Re: Re: New to This-allergies?

[Guest guest]

this could be way off the mark but anyway here goes. have you considered

allergies as a reason for poor/non existant weight gain?

I think another person on this list, leah's mum, also has experience of this and

her child is closer in age to yours.

had had severe pain issues all of his life, his weight, development etc

has all been way behind although is mental development has been good. he has

been at nursery and tube fed since he was 5 months old and he also is very

sociable. I counted today and he now says hello to 8 people on his short 5

minute (in a buggy) trip to the nursery including the nearby concierge, tobacco

kiosk lady, " Chestnut roasting Grandpa " and a homeless man who generally sits in

the local park.

We had an endoscopy done recently on (it requires general aneasthetic but

is only a 20 minute procedure). It showed damage to the villi in the small

intestine (an endoscopy camera can't get down or up as far as the large

intestine where food is absorbed whichever way you put the camera in - I

understand a new camera has just been developed in Israel where you swallow it

and wait for it to come out the other end but that is 2000 dollars a pop) but

the small intestine is supposed to mirror conditions in the large intestine

pretty well.

Anyway, his intestinal wall was damaged (partial villus atrophy is the official

term) and this is a sign of non-immunoglobin allergies (i.e. ones that don't

show up on blood tests, don't generate large amounts of antibodies in the blood

and don't show up straight away on the skin for instance as reactions to food).

It takes 2.5 months to show symptoms and then they are severe. Some

children show no symptoms at all except the lack of weight gain. Although rare,

apparently these allergies are becoming more common and harder to pinpoint as

more environmental hormones are being inhaled and we don't really know what the

animals that we eat are being fed etc. I have been told that such allergies are

a key reason and are often prevalent in children who don't have any specific

symptoms/syndromes but just don't gain weight. The intestinal wall villi or

" fingers " have shrunk so there is not as much surface area to absorb food coming

through leading to malabsorption and inefficient processing of the food coming

in. Some patients have tiny traces of blood in stool but generally stool tests

don't show excess sugar or protein being excreted so it can go unnoticed.

Could it be worth exploring this with your doctors or incorporating it into your

reseach. villus atrophy (shrinkage), MSPI (milk, soy protein intolerance) could

be key words to put into any search engine.

Debi

mother to in Japan, aged 3 years 6 months, 9.0 kilos, 85cm, RSS, GH,

dumping, milk/soy protein allergies?

Re: New to This

Hi!

Welcome! I was in your shoes last year. Troupe sounds very similar

to Emerence - she is definitely on the lighter end of RSS towards

SGA. She also was IUGR and delivered at 37 wks 4 lb 6 oz 14.25 " . We

went to the annual convention in Chicago last July (you really should

go this year!) Dr. Harbison saw Emerence last year and wavered

between RSS and SGA (small for gestation age) and went SGA,

Emerence's geneticist followed her for a year and decided she

definitely and clinically fits RSS because of her many features, but

all mild. She has had eating/feeding issues and has received OT for

them but has never needed a tube. I knew from 20 weeks gestation on

we were in trouble - a 3 hour ultrasound with 3 techs and one

specialist does that to you! We have had the UPD7 test but only 10%

of RSS kids show up positive...Emerence was negative. I am someone

who feels much better when I'm in control of the situation so I have

actively taken on a role of learning about RSS/SGA and informing

others. I have also joined the Magic Foundation, the umbrella

organization that covers RSS...magicfoundation.org

My daughter is completely active and has been at daycare since she

was 3 months old (just shy of 8 lbs). She holds her own very well

even as the oldest, but smallest in her class. She transitions up

next week to the nursery room where most kids will outweigh and tower

over her but she will be fine. She runs and plays just like all

other kids. In fact, I think she has more energy and sleeps less

(lots of parents here seem to agree that our kids are like energizer

bunnies!). She will start GH probably in the fall. My understanding

is that GH doesn't just increase height but also muscle mass and

tone, increases bone mass and reduces hypoglycemia. Just to give you

an idea, we did a walk a thon in October with another RSS family with

a 5 year old boy. Their son was classic RSS and tube fed - and had

been on growth hormone for 2 years. Their son was taller than my OWN

NON RSS son!

Just hang in, maybe print out posts you want to think about or show

to your doctor ... keep a 3 ring binder with information you find

out so you don't feel so overwhelmed and if you wnat to re=read

something you will have it.

Also, all the parents here are extremely helpful - post and ask

questions - you will get answers! AND, try and come to

Chicago...also, post where you are from and you might have a family

hnearby???

, mom to , 5 and Emerence,2 RSS/SGA 31 " 21lb

> Hi Everyone,

>

> I may be jumping the gun, but I have been reading your posts for a

> few days now, and I feel numb. My son is 13 months old 26 " and 14#.

I

> was diagnosed with IUGR at 32 weeks. I went through the bedrest and

> constant non-stress tests and perinatologist visits for ultrasounds

> until I was induced at 37 weeks. Troupe was born without

> complications weighing 4lbs 3oz, and 16inches long, gestational age

> 38 weeks. He went home 3 days later at 3 lbs. 14oz. He did fine

with

> temperature control, maintaining his blood sugar, and feeding. On a

> freak chance we found out he had a heart defect when he was 5 days

> old, but that has healed on its own. I guess I am posting becauses

I

> really don't know what to do with myself, I feel a million emotions

> everyday ranging from anger, to complete elation for my most

precious

> gift, to utter sadness, to fear of the unknown. No one ever

mentioned

> RSS until 3 months ago when we finally saw a geneticist at the

> recommendation of his new cardiologist (we moved from Seattle to

> Mobile). The geneticist said he wasn't convinced it was RSS, but he

> says he does have some traits (confirmed by the endocrinologist)

like

> a triangular shaped face, below 3 percentile in wt and ht (still),

> delayed bone age of 2 standard deviations below the mean, and a

poor

> appetite (he will chug bottles all day long and graze on solid

stuff,

> but hates sitting in the high-chair for a meal). (I can probably

> count on my hands the number of times he has actually finished a

jar

> of baby food. Although, I have to say, he has a real interest in

what

> we are eating). But he doesn't have any asymmetry or motor delays.

He

> has hit every developmental milestone on target, or ahead. He has

has

> no problem crawling, walking, climbing, or literally climbing the

> walls. The only possible delay is speech, he babbles contantly and

> points " ba-ba " , " ma-ma " , etc. but no discernable words yet. I guess

> it is a little early to call it a delay. So we finally got blood

> drawn for the UPD 7 test and endo stuff last week, and I won't know

> the results of the UPD for about a month. I feel like I'm in limbo.

I

> read all of these things about feeding tubes, appetite enhancers,

and

> growth hormone treatment and I feel like crying. I know that is

> selfish, but I don't know what to do or if I'm even doing enough. I

> can't find any information on adults with RSS, and I know it is not

a

> new phenomenon. What kind of results do they have with growth

> hormones? My endocrinologist said they response with RSS is good,

but

> is that GOOD enough????? Can he still participate in sports and

other

> activities like other children if we're trying to conserve calories

> for growth????? I don't know what to do. Is there a chance it isn't

> RSS, do other children experience this type of growth delay without

> having RSS?

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