Re: Stirling saw a consultant today

[Guest guest]

Hi ,

I believe what the Dr is talking about is having a g-tube placed. It would

be my last resort, but if it comes to that, it's not a bad thing. I believe

the NG is much worse than the g-tube, because it adds to oral aversions, and

that doesn't help anything. had his g-tube placed in Sept 2002, and

it's become so much a part of him, that it would be strange to see him

without it! LOL

It's great to hear that Stirling is on the RSS growth chart. is just

touched the average height line and he's been on GHT since last July!

Sounds like things are going really well. Congrats!!

Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 33.2 " (84.5cm),

G-Tube, GHT)

[Guest guest]

>

> Basically he has confirmed RSS as best he can (he has seen a

> previous case many years ao and recognised it in Stirling) and is

> now going to refer us to the growth specialists at Addenbrookes

> Cambridge for plans and treatment. He may need Growth Hormone

> Therapy and/or Periactin but that will be discussed with the

experts.

>

> He did mention overnight feeding and Gastromy button (?) I got the

> impression that is only considered if all else fails to put weight

> on him. Any thoughts folks? is it a horrendous prospect? it can't

> be any worse than NG feeding can it?

>

> I was also given an RSS Length chart and Stirling appears on the

> average line for it. It's really good to actually see him on a

> chart instead of being way below it!

>

> So all in all it was a positive experience and the consultant was

> very supportive. He gave me advice on how to 'shut up' health

> people who wish to insult me!

>

> so it looks like we're going to become 'proper' members of this

> group after all!

>

> cheers

> T and Stirling:)

[Guest guest]

Oh, I HATE this new way of Yahoo Groups. I posted a long reply to

you, , and it did not post, at least not the last time I

checked. It just redisplayed your original message. So, here I go

again....

Having a g-tube placed is not a difficult thing to have done or to

learn how to deal with. Of course, your child going through surgery

is not a pleasant thing, but learning to do all that needs to be

done afterward is not too bad. Besides, you have all of us to help

support you. We have all learned little tricks along the way. My

best one is layering the crib mattress with several layers of sheets

and padding so that if the pump leaks in the middle of the night,

all you have to do is peel off one layer and deal with the dirty

sheets in the morning.

Max has had a g-j tube for years now. He is almost 17. We are

hoping to get rid of it in May. We have used it over the past years

only for when he has had a stomach virus or other reason not to be

able to keep food down. Since he has not used it for about a year

now, we are hoping the doctor will let us pull it. He's had a

stomach bug three times and we have not used it at all.

If you do have to go the g-tube route, keep in mind that most of us

have found it to be more of a relief than a hinderance. Finally the

struggle to get calories in is much easier. And eventually the kids

will eat. It just takes time.

Jodi Z