Re: sleeping patterns

[Guest guest]

Hi ,

has always done this. Since he was a baby he would " wake up "

about 2 hours after he went to bed. Some nights the episodes were only one

time, but others it would go on all night long every two hours. He would

cry out horribly like he was in pain but he wasn't. There was no consoling

him or cuddling as that would just piss him off even more and make the

episodes last longer. I went through everything in our routine to see what

it was that could be causing it. We thought it was dairy products too close

to bed time, staying up too late, too much activity that day, and on and on

it went. Nothing made sense. When he was about 7 we talked to the neuro

about it and he said it sounded like night terrors. He put on

apam and it has been a life saver, for me AND Chris. ) He said the

apam (Valium) works to change the brain waves and thus the sleeping

pattern. It doesn't sedate or knock him out. As a matter of fact I can

give his pill and hour or so before bed and we won't even get tired.

No more than usual. Also, if he does wake up (if I forgot to give him his

pill) I find that " yelling " and being " rough " with him while repositioning

helps. It's like he's in between sleep and deep sleep and roughing him up

snaps him out of the limbo, know what I mean?

I hope that helps. I can't help you with the fevers though, sorry.

Best of luck...

Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker,

g-tube (12 Jan)

-8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

[Guest guest]

Hi ,

Once again I can relate to you. Three of my four children did this though

their first 12-18 months. While they could not ell me for certain - I am

almost 100% sure it was due to refluxing. They all had pH probe studies

that showed they refluxed more than 80% of their sleeping hours.

I had a mom call me the other night who is going through this as well. The

hospital referred her to me as her daughter is suspected of having Mito.

It's awful -I can really sympathize. I felt so helpless and incapable as

a mom to do anything for my children . Sam and zach were the worst and

often could not sustain more than 45 min of sleep before waking up. They

could fall asleep no problem but just could not sustain it.

One thing I used to do is keep gaviscon, (an over the counter antacid) in a

syringe at their bedside. As soon as I heard them wake I would dash

upstairs and squirt it in their mouth as quick as I could. many times this

helped them go right back - it provides instant relief versus the

prescription drugs which should simply prevent things but are not good for

acute pain. of course there were times it did not help too.

WE had the heads of their beds elevated and the boys slept in a sling to

keep them in that position that the OT made for them.

It became a negative spiral for the kids - lack of sleep caused more reflux

- caused more lack of sleep, etc. during one hospitalization when it was

to the point that Sam could not sleep at all the doctors started him on

Benadryl IV 30 min before bedtime and then every 6 hrs until morning. That

helped somewhat. They eventually added in small doses of valium - they

were sub therapeutic but with the Benadryl it helped a lot.

The single best thing for Zachary was having a fundoplication done for the

reflux. The surgery itself is one I have many questions about for many

reasons but it gave him a comfort level and quality of life I never dreamed

possible. will have this surgery this spring as well and I hope it

improves his pain and subsequent migraine headaches as well.

I should also mention that Sammy had an exagerated startle reflex for the

first 18 months. Anything would wake him up and he would be in a panic.

The valium did help that as well.

Anne

----------

>

> To: mitoonelist

> Subject: sleeping patterns

> Date: Monday, January 10, 2000 2:51 PM

>

>

>

> Hi everyone. I had a couple of questions that I'm hoping someone might

> be able to help with.

> has been waking up in the middle of the night just screaming. He

> will be sound asleep, and will wake very suddenly. Often when he does

> this, he is inconsolable fro a half hour or more. Has anyone else

> experienced this? is 12 mos. old, and functioning fairly well

> cognitively. Could he be having nightmares, or is something else going

> on?? He does this several times a night.

> Also, 's temperature is starting to climb again. He registered at

> 100.1 today. Right now, I'm just keeping an eye on him. My question is,

> why does he seem to do so much better when we are at the hospital, only

> to relapse within a day or two of coming home? I thought that maybe

> something in the house was causing it, but then, he only starts to have

> difficulty breathing when his temp goes up, and something in the house

> wouldn't cause him to have a fever, would it??

