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Hi all,

 

Just wanted to send a post tonight to say that MCAD is ok - at least we know what we are dealing with and are fortunate enough to have childen in an era when genetic testing is available.

 

9 years ago, my son was 11 days old when I got the "phone call" it was hard to believe that this perfect looking little boy had anything wrong and I was convinced the hospital had made a mistake.....further testing showed that they were accurate and my son did in fact have MCAD.

 

We have had our challenges with Julian over the years and many hospital visits for vomiting, tonsilits and other childhood ailments that would not usually need medical attention in hospital.

It's sometimes hard to explain to a medical professional who has never heard of MCAD that you are NOT a panicking mother but your child has other issues i.e they haven't eaten and need a glucose drip because they can't metabolise the meduim chain fats.

 

I have found that having a letter from your Metabolic Doctor always helps in taking priority in A&E, the triage nurse will not question another Doctor and always let you in first, once there you can tell them that your child needs a 10% glucose drip - in fact demand it other wise they just delay the process with un-necessary temp checks and questionaires, not their fault it's just the proceedure they go through with every sick child that comes in - ours need more urgent attention!

 

Learn all you can about MCAD, talk to your Specialist and educate yourself as sadly most people you will deal with in a crisis situation haven't a clue and you will need to be the educator and try and have your specialist on hand if possible as a phone call from them will often make things move a bit quicker.

 

Positively -  Julian is 9 years old now, a beautiful smart boy who loves life and is not affected by MCAD, but only because I haven't relied on health professionals to make that decision for us, again not their fault it's just not an everyday thing for them.  So take the lead and make sure you know what your child needs - a 10% glucose drip!! everytime.

 

Here's how it is as I understand it..... our bodies are pretty lazy and will use up the sugar in our system first, once that is depleted the body uses up the long chain fats then, after a period of fasting it starts on the Medium chain fats - here's where our MCAD people run into trouble.  They are missing the enzyme to break down the meduim chain fat but the body doesn't realise it, so it keeps repeating the process over and over.  This causes a reaction which is toxin producing and these toxins affect the brain and the liver specifically.  This can be easily switched off by a 10% glucose drip. The body will stop trying to break down the fat and we all breathe out for a while as our child recovers safetly and we can all go home from hospital happy:).

 

We are in a minority of families affected by this disorder, but I belive we are given these beautiful special little people for a reason, they are the leading edge in genetic research but how lucky we are to have this information.

 

God Bless you all

Love, light and Peace

 

XClare.

 

 

 

 

 

 

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