Friday, 6 January 2012

Possible Medication.....

I've been watching posts on the Australian and US FXS Facebook pages and something interesting came up on the US one yesterday:

They've been trialing some medications and have seen some really encouraging results.  They are now running more extensive trials:
MIND and MINOCYCLINE: The UC Davis MIND Institute is conducting a clinical trial in patients aged 3.5-16 years with Fragile X Syndrome (FXS). It is a controlled trial of minocycline, an antibiotic commonly used in children for infection or for treatment of neurodegenerative disorders. Recent studies have shown that minocycline improved brain connections and learning tasks in Fragile X mice, when given after birth for one month. Also, a preliminary survey of more than 50 individuals with FXS, treated with this medication for an average of 3 months, has demonstrated improvements in language, attention and behavior in some. From this study, they hypothesize that minocycline will be helpful for language, behavior and/or cognition in patients with FXS. The aim of the trial is to assess behavior, perceptual and cognitive development in patients treated with minocycline or placebo, as well as the side effects of minocycline treatment.

Got my heart racing reading about it.  The mum in question made a comment on Facebook to say her little girl has had no side effects at all and it's really helped her development.  I'm going to write a letter to Dr Randi Hagerman who is running the trials to find out if Aussie kids can get involved.

I wrote a comment on my Facebook page a few days ago: "Thinking too much about what my boy would be like if he had all the FMR1 he needs. Not a good rabbit hole to go down.".  As always my wonderful friends responded with comments of support and some expressed a feeling that our FXS kids are perfect the way they are.  While that is a beautiful sentiment and a very Zen perspective I'm not sure I'm at the point I can accept that.  Right now I'm in mummy fight mode, I'm fighting for every little thing I can do to make sure Connor can reach the best potential he can.  Not only is he doing Speech and OT Therapy, he's in a special Playgroup and we've started to implement things at home like PECS.  I've also been told about alternative treatments like Neurofeedback that we can try when he's a bit older.  While I would never want him to feel like a lab rat, I also want to be providing the right stimulus to him so his brain can work around this disability as much as possible.  Perhaps these medications could be another piece of the puzzle to help with all of that.

I don't know, but I'm not going to give up.  I love him with all my heart and he's a beautiful affectionate angel, but I also see how he struggles to communicate, his nightmares at night, his trouble sleeping and his problems connecting with other kids, and he's only 2.5!  I want to make things better for him and I think, as his mum, that's my job.

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