Re: Sleep study results are back----worrying mommy

[Guest guest]

Well now that we have the results back I can't stop checking on Eva

I think I am just slowly losing my mind...lol. I also am just

stressing out over this and I know I shouldnt. I think I need a nice

hot bath!!

Crystal

>

> Well the hospital finally called back and Eva does have slight

> pauses in her sleep and the lowest her oxygen level goes is 97%

and

> they think she might be refluxing in her sleep because they

noticed

> she chews in her sleep to get her airway back open. The ENT said

her

> tonsils are also big so she might have to have them removed sooner

> or later. Has anyone else had this happen?? She just seem to young

> to have her tonsils removed. I have been so upset since I got the

> call because its just anther thing to add to our plate of 100s of

> other things to do. I know you all know how I feel about that. I

was

> trying not to let the nurse know I was upset and crying. I just

feel

> like its all me taking care of Eva and her needs. I dont work

> outside the home so I can give her all she needs and I just feel

> like its not enough. I am at a lose sometimes and my head is just

> spinning. Our babies are just to small to be going threw so much

in

> their little sweet lives.

> So now I have to go see the GI about refluxing and the ENT about

her

> airway. Its like just when you think you have a break from doctors

> for awhile something else happens!! I dont have alot of friends

and

> family near by that came come and keep me company and just to have

> anther adult to talk to, so I am alone most of the time.

> Thanks for listening to me vent!!

>

> Crystal and Eva (8 month charger)

>

[Guest guest]

lol dont loose yousanity if you keep you mind xxxx

>

> Well now that we have the results back I can't stop checking on Eva

> I think I am just slowly losing my mind...lol. I also am just

> stressing out over this and I know I shouldnt. I think I need a nice

> hot bath!!

>

> Crystal

>

>

>

> >

> > Well the hospital finally called back and Eva does have slight

> > pauses in her sleep and the lowest her oxygen level goes is 97%

> and

> > they think she might be refluxing in her sleep because they

> noticed

> > she chews in her sleep to get her airway back open. The ENT said

> her

> > tonsils are also big so she might have to have them removed sooner

> > or later. Has anyone else had this happen?? She just seem to young

> > to have her tonsils removed. I have been so upset since I got the

> > call because its just anther thing to add to our plate of 100s of

> > other things to do. I know you all know how I feel about that. I

> was

> > trying not to let the nurse know I was upset and crying. I just

> feel

> > like its all me taking care of Eva and her needs. I dont work

> > outside the home so I can give her all she needs and I just feel

> > like its not enough. I am at a lose sometimes and my head is just

> > spinning. Our babies are just to small to be going threw so much

> in

> > their little sweet lives.

> > So now I have to go see the GI about refluxing and the ENT about

> her

> > airway. Its like just when you think you have a break from doctors

> > for awhile something else happens!! I dont have alot of friends

> and

> > family near by that came come and keep me company and just to have

> > anther adult to talk to, so I am alone most of the time.

> > Thanks for listening to me vent!!

> >

> > Crystal and Eva (8 month charger)

> >

>

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

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> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

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> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Crystal,

Reading your description of how overwhelmed you are just brought back

all the memories and feelings from those first few years. Not that it

eases up a whole lot - I think we just get used to it. Well, overall

the medical problems do get better, but then you have to deal with the

schools. Anyway, we all know what you are going through. Nice that we

have the list to share it.

Regarding sleep, this is a major problem for a lot of kids with CHARGE.

I have conducted a study. Because the person writing the lit review

backed out and those writing the discussion are taking a long time, the

manuscript has not yet been submitted. But here is the abstract:

" This study investigated the prevalence of sleep disturbances in 87

children with CHARGE. On the Sleep Disturbances Scale for Children,

57.5% received scores considered significant for sleep disturbances,

with disorders of initiating and maintaining sleep, sleep breathing

disorders, and sleep-wake transition disorders being the most common.

Scores on the scale were significantly correlated with scores on the

Developmental Behaviour Checklist, a measure of behavior problems in

children, and the Malaise, a measure of caretaker mental well-being.

Regression analysis found that both problem behavior and sleep

disturbances contribute to the prediction of scores on the Malaise. Of

the CHARGE characteristics, frequent middle ear infections were found to

be related to sleep disorders. The older the child learned to walk, the

higher their scores on behavior difficulties and sleep disturbances.