> Thanks for any help.

>

> , mommy to

> Adrienne 7, Grace 2, and 1 (Pearson's Syndrome)

>

>

>

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

[Guest guest]

Hi ,

I hope I didn't come across wrong here!! I am not harsh with I just

flip him over and tell him in a firm voice to go back to sleep. Sometimes I do

have to be firm with him until he cries or he just won't sleep. It's the oddest

thing. I know it SOUNDS horrendous, but I just want everyone to know that I

don't beat my kids while they sleep!! )

Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, g-tube

(12 Jan)

-8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

Thanks for the input. I have found with Matty that being harsh with him makes

him worse, as does cuddling or trying to pacify him. I'm just about at my wit's

end with this!!!

Our docs have mentioned in passing that if he continues to have these

" episodes " that they might put him on something to help him sleep. I'm glad to

hear that this has helped for Chris. Maybe that's our only option with ,

too.

[Guest guest]

Sue,

Thanks for the input. I have found with Matty that being harsh with

him makes him worse, as does cuddling or trying to pacify him. I'm just

about at my wit's end with this!!!

Our docs have mentioned in passing that if he continues to have these

" episodes " that they might put him on something to help him sleep. I'm

glad to hear that this has helped for Chris. Maybe that's our only

option with , too.

Sue & Jack wrote:

>

>

> Hi ,

> has always done this. Since he was a baby he would " wake

> up "

> about 2 hours after he went to bed. Some nights the episodes were

> only one

> time, but others it would go on all night long every two hours. He

> would

> cry out horribly like he was in pain but he wasn't. There was no

> consoling

> him or cuddling as that would just piss him off even more and make the

>

> episodes last longer. I went through everything in our routine to see

> what

> it was that could be causing it. We thought it was dairy products too

> close

> to bed time, staying up too late, too much activity that day, and on

> and on

> it went. Nothing made sense. When he was about 7 we talked to the

> neuro

> about it and he said it sounded like night terrors. He put on

> apam and it has been a life saver, for me AND Chris. ) He said

> the

> apam (Valium) works to change the brain waves and thus the

> sleeping

> pattern. It doesn't sedate or knock him out. As a matter of fact I

> can

> give his pill and hour or so before bed and we won't even get

> tired.

> No more than usual. Also, if he does wake up (if I forgot to give him

> his

> pill) I find that " yelling " and being " rough " with him while

> repositioning

> helps. It's like he's in between sleep and deep sleep and roughing

> him up

> snaps him out of the limbo, know what I mean?

> I hope that helps. I can't help you with the fevers though,

> sorry.

> Best of luck...

>

> Sue ( & Jack)-worn out parents to the greatest kids on earth in Las

> Vegas, NV

> Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker,

>

> g-tube (12 Jan)

> -8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker,

> trach

> tube (larynotracheomalasia), g-tube/fundo Visit us!

> http://u2.lvcm.com/jscb

>

>

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

> [

[Guest guest]

Sue,

No, I'm sorry, I didn't mean to imply that you were mean to him. I

apologize for coming across that way. I understood what you meant, and

I'm sure everyone else did, too. Sometimes talking in a firm voice is

required.

Sorry for any misunderstanding.

Sue & Jack wrote:

>

>

> Hi , I hope I didn't come across wrong here!! I am not harsh

> with I just flip him over and tell him in a firm voice to go

> back to sleep. Sometimes I do have to be firm with him until he cries

> or he just won't sleep. It's the oddest thing. I know it SOUNDS

> horrendous, but I just want everyone to know that I don't beat my kids

> while they sleep!! ) Sue ( & Jack)-worn out parents to the greatest

> kids on earth in Las Vegas, NV

> Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker,

> g-tube (12 Jan)

> -8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker,

> trach tube (larynotracheomalasia), g-tube/fundo Visit us!

