I am looking for anyone who has a child with MCAD. Our daughter was diagnosed as being a carrier, but the test results unfortunately did not show enough info to determine if she actually has the disorder. They tell us now we can either do a skin biopsy or just wait until she gets sick, then we would know for sure. I hate not knowing for sure if my child does or does not have a disorder that can be very serious if not treated. I hate that the only way I can know for sure is to put her through the pain of a biopsy or just wait until she gets sick! That scares me! So if anyone out there is familiar with MCAD can you please tell me your experience with your child living with this disease. The internet does not have a lot of info to offer, so any websites you know please share! Thank you!
Dallas' Mama
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MCAD
- By dallasmama
- Posted January 11, 2009 at 10:56 am · 5 replies
- In Genetic conditions
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- By oaanews
- Posted February 19, 2009 at 2:48 pm
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Have you checked out www.fodsupport.org? They have a Google Group you can join and have many families that have children with MCAD.
Kathy Stagni
- By marywynn
- Posted April 14, 2009 at 6:06 pm
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My daughter was born January 22, 2009 and was diagnosed with MCAD about 2 weeks later. She is a patient at the genetic clinci in our city. She has to be fed every three hours round the clock. She takes 1 ml. of L-Carnitine 2x a day to regulate her blood suger. So far she has never been sick enough to go to the hospital. We have never taken her out in public (mall, grocery store, etc.) because our doctor told us that she needs to stay out of public places for the first year or two of her life. So far it has worked. It is not easy. And we pray for her healing everyday. We do not know what it will be like when she gets sick. And we know that first trip to the hospital will be very scary.
- By dallasmama
- Posted April 15, 2009 at 12:06 am
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Mary, I was also very worried about my daughter getting sick. Dallas is for sure a "carrier" of MCAD, but they are not 100% sure that she actually has it. She will have a skin biopsy done in June when she has her G tube placed. She too is on carnatine 4xday and eats more frequently than a normal baby her age. The docs tell us not to worry about the MCAD too much. That once you know your child has this disorder it is very managable. Of course you do have to be careful with an illness, as it can break down their immune system very quickly. I did want to share with you that 2 weeks ago Dallas had her first ''double'' ear infection and cold. I was terrified at first and kept waiting for her to get worse. However, after one day of breathing treatments and first round of antibiotics, she was fine. Her temp never got up very high and she was able to come through just fine. Only one check up to the Ped and she gave her the all clear! Never had to go to the hospital, just a quick visit to her reg doc. I guess you never know and sometimes I don't think we give these little ones enough credit for their strength. God Bless! Dallas' Mom
- By marywynn
- Posted April 15, 2009 at 8:34 pm
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Thank you for your encouragement. Marley had a cold two weeks ago and we were able to stay out of the ER too. We will pray for Dallas as she has her skin biopsy that the results will be good. Let us know!
- By Jsmum
- Posted October 18, 2009 at 6:57 pm
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My son has MCAD. He was diagnosed at birth by heel prick (guthrie) test. Is there no way you can tell that way? He also had a DNA analysis done to find out what type of MCAD he had (he has a common strain).
We have been in and out of hospital a lot this year, he is small for his age although active enough. He eats far more then a normal baby and a lot more regularly. He still struggles to go for longer then 10 hrs through the night without becoming poorly. He is currently 15 months old.
It doesn't help he also gets a skin infection (staph?) regularly partly probably due to his MCAD and also seems to have excema.
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