Re: Gillian UK

[Guest guest]

Hi Gillian,

Welcome to our group! I have an 11-year-old son with RSS whose story

is very similar to yours. I'll respond to your comments/questions in

CAPITALS. I also had very little amniotic fluid (oligohydramnios)

when pregnant with him and had an amniocentesis. They noticed his

IUGR at 18 weeks and he continued to get further behind in growth

until I had him via emergency c-section at 28 weeks (weighed only 15

oz. & was 11 " long). He stayed in the NICU for 31 weeks (longer than

i was pregnant) until he reached his discharge weight of 4.5 lbs.

I think most, if not all, RSS children are born with abnormally

shaped heads. I attribute this to the brain/head getting most of the

nutrition, therefore making their head appear large. I think this

may also be why RSS kids typically are on target cognitively and are

not mentally retarded. Now that I think back, when my amnio came

back normal, the doctor had a terrible bedside manner & told me that

because of his head size, the baby would most certainly be retarded.

Glad I didn't listen to him! Getting back to the head thing, the

" RSS look " tends to lessen with age. still has a thin,

narrow head, but I have seen typical kids with heads shaped like him

too!

You mentioned the amount of food your daughter recently consumed, and

I was very surprised. For a RSS child with a cleft palate, that is

amazing! Whatever you are doing, keep up the good work. My son has

had a feeding tube since 6 months old, and unfortunately, I don't see

him getting rid of it anytime soon. I have 2 other non-RSS kids, and

they are also poor eaters. In fact, my 15-month-old daughter doesn't

even eat as much as you posted about Madz. The problems you mention

with stage 2 or 3 foods are typically due to the texture of the

foods. Many RSS kids also have sensory integration issues, and do

not like lumpy, gooey, chunky, etc. foods.

Some similarities between my son & Madz are as follows: was

also initially diagnosed with fetal alcohol syndrome in the NICU & i

was furious. The doctor who diagnosed this never even spoke to me.

Had he spoken to me, he would know that I don't drink. Once I told

them that, they dismissed the diagnosis. After the fact, I thought,

what if I had had even 1 drink (glass of wine or similar) & they

diagnosed him with that. I would have thought that 1 drink caused

that & would have had terrible feelings of guilt for an inaccurate

diagnosis. also was born with a hemangioma on his neck, but

we didn't see it until he was 2 months old when he came off the

ventilator. It was hiding under the tape they used to hold the

ventilator bar in place. When I first saw this thing & how big it

was, I was not happy to say the least. They told me that there was

nothing they would do to remove it, and that it would disappear on

its own when he was about 5 years old. Guess what? They were right

about 5 years! When he was 5, you could barely see it anymore.

The UPD7 test is only positive in about 10-11% of RSS children. For

the rest of the children diagnosed with RSS, it is spontaneous &

usually never occurs again in the family. So for the ones you have

heard about that have more than 1 child with RSS, I would assume

they are the ones in 10% of the RSS population. Somebody else

correct me if I am wrong!

I think it is safe to say that a good portion of RSS kids have had

delays in gross motor skills. Many of these kids have low muscle

tone, which in addition to their small size, makes it harder to

attain milestones on time. My son sat up at 18 months, walked at 29

months, and never crawled, but he scooted on his back to get around

before walking. His speech was also delayed. Cognitively he was

fine, but now he struggles a bit in school & is in the process of

being tested for a learning disability.

I you have more questions, don't hesitate to ask. This group is a

great support & sometimes is even more helpful than doctors!

Kim C.