> http://u2.lvcm.com/jscb

>

> Thanks for the input. I have found with Matty that being

> harsh with him makes him worse, as does cuddling or trying

> to pacify him. I'm just about at my wit's end with this!!!

> Our docs have mentioned in passing that if he continues to

> have these " episodes " that they might put him on something

> to help him sleep. I'm glad to hear that this has helped for

> Chris. Maybe that's our only option with , too.

>

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

> [

[Guest guest]

Anne,

Our doctors here are adamant that does NOT have reflux. Right

before Christmas, he had an upper GI with small bowel follow-through, a

barium swallow, and some kind of scan where they measured how fast his

stomach emptied. Based on these tests, they say no reflux. Do you know

if these tests are adequate to check for reflux? Matt has never had a pH

probe done. I do know that he sleeps better sitting up than lying down,

but not much.

Our doc also mentioned benedryl to help Matty sleep, but she was

worried because he can only take it IV. It helps him to sleep if given

IV, but makes him jittery and anxious if given orally. How weird is

that? Anyway, she just mentioned how hard it would be because Matty's

tpn runs for 16 hours, and his central line is only a single lumen, so I

would constantly have to interrupt his tpn. I wouldn't mind though, if

it would help the poor boy to have a decent night's sleep. I don't think

he has slept through a whole night for months now. They are not willing

to even discuss a fundo, since they do not believe that he has reflux.

They did recommend that I give mylanta every 6 hours, I think,

but will not take it because of the taste. He just gags and

throws up. So maybe I will try the gaviscon.

I talked to L.A. today, and Dr. Boles only wants to see Matty for 2

hours, no inpatient and no testing. They said that he will recommend to

our local doctors any testing that he feels needs to be done. My

question to you is, will this be worth our trip out there? We would have

to fly on the 23rd, see the doctor on the 24th, and fly home on the

25th. Our trip to San Diego was very stressful on , he was very

sick for a long time after we got home, so I don't want to put him

through that again unnecessarily. Of course, I want to do what is best

for him....

" Anne K. Juhlmann " wrote:

>

>

> Hi ,

> Once again I can relate to you. Three of my four children did this

> though

> their first 12-18 months. While they could not ell me for certain - I

> am

> almost 100% sure it was due to refluxing. They all had pH probe

> studies

> that showed they refluxed more than 80% of their sleeping hours.

>

> I had a mom call me the other night who is going through this as

> well. The

> hospital referred her to me as her daughter is suspected of having

> Mito.

> It's awful -I can really sympathize. I felt so helpless and

> incapable as

> a mom to do anything for my children . Sam and zach were the worst

> and

> often could not sustain more than 45 min of sleep before waking up.

> They

> could fall asleep no problem but just could not sustain it.

>

> One thing I used to do is keep gaviscon, (an over the counter antacid)

> in a

> syringe at their bedside. As soon as I heard them wake I would dash

> upstairs and squirt it in their mouth as quick as I could. many times

> this

> helped them go right back - it provides instant relief versus the

> prescription drugs which should simply prevent things but are not good

> for

> acute pain. of course there were times it did not help too.

>

> WE had the heads of their beds elevated and the boys slept in a sling

> to

> keep them in that position that the OT made for them.

>

> It became a negative spiral for the kids - lack of sleep caused more

> reflux

> - caused more lack of sleep, etc. during one hospitalization when it

> was

> to the point that Sam could not sleep at all the doctors started him

> on

> Benadryl IV 30 min before bedtime and then every 6 hrs until morning.

> That

> helped somewhat. They eventually added in small doses of valium -

> they

> were sub therapeutic but with the Benadryl it helped a lot.

>

> The single best thing for Zachary was having a fundoplication done for

> the

> reflux. The surgery itself is one I have many questions about for

> many

> reasons but it gave him a comfort level and quality of life I never

> dreamed

> possible. will have this surgery this spring as well and I

> hope it

> improves his pain and subsequent migraine headaches as well.

