Hiya All,
I am devastated. My twins - 4 year old girls have been diagnosed with LCHAD.
It is an enzyme problem, we are currently under St. Thomas's.
It doesn't have a good mortality rate... some medical papers state a large percentage of kids do not survive within 3 months after diagnosis!!
When the kids are sick, their bodies cannot sustain them, in complex sugars and they end up hypoglycemic....which is what happened with our little bunnies...
3 weeks ago, one of my daughters was on the verge of a coma, due to this condition.
I had 15 days of hell, one on them in ITU, and the other admitted 5 days after her sister. The doctors did not understand what was going on, but intensive tests on their blood has show LCHAD to be the problem.
We have been given an emergency feeding regime. If either of them fall sick with anything, the includes flu or such like, we have to implement this feeding regime and feed them every 2 hours day and night, until the illness passes..
I am trying hard to not blame myself, as this is a genetic disorder. Both my husband and myself carry the defective gene.
Constant espisodes can caused damage, like ADHD, Speach/movement difficulties... and last but not least Cerebal Palsy...Oh did I mention the sight problems in later life???!!
Has anyone out there got a child or multiples with this rare condition????
Seeking positive outlooks.....
Nic
x
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My world has ended - twins diagnosed with LCHAD...
twinsnikki · 01/05/2008 16:27
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