more information about lily.

[Guest guest]

Hi Jayne,

Welcome to our group.

I hope we can answer your questions.

I read your message below. I just want to let you know that your

geneticist is wrong about growth hormone. My son has RSS and

it is working great for him and many other RSS chiuldren on this

list.

Also, there is an appetitie stimulant. It is called periactin. The

generic name is cyproheptadine. It is a common antihistamine. It

works OK but not real great. It does not work for a small

percentage of children but is definitely worth a try.

I noticed you are in the UK. Can you get an appointment with Dr.

Stanhope in London. He is one of the few true experts on RSS.

I hope this helps.

Ken M

>

> hi everyone,thank you for your replies.I was very plesantly

> surprised.

> Lily was born last October wieghing 4lb 11oz and just 2 weeks

> early.Noone could explain why she was so small but said she

was fine

> and would catch up.She didnt and after seeing a couple of

different

> paediatricians we eventually saw one who was concerned

about Lily

> and got us to see a genetics dr who diagnosed her as

RSS.She now

> weighs 13lb and is about 25inches long and is 14months

old.She has

> polycose powder in all drinks,has infatrini milk,has calogen

calorie

> medicine and all food high in cals.she eats just ok sometimes

and at

> the moment she will not eat at all,she has been like this for

about

> 10days now.I have arranged for her dr to contact me tomorrow

as we

> dont know what to do next re tube feeding.The dietician has

been

> helpful but we feel most of the professionals are clueless.I

have

> asked the dietician about appetite enhancers but they say

there is

> no such thing, and the genetics guy says that she will not

benefit

> from growth hormone as Rss children do not lack it.!!!!We have

an

> appointment at the end of the month with an endocrinologist

so lets

> wait and see.....Also Jody, Liam is on losec,why? I think that

Lily

> sometimes has some gastric problem when she goes though

her not

> eating phase. She tries to make herself sick by putting her

fingers

> down her throat even after one spoonful,or she will eat a small

> amount and then just vomit or eat a few mouthfuls willingly

then

> appear to be repulsed by any more,sometimes unable to

tolerate

> mildly lumpy food then a week later eat anything. is this typical

> RSS.I hope this is enough to be going on with and sorry for

going on

> but what a relief!!!! by the way we are in the UK, sheffield.and

> have a son called joe who is 4.

>

[Guest guest]

Jolly hockeysticks (I got this saying from a client and I love it

so)! I could be mistaken but I THINK there is another family in

Sheffield! My company is opening a formal office in London that is

expected to grow quite a bit so I'm sure I will have to go over

eventually in the next year or so. Also, DR. RICHARD STANHOPE is

THE most published on RSS and is at Great Ormond Hospital. CAll and

get an appt with him. He seems like a kind man.

Your daughter is much like mine, she was born at 37 weeks 4 lb 6 oz

16.25 " . She is SGA (small for gestational age) which is just like

RSS but without the " face " ... she still has many other

characteristics of RSS though.

, 6 and Emerence 34 mo 25 lb 34 "

>

> hi everyone,thank you for your replies.I was very plesantly

> surprised.

> Lily was born last October wieghing 4lb 11oz and just 2 weeks

> early.Noone could explain why she was so small but said she was

fine

> and would catch up.She didnt and after seeing a couple of

different

> paediatricians we eventually saw one who was concerned about Lily

> and got us to see a genetics dr who diagnosed her as RSS.She now

> weighs 13lb and is about 25inches long and is 14months old.She has

> polycose powder in all drinks,has infatrini milk,has calogen

calorie

> medicine and all food high in cals.she eats just ok sometimes and

at

> the moment she will not eat at all,she has been like this for

about

> 10days now.I have arranged for her dr to contact me tomorrow as we

> dont know what to do next re tube feeding.The dietician has been

> helpful but we feel most of the professionals are clueless.I have

> asked the dietician about appetite enhancers but they say there is

> no such thing, and the genetics guy says that she will not benefit

> from growth hormone as Rss children do not lack it.!!!!We have an

> appointment at the end of the month with an endocrinologist so

lets

> wait and see.....Also Jody, Liam is on losec,why? I think that

Lily

> sometimes has some gastric problem when she goes though her not

> eating phase. She tries to make herself sick by putting her

fingers

> down her throat even after one spoonful,or she will eat a small

> amount and then just vomit or eat a few mouthfuls willingly then

> appear to be repulsed by any more,sometimes unable to tolerate

> mildly lumpy food then a week later eat anything. is this typical

> RSS.I hope this is enough to be going on with and sorry for going

on

> but what a relief!!!! by the way we are in the UK, sheffield.and

> have a son called joe who is 4.