>

> I should also mention that Sammy had an exagerated startle reflex for

> the

> first 18 months. Anything would wake him up and he would be in a

> panic.

> The valium did help that as well.

>

> Anne

>

> ----------

> >

> > To: mitoonelist

> > Subject: sleeping patterns

> > Date: Monday, January 10, 2000 2:51 PM

> >

> >

> >

> > Hi everyone. I had a couple of questions that I'm hoping someone

> might

> > be able to help with.

> > has been waking up in the middle of the night just

> screaming. He

> > will be sound asleep, and will wake very suddenly. Often when he

> does

> > this, he is inconsolable fro a half hour or more. Has anyone else

> > experienced this? is 12 mos. old, and functioning fairly

> well

> > cognitively. Could he be having nightmares, or is something else

> going

> > on?? He does this several times a night.

> > Also, 's temperature is starting to climb again. He

> registered at

> > 100.1 today. Right now, I'm just keeping an eye on him. My question

> is,

> > why does he seem to do so much better when we are at the hospital,

> only

> > to relapse within a day or two of coming home? I thought that maybe

> > something in the house was causing it, but then, he only starts to

> have

> > difficulty breathing when his temp goes up, and something in the

> house

> > wouldn't cause him to have a fever, would it??

> > Thanks for any help.

> >

> > , mommy to

> > Adrienne 7, Grace 2, and 1 (Pearson's Syndrome)

> >

> >

> >

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

[Guest guest]

Clayton was a horrible sleeper until this summer when he was 2 1/2. He was up

every night 3-4 times. Initially until 16 months it was from his reflux -

which he had a fundo at 16 months with a g-tube placed. After that he would

wake up screaming 1-2 times a night - not sure why - but never a great

sleeper. We occassionally gave him mediation to help knock him out - but he

still would not sleep through the whole night. THis summer he spent 9 weeks

at KKI in Baltimore and got diagnosed with Mito by Dr. Kelley and was started

on the vitamin cocktail and carnitor. He finally started sleeping better

after about 3 months on the meds and vitamins. He is still not a great

sleeper and still wakes up during the night - but at least now he can usually

put himse;f back to sleep. However, when he was waking up I struggled with

how to best get him back to sleep as often nothing worked.

Love,

Sharon

[Guest guest]

This is so interesting ... Cory used to wake up in during the night

screeching ... we couldn't figure out what was going for a few weeks but for

some reason we'd put him to bed without pj's on and that particular night

while he was crying so hard I had my hand on his calf ... I could feel the

muscle " moving " weirdishly. From there we found that rubbing his legs (deep

massag.) helped tremendously but still getting up 2-3 times a night was

rough. After months and months of trying to get the doctors to listen to us

they finally " saw " <heard> what was going on for themselves (he'd fallen

asleep in the waiting room.... the looks I got from everybody there when he

started wailing was almost comical!) It took a while longer but baclofen did

help some, then we moved onto Botox injections after having such success (yet

temporary) we decided to go with the muscle lengthening surgeries. It's been

over a 1 1/2 years and I'm so glad we did finally make that decision. A

person starts getting loopy when they are sleep deprived!!!! But that's

another story in and of it's own self <wink>

Good luck figuring this one out and please keep us posted on how it's going.

TTYS

Romona

http://members.aol.com/elf808

[Guest guest]

In a message dated 1/11/00 3:37:06 AM Eastern Standard Time,

whyten@... writes:

<< Our doc also mentioned benedryl to help Matty sleep, but she was

worried because he can only take it IV. It helps him to sleep if given

IV, but makes him jittery and anxious if given orally. How weird is

that >>

:

Actually not that weird. ALso does the same thing to CLayton.

