Re: Digest Number 2137

[Guest guest]

Happy New Year Everyone

Though I'm not a frequent poster to this list, I do try to keep up with

what's going on, and hope to find more time in future to contribute.

Just thought I'd let you know how Hamish is getting on, following a visit

today to our endo at Yorkhill in Glasgow. Hamish is now seven and doing

really well. At the moment he's 114 cm and 3 stone, 2lbs and 8 ounces in

weight. He doesn't have GH treatment and, although I think I'll take this

with a pinch of salt, the endo today said he could reach 5' 6 if he carries

on as he is. Since I'm only 5'2 and we live in a country with lots of small

men, I'd be delighted if he reached that height. But, as I say, I'm not

counting on it.

For those of you who have only just found out your child has RSS, this is a

great place for information and sharing the ups and downs of living with an

RSS child. Like Eileen, however, since making the decision not to give my

child GH, I haven't been participating very much here. As she said, it's

just great to have a happy, healthy child doing all the normal things and

getting along great at school, and sometimes we want to just leave it at

that and not think too much about their " syndrome " . And, to be honest,

apart from his height, there isn't much to differentiate between Hamish and

his classmates. I would say, however, that Hamish seems to have a fairly

mild form of RSS.

Something I'd like to share, for those who are concerned about the

possibility of learning difficulties for your child, don't be unduly

worried. I have recently been advised by the school that Hamish is

considered a " more able " child, and, at seven, he has a reading age of

around eleven. He is also particulary able at maths, too and the school are

hoping to fast-track him and provide him with appropriate learning support -

he has been participating in things like concentration skills, logic and

problem solving. In common with many RSS children, he has poor handwriting

skills but his writing is legible, and will improve as he gets bigger, so

it's not a problem.

I think the concern with learning difficulties may be connected with severe

hypoglycaemic episodes as infants, and this is something to watch out for.

Hamish wasn't diagnosed with RSS till he was around 1, and although I have

never checked for ketones or anything, I was aware of nighttime sweats when

he was a baby. Since I was an anxious mother and rarely slept(!), and was

concerned about his lack of weight gain, I remember regularly waking him

(and consequently feeding him) when this happened, so perhaps I intuitively

avoided the worst by doing this.

My main concern at present is that Hamish might go into puberty too early.

He has had a recent increase in bone age (the test results were flawed in

other ways, so this is to be confirmed by further tests today), but my endo

assures me that, although he may be in adrenarche (pronounced adrenarchy, I

learned today!), this is not unusual and is, in fact, within the normal

range for for boys without RSS between the ages of 6 to 8, and not

indicative of early puberty. I did mention the possibility of delaying

adrenarche (as I believe Dr Harbison is doing with the side effect of

postponing puberty) but as the adrenarche is normal and not excessive (there

are no physical signs), and the treatment very new and experimental, he

didn't recommend this.

I've heard so many of you say that your RSS child has a big personality, and

it is this more than anything that I believe will see them through. In the

early days with Hamish, it was such a struggle for his dad and I. There is

nothing worse than realising your child isn't growing and gaining weight as

he should and then coping with the diagnosis, the decisions, the guilt and

so on. It does get better though, much better believe me. I thought back

then there would never be a day when I wasn't aware of his condition but

there is. Now, while I still keep informed and do my best for him, he's

just Hamish, and what a great kid he is - personable, intelligent, funny,

cheeky, determined ....... I could go on but I'll just leave it with my

laugh for today (unwitting though it was): The endo was checking the

development of Hamish's testicles against a string of different sized balls,

some prepubescent, the others not, and which ranged in size from a grape,

perhaps, to, well, a snooker ball. I explained that this was to test how

far on to becoming a man Hamish was, not to see if there was anything wrong

with him, and he looked at me and with some gravity, declared " well, even if

you were man, and they were THAT size, there would be something wrong with

you! "

Best wishes

Barbara

[Guest guest]

Hi Barbara.....I love the way you say you live in the country with 'small men '

there aren't seven of them by any chance??!!

I'm really glad Hamish is doing so well.....5' 6 is impressive......my husband

is 5'6 and I don't even consider him to be short....probably because I'm only

5ft 1!