>

[Guest guest]

Hi Jayne!

Welcome to this group, hope it may help you a lot...

From the moment I refused to eat. My mom tried to breastfed me but I

didn't want it, so she got a special kind a milk and I got a bottle.

After that I've had a lowzy appetite. I ALWAYS refused to eat.

Though, I never had those appetite-stimulators everyone else is

talking about, because we found out I have RSS abot a year ago (I'm

18 now).

What a bullshit this genetics guy is saying about GH-therapie. Of

cours RSS children do lack on it, why don't you get him to look on

this site? No, but seriously, I think I will be the proof RSS

kids need it; my pediatrician didt prescribe me GH but I was never

diagnosed with RSS (I live in Holland and it's not completely known

in here).

Hope I can help you with answering your questions as much as I've

had help the past year!

Greets,

Amy

>

> hi everyone,thank you for your replies.I was very plesantly

> surprised.

> Lily was born last October wieghing 4lb 11oz and just 2 weeks

> early.Noone could explain why she was so small but said she was

fine

> and would catch up.She didnt and after seeing a couple of

different

> paediatricians we eventually saw one who was concerned about Lily

> and got us to see a genetics dr who diagnosed her as RSS.She now

> weighs 13lb and is about 25inches long and is 14months old.She has

> polycose powder in all drinks,has infatrini milk,has calogen

calorie

> medicine and all food high in cals.she eats just ok sometimes and

at

> the moment she will not eat at all,she has been like this for

about

> 10days now.I have arranged for her dr to contact me tomorrow as we

> dont know what to do next re tube feeding.The dietician has been

> helpful but we feel most of the professionals are clueless.I have

> asked the dietician about appetite enhancers but they say there is

> no such thing, and the genetics guy says that she will not benefit

> from growth hormone as Rss children do not lack it.!!!!We have an

> appointment at the end of the month with an endocrinologist so

lets

> wait and see.....Also Jody, Liam is on losec,why? I think that

Lily

> sometimes has some gastric problem when she goes though her not

> eating phase. She tries to make herself sick by putting her

fingers

> down her throat even after one spoonful,or she will eat a small

> amount and then just vomit or eat a few mouthfuls willingly then

> appear to be repulsed by any more,sometimes unable to tolerate

> mildly lumpy food then a week later eat anything. is this typical

> RSS.I hope this is enough to be going on with and sorry for going

on

> but what a relief!!!! by the way we are in the UK, sheffield.and

> have a son called joe who is 4.

>

[Guest guest]

Hi Jayne

I missed your question about growth hormone. Yes, most RSS kids have

normal levels of growth hormone. And your Dr is wrong in saying that

growth hormone wont help their growth also their muscle mass and

possibly appetite.There is research and alot of RSS kids on growth

hormone. Dr Stanhope has done some of that research.

There is lots to learn.

One of the biggest lessons is that most Drs dont know alot about

RSS, we have to educate them, or point them in the right direction,

usualy the better option. There isnt alot published on RSS, so

finding the right team sometimes takes a while.

I remember being right where you are,it takes a while to understand

everything, I dont know that I do! Im sure Ive asked a few questions

twice.

Take care

Jody.

> >

> > hi everyone,thank you for your replies.I was very plesantly

> > surprised.