Love,

Sharon

[Guest guest]

<<<ROMONA>>>

long time no post! so good to see ya back on the list...or is it me that has

beenmissing your posts?? lol anyway...glad to hear things are going along

reasonably well there...

ruth

[Guest guest]

Sharon,

has just recently started taking Carnitor, he has been on it

for just under a month now, I think. It was recommended that he also

take B-50 vitamins, but so far, I have had no luck in getting him to

take them. He doesn't have a feeding tube, so the vits have to be taken

orally, and the taste (I'm guessing) is so offensive to him that he

refuses any formula or food that has the vitamin mixed in it. I know

that our hospital carries either B-1 or B-2 (I can't remember which) in

an IV form, but not the other one, and we were told that it wouldn't do

any good unless he took both vitamins in the same amount. Any ideas on

how to get him to take it?? I have been unsuccessful in finding a liquid

version of B-50. Someone suggested that I mix it in fruit, as this seems

to kill the taste enough to stand it, but we were told to NEVER give

Matty fruit. Does anyone know if the vitamins would provide enough good

for him to justify the rise in lactate from the fruit? I was told to

give the vitamin in 25mg increments, so I would have to do this twice a

day.

Thanks!!

SDidinsky@... wrote:

> From: SDidinsky@...

>

> Clayton was a horrible sleeper until this summer when he was 2 1/2. He

> was up

> every night 3-4 times. Initially until 16 months it was from his

> reflux -

> which he had a fundo at 16 months with a g-tube placed. After that he

> would

> wake up screaming 1-2 times a night - not sure why - but never a great

>

> sleeper. We occassionally gave him mediation to help knock him out -

> but he

> still would not sleep through the whole night. THis summer he spent 9

> weeks

> at KKI in Baltimore and got diagnosed with Mito by Dr. Kelley and was

> started

> on the vitamin cocktail and carnitor. He finally started sleeping

> better

> after about 3 months on the meds and vitamins. He is still not a great

>

> sleeper and still wakes up during the night - but at least now he can

> usually

> put himse;f back to sleep. However, when he was waking up I struggled

> with

> how to best get him back to sleep as often nothing worked.

>

> Love,

> Sharon

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

> [

[Guest guest]

Sharon,

At least I know that Matty is not the only one who has a " strange "

reaction to benedryl. Were you ever given an explanation as to why

Clayton reacts differently to IV benedryl vs. oral benedryl? Our doctors

think that this is just the strangest thing....

SDidinsky@... wrote:

> From: SDidinsky@...

>

> In a message dated 1/11/00 3:37:06 AM Eastern Standard Time,

> whyten@... writes:

>

> << Our doc also mentioned benedryl to help Matty sleep, but she was

> worried because he can only take it IV. It helps him to sleep if given

>

> IV, but makes him jittery and anxious if given orally. How weird is

> that >>

>

> :

>

> Actually not that weird. ALso does the same thing to CLayton.

>

> Love,

> Sharon

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

> [

[Guest guest]

wendy

just fyi: did you know that everytime you post, there is an attachment to

your posts that is an advertisement? or maybe it's just happening to me?

but it shows up as a file attachment and i keep opening it thinking that it's

a picture or something....

ruth

[Guest guest]

In a message dated 1/11/00 9:47:05 PM Eastern Standard Time,

whyten@... writes:

<< know

that our hospital carries either B-1 or B-2 (I can't remember which) in

an IV form, but not the other one, and we were told that it wouldn't do

any good unless he took both vitamins in the same amount. Any ideas on

how to get him to take it?? I have been unsuccessful in finding a liquid

version of B-50. >>

Clayton is on the vitamin cocktail but he does not have Pearsons - he takes

Co-q10, thiamine (a B vitamin), alpha lipoic acid, vitamin E and Vitamin c)

We get it compounded into a liquid and it smells awful - I would not want to

take it either. I guess that is the good thing about the tube for us.

However, before we got the vitamins compounded I used to crush the tablets

and mix with water to get it through the tube. Good luck.

Love,

Sharon

[Guest guest]

In a message dated 1/11/00 9:57:53 PM Eastern Standard Time,

whyten@... writes:

<< At least I know that Matty is not the only one who has a " strange "

reaction to benedryl. Were you ever given an explanation as to why

Clayton reacts differently to IV benedryl vs. oral benedryl? Our doctors

think that this is just the strangest thing....

