Re: New UK Post - Gillian to Pat

[Guest guest]

Pat,

I was reading your post to Gillian and when you said

that was a catnapper and you had to be sure

not to wake him durin the first 1/2 of sleepin - you

just brought back a flood of memories. Not only was

a catnapper, and in fact for the longest time

and I mean a long time, would sleep with one

of her eyes slightly open.

B

5 1/2 and Kelli 2 3/4

--- pcpets wrote:

> Hi Gillian,

>

> My name is Pat, and I am g-ma to , RSS, 3.5

> yrs, weighing 23#

> (10.5kg), and measuring 33 " (84.5 cm) tall.

> was born at 39 weeks

> gestation, weighing 3# 5oz, measuring 15 " . He spent

> 3.5 weeks in NICU, and

> went home weighing 3# 11oz.

>

> There is an RSS specialist in the UK. His name is Dr

> Stanhope. I

> would take your daughter to see him if that is at

> all possible. I think he

> is based at Great Ormond Street Hospital in London,

> or something like

> that??? Katy or Jenn, can you help out with the

> name??

>

> Nighttime sweats. This could be a hypoglycemic drop

> from going long periods

> without in-taking food. I know a lot of parents

> here add cornstarch to

> their children's nighttime bottles to help sustain

> their BS overnight. We've

> never had to do this with . He has been

> g-tube fed since 8.5 months

> of age.

>

> Number of calories daily. When was small, Dr

> H recommended

> 160kcal/kg/day. Now that he is older, and has

> completed his caloric catch

> up, he's on approximately 80-85 kcal/kg/day.

>

> Developmental Delays. This is not unusual for RSS

> children as many suffer

> from low muscle tone, and need Physical Therapy in

> order to catch up.

> sat prone at 14.5 months, sat erect at 16

> months, butt-scooted for

> several months before he walked, he walked at 21

> months, and crawled

> sometime following his second b-day. At 3.5 yrs of

> age, he still cannot run,

> although he walks darn fast! LOL His speech is

> delayed, and rather hard to

> understand for those not in daily contact with him.

>

> does have a red/pink birthmark over his

> right eye that is barely

> noticeable anymore, but when he gets upset, it turns

> a deeper red in color.

>

> From what I've heard, the RSS look lessen with age.

> I don't know of anyone

> that had surgery to correct their child's head

> shape.

>

> Most of the RSS kids that I know, don't sleep as

> much as most other kids

> their age. When was small, you had to be

> very careful NOT to wake

> him in the first 1/2 hour he was asleep, or that

> would be it! He did much

> more catnapping then he did actually sleeping.

>

> I would worry about having almost no urine over

> night. A child's diaper

> should be plenty wet overnight whether they have RSS

> or not.

>

> Lots of our RSS kids suffer from constipation.

> Mirilax is frequently used

> for this problem. Lack of water while using high

> calorie formula will make

> this problem worse. The higher osmolity (thickness)

> of the high calorie

> formula makes the body draw more fluids into the

> stomach, leaving less for

> the digestive tract. I would try increasing her

> water intake. We give

> 10-20cc of water hourly when he's not

> feeling well, is constipated,

> or the weather is hot.

>

> I hope at least some of this helps. I would stress

> contacting Dr Stanhope,

> and I know there is a growth foundation in the UK

> too. You will probably

> find a lot of help there!

>

> Take care, and HUGS!!

> Pat (g-ma to , RSS, 3 yrs 5 months old, 23#,

> 33 " , G-tube, GHT)

>

>

>

>

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