needed help and no one helped

[diana banks]

I posted on the 30th of july after months of research on my own with no help or useless suggestions from drs, friends, ST, PT and countless dowellers. Unfortunately this site has been as useless as all the suggestions and non help that I have received from everyone else. I am sorry that I felt this was a last resort and I would find the answers here since this site deals with cranofacial help. This was no help.


Diana Banks

[amy]

I think maybe if you gave it more time. I don't have a similar situation as yours and I'm sure a lot of us here don't, but there are probably some. If you look down the list of questions, most have replies after some time.

[kathym]

I'm sorry that you feel so frustrated!! But, like Amy said, yours is a somewhat unique experience and it may just be that no one with a similar situation has read your post. Don't give up!! In the meantime, maybe your pediatrician can suggest some support groups for you? Good luck to you.

[acrossdeemiles]

Diana,
I read your post as soon as it was on the board. I wanted desparately to have the advice you needed but have not experienced anything close to yours. I want you to know that there are people who care but don't have the answers that you seek. I hope that you are able to find what you need and that you will find some positive in the resources that are available. The system can be helpful even if it's just to hear some encouraging words to lift your spirits. Wishing all the best,
acrossdeemiles@yahoo.com

[Carol]

Hi Diana,
I have not been to this site in months! I have a job now that takes up much of my time. I read your first message and a red flag went up. Has your child been tested for any cleft related syndromes? E-mail me at Caroldove@aol.com and I can send you some info on this. I hope it helps.
Carol

[Calvero]

I'll have to agree with the others... your situation is a rare one . I searched in a few search engines and only found a small handful of pages that mention it, but nothing that talked about it in detail.


Although it isn't much I gfound a parent's journal that talks about their child who was born with a cleft palate and who used a mic-key:


<a href="http://web3.foxinternet.net/mikeanddeb/Bailey.htm">http://web3.foxinternet.net/mikeanddeb/Bailey.htm</a>


The mic-key entry is dated June 20.


And Carol may have a point about your child possibly also having a cleft related syndrome. A couple other places that I saw mic-key and cleft mentioned was in glossaries for Apert Syndrome ( <a href="http://www.apertinfo.com/glossary.htm">http://www.apertinfo.com/glossary.htm</a> ) and Pierre Robin ( <a href="http://www.pierrerobin.org/glossarymz.html">http://www.pierrerobin.org/glossarymz.html</a> )


But I can't find much more than that


If you live in the United States, you could try and call Cleftline at 1-800-24-CLEFT, which is the Cleft Palate Foundation's hotline... they might be able to point you in the right direction.


Kim,
The Cleft Club,
<a href="http://cleftclub.cjb.net">http://cleftclub.cjb.net</a>