>>

No we were not. He always got over stimulated fromt he liquid form - although

some kids due - but when he was int he hospital a couple of times they gave

him IV benadryl and it helped his allergic reaction to something and also

helped him sleep.

No explanation given, but it may have something to due with the absorption of

the medication or metabolization of it.

Love,

Sharon

[Guest guest]

Hi Ruth,

I get the same thing from a few posters. Not only do I get an

attachment, it also shows up at the bottom of the message. Personally I

don't like it. I understand it's probably not the fault of the individual

poster, but rather maybe their mail service or something, so please no one

take offense or it personally. I'm not on the attack!! )

Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker,

g-tube (19 Jan)

-8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

> just fyi: did you know that everytime you post, there is an attachment to

> your posts that is an advertisement? or maybe it's just happening to me?

> but it shows up as a file attachment and i keep opening it thinking that

it's

> a picture or something....

[Guest guest]

i know---weird huh? oh well...it's till not as many ads as you get when you

buy a disney movie!! lol

ruth

[Guest guest]

, an upper GI and gastric emptying can be very useful but do not rule

out reflux. they are one snapshot within the day and many times not

reflective if what is happening the majority of the say. They are often

done simply because if lucky enough the reflux or poor emptying will show

up on them and then they are diagnostic without having to put a child

through more invasive and uncomfortable testing. But our surgeon is

adamant that they are not to be used to say with absolution that there is

no reflux.

The gastric emptying study to be accurate should be done for at least one

hour. Small bowel follow though gives an additional picture of how the

stomach is emptying and how long it takes food to travel though the upper

GI tract and small intestine.

Sam and Zach only take Benadryl IV and we do not need to interrupt their

TPN and lipids for it. if it is incompatible with either someone better

tell the nurses and doctors at our hospital. Now we do hang TPN in a

separate bag from the lipids so perhaps that could be why we don't stop it.

I inject it into the lowest port possible on the TPN tubing. But still

the tubing comes together at the Y site so it is mixing with the lipids. I

have done this for over a year as have the nurses and never had a problem

yet. I just ouch it over about 2-3 minutes at a dose of 1 mg/Kg. By the

way they each only have single lumen lines too.

Sam also gets hyper on oral Benadryl - no one ever explained it but then

again I never asked. Same with versed only opposite. On oral versed Sam

gets sedated but on IV versed it does nothing for him. I don't get it at

all.

Re; Dr. Boles - what a tough situation and decision. I can't tell you what

to do but if your gut feeling is that he will not offer much more than what

Dr. Cohen and Dr. Kerr are offering then it may not be worth your time.

But again - that is only my opinion and you need to follow your own gut

feeling here.

Take care

Anne

----------

>

.. Do you know

if these tests are adequate to check for reflux? Matt has never had a pH

probe done. I do know that he sleeps better sitting up than lying down,

but not much.

Anyway, she just mentioned how hard it would be because Matty's

tpn runs for 16 hours, and his central line is only a single lumen, so I

would constantly have to interrupt his tpn.

I talked to L.A. today, and Dr. Boles only wants to see Matty for 2

hours, no inpatient and no testing. They said that he will recommend to

our local doctors any testing that he feels needs to be done. My

question to you is, will this be worth our trip out there?

[Guest guest]

Sharon,

does not have a g-tube, so we still have to give all of his

meds orally. I wish there was an easier way!!! <lol>

SDidinsky@... wrote:

> From: SDidinsky@...

>

> In a message dated 1/11/00 9:47:05 PM Eastern Standard Time,

> whyten@... writes:

>

> << know

> that our hospital carries either B-1 or B-2 (I can't remember which)

> in

> an IV form, but not the other one, and we were told that it wouldn't

> do

> any good unless he took both vitamins in the same amount. Any ideas on

>

> how to get him to take it?? I have been unsuccessful in finding a

> liquid

> version of B-50. >>

>

> Clayton is on the vitamin cocktail but he does not have Pearsons - he

> takes

> Co-q10, thiamine (a B vitamin), alpha lipoic acid, vitamin E and

> Vitamin c)

> We get it compounded into a liquid and it smells awful - I would not

> want to

> take it either. I guess that is the good thing about the tube for us.

