Sleep Study

[Guest guest]

wears them too, and I was told the same thing. Keeps knees,

and also hips, in better shape so that they will have less problems as

adults.

Loree5@... wrote:

>Hi Barb,

>

> My Micah wears orthotics because his feet turn in. I was always

>worried about his feet but the orthoped told me it is his knees they worry

about

>and that a lot of kids with DS end up having knee surgery later in life. The

>orthotics on his feet are suppose to keep his knees alligned. Go figure!

>

>Loree

>

>

>

[Guest guest]

When you guys say orthotics, what do you mean? We had one orthopedist gave

us leather arch supports. He wasn't doing much else and told us it was a DS

thing. We went to another at a University Hospital who told us the arch

supports wouldn't help. Told us it was a DS thing and that only thing they

could do was break legs and reset them. I don't think so. Went to another

orthopedist who basically gave the same song and then as if to make me happy

wrote a script for some type of orthotics and said if they helped ....

great. He otherwise didnt' need to see us anymore. 's legs rotate

out, especially his right leg and his feet pronate. He has callouses on his

right foot. He cannot tolerate walking for very long distances and is

putting on weight. They want to blame the leg pain on the weight but the

problem was there before the weight. This has been going on for many years.

Don't feel like it's just a DS thing.

Barb

Re: sleep study

> wears them too, and I was told the same thing. Keeps knees,

> and also hips, in better shape so that they will have less problems as

> adults.

>

>

>

> Loree5@... wrote:

>

>>Hi Barb,

>>

>> My Micah wears orthotics because his feet turn in. I was always

>>worried about his feet but the orthoped told me it is his knees they

>>worry about

>>and that a lot of kids with DS end up having knee surgery later in life.

>>The

>>orthotics on his feet are suppose to keep his knees alligned. Go figure!

>>

>>Loree

>>

>>

>>

[Guest guest]

It's probably something early intervention and orthopedists should have

addressed in early years when I was asking for answers Loree and now it's

probably gotten to the point there's not alot can be done. I don't know...but

am looking to see if we can get referred to Cincinnati DS Clinic to get some

answers on this and other concerns I have. Thank you for help.

Barb mom to 12 (ds) and Tyler 10 (nds)

Re: sleep study

In a message dated 11/30/2005 5:08:51 P.M. Eastern Standard Time,

cbbtdillon@... writes:

When you guys say orthotics, what do you mean

Sorry I hit the send button on the last e-mail. Micah's orthotics are two

plastic supports for his feet and ankles and fit into his shoe. His feet turn

in though not out like your son's. Come on guys, any one else have this problem

with their child to help Barb out!

Loree

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[Guest guest]

's legs and feet were fine as a child.

Nothing anyone would notice. But by the time he was 15 he was walking with

increasing pain and arthrograms, which they used then, showed that his hips

were dislocated in a very unusual way, they went out both ways. He had surgery

on both hips but still can only walk short distances with walker or crutches

but is mainly in a wheelchair. His particular condition was so rare that the

best orthopedist in the area conferred with others in Europe and this country

before doing surgery. He said he probably had pain for a long time but it

didn't show.untill his mid teens. Looking back we could see that there were

things he didn't like to do. No one ever told us this was a DS thing, altho his

hip joints were somewhat shallow. The thing is I have asked on various DS

lists and have found no one with the same problem. So if it's common, where

are

they?

He has always had good muscle tone, always been very strong, not " double

jointed " as some kids seem to be. The surgery did relieve his pain so it was

worth it as it was becoming intense and we had all hoped he would be able to

walk but his hips are not straight and he cannot stay on his feet for long.

His feet are straight, his knees are straight and always have been. It's an

inigma, isn't it.

Jessie

[Guest guest]

Karrie goes through Shriner's Hospital. She was supposed to wear orthotics

(and did for a few years) in her shoes. But then she learned to take them

out of her shoes. The doctor told me not to worry about it.