Those children who were deafblind also obtained higher scores on

behavior and disordered sleep than those who were not "

Regarding the toncils, had his removed early too. The ENT did not

want to take them out until he was older, but tape recorded his

breathing at night and played it for the ENT, and he scheduled the

surgery. Post surgery was tough because there is always bleeding and I

think you have kids drink or eat ice cream, and did not eat by

mouth at that time, but we got through it.

I think the way we survived back then was to deal with things one at a

time, as each thing came along, and tried not to think too far into the

future. Good luck with it all, and keep us up-to-date.

Tim Hartshorne, father of with CHARGE (16) and a bunch of others,

the oldest having just gotten married last week!

[Guest guest]

Tim-

Congratulations on the wedding of your son! just shaved for the

first time last night. I am proud of my little mancub and can't imagine how

I'll feel on his wedding day. Must've been wonderful for you and --

assuming you like the bride, of course...

Michele W

Aubrie's mom

[Guest guest]

Thanks Tim! I do try and take it one day at a time and one thing at

a time. Some months are easier then other, and some months just seem

so stuffed with appointments that I dont even have time to breath!!

I try not to complain to much since we were told she would not be

with us at all when I was pregnant so I feel blessed to have her

anyway I can.

Thanks for your help and support!!

Crystal and Eva (8 month Charger)

>

> Crystal,

>

>

>

> Reading your description of how overwhelmed you are just brought

back

> all the memories and feelings from those first few years. Not

that it

> eases up a whole lot - I think we just get used to it. Well,

overall

> the medical problems do get better, but then you have to deal with

the

> schools. Anyway, we all know what you are going through. Nice

that we

> have the list to share it.

>

>

>

> Regarding sleep, this is a major problem for a lot of kids with

CHARGE.

> I have conducted a study. Because the person writing the lit

review

> backed out and those writing the discussion are taking a long

time, the

> manuscript has not yet been submitted. But here is the abstract:

>

>

>

> " This study investigated the prevalence of sleep disturbances in 87

> children with CHARGE. On the Sleep Disturbances Scale for

Children,

> 57.5% received scores considered significant for sleep

disturbances,

> with disorders of initiating and maintaining sleep, sleep breathing

> disorders, and sleep-wake transition disorders being the most

common.

> Scores on the scale were significantly correlated with scores on

the

> Developmental Behaviour Checklist, a measure of behavior problems

in

> children, and the Malaise, a measure of caretaker mental well-

being.

> Regression analysis found that both problem behavior and sleep

> disturbances contribute to the prediction of scores on the

Malaise. Of

> the CHARGE characteristics, frequent middle ear infections were

found to

> be related to sleep disorders. The older the child learned to

walk, the

> higher their scores on behavior difficulties and sleep

disturbances.

> Those children who were deafblind also obtained higher scores on

> behavior and disordered sleep than those who were not "

>

>

>

> Regarding the toncils, had his removed early too. The ENT

did not

> want to take them out until he was older, but tape recorded

his

> breathing at night and played it for the ENT, and he scheduled the

> surgery. Post surgery was tough because there is always bleeding

and I

> think you have kids drink or eat ice cream, and did not eat

by

> mouth at that time, but we got through it.

>

>

>

> I think the way we survived back then was to deal with things one

at a

> time, as each thing came along, and tried not to think too far

into the

> future. Good luck with it all, and keep us up-to-date.

>

>

>

> Tim Hartshorne, father of with CHARGE (16) and a bunch of

others,

> the oldest having just gotten married last week!

>

>

>

>

>

>

[Guest guest]

Tim,

After you deal with the school there's adulthood coming up next. You think

school is hard, just wait. And that is for the rest of their lives!

Love your work.

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

[Guest guest]

tim ive been wondering where u are wow the aus confrence is this year r you

coming to that your loved all over the world lol

>

> Thanks Tim! I do try and take it one day at a time and one thing at

> a time. Some months are easier then other, and some months just seem

> so stuffed with appointments that I dont even have time to breath!!

> I try not to complain to much since we were told she would not be

> with us at all when I was pregnant so I feel blessed to have her

> anyway I can.

> Thanks for your help and support!!

>

> Crystal and Eva (8 month Charger)

>

>

>

> >

> > Crystal,

> >

> >

> >

> > Reading your description of how overwhelmed you are just brought

> back

> > all the memories and feelings from those first few years. Not

> that it

> > eases up a whole lot - I think we just get used to it. Well,

> overall

> > the medical problems do get better, but then you have to deal with

> the

> > schools. Anyway, we all know what you are going through. Nice

> that we

> > have the list to share it.

