Re: Another MD, another dx

[Guest guest]

<<what was the signs of sleep apnea.?

My neice is saying she is tired at school.............don't know if

it's tired of work, or really tired, b/c on the weekends she never says

that....

thanks

stefanie >>

Tired in school could be a symptom of obstructive sleep apnea. Tired of

school wouldn't be. Dr. Len has a good essay at

http://www.ds-health.com/apnea.htm

<<Symptoms of Obstructive Sleep Apnea (OSA) are: snoring,

restless/disturbed sleep, frequent partial or total wakenings and

daytime mouth breathing. Some children with OSA have odd sleep

positions, often with their neck bent backwards, or even in a sitting

position. Some children with OSA sweat profusely during sleep. In

adults, there is an association of obesity, but that's not a common

association in children. Some children will have daytime grumpiness or

sleepiness, but it's not common. Some children may have noisy

swallowing as well.

Children with Down syndrome (DS) are certainly at risk for OSA. In

1991, one study showed 45% had OSA. This can be caused by several

different factors present in DS: the flattened midface, narrowed

nasopharyngeal area, low tone of the muscles of the upper airway and

enlarged adenoids and/or tonsils.>>

Charlie's pulmonologist said about 25% OSA with Ds. Also said

higher with kids who have hypothyroidism, which Charlie does. So

I'm guessing his risk is greater than 25% but still hope he

doesn't have it. -- Bob

[Guest guest]

<<Are scheduled to get joint (terrible pun not intended) workup by

orthopedist and physiatrist next Tues. ... Can hardly wait to see what tag

team of orthopedist and physiatrist will come up with. But that's next

week.>>

Seems a bit tacky to reply to my own post, but next week is now this

week. Charlie had a fairly pleasant visit with several people at CHOP's CP

clinic yesterday, including a physiatrist and an orthopedic surgeon.

Orthopedist said we were doing okay by him, looked pretty good. Though

Charlie is not walking independently yet, age 5, and clearly has delays and

hypotonia, orthopedist thought degree of hypotonia was about middle of the

road for a kid with Ds. They took another hip x-ray yesterday, and

orthopedist thought that looked pretty good too.

Physiatrist made an interesting, somewhat parallel, point. Charlie

has flat feet but no flatter than most kids with Ds. Wish I had thought to

ask how flat can feet get, can flat feet be flatter than flat?

Charlie did not wow them when they had him in his walker in the

carpeted hall walking on bare feet. Lynn thinks maybe Charlie wanted to sit

down and have a good foot rubbing on the carpet. But I think their

assessment improved after we put his shoes back on and he walked down the

hall, dressed only in a diaper, and into the orthopedist's office.

No big concerns with his hips and bones and leg development,

certainly didn't see anything surgical, no need for bracing. Keep up the PT

and physiatrist measured his feet for us to order him a pair of Pattibobs,

orthotic shoe inserts from Cascade.

But I hadn't realized we were in for such a full blown clinic visit.

Before getting to the session with the orthopedist and physiatrist, we met

with clinic coordinator, a social worker (who happened to have a social

worker in training with her), two OT's, I think, a PT, and a speech and

language pathologist. This last therapist had really gotten into Charlie's

face and got him to engage and do some imitating activities that surprised

me. He was getting pretty wound up, and enjoying himself. I asked him if he

were having fun now, and I asked this speech and language pathologist what

plans she had for this weekend, if she wouldn't like to come over and spend

the weekend working with Charlie. No, but she'd be glad to have Charlie back

to CHOP for a complete speech and language assessment, which she

recommended.

We were also led to line up a more complete PT evaluation and a

seating consult. We're already waiting for a call back for a sleep study.

And one of these days we need to schedule a follow up visit with the Trisomy

21 program.

So, a rather long and somewhat tiring day, topped off by being a bit

late for 's NICU reunion, late dinner, and drive back to central NJ,

but a good day and all worthwhile.

-- Cheers,

Bob, Charlie & 's dad

[Guest guest]

Wow, an extensive day, but it sounds very thorough, and like you will gain a lot

of information.

Sharon

Re: Another MD, another dx

<<Are scheduled to get joint (terrible pun not intended) workup by

orthopedist and physiatrist next Tues. ... Can hardly wait to see what tag

team of orthopedist and physiatrist will come up with. But that's next

week.>>

Seems a bit tacky to reply to my own post, but next week is now this

week. Charlie had a fairly pleasant visit with several people at CHOP's CP

clinic yesterday, including a physiatrist and an orthopedic surgeon.

Orthopedist said we were doing okay by him, looked pretty good. Though

Charlie is not walking independently yet, age 5, and clearly has delays and

hypotonia, orthopedist thought degree of hypotonia was about middle of the

road for a kid with Ds. They took another hip x-ray yesterday, and

orthopedist thought that looked pretty good too.

Physiatrist made an interesting, somewhat parallel, point. Charlie

has flat feet but no flatter than most kids with Ds. Wish I had thought to

ask how flat can feet get, can flat feet be flatter than flat?

Charlie did not wow them when they had him in his walker in the

carpeted hall walking on bare feet. Lynn thinks maybe Charlie wanted to sit

down and have a good foot rubbing on the carpet. But I think their

assessment improved after we put his shoes back on and he walked down the

hall, dressed only in a diaper, and into the orthopedist's office.

No big concerns with his hips and bones and leg development,

certainly didn't see anything surgical, no need for bracing. Keep up the PT

and physiatrist measured his feet for us to order him a pair of Pattibobs,

orthotic shoe inserts from Cascade.

But I hadn't realized we were in for such a full blown clinic visit.

Before getting to the session with the orthopedist and physiatrist, we met

with clinic coordinator, a social worker (who happened to have a social

worker in training with her), two OT's, I think, a PT, and a speech and

language pathologist. This last therapist had really gotten into Charlie's

face and got him to engage and do some imitating activities that surprised

me. He was getting pretty wound up, and enjoying himself. I asked him if he

were having fun now, and I asked this speech and language pathologist what

plans she had for this weekend, if she wouldn't like to come over and spend

the weekend working with Charlie. No, but she'd be glad to have Charlie back

to CHOP for a complete speech and language assessment, which she

recommended.

We were also led to line up a more complete PT evaluation and a

seating consult. We're already waiting for a call back for a sleep study.

And one of these days we need to schedule a follow up visit with the Trisomy

21 program.

So, a rather long and somewhat tiring day, topped off by being a bit

late for 's NICU reunion, late dinner, and drive back to central NJ,

but a good day and all worthwhile.

-- Cheers,

Bob, Charlie & 's dad

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