> However, before we got the vitamins compounded I used to crush the

> tablets

> and mix with water to get it through the tube. Good luck.

>

> Love,

> Sharon

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

> [

[Guest guest]

Ruth,

No, i didn't know that!! My most sincere apologies to those that this

has affected. I have no idea how this happens or why. I am trying Anne's

suggestion to only send in plain text, please let me know if this helps.

Every message that I receive has an ad on the bottom of it, though not

as an attachment, so maybe it's just my server?

Anyway, to avoid any further bother, please know that I will make it

known in my post if I am including an attachment, otherwise, just assume

it's an unwanted and unintentional ad and ignore it!!! <lol>

Sorry again.

Hilandgang@... wrote:

> From: Hilandgang@...

>

> wendy

> just fyi: did you know that everytime you post, there is an

> attachment to

> your posts that is an advertisement? or maybe it's just happening to

> me?

> but it shows up as a file attachment and i keep opening it thinking

> that it's

> a picture or something....

>

> ruth

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

> [

[Guest guest]

Anne,

I think that unless gets sick again before then, that we are

going to go ahead and go out to L.A. Cross your fingers, I am talking to

a father/son team of doctors that are in the town we live in. They are

both general practitioners, but they are thinking very seriously about

taking over as Matty's case managers. I think that, if they do, that all

the information that I can provide to them will be important.

Matty's tpn has the lipids mixed in, but I don't see that this is that

much different than yours, if it mixes in the line anyway. I wonder why

our nurses always interrupt his tpn to give his benedryl???

Thanks again, I have contacted Patty and signed up for the tpn list.

" Anne K. Juhlmann " wrote:

>

>

> , an upper GI and gastric emptying can be very useful but do not

> rule

> out reflux. they are one snapshot within the day and many times not

> reflective if what is happening the majority of the say. They are

> often

> done simply because if lucky enough the reflux or poor emptying will

> show

> up on them and then they are diagnostic without having to put a child

> through more invasive and uncomfortable testing. But our surgeon is

> adamant that they are not to be used to say with absolution that there

> is

> no reflux.

>

> The gastric emptying study to be accurate should be done for at least

> one

> hour. Small bowel follow though gives an additional picture of how

> the

> stomach is emptying and how long it takes food to travel though the

> upper

> GI tract and small intestine.

>

> Sam and Zach only take Benadryl IV and we do not need to interrupt

> their

> TPN and lipids for it. if it is incompatible with either someone

> better

> tell the nurses and doctors at our hospital. Now we do hang TPN in a

> separate bag from the lipids so perhaps that could be why we don't

> stop it.

> I inject it into the lowest port possible on the TPN tubing. But

> still

> the tubing comes together at the Y site so it is mixing with the

> lipids. I

> have done this for over a year as have the nurses and never had a

> problem

> yet. I just ouch it over about 2-3 minutes at a dose of 1 mg/Kg. By

> the

> way they each only have single lumen lines too.

>

> Sam also gets hyper on oral Benadryl - no one ever explained it but

> then

> again I never asked. Same with versed only opposite. On oral versed

> Sam

> gets sedated but on IV versed it does nothing for him. I don't get it

> at

> all.

>

> Re; Dr. Boles - what a tough situation and decision. I can't tell you

> what

> to do but if your gut feeling is that he will not offer much more than

> what

> Dr. Cohen and Dr. Kerr are offering then it may not be worth your

> time.

> But again - that is only my opinion and you need to follow your own

> gut

> feeling here.

>

> Take care

>

> Anne

>

>

>

> ----------

> >

> . Do you know

> if these tests are adequate to check for reflux? Matt has never had a

> pH

> probe done. I do know that he sleeps better sitting up than lying

> down,

> but not much.

