My youngest daughter was diagnosed with MCAD 2 weeks after being born in the spring of 2004. She was a healthy, full term baby and was diagnosed through Virginia’s New Born Screening. As any new mother I freaked! What was MCAD?
After a lot of research and finding not a lot, I was contacted by FOD (Fatty Oxidation Disorders). This group was a pillar of strength and knowledge. You can check out their site at www.fodsupport.org.
Okay, so what is MCAD, well for starters the full name of this disorder is Medium Chain acyl CoA Dehydrogenase. MCAD is a genetic disorder that is inherited from both parents. Basically it means that the body is missing the enzyme to breakdown fats to make energy. So this means that people with MCAD can’t break down fat for energy.
What does this mean for an infant diagnosed with MCAD, feeding around the clock! Now depending on where you live and who your Specialist is will depend on how frequent these feeding’s are. We lived on the East Coast and our regime was quite strict; every 2 hours, then 3, then 4, and so on. When our Daughter reached the age of 2 I was given the okay to allow her to go through the night with no feeding. But unaware to the medical field her body had adapted to being fed frequently and it was just not a case of okay now let’s sleep through the night.
Now, don’t think I am snubbing the feeding schedule we were put on. But, I do think that the schedule was a little rigid. If you’re a new mother and your child is diagnosed with MCAD, don’t freak out if you are a little late on these feeding’s. The only time I would say is to be more diligent is if your little one is sick. If your little one is sick he/she is going to burn more energy just to get better, so frequent feeding is important.
Another part of the treatment for MCAD is been given a medicine called L- Carnitine. Again, depending on where you live and who your specialist is will depend on the dosage. I followed Doctors orders and gave the required dosage to my daughter. At around the age of 2 due to unforeseen circumstances I had no L-Carnitine so I was unable to give her the daily dosages. We had an appointment to check her carnitine levels. When the tests came back, they were high. The results suggested that her body was producing the enzyme. Because of the results her dosage has been cut due to the Doctor not being sure what would happen if she received none! I was told that she needed the L-Carnitine for her body to carry excess waste out of the body’s cells and into the urine. Which I know is a fact but what if her body is producing enough does she really need it supplemented? I don’t know.
My daughter will be 3 years old soon. I have been told out of all the “MCAD Babies” that go to our clinic she is thriving the most. I have been asked why is that and I think it is to do with my attitude. She is not treated any different from her other sibling. We do not stop life because of her disorder. We watch her diet, and try to keep it as low fat as possible. We keep her away from people we know are sick, and during flu season we wash our hands more. We have traveled overseas, we have camped in the mountains, we continue to live a normal live. Some extra precautions sometimes but overall we carry on the same.
If your child is diagnosed with MCAD, don’t freak out. It is a completely manageable disorder and it gets easier to manage, as they get older. The key to MCAD is being aware that you have it. So if a diagnosis says MCAD, a child life has already been saved!
For medical details on the disorder check out http://www.fodsupport.org/mcad_fam.htm