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carly1979 carly1979

New Diagnosis

I am the mother of a newly diagnosed ME sufferer.  My son has had ongoing health issues dating back over 10 years, and yesterday we finally got a diagnosis.  Not only does he have ME he also has Gilberts Syndrome.  It has shocked me that the signs were there, the tests were ongoing but it was failed to be picked up.  I feel like I have failed him as a mother.  In 2014 unbeknown to me he contracted Glandular Fever, which again went undetected but, it was appear that this was the trigger for the ME to surface.  The last 4 years have been the most important for him, with GCSE's that were subsequently failed despite being predicted A's & A*, I now think had I of known about the illness it could have been managed but, feel it's now too late.  Moving forward we have been referred to a Psychologist in the hope that they can help him deal with it.  I feel lost, I feel like I failed him as a parent.  Does anyone else have any experience of this and how have you coped.  Every day is an effort for him, he's constantly tired and concentration is poor!  

5 Replies

  • sueliz57 sueliz57 carly1979

    Hi Carly,

    Don't be so hard on yourself, it's not the end of the world that he didn't get his expected grades, he can always take a few at a time in the future when he is able. It's important to focus on what he can do and not on what he can't. Having this illness makes you change, adapt and postpone. I had the opposite problem to you: my first daughter was only 4 months old when I developed ME/CFS and I always felt my girls had lost out all those times I couldn't take them to the park or swimming etc etc. But they don't see it that way, they felt loved, happy and secure. We can only do what we can when we can.

    I hope because he is young he will rest and recover.

    Good luck

    Liz

  • jackie00198 jackie00198 carly1979

    I had never heard of Gilbert's syndrome until I read your post. Apparently, it's a genetic disorder, and there is no treatment. This is from the Mayo Clinic website, which is extremely reputable. So even if you had detected this condition sooner, there would have been nothing you could have done to help. As for the ME/CFS--this illness often takes years to diagnose. It sounds like the glandular fever your son got in 2014 triggered it, which is often the pathway into this illness. Your son can get better, as he's "only" had ME/CFS for a few years, and I presume he's pretty young. The key is that he get plenty of rest and not push beyond his energy envelope, as this can result in a crash. There's some important research now being done on this illness--especially at Stanford University in California--and drugs for treatment may soon be on the way. You are not at fault here! I'm sure that as a parent, you're doing the best you can.  

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