The question of gh treatment is so difficult for me.......my gut instinct is to

leave her alone and let her be whatever she will be and hope that she grows up

to be happy as she is. But what if she desperately misses that 5 or 6 extra

inches (at most) gh would have given her??Have we then failed her? I don't want

to run the risk of harming that tiny body that is so precious to me! That's not

to say that others giving their children all sorts of drugs are risking they're

children. They are doing what they think best for their children because they

love them to bits as I love Imogen. I think none of us really know what to do

for the best and we should just follow our gut instincts. But I feel in my case

(Immi is at the severe end of the scale) no amount of gh or anything else is

going to make much difference. She is small because she has RSS and there is no

cure.At school she is accepted for who she is...and she is by know means the

only 'different' child at school. One or two

children are very big for their age and for all I know may have a growth

disorder too. People come in all different shapes and sizes and what a boring

world it would be if they didn't!

How encouraging that Hamish is bright! Imogen is slightly behind her classmates

.. That could have been caused by hypoglycemia (excuse spelling!) in infancy but

if she had that we didn't notice it! We did know of the chance that she could

have it and we were given a kit to test her blood sugar at home but the results

were always normal.

Maybe she will catch up....maybe not.....but she will be able to live an

independant life and do everything ordinary people do (albeit with a

stepladder..) Working in a special needs primary school (i only help out with

their feeding and toileting) I see at first hand children soo much worse off

than Immi.....and I go home and I'm so thankful she's just small!

Like you my biggest concern is psm (premature sexual maturation) and if we have

to give her medication I feel that giving her drugs to delay this is far more

worthwhile....but that's just my opinion!

I love your snooker ball anecdote......thank goodness the doctor dn't get out a

rugby ball!!!!!!

Best wishes...Eileenxx

(mum to Imogen Rss 3 feet of gorgeousness)

Eileen x

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[Guest guest]

Ha, ha, Eileen, no there are definitely a few more than seven, even

in this tiny country of Scotland!

Am I right in saying Imogen is 5? In what way is she behind at

school? I just wondered because it seems to me that most of how

children are asked to show what they have learned in the early

primaries is via writing or colouring in, and I know that Hamish was

and still can be very slow at getting through the work when it is

presented in this way, because of the emphasis on using his motor

skills. He is still the messiest colourer-in!

I think you are right to go with your gut feeling about gh because

there are no guarantees either way - some endos believe it will give

extra final height, and others don't, and I am sure there are studies

and reports supporting both views. It certainly was no easy decision

for us to make, and I still worry that it is the right one, but we

can only do what we think in our hearts is best for them, and like

you, I feel we should let him be what he is since he is healthy and

happy. I just try to make sure he eats well and enough, drinks lots

of water, and gets lots of exercise, just what you would want for any

child, but a bit more urgent! Luckily, Hamish is now quite a good

eater, and will try anything as long as it's a green vegetable!! He

even happily tried sprouts at Christmas and liked them " but they're

not my favourite. " How weird!

How is Imogen's appetite? I think I remember you saying not good.

Have you ever tried using Periactin? It really has remarkable

results and has got us through some periods where his appetite had

gone way down again. The moods he suffered, however, were horrendous

and it was heart breaking to see him so frustrated and angry, so we

really only used it as a kick start to his eating well, and that

seemd to work. His appetite went way up, and he slept a lot, both of

which are of course good things for growth. After a few days, his

tum had expanded and he would be eating better even without the

Periactin.

Best wishes

Barbara

[Guest guest]

Barbara and Eileen,

Do not fret over whether or not to use gh. Time has not run out and

you can always change your minds if you want to. There are people

who did not start their RSS kids on gh until they were 10 or so and

they had good results. You have plenty of time to " worry " about

that.

The most important thing, however, is to do what you both are saying

to do: go with your gut and your heart. You cannot make a wrong

decision as long as you know what your options are and you feel good

about the decisions you make. The heartbreaking cases are when I

meet families where they were never given the options and they find

out too late that they could have gone another route. Keeping

yourselves educated and informed are the best " medicine " you can

give to your children.