At the last visit (last month), I was told her heel cords are tightening,

and so are her hip flexors. Now we have to do stretches every night (which

she isn't tolerating, either) or she will have to have release surgery in 9

months. Can't win!

Sue mom to Kate 16 and Karrie 9 w/ds and other issues (including orthopedic

problems)

-- Re: sleep study

It's probably something early intervention and orthopedists should have

addressed in early years when I was asking for answers Loree and now it's

probably gotten to the point there's not alot can be done. I don't know..

but am looking to see if we can get referred to Cincinnati DS Clinic to get

some answers on this and other concerns I have. Thank you for help.

Barb mom to 12 (ds) and Tyler 10 (nds)

Re: sleep study

In a message dated 11/30/2005 5:08:51 P.M. Eastern Standard Time,

cbbtdillon@... writes:

When you guys say orthotics, what do you mean

Sorry I hit the send button on the last e-mail. Micah's orthotics are two

plastic supports for his feet and ankles and fit into his shoe. His feet

turn in though not out like your son's. Come on guys, any one else have

this problem with their child to help Barb out!

Loree

-----------------------------------------------------------------------------

No virus found in this incoming message.

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11/29/2005

[Guest guest]

Barb,

We haven't had a sleep study but we do have orthopedic issues.

Bryson over pronates (walks on the inside of his feet). It can

cause his feet to slid out from under him if the floor is wet - like

in the shower. It also made him reluctant to walk after a distance

and it made him turn his toes in to improve his balance.

He had splints early on through our birth to three program. They

were heavy plastic and came over his ankles. After that we had

others that were similar but lighter weight plastic. One summer I

let him wear sandals without the splints. As soon as he realized

they were optional, they were out the door.

For about two years he went without anything to support his ankles.

The docs we spoke with (including an ortho) said it was just

something he'd have to live with and there really wasn't

any 'fixing' it.

Our private physical therapist was more interested in finding a

solution. He suggested a particular kind of insert and...we love

it. It's a hard foam that replaces the insole of his shoe. Bryson

even moves it to which ever shoes he wants to wear for the day. I

don't know exactly what they're called but can find out more

specifics if it's something you're interested in investigating.

I'm new to the board so I don't know your situation very well - have

you talked with a physical therapist about this? Unless you need a

surgical solution, our experience makes me believe you might have

better luck going that route.

Mom to Bryson (8 w/DS) and Weston (6)

[Guest guest]

's orthotics are pretty hard plastic, with a thin layer of foam

over it. They are " off the shelf " (as opposed to the custom cast ones

she had as a toddler). The PT measures her foot, orders the proper size

for her, and then I search around to find shoes that will fit them,

LOL. I think the brand name is paddibob. She doesn't mind wearing

them, and I keep them primarily in her sneakers..... if she wears

Janes, I don't bother to move them because they raise her foot a

bit, and it makes low shoes like that slip off.

, mom to (10), (7 DS), and (6)

Loree5@... wrote:

> In a message dated 11/30/2005 5:08:51 P.M. Eastern Standard Time,

> cbbtdillon@... writes:

>

> When you guys say orthotics, what do you mean

>

> Sorry I hit the send button on the last e-mail. Micah's orthotics are

> two plastic supports for his feet and ankles and fit into his shoe.

> His feet turn in though not out like your son's. Come on guys, any

> one else have this problem with their child to help Barb out!

>

> Loree

[Guest guest]

We took to a zoo and in his excitement he made it well past what he

normally can walk. Then he hurt so bad he couldn't walk back out. It was

getting closing time and so his dad had to carry him. We've had x-rays that

show legs rotate outward but not out-of-sockets. Leather arch supports

seemed to help with his feet but he kept losing them on the playground at

school. PT wanted to put " cables " on and orthopedist would not

recommend it for a child 's age. We use store wheelchairs when we

go shopping. Tried to get a wheelchair but got denied. We finally

ended up buying a cheap one at a Medical Supply. What I encounnter is one

side that says he needs to lose weight and want to make him walk it off that

will fix everything and one side that says it's a ds thing and nothing can

be done.

