

> love to hear from anyone that has any ideas for me. And definatly want

> to hear from anyone that might have some other ideas about what might be

> happening.

>

> As an aside.......I was really shocked by his PT report as we've always

> known Chance was clumsy and not all that coordinated, but we'd never

> even considered the thought that he might be eligible for PT. It was

> his OT that did the eval in June that said she thought he might benefit

> from some aquatic PT so we went ahead with the eval. She did the

> Movement ABC and his scores indicate that he is BELOW the 1st percentile

> for his age group and that this shows a definite motor deficiency. A

> total surprise and shock to me!!! Not sure whether this has always been

> the case and we just missed it, or of its something new too.

>

> Then there is Abigail (4 1/2)......my healthy one!!! Well, atleast

> thats what I keep trying to tell myself. Abby started refluxing in

> January of this year (which interestingly is about the same age that we

> discovered that Madison was refluxing too), and it is the type where she

> was getting a mouthful and needing to spit it out (so, refluxing all the

> way into her mouth). To make a long story short, we've tried a couple

> of different meds and are currently on Zantac (150mgs a day) and she is

> STILL refluxing all the way into her mouth. There's been no testing

> done as the wait to see a GI doc here is anywhere from 3-6 months and we

> really thought we were going to be able to get a handle on things

> without having to go that route. So the ped is handling it thus far.

> We went in to see her this last week and discussed again that the reflux

> is still happening and she's now approved us to go up to 225mgs of

> Zantac to see if that helps. I am NOT at all confident this is going to

> stop it, and am a little concerned about her being on such a high dose,

> but will give it a try and see.

>

> We were there to see the ped for other reasons, but Abby began coughing

> that morning when she got up (7:30 or so...and saw the ped at 9) and I

> figured since we were there I'd have her checked. She had no fever,

> had/has no symptoms earlier in the week or that day other than the

> cough, no one else in the house sick, but she has BRONCHITIS!! We're

> treating with antibiotics but the ped is wondering if its not from

> aspiration considering the onset and the known refluxing she's doing.

> SO...for those that have dealt with aspiration pneumonia's, is this what

> you've seen in your kids?? Basically, sudden onset, little or no other

> symptoms, and recurrent refluxing into the mouth. I want desperatly to

> not think this is whats happening, but am having a hard time figuring

> out what else might be going on. Am SO thankful we were there that

> morning and had her checked out because Lord knows I'd never have taken

> her in for a cough!!!

>

> Finally, we're having some troubles with Madison's meds and I need some

> feedback. We recently did a sleep study that showed 111 arousals in a 6

> hour period of time, which explained the activity in her sleep, and

> likely some of her daytime fatigue. The sleep doc initially questioned

> pain as the cause after he looked over the testing, but while we know

> Madison does have some pain in her legs its hard to say how much of the

> time. With that, he decided to call it a sleep movement disorder, but

> did NOT call it one of the known sleep movement disorders (I am assuming

> the testing did not show the tell-tell movements to confirm this). With

> that she was put in Klonipan at 0.125mgs at night. At this dose, for

> whatever reason she was having a harder time falling asleep, but WAS

> sleeping better once she was out. We raised the dose to 0.250mgs and

> this seemed to do the trick. Problem is....she started school about the

> same time as starting the Klonipan so its impossible to know which one,

> or if both are contributing to an increase in day time faatigue we've

> been seeing since then. We spoke to Dr. Cohen about it all and his

> feeling is that its Peripheral Neuropathy pain and he recommends we take

> her off the Klonipan and get her onto Neurontin. We started the

> Neurontin 3 nights ago (and ceased giving the Klonipan) at 100mgs (next

> week we'll raise it to 200mgs, followed by 300mgs the next week). We've

> had three bad nights, with lots of moving aaround, waking one night with

> a nightmare, and one night wetting the bed (something she has done

> almost never). I do think the Neurontin is the way to go, just hate to

> think it might be a few more weeks before she gets a decent nights sleep

> while we work her up on the dose. Any suggestions?? Might we keep her

> on the Klonipan till we reach the full dose of Neurontin?? Or do we

> just need to ride this out??

>

> Thanks for any thoughts you all might have!!!! Why is it when it rains,

> it pours!!??

>

> BIG hugs,

> Kass, proud mom to Chance(9), Madison(5....almost 6) and Abby (4 1/2)

>

> PS....thinking and worrying about all of this for FOUR more days and

> then we are off to sunny Hawaii for Chance's Make A Wish trip!!!! I am

> determined to leave absolutly ALL of it at the door here when we leave

> and go and just be HAPPY for 8 days :-)

>

>

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

>

>