>

> Anyway, she just mentioned how hard it would be because Matty's

> tpn runs for 16 hours, and his central line is only a single lumen, so

> I

> would constantly have to interrupt his tpn.

>

> I talked to L.A. today, and Dr. Boles only wants to see Matty for 2

> hours, no inpatient and no testing. They said that he will recommend

> to

> our local doctors any testing that he feels needs to be done. My

> question to you is, will this be worth our trip out there?

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

> [

[Guest guest]

,

What ever you did, it worked, the attachment is gone! Good job. I am just

learning how to work this computer, I still haven't been able to figure out

how to get on the chat room, so I give up on that for now.

Patti

Re: sleeping patterns

>

>

> Ruth,

> No, i didn't know that!! My most sincere apologies to those that this

> has affected. I have no idea how this happens or why. I am trying Anne's

> suggestion to only send in plain text, please let me know if this helps.

> Every message that I receive has an ad on the bottom of it, though not

> as an attachment, so maybe it's just my server?

> Anyway, to avoid any further bother, please know that I will make it

> known in my post if I am including an attachment, otherwise, just assume

> it's an unwanted and unintentional ad and ignore it!!! <lol>

> Sorry again.

>

>

>

>

> Hilandgang@... wrote:

>

> > From: Hilandgang@...

> >

> > wendy

> > just fyi: did you know that everytime you post, there is an

> > attachment to

> > your posts that is an advertisement? or maybe it's just happening to

> > me?

> > but it shows up as a file attachment and i keep opening it thinking

> > that it's

> > a picture or something....

> >

> > ruth

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

> > [

[Guest guest]

,

My daughter started having sleep issues when she was about 1

1/2 years old. It would take us about 1-2 hours of walking

the floor and singing to her to get her to sleep and then

she would sleep for 45 min to 2 hours. Then we would start

all over again. All night. We were all getting about 4

hours of sleep total, in small increments. It was

horrible. We started sedating her before bed and it worked

really well. We have been using medication for almost 2

years now. We have also found that if we keep her up until

11 or midnight she sleeps even better and longer. Actually

she sleeps best if we keep her up until 1:30 and let her

sleep until 10 or 11 a.m.--that late of a schedule was too

difficult for us though. So we compromise! She now wakes

up once or twice a night and just needs 20 minutes or so of

walking and a low dose of meds to go back to sleep. Very

do-able from our perspective! I'm not sure what we'll do

when she's too big for standing up snuggles, but I figure

we'll work it out when the time comes. Letting her cry did

not work...the meds have saved our sanity and her health I

believe...I think getting enough sleep is important for her

stability.

We have also found at various times that eating or not

eating has helped her sleep. For a while we were running

her pump during the night and she would sleep better. Now

she sleeps better if we don't feed her all night, just give

her a little of her formula when she wakes up. Too much

food gives her too much energy to sleep--most mito kids do

better when fed during the night though, Laney is a bit odd!

Good luck!

, Mom to Adelaine and Baby ?

--

The s

, , Adelaine and Baby?

Ann Arbor, MI

http://www.mich/com/~jaj

[Guest guest]

wendy;

just wanted to say that orion had sleeping problems, too... would wake

up screaming... would get so upset he would make himself sick. the dr

prescribed chloral hydrate, and it worked for him... at least, it was better

than before.

julia

orion's mommy

In a message dated 1/13/00 9:58:07 PM Eastern Standard Time,

whyten@... writes:

<< I asked our doctor again today about meds to help Matty sleep. For

now, she still wants to hold off and see if we can't figure out why he

is having problems. We see Dr. Boles on the 24th of this month, and I

think that she is waiting to hear any suggestions that he might have.

So, a couple more weeks of this, and then maybe some relief...and some

sleep. <lol>

>>

[Guest guest]

wendy--

sleep?! what's that?! lol

ruth