Barb

Re: sleep study

> 's legs and feet were fine as a

> child.

> Nothing anyone would notice. But by the time he was 15 he was walking

> with

> increasing pain and arthrograms, which they used then, showed that his

> hips

> were dislocated in a very unusual way, they went out both ways. He had

> surgery

> on both hips but still can only walk short distances with walker or

> crutches

> but is mainly in a wheelchair. His particular condition was so rare that

> the

> best orthopedist in the area conferred with others in Europe and this

> country

> before doing surgery. He said he probably had pain for a long time but

> it

> didn't show.untill his mid teens. Looking back we could see that there

> were

> things he didn't like to do. No one ever told us this was a DS thing,

> altho his

> hip joints were somewhat shallow. The thing is I have asked on various

> DS

> lists and have found no one with the same problem. So if it's common,

> where are

> they?

> He has always had good muscle tone, always been very strong, not

> " double

> jointed " as some kids seem to be. The surgery did relieve his pain so it

> was

> worth it as it was becoming intense and we had all hoped he would be able

> to

> walk but his hips are not straight and he cannot stay on his feet for

> long.

> His feet are straight, his knees are straight and always have been. It's

> an

> inigma, isn't it.

> Jessie

>

>

>

>

>

[Guest guest]

Hi Ursula,

Are you asking in terms of how it relates to PIDD, or just what to expect in

general? I have been through a sleep study and had the CPAP.

(mom to , 16)

Ursula Holleman <uahollem1@...> wrote: I

read in the archives where some children have had a sleep study before. Can

anyone offer experiences with the sleep lab or outcomes from the study?

Did anyone end up on a CPAP or other pressure device? Did anyone's sleep study

bring on new medication or medical treatment?

Macey's immunologist ordered one today and we're waiting to hear from the sleep

lab to set up the date.

Ursula - mom to (14) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://caringbridge.org/ga/macey/

[Guest guest]

I'm looking for information about a pediatric sleep study. How the parents are

involved, where they spent the night. How soon results were found and how the

results changed their childs medical management.

Ursula

[Guest guest]

I was told that I could stay with Lucas for his study. We would go to

the same center as I did University of WA in Seattle. It is like a

hotel room. They do hook up an incredible # of leads (EEG) Heart

monitor leads 8+ they also use a pulse oximeter. There are also

indicator leads for what position you are in and they observe the

movements as well as initially then you are monitored from another

room with a camera. IF they see things that are concerning then they

add CPAP that night to see how it improves the situation. They only

need about 5-6 hours of sleep and if you cannot get to sleep they use a

sleeping pill. (Ambien CR I think). I fall asleep immediatley which is

a sign of sleep apnea.It should take 15-20 min. Results usually take

several weeks. 2-3 depending on how busy the clinic is and how severe

your case is. It is a very complex study and requires tremendous

interpretation. I have copies of mine and it is amazing what they

exstrapulate. We chose not to follow through with Lucas because there

is no way that we would get him to wear it. We just do everything we

can to keep his airway healthy because we cannot change its shape. So

if she will not wear it then it may not be worth testing. IT is quite a

committment for life. BARBIE

>

> I'm looking for information about a pediatric sleep study. How the

parents are involved, where they spent the night. How soon results

were found and how the results changed their childs medical management.

>

> Ursula

>

>

>

[Guest guest]

Sasha had one when she was a baby (like less than 2 months old).

It was ordered as a result of her pH probe/pneumogram being abnormal

when she was in the hospital. B/c we were in the hospital, we got in

right away. Sasha did well during the test - and the test results

were complicated for her - it was abnormal - but non-specific. She

had a high amount of short apneas - but her desaturations never went

below 90 - except one time - but b/c she was in no apparent distress,

they decided not to do anything about it. She had some abnormalities

in her bi-parietal lobe - which led to an EEG, but that also turned

up normal.