> >

> >

> >

> > Regarding sleep, this is a major problem for a lot of kids with

> CHARGE.

> > I have conducted a study. Because the person writing the lit

> review

> > backed out and those writing the discussion are taking a long

> time, the

> > manuscript has not yet been submitted. But here is the abstract:

> >

> >

> >

> > " This study investigated the prevalence of sleep disturbances in 87

> > children with CHARGE. On the Sleep Disturbances Scale for

> Children,

> > 57.5% received scores considered significant for sleep

> disturbances,

> > with disorders of initiating and maintaining sleep, sleep breathing

> > disorders, and sleep-wake transition disorders being the most

> common.

> > Scores on the scale were significantly correlated with scores on

> the

> > Developmental Behaviour Checklist, a measure of behavior problems

> in

> > children, and the Malaise, a measure of caretaker mental well-

> being.

> > Regression analysis found that both problem behavior and sleep

> > disturbances contribute to the prediction of scores on the

> Malaise. Of

> > the CHARGE characteristics, frequent middle ear infections were

> found to

> > be related to sleep disorders. The older the child learned to

> walk, the

> > higher their scores on behavior difficulties and sleep

> disturbances.

> > Those children who were deafblind also obtained higher scores on

> > behavior and disordered sleep than those who were not "

> >

> >

> >

> > Regarding the toncils, had his removed early too. The ENT

> did not

> > want to take them out until he was older, but tape recorded

> his

> > breathing at night and played it for the ENT, and he scheduled the

> > surgery. Post surgery was tough because there is always bleeding

> and I

> > think you have kids drink or eat ice cream, and did not eat

> by

> > mouth at that time, but we got through it.

> >

> >

> >

> > I think the way we survived back then was to deal with things one

> at a

> > time, as each thing came along, and tried not to think too far

> into the

> > future. Good luck with it all, and keep us up-to-date.

> >

> >

> >

> > Tim Hartshorne, father of with CHARGE (16) and a bunch of

> others,

> > the oldest having just gotten married last week!

> >

> >

> >

> >

> >

> >

[Guest guest]

crystal coem on msn im bored no one talking lol might go do something

constuurctive

>

> Tim,

>

> After you deal with the school there's adulthood coming up next. You

> think

> school is hard, just wait. And that is for the rest of their lives!

>

> Love your work.

>

> Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

>

>

>

[Guest guest]

And realize Crystal that with each diagnosis, no matter how big or small it

may be, that you will feel varying degrees of grief. With each diagnosis

there is a new loss to life as you know it, and to your hopes and dreams for

your daughter and your family. Sometimes just venting that frustration and

loss is enough to get through it. Other times it can be enough to trigger

another rough spell for you in coping with it all, especially if the new

diagnosis raises fears for her future or her well-being. Feel free to vent

anytime!

Kim L

> Thanks Tim! I do try and take it one day at a time and one thing at

> a time. Some months are easier then other, and some months just seem

> so stuffed with appointments that I dont even have time to breath!!

> I try not to complain to much since we were told she would not be

> with us at all when I was pregnant so I feel blessed to have her

> anyway I can.

> Thanks for your help and support!!

>

> Crystal and Eva (8 month Charger)

>

>

>

>>

>> Crystal,

>>

>>

>>

>> Reading your description of how overwhelmed you are just brought

> back

>> all the memories and feelings from those first few years. Not

> that it

>> eases up a whole lot - I think we just get used to it. Well,

> overall

>> the medical problems do get better, but then you have to deal with

> the

>> schools. Anyway, we all know what you are going through. Nice

> that we

>> have the list to share it.

>>

>>

>>

>> Regarding sleep, this is a major problem for a lot of kids with

> CHARGE.

>> I have conducted a study. Because the person writing the lit

> review

>> backed out and those writing the discussion are taking a long

> time, the

>> manuscript has not yet been submitted. But here is the abstract:

>>

>>

>>

>> " This study investigated the prevalence of sleep disturbances in 87

>> children with CHARGE. On the Sleep Disturbances Scale for

> Children,

>> 57.5% received scores considered significant for sleep

> disturbances,

>> with disorders of initiating and maintaining sleep, sleep breathing

>> disorders, and sleep-wake transition disorders being the most

> common.

>> Scores on the scale were significantly correlated with scores on

> the

>> Developmental Behaviour Checklist, a measure of behavior problems

> in

>> children, and the Malaise, a measure of caretaker mental well-

> being.