Jodi Z.

[Guest guest]

Hi Barbara....you just sounded like a ish Snow White for a minute there....

Imogen 6....7 in May....so you see she is extreemly small. But that's the way

she was always meant to be.....her placenta was small too....just the right size

to produce a perfect 2lbs 13oz Imogen!

I know what you mean tho' about the early tests....completely wrong in my

opinion...as are the SATS tests....I tell my kids not to worry(I have 3 others)

they are only for the greater glory of the school!

But I digress.....Imogen's learning problems could be just a family thing. As

another person said we mustn't relate EVERYTHING to RSS! I have 3 other

children.....all non RSS, my oldest child Lucy is 13 and averages along ok. Then

I have boy/girl twins of 9.....the boy is smart enough academically but has

co-ordination and slight behavioural problems....(nervousness,anxiety, rocking,

he still has a comfort object) my twin daughter has much more confidence than

her twin but has mild learning difficulties on the same scale as Imogen...tho

she beats her brother hands down at artwork!) My children's father.....who is

now a qualified Librarian with o levels, Alevels and a degree, was avery slow

starter and couldn't even speak properly until he was 7. So Imogen's learning

problems could have nothing to do with RSS. However, having been reassurred for

a couple of years when Imogen was a baby that there was no intellectual

impairment associated with RSS, we were dismayed to hear from a proff

of something or other at a convention 3 years ago that they are now saying that

30% of RSS children have learning difficulties. So Immi could just be in that

30%.Who knows????!!

Anyway...as I said she'll be fine in terms of making her way in the world. You

only have to talk to the adult women on the site who are just over 4 feet to see

how confident and happy they are. Short stature is an inconveniance and nothing

more.

As for eating , Imogen's appetite varies from day to day.....as is the same for

any child she would survive on crisps if I would let her......I have to be very

strict on her trips to the crisp cupboard or not musch dinner will get eaten.

But she will try all sorts of things and likes things that the other kids don't.

I'm quite happy tonight because for the first time she polished off her whole

plate of dinner! She tried something new (I don't cook) it was one of those

frozen cod in butter sauce things...I gave her a few oven chips and a good big

spoonful of baked beans and she ate the lot! I told her to sit down and rest her

tummy!!! Then she ate a doughnut!

So it varies from day to day. But I don't think she needs periactin. I didn;t

think it was available in the UK anyway. I think RSS kids are programmed to be

thin and that's that!

BEST OF LUCK

Eileen xx

Barbara Dunbar barbara.dunbar@...> wrote:

Ha, ha, Eileen, no there are definitely a few more than seven, even

in this tiny country of Scotland!

Am I right in saying Imogen is 5? In what way is she behind at

school? I just wondered because it seems to me that most of how

children are asked to show what they have learned in the early

primaries is via writing or colouring in, and I know that Hamish was

and still can be very slow at getting through the work when it is

presented in this way, because of the emphasis on using his motor

skills. He is still the messiest colourer-in!

I think you are right to go with your gut feeling about gh because

there are no guarantees either way - some endos believe it will give

extra final height, and others don't, and I am sure there are studies

and reports supporting both views. It certainly was no easy decision

for us to make, and I still worry that it is the right one, but we

can only do what we think in our hearts is best for them, and like

you, I feel we should let him be what he is since he is healthy and

happy. I just try to make sure he eats well and enough, drinks lots

of water, and gets lots of exercise, just what you would want for any

child, but a bit more urgent! Luckily, Hamish is now quite a good

eater, and will try anything as long as it's a green vegetable!! He

even happily tried sprouts at Christmas and liked them " but they're

not my favourite. " How weird!

How is Imogen's appetite? I think I remember you saying not good.

Have you ever tried using Periactin? It really has remarkable

results and has got us through some periods where his appetite had

gone way down again. The moods he suffered, however, were horrendous

and it was heart breaking to see him so frustrated and angry, so we

really only used it as a kick start to his eating well, and that

seemd to work. His appetite went way up, and he slept a lot, both of

which are of course good things for growth. After a few days, his

tum had expanded and he would be eating better even without the

Periactin.

Best wishes

Barbara

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