Overall, the test really didn't tell us anything - but I know my BIL

had one and he ended up on C-PAP at night for it and he needs the

highest flow that they can use b/c his apnea is so bad - he also has

seizures - so I don't know if that's related or not....but for him,

the test was not only a good idea, but possibly a life saver for him.

The test just stunk b/c we were up all night in order to do it so she

was tired - and b/c she was a newborn - it was SO tough to keep her

awake.....but I am glad we did it to put and concerns to rest. She

is just fine now with the apneas - still has them but they aren't as

frequent and her breathing has not been compromised by them as far as

we can tell.

I hope this helps a little.....sorry that I couldn't offer more

advice to you.....

Take Care

Stef

[Guest guest]

thanks for the responses. when macey was about 18 months old she had her

adenoids removed and by CT we know they haven't grown back. she has not

tonsils, just didn't seem to be born with them. we were told she would wear the

ekg leads, the eeg head probes, a probe under her nose but above her lip, probes

on her legs (for restless leg possibility) and a pulse ox.

they are thinking she has a problem with her REM sleep or desats in her sleep.

Narcolepsy was also mentioned. Getting her to wear a CPAP wouldn't be a problem

because she is all gung ho to find out what is wrong. i might show her some

pictures online before we go just so she isn't too caught off guard by the look

of it.

supposedly there is also a problem where your body makes something that tells

the body to sleep and since it is made in the hypothalamus and she has other

diagnosed problems there it might be chemically related. so who knows.

Ursula - mom to (14) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://caringbridge.org/ga/macey/

[Guest guest]

Ursula,

Can I ask what sleep problems she is having? I am only asking because for the

past 9 months Noelle has not slept well. She does not fall asleep easily

(unless in the car) and awakes often. I've mentioned this to her docs but they

are not concerned. I'm wondering if we need to dig deeper into this for her.

You can email me off list if you want.

Thanks,

Sara

Re: sleep study

thanks for the responses. when macey was about 18 months old she had her

adenoids removed and by CT we know they haven't grown back. she has not tonsils,

just didn't seem to be born with them. we were told she would wear the ekg

leads, the eeg head probes, a probe under her nose but above her lip, probes on

her legs (for restless leg possibility) and a pulse ox.

they are thinking she has a problem with her REM sleep or desats in her sleep.

Narcolepsy was also mentioned. Getting her to wear a CPAP wouldn't be a problem

because she is all gung ho to find out what is wrong. i might show her some

pictures online before we go just so she isn't too caught off guard by the look

of it.

supposedly there is also a problem where your body makes something that tells

the body to sleep and since it is made in the hypothalamus and she has other

diagnosed problems there it might be chemically related. so who knows.

Ursula - mom to (14) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://caringbridge.org/ga/macey/

[Guest guest]

Sara - She's having problems with debilitating fatigue. Worse than any she has

ever had. In Kindergarten she went to a reduced school week because of fatigue

and then went to every 3 week infusions. For the past 2 1/2 yrs she has been on

weekly subq and her levels are good so that isn't the problem. Her blood counts

are ok and there are no new autoimmune problems.

So the next thing to test is a sleep study. we don't even know if she has a

problem during her sleep. She has no problem sleeping at the house. She goes

to bed around 8:30 pm and wakes up at 6:30 am. 10 hrs sleep. she has needed to

nap after school and sleep in on the weekends for about 3 or 4 months now.

So they are looking at her sleep cycles, her oxygen levels and her overall

evening routine when we do the study. She falls asleep almost too easily which

is why they mentioned narcolepsy.

Ursula - mom to (14) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://caringbridge.org/ga/macey/

[Guest guest]

I'm looking for information about a pediatric sleep study. How the parents

are involved, where they spent the night. How soon results were found and how

the results changed their childs medical management.

If it is a Pediatric hospital they have you stay the night with your child,

in the same room, one parent only. The results were given to us at our next

doctor appt. I guess it depends on how busy the sleep study place is and how

fast the doctor needs them back.

