My son with Fragile X Syndrome

[Visual Acuity]

Hi, first thank you so much for this forum and for all of your discussions. I’ve been reading here constantly for two months, all of your words of wisdom, and the help you’ve given each other has been invaluable to me. I don’t know what I would have done without this great place to help research and learn. Not to mention nearly every Google I did, brought me to here.

My son has Fragile X Syndrome (the leading cause of inherited Mental Disabilities and he has a lot of Autistic mannerisms) He just turned 25, and is at about a 2yr old cognitive age.

He recently had two stays at the hospital, a month apart. CT and ultrasounds showed that at the first stay an inflammation in the small intestine only, second stay showed the inflammation then was only in the large intestine and with some of the classical Crohn’s symptoms.

He’s basically undiagnosed at this time though, as they can’t perform a colonoscopy or an endoscopy on him until the next time he’s hospitalized, because he can’t go the usual route of doing the tests. You could probably imagine why.

I’ve immersed myself into everything Crohn’s. I’m really having a terrible time with diet, as he’s a very finicky eater. There’s a lot that he can’t eat now, and as I know most of you know, it’s one of the worst parts of this.

I’m barely keeping my head above water. But staying positive is something I’m trying to do. And I am of course desperately trying not to slip into denial, because a part of me is really wishing he doesn’t have it and this was just some sort of glitch. I’m hoping there won’t be a next time for me to know.

Thank you for all your time. I’ve been reading so much of all your thoughts and help with one another, it’s given me a lot of hope.

Thank you all again.

 

[Pilgrim]

Until you get a diagnosis, and he has medication to help the Crohn's (if that is the diagnosis) then you should really read a book called "Breaking the Vicious Cycle" (look on Amazon). It describes the SCD diet which has been known to help those with Crohn's AND Autism so it may be an amazing help to you while you are waiting on the doctors.

Hopefully someone on here will remember the name of the website for the SCD diet that was designed for Autistic kids especially (it would benefit both conditions). When we were doing SCD for my then 3 year old we used the website a lot. I'll research and get back to you if no one else beats me to it. Since he is cognitively a 2 year old it would be helpful to use approaches and recipes that are meant for children, yes?

Don't lose hope.

 

[24601]

I think the site Pilgrim is referring to is pecanbread.com

Wishing you much luck!

 

[Visual Acuity]

Thank you both so much! Pilgrim and 24601, this sounds like something that would really work for him. I’m going to go and see right now. Take care, and thank you both again.

 

[Pilgrim]

24601 - Thanks so much, that was the site.

VA I hope it helps. It is a little work to learn the diet, but I think it must become second nature after awhile. Let us know how it goes when time allows.

 

[Visual Acuity]

Thank you so much for your help! I’ve been reading on the website “pecanbread.com” I’m getting started right away. What an amazing resource it is. Thank you for telling me about it. And I ordered the book "Breaking the Vicious Cycle" that you told me about. I feel like I’m a little more able to do this. I hope you and your family are doing well, I’m sorry you have such a little one that has to go through this.

Again thank you for your kindness.

 

[Pilgrim]

Everybody here just wants to help. We've all been in that overwhelming place and unfortunately have to go back there from time to time.

There's a parents part of the forum here which you could post in with more questions and also there's a section on diet which you can post in for more specific dietary questions. There are some parents there and some adults who do the SCD diet and other diets.

We're in a pretty good place right now. She is on a biologic med and it has done wonders where nothing else was working. I worry a lot but we kind of put it to the back of our minds so long as she is able to play and do some "normal" stuff. With Crohn's I get the feeling that it's temporary, so we just make the most of the good days. Some people have good years so we're hoping for that!

Thanks for asking, and keep hoping and trying - something will help along the way.