Re: New UK Post - Gillian

[Guest guest]

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)