Brittany was diagnosed with restless leg syndrome. Which was a good

explanation as to why she isn't sleeping well! The neuro wants to put her on

meds for

it but she is holding off due to Brittany's urticaria and angiodema

Janet, mom to Brittany, age 16, CVID, auto-immune problems

[Guest guest]

Hi Ursula,

There is a pic of Tray all hooked up for his sleep study on our site right

now. He did great with it all.

www.caringbridge.com/ny/my2angels

[Guest guest]

She also now has restless legs

syndrome.

Does she take anything for it?

Janet, mom to Brittany, age 16, CVID & auto-immune problems

[Guest guest]

Kim - Do her meds keep her energized? Is she or was she having problems with

fatigue? we think that Macey's fatigue might be contributing to some break

through infections and that if we can alter the reason for her fatigue her body

might use it's energy more productively.

Ursula - mom to (14) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://caringbridge.org/ga/macey/

[Guest guest]

Hi Ursula,

Sorry I am rally behind in my emails and I just read your letter. My little

one had her first sleep study at 7 months and we found that she had pretty

severe sleep apnea. It was decided that her adnoids needed to come out. We

then had a second sleep study a few months later and found it " Fixed " it. When

her apnea returned her tonsils were taken out. We had the study at Children's

and there are a lot of wires. It was pretty scary looking the first time and I

thought she would never sleep. She managed to sleep though. It was harder for

me to sleep. Because she was so little, I slept in the bed with her because she

could not be in a crib and nurse to sleep. I did not drive there or back

because you are pretty sleep deprived when you are done. I hope that helps.

Mother to 4 year old with allergies, astham?, history of seizures, gerd, and

intestinal motility issues

mother to 2 1/2 year old with PID, GERD, allergies, asthma?, etc.

Ursula Holleman <uahollem1@...> wrote: I

read in the archives where some children have had a sleep study before. Can

anyone offer experiences with the sleep lab or outcomes from the study?

Did anyone end up on a CPAP or other pressure device? Did anyone's sleep study

bring on new medication or medical treatment?

Macey's immunologist ordered one today and we're waiting to hear from the sleep

lab to set up the date.

Ursula - mom to (14) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://caringbridge.org/ga/macey/

[Guest guest]

Flynn just had a sleep study done before Christmas. We went to the

outpatient center at the Children's Hospital around 7:00PM. He was

the only patient there at that time of night. We had our own

room,complete with (2) beds, tv, radio/CD player and bathroom.

The nurses hooked up the electrodes on his head, chest, arms & legs

and taped a tube into his nose to measure his nasal breathing. The

hardest part of the whole thing was the nasal tube. He kept pulling

it out in his sleep and the nurses and I had to keep reinserting it,

which really ticked him off. Other than that,the test was a breeze.

He fell right asleep....I on the other hand, had more difficulty. I

was worried about him not sleeping well in a strange bed with all

that equipment. What a waste of time worrying! He did awesome!

The tests didn't explain his light sleep patterns (He has difficulty

staying asleep at night.), but the test was definitely easier than I

anticipated.

Good luck,Ursula. I am sure Macy will do great and I hope you find

some answers to her fatigue.

-Rogena …Proud mom to 4 boys, including:

Cole (4yo)-IgG Subclass def, GERD, EED, Asthma, Dairy Allergic

Flynn (2yo) - IgG & IgM def, GERD, GI Motility Issues, Asthma

[Guest guest]

In a message dated 3/18/2007 8:12:28 P.M. Pacific Daylight Time,

atate526@... writes:

just like that! now im wondering if its worth it....

what do you think?

Yes.......so many of our kids have sleep apnea. In fact many adults do too.

My oldest has it SEVERELY!!

This really affects her quality of life. So much that we just had surgery to

hopefully open her airway enough that she will not need a CPAP machine at

night anymore.

We are supposed to have her 4th sleep study next month to see if it worked!!

