Joanne - Urgent!! The UK convention

[Guest guest]

HI Joanne sorry to spring this on you on such short notice.. I've

been sick with bronchitis past 3 weeks and just now catching up on

emails...

Thanks heaps for info on UK convention PLEASE can you give me details

on where/when/who ran it/ hospital & dept. Dr Stanhope works for

We have an appointment with our RSS-resisitant endo tomorrow morning

and I'm STILL trying to convince her there is an issue with

hypoglycaemia/ketones, also is there a reference or research article

to the 'concrete evidence' GH has an impact on adult height...

Thanks... stressing out...

Steph (mum to Darcy 16 1/2 months ?RSS currently unwell with a UTI

and Tessa 5)

> Hi Maeve and all that are interested

> Here's a quick run down on what happened at the conference on

saturday.All the talks were very informal and mainly consisted of

questions/answers so I apologise if its not in correct order.Of

course this is only my interpritation of what the doc's said and

their opinion

> Here goes.

> .

> Ist talk-Dr susan Price-geneticist-Northampton general hospital

> >We quickly went over very basic genetics[one chromosome from each

parent etc]

> >5% of gentic material is of use,95% is evolutionary rubbish

> >38% of birth weight is gentic,62% is epigenetic-1/2 maternal

[nutrition etc]

>

1/2 unknown

> >10-30% of iugr babies remain small as children/adults[they are

most likely to catch up if their head is in proportion ie/also small]

> >UPD7-All dads genes tend to make the baby bigger[survival of the

fittest]and mums smaller[easier to deliver!!]

> >In 10% of RSS, the embrio gets 2 mums and 1 dads chromo.As a child

would not suvive with the three it gets rid of one of the chromo.and

if this is mums then everything is fine,if however it gets rid of

dads then the genetic messages will be to produce a smaller child

[rss].The children found to be positive to UPD7 are always at the

milder range of rss.[over 2 kg and no assimetry]

> >It is however possible that when childen and adults are tested

negative they could have had the genetic material as foetuses but it

has not remained in the blood/skin.[does that make sense!!!]It is

possible that all rss children are positive UPD7

> >Children that do have a fathers chromo. could have the fathers

genes 'switched off '.

> >Dr Price is very sceptical that rss is hereditry

>

> 2ND talk on injections-nothing you would not no

>

> 3rd talk- stanhope-GOSH

> Just a few points that came out of a VERY informal talk

> >30% of rss have some form of special needs[do not perform at

school as well as they should]He thinks they develop this problem

over the first year or two due to nocturnal hypoglycaemia[becoming

more pro gastrostomy

> feeding and waking children at night]

> >There is now concrete evidence to say GH makes your child taller

as an adult[horay!!!]

> >Rss kids are very bad at being seen by drs as adults [i don't

blame them]but they are at greater risks of heart

disease,stroke,diabetis[he doesn't know why]

> >He would not dx a child rss if they eat normally or if they were a

normal birth weight and then dropped down the centiles

> >The more severe the rss the more likely the child will develop

early puberty

> >rss kids do better on gh than iugr.kids

> >rss kids appear to carry on growing well if taken off gh[when they

have reached their genetic potential]iugr do not and start dropping

down again.

>

> I think thats it,if i remember anything else i'll let you all know.

> Hope this all makes sense and is of use

> Joanne

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