News from the fragile x front….

News from the fragile x front….


We just got this letter in the mail a few minutes ago. It’s from the Cleveland Clinic. It is the results from Gavin’s genetic work up.

Apparently, everything has come back normal (as seen in the picture). While it’s good news it’s also disappointing at the same time. That is because we are back to not knowing what’s going on. If this had come back positive at least we would have something to go on. Now we are left with more questions then answers. Does that make sense?

It would have also shed some light on his bizarre behaviors. We would have had some more insight into his inner workings. Maybe a better understanding of what makes him tick. Now we are back to square one. At least we can ckeck this stuff off the list…

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Rob, I don't know exactly what you are going through and facing on a regular basis, but it is so painful when you get these "normal" results back. When we took our son in for sedated MRI's and EEG's, scans, tests, etc. and everything came back normal I wasn't relieved. I wanted something to be wrong so we could fix whatever was happening through medication or surgery; a silver bullet. I really feel for you and your family.

I am definitely going to look into autoimmune disorders, RMM. Thank you.


Dear Rob,
Have you ever thought that there is an immune system deficiency your wife and children have in common? Many moms of autistic kids also have autoimmune disorders (like myself). During pregnancy we pass on antibodies to them. and maybe if you view it as an immune system dysfunction it makes sense, especially in Gavin's case (the brain has it's own immune system). Maybe if we focus on rebuilding their immune systems (alongside therapies) we can help reduce their symptoms.My boy has autism and building his immune system has helped alot. I noticed when Gavin first started the IVIG he seemed to be doing a bit better.
I applaud your wife for all she does, while battling fibromyalgia. Being chronically ill and taking care of autistic kids is so hard and she is such a trooper and a hero.

Would love your thoughts, please comment.x
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