[magily]

Hi my name is Helen, I have 4 children, aged 15, 13, 10 and 5. Kyle my eldest has an undiagnosed syndrome. Kyle's biggest challenge for us over the years was feeding, I am thrilled to say though after a lot of hard work we have come a long way. For the first for years he was j-tube fed , then up until the age of 10 he was g-tube fed at which point the g-tube was removed and now he eats everything we eat. Kyle is delyayed developmentally, though feel blessed as he can walk and started talking at age 5yrs.
Kyle is very tiny for his age so doctors are now considering growth hormones but I am still unsure about this.
My biggest challenge which I am about to embark on once again, is getting him out of diapers at night. Kyle was toilet trained at 4yrs but I have never been able to get him dry at night, I am psyching myself up to start this weekend.
I am hoping to get to know you all as I feel that I have lots to offer as well as  knowing that I also need the support.

[johnvb]

Hi Helen,
Great to hear from you - it sounds like you've done a great job bringing up Kyle and have learnt loads over the last few years. We have the strange situation of having to wake our son at night to give him a big drink - so he is also still in nappies - as we call them over here .

Good luck with the dry nights though I wish I could offer some advice!

Best wishes

John

[Speeds]

Hello from me and my family.

Just a couple of points.

1.  My son has Prader Willi Syndrome and one of the treatments to help is Growth Hormone.  He has had it for 5 years now and it has done wonders.  GH is useful if there is a deficiency in GH produced naturally.  I would have a chat with your paediatrician and go for it.  While, like all drugs, there can be some side effects I can honestly say that apart from the growing taller aspect, my sons hands and feet size have normalised and also his body fat composition has changed.

2.  Getting out of nappies at night - there are a few devices that may help.  My friend's little girl (now aged 8 like my son) was always wet at night so she tried a device that emits an alarm.  Within 2 weeks she was waking up to go during the night rather than just wetting.  http://www.bedwettingalarm.co.uk/  She says it was worth every penny.

Anyway, welcome and hope you enjoy the site.

Karen

[magily]

Thanks for the replies.
I am originally from England, I moved to Canada in my early twenties, I do come home on a regular basis with my family as all of my family still live in England.
With regards to the bedwetting alarm I have heard they are great for most kids but for children with special needs the alarm is far to loud. On saying that I saw last night that there is one available for children with special needs that is not as loud.
It was reassuring to hear how positive your experience has been with the growth hormones.

[Speeds]

Hi

Apparently this one is not too bad.

My friend's child has Prader WIlli and autism and she managed it.

If you can send me your email address I will ask her to send you a mail with more details about it - as it how she found it.

[Julie]

Hello Helen

The only advice that I can give about getting your son dry at night is what I did for both of mine (and probably most other parents do as well at first).

Get one of those nice plastic covers for the mattress (the type that make you sweat horribly but protect your bed).

Be mindful of the amount of drinks just before bedtime.

Make him go to the toilet just before going to bed.

Just before you go to bed, lift him out and sit him on the toilet ( or get him to stand if thats better) and he will probably have a wee whilst being half asleep.  Try not to speak to him too much - you don't want to wake him too much.

Tuck him back up to bed and hopefully he may go through.  Have plenty of spare bedding available -just in case of accidents in the night.

But having 4 children...... you probably know all this already!

Good Luck.   

[Speeds]

BTW - have passed your email addy on to my friend and she will write to you and answer any questions you might have