>> Regression analysis found that both problem behavior and sleep

>> disturbances contribute to the prediction of scores on the

> Malaise. Of

>> the CHARGE characteristics, frequent middle ear infections were

> found to

>> be related to sleep disorders. The older the child learned to

> walk, the

>> higher their scores on behavior difficulties and sleep

> disturbances.

>> Those children who were deafblind also obtained higher scores on

>> behavior and disordered sleep than those who were not "

>>

>>

>>

>> Regarding the toncils, had his removed early too. The ENT

> did not

>> want to take them out until he was older, but tape recorded

> his

>> breathing at night and played it for the ENT, and he scheduled the

>> surgery. Post surgery was tough because there is always bleeding

> and I

>> think you have kids drink or eat ice cream, and did not eat

> by

>> mouth at that time, but we got through it.

>>

>>

>>

>> I think the way we survived back then was to deal with things one

> at a

>> time, as each thing came along, and tried not to think too far

> into the

>> future. Good luck with it all, and keep us up-to-date.

>>

>>

>>

>> Tim Hartshorne, father of with CHARGE (16) and a bunch of

> others,

>> the oldest having just gotten married last week!

>>

>>

>>

>>

>>

>>

[Guest guest]

Kim,

Thanks, I love having my groups like this to vent in because I cant

vent to my husband because he is going threw the same thing and that

would just put more stress on him. SO I come to my groups and type

out my vents and feel better. Over the last few days I feel much

better and I am slowly not worring as much.

Thanks again,

Crystal and Eva (8 month charger)

> >>

> >> Crystal,

> >>

> >>

> >>

> >> Reading your description of how overwhelmed you are just brought

> > back

> >> all the memories and feelings from those first few years. Not

> > that it

> >> eases up a whole lot - I think we just get used to it. Well,

> > overall

> >> the medical problems do get better, but then you have to deal

with

> > the

> >> schools. Anyway, we all know what you are going through. Nice

> > that we

> >> have the list to share it.

> >>

> >>

> >>

> >> Regarding sleep, this is a major problem for a lot of kids with

> > CHARGE.

> >> I have conducted a study. Because the person writing the lit

> > review

> >> backed out and those writing the discussion are taking a long

> > time, the

> >> manuscript has not yet been submitted. But here is the

abstract:

> >>

> >>

> >>

> >> " This study investigated the prevalence of sleep disturbances

in 87

> >> children with CHARGE. On the Sleep Disturbances Scale for

> > Children,

> >> 57.5% received scores considered significant for sleep

> > disturbances,

> >> with disorders of initiating and maintaining sleep, sleep

breathing

> >> disorders, and sleep-wake transition disorders being the most

> > common.

> >> Scores on the scale were significantly correlated with scores on

> > the

> >> Developmental Behaviour Checklist, a measure of behavior

problems

> > in

> >> children, and the Malaise, a measure of caretaker mental well-

> > being.

> >> Regression analysis found that both problem behavior and sleep

> >> disturbances contribute to the prediction of scores on the

> > Malaise. Of

> >> the CHARGE characteristics, frequent middle ear infections were

> > found to

> >> be related to sleep disorders. The older the child learned to

> > walk, the

> >> higher their scores on behavior difficulties and sleep

> > disturbances.

> >> Those children who were deafblind also obtained higher scores on

> >> behavior and disordered sleep than those who were not "

> >>

> >>

> >>

> >> Regarding the toncils, had his removed early too. The ENT

> > did not

> >> want to take them out until he was older, but tape

recorded

> > his

> >> breathing at night and played it for the ENT, and he scheduled

the

> >> surgery. Post surgery was tough because there is always

bleeding

> > and I

> >> think you have kids drink or eat ice cream, and did not

eat

> > by

> >> mouth at that time, but we got through it.

> >>

> >>

> >>

> >> I think the way we survived back then was to deal with things

one

> > at a

> >> time, as each thing came along, and tried not to think too far

> > into the

> >> future. Good luck with it all, and keep us up-to-date.

> >>

> >>

> >>

> >> Tim Hartshorne, father of with CHARGE (16) and a bunch of

> > others,

> >> the oldest having just gotten married last week!

> >>

> >>

> >>

> >>

> >>

> >>

[Guest guest]

Crystal,

It is great that we have this list so we can talk to other parents who've been

through the same situations. It's hard to watch our children go through all of

these scary procedures and through all the surgeries and worry about new things

popping up. I'm glad you're feeling better about things and not worrying so

much. It's normal to worry though, we've all been through that before (and

continue to!)

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers