Welcome to this new Forum.

I am in the process of setting up a new page on the Clapa website www.clapa.com dedicated to Pierre Robin sequence and would welcome your comments on what you think may be useful to include, topics include

<UL>

<LI>Personal stories

<LI>Photos for a new gallery

<LI>Frequently Asked Questions section - What questions did you need answered?</LI></UL>

Alternatively, feel free to use this forum for general conversation or questions.

Kind regards

Sue

i think this a great idea i’ve heard it metioned a few times and ive seen bit in a few leaflets about it but it would be great to have more information avaliable from a repliable source such as CLAPA! x

Hi Sue, that’s a great idea. My 5 month old son has it and it’s always better to get information from a reputable site rather than a random google search.

It would be useful to include information on the small lower jaw and how this affects the position of the tongue and the knock on effects of this. Such as the tongue blocking the airway if the child rolls onto it’s back and suggest a solution ie the angel wings you can buy to keep the child on it’s back and where to purchase. As soon as my son Clive reached about 8 weeks and started to wriggle he woke every hour to two because of this and it was 2 and a half months before we became aware of the product. Also the problems that can be encountered with swallowing as the tongue can sometimes be in the way and cause choking.

That’s all I can think of for now that would have been useful to know.

Dee

Hi Dee

Thanks for your comments. I have been consulting with the person who used to run the Pierre Robin Support Group. I am using a lot of her information from their old website. It is in the process of being reviewed by health professionals to ensure that it is all up to date and relevant. We are also in the process of upgrading the whole Clapa website which will be launched on 1st June 2009 and the new Pierre Robin page will then go live then along with our new Membership scheme.

Kind regards

Sue

Hi my son was born wit a cleft palate and when he was 3 weeks old he was diagnosed with PierreRobin Sequence this required him to have a tracheostomy.  At the time a didn’t know much about the condition but talking to the Clapa nurses Anne and Shirley at glasgow and looking at the clapa website was a big help - the more info the better so thank you ! xx