Laurie

Mom to 4 two with Trisomy's

************************************** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

In a message dated 3/18/2007 11:12:51 PM Eastern Daylight Time,

atate526@... writes:

what do you think?

~Angie

do it! Fifty percent of all kids with DS have sleep apnea. Better to find

out she doesn't. Jus my opinion.

Loree

************************************** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Our experience getting Myah hooked up (even after we let her fall asleep) was

not good. We ended up getting sent home at midnight because Myah was not going

to let them hook her up. Hopefully yours will be better, but just keep this in

mind so that you are prepared. We took everything in the world to distract her,

but it didn't work. Her favorite teacher even came with a huge bag of things

that didn't phase her. I do think it's beneficial, but the neurologist just

decided to treat her ADHD and test for sleep when Myah is a little older and may

be able to tolerate the test a little better.

, mom to Myah 6 DS, Shianne 2, and baby girl due 7/07

sleep study

Well during a conversation with a dr when i took syd in for bronchitis.....i

said ive never thought she got that deep sleep ......she agreed to set up a

sleep study....just like that! now im wondering if its worth it....

what do you think?

~Angie

Research Associate of Child Development and Human Relations to Sydnie

(5/26/00) and Saylor (4/30/04)

www.babiesonline.com/babies/s/sydniebrooke

*updated 10/01/06*

www.babiesonline.com/babies/b/babytate

*updated 10/01/06*

" May God Bless You As He Has Us "

An extra little chromosome,

that's all it is, you see.

Where all of you were born with two,

I was blessed with three

" My Children are God's gift to me.

How I raise them, is my gift to God. "

[Guest guest]

HI everyone

has had two and was 12 both times. He does exceptionally well with

medical procedures. Like last Friday we were at Childrens for blood tests for

his arthritis medicine and he walked into the lab, sat down on the chair, pulled

up his sleeve and held out his arm, without even being asked. His older

brother, Josh, does not do that well with medical stuff and I can't imagine

Kristi allowing anyone to put wires in her hair.

But the bottom line is it is a painless, harmless test, and sleep apnea needs

to be tested for if suspected because it can result in a lot of problems,

ranging from stopped breathing during sleep,. falling asleep during the day, and

even behavior and attitude problems at school and home, if left untreated.

The CPAP machine worked for us and I personally recommend it over surgery

although the doctors will tell you surgery is best (tonsil/adenoids removal)

We will be thinking about you and praying all goes well.

Dad to , Kristi, (all three Down syndrome) and (Cri du

chat)

Husband to C. in Mo.

Uncle Daddy to and in Calif. (both Down syndrome)

Brother in Law to in Calif.

Spilios <kspilious@...> wrote:

Our experience getting Myah hooked up (even after we let her fall

asleep) was not good. We ended up getting sent home at midnight because Myah was

not going to let them hook her up. Hopefully yours will be better, but just keep

this in mind so that you are prepared. We took everything in the world to

distract her, but it didn't work. Her favorite teacher even came with a huge bag

of things that didn't phase her. I do think it's beneficial, but the neurologist

just decided to treat her ADHD and test for sleep when Myah is a little older

and may be able to tolerate the test a little better.

, mom to Myah 6 DS, Shianne 2, and baby girl due 7/07

sleep study

Well during a conversation with a dr when i took syd in for bronchitis.....i

said ive never thought she got that deep sleep ......she agreed to set up a

sleep study....just like that! now im wondering if its worth it....

what do you think?

~Angie

Research Associate of Child Development and Human Relations to Sydnie (5/26/00)

and Saylor (4/30/04)

www.babiesonline.com/babies/s/sydniebrooke

*updated 10/01/06*

www.babiesonline.com/babies/b/babytate

*updated 10/01/06*

" May God Bless You As He Has Us "

An extra little chromosome,

that's all it is, you see.

Where all of you were born with two,

I was blessed with three

" My Children are God's gift to me.

How I raise them, is my gift to God. "