> > Lily was born last October wieghing 4lb 11oz and just 2 weeks

> > early.Noone could explain why she was so small but said she was

> fine

> > and would catch up.She didnt and after seeing a couple of

> different

> > paediatricians we eventually saw one who was concerned about

Lily

> > and got us to see a genetics dr who diagnosed her as RSS.She now

> > weighs 13lb and is about 25inches long and is 14months old.She

has

> > polycose powder in all drinks,has infatrini milk,has calogen

> calorie

> > medicine and all food high in cals.she eats just ok sometimes

and

> at

> > the moment she will not eat at all,she has been like this for

> about

> > 10days now.I have arranged for her dr to contact me tomorrow as

we

> > dont know what to do next re tube feeding.The dietician has been

> > helpful but we feel most of the professionals are clueless.I

have

> > asked the dietician about appetite enhancers but they say there

is

> > no such thing, and the genetics guy says that she will not

benefit

> > from growth hormone as Rss children do not lack it.!!!!We have

an

> > appointment at the end of the month with an endocrinologist so

> lets

> > wait and see.....Also Jody, Liam is on losec,why? I think that

> Lily

> > sometimes has some gastric problem when she goes though her not

> > eating phase. She tries to make herself sick by putting her

> fingers

> > down her throat even after one spoonful,or she will eat a small

> > amount and then just vomit or eat a few mouthfuls willingly then

> > appear to be repulsed by any more,sometimes unable to tolerate

> > mildly lumpy food then a week later eat anything. is this

typical

> > RSS.I hope this is enough to be going on with and sorry for

going

> on

> > but what a relief!!!! by the way we are in the UK, sheffield.and

> > have a son called joe who is 4.

> >

>

[Guest guest]

Jayne,

Most RSS kids have gh levels within the " normal " limits, however they do not

efficiently use

what they have. When my son Max was just about 3, he started on gh, with lots

and LOTS

of pressure on the insurance company on Dr. Harbison's part. I mean, we sat

there for at

least 2 hours while she made calls to get approval. That was 14 years ago,

almost 15.

Now it is a much more common course of treatment - and approved here in the US

for

those who are born SGA, or small for gestational age.

The one thing you have to learn is that our kids need to achieve catch-up growth

through

calories before they should start gh. As I always quote Dr. H., " They can't

grow on air. "

Once the caloric intake is increased, you will see a jump in the growth curve.

I don't mean

that your child will all of a sudden be on the charts and maintain the curve,

but you will

see some upturned swing. Then it will level off. Growth velocity will slow

down. At that

point gh treatment is started.

My son Max is now 17.5 years. I can proudly say that he is at least 5'5 " and

120 pounds.

We are thrilled. If you only knew what we have been through with Max.... But

you will

hear about various incidents along your journey. I post here often and share a

lot!

Jodi Z

[Guest guest]

Hi I forgot to say that Lily is UPD7, is there a lot of difference in

UPD7 and RSS or are they both the same?

[Guest guest]

All it means is that Lily definitely has RSS.

Jodi Z

>

> Hi I forgot to say that Lily is UPD7, is there a lot of difference

in

> UPD7 and RSS or are they both the same?

>

[Guest guest]

Hi Jayne,

UPD7 is something that some (all?) genetisists use to diagnose RSS, BUT

less than 10% of RSS kids are UPD7 and I have been told that just

because a child is UPD7 doesn't definitely confirm RSS either. SO I

think that they still have to look at all the physical characteristics

too. I also think that I have been told that UPD7/RSS kids are

generally milder in symptoms that other RSS have??!!

Noah is UPD7 and is a milder RSS, well so far anyway he doesn't seem to

have the " gut " issues and I'm praying that won't happen.

Hope that helps a bit ... I am certainly not an expert ... I have only

been on the list since Sept and of course am learning new things

daily. But like someone said ask ask ask and SOMEONE will have some

information for you. Sometimes I try to refrain from posting too much

as I don't have all the information but I am confident that if I do

make a booboo someone out there will correct it.

This is quite the ride so hang on, we're all there with you!

Dawna

Matt 13, 11, 8 and Noah 3 RSS

>

> Hi I forgot to say that Lily is UPD7, is there a lot of difference in

> UPD7 and RSS or are they both the same?

>