Comments on: 25 Things about life with Fragile X

By: Umma

Umma — Sat, 19 Mar 2011 01:33:43 +0000

Gracious! I’m blushing. Thank you all so much for the kind words!

By: Leslie

Leslie — Sat, 19 Mar 2011 01:18:25 +0000

This is one of the best things I have ever read!

By: Deborah Parker

Deborah Parker — Fri, 18 Mar 2011 19:09:24 +0000

Wonderful blog post. I especially was touched by #25 Don’t tell me you’re sorry. I am not. How true. I don’t like when people tell me that “I am an angel.” No, I am just trying to be the best mother that my children deserve. I’ll move mountains for them….raising children with disablities does not make me an angel…it makes me a better mother. I wish I could do more for my kids. Thanks for your post…

By: Sue Bride

Sue Bride — Mon, 10 Jan 2011 12:31:01 +0000

Fantastic article – I love the phrase “Never assume he “can’t.” He can, he does, he will.” However small or long in coming the progressions are, when they do arrive they always make me proud of my son.

By: Dorinda

Dorinda — Tue, 19 Oct 2010 10:20:34 +0000

Lol, me again, no.25 should be in great big huge letters

By: Dorinda

Dorinda — Tue, 19 Oct 2010 10:17:53 +0000

ooops, ‘king’ was meant to be ‘kind’!

By: Dorinda

Dorinda — Tue, 19 Oct 2010 10:15:03 +0000

I can relate to the drugs intervention, although our history is different. When my eldest was diagnosed with FXS we had already spent months on a restrictive diet as our peadiatrician specialised in dietary intervention in children with ADHD and Autism (this was our initial diagnosis before blood tests proved otherwise). If we hadn’t seen such a dramatic change in his behaviour and nappies (diapers to you) we wouldn’t have believed it. He went from being a child who would completely trash a room in 30 seconds and filled at least 13 nappies a day with what I can only describe as a disgusting mess to filling it 3 or 4 times a day and being able to be in a room without wrecking everything in sight, this happened over a period of about a month.
I was terrified of giving my precious little man drugs of any king but especially ones which had not been proven to be safe in the long term, it caused no end of arguements but in the end it was decided that he would stay on his diet and the only drugs he would take were anti-fungals which aided the effects of his diet.
That was 13 years ago and when his brother came along showing the same symptoms 2 years later we were sent for blood tests which found the FXS, although this was a surprise to the Dr as he’d never tried the diet in FX children, we stayed with it as it had proven itself to be helpful.
Both boys are still, gluten free, Dairy/cassein free and anti-fungal and although it was tough to start with it is now part of our lives. We still have no other intervention with drugs which is sometimes hard but we have to admit that both boys have very big personalities!!!
I’m thankful that we had the oppurtunity to try the diet and that we haven’t used medication but totally understand why others do.
Fear of the long term unkown kept us from trying that route and although sometimes I think it would be easier, the fear still grips me so we plod along as we are.
This is a great site, wish I’d seen it sooner as there can never be too many places like this that make parents feel they aren’t on their own, great job )

By: Sarah

Sarah — Wed, 10 Mar 2010 05:57:33 +0000

Seeing this a little late since it was linked to the more recent post about life with fragile x. This is a great one – thanks for publishing it!
.-= Sarah´s last blog ..Look Who’s in a Big Boy Bed! =-.

By: Did you know? | Basically FX | Living with Fragile X Syndrome

Did you know? | Basically FX | Living with Fragile X Syndrome — Tue, 19 Jan 2010 17:40:10 +0000

[...] to all the new folks who’ve stopped by recently. What you’re looking for, though, is here. Hopefully, no damage [...]

By: Umma

Umma — Fri, 15 Jan 2010 20:00:29 +0000

Thanks you guys! I’m glad I finally decided to publish it…I almost deleted it, lol.