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Lainey is our fourth and final addition to our family. My husband and I are creeping up on our 15th anniversary together this March. (Yes, I got married young and started having kids young but we knew we wanted a lot of kids and I had some fertility issues - anyway, another story for another time)
My 5 year old has viral induced asthma but other than that, they have all been a picture of health their entire lives. How shocked we were to get the phone call six days after Lainey's birth alerting us to this mysterious metabolic disorder that the doctor three times told me was "life threatening" I ended up in tears on that call and had to pass the phone off to my husband.
That first week was filled with reading everything we could get our eyes onto regarding MCAD and lots and lots of tears on my behalf. It was just so overwhelming this fear that at any point she would need to be rushed to the hospital and put on an IV to save her life. Take too long and risk coma or death. I honestly don't think I slept the first two weeks.
At some point I was able to center myself - I think it was when I started hearing about how so many other parents had lost their beautiful children to MCAD but not because they didn't get to the hospital in time, BECAUSE THEY DIDN'T KNOW THEIR CHILD HAD IT.
Our metabolic specialist has told us that he has never lost a patient from MCAD that was diagnosed with it prior to the death. Key in managing the condition is knowing that a child is afflicted with it and watching for the signs of distress.
If you are reading this and you have a newborn diagnosed with MCAD, read the above paragraph again. And again. Once you know about the disorder, you can manage it and your baby will be fine.
These are two items that have proven invaluable to me since my daughter's diagnosis with MCAD.
First is my new Timex watch that not only has three alarms on it (to time her medication) but also has a resettable countdown timer. Right now she has to eat every 3.5 hours so all I have to do is hit one button and it starts to countdown from 3 hours, 30 minutes. At any point she eats before then, I just hit stop then reset and it reverts back to the preset 3 hour 30 minute mark. Its not the most fashionable of watches, but it does everything I need it to, its waterproof and the alarm on it isn't overly loud. The one I have is pink but it comes in about 10 colors, including grey and black so you should be able to find at least one color you like. The official name of it is Timex Women's Ironman Triathlon Sleek 50/100 Watch #T5D601 is the model number for the pink one. I bought mine from Amazon for $33 and it qualifies for the super saver free shipping.
Second is this great medication dispenser. (Note: My baby daughter is on Carnitor, 
not all babies with MCAD are given this medication) She has to take it every 8 hours - this includes a 1:00am dosage/feeding so it made the most sense to us to purchase three of these.
We keep two filled at all times and the third is kept in rotation during the cleaning and drying. The best feature of it is that it comes with a cap/lid so if I have to bring it with me on the go, its contained and it doesn't spill. My local grocery store carries these in stock but I also found them at Amazon online. The official name is Oral Medication Syringe by Apothecary Products, Inc.
Hello and welcome! If you have come to this blog because you are looking for more information on MCAD and infants diagnosed with it - please do check back soon as I will be putting up links to sites I have found helpful as well as things I have learned through firsthand experience with my own baby girl.
My baby daughter was diagnosed with MCAD on November 4th, 2006. She turned 6 weeks old yesterday and has been a medication called Carnitor since she was a week old.
The past two days she has had an elevated temperature but is still eating well so we are all hoping and praying that she continues to eat well because no one wants this tiny girl to have to go to a hospital so early in her life.
The above reason is why I probably wont be around much this week to give this blog the attention I would like to. Please feel free to email me if you yourself are a parent of a child with MCAD, I would love to talk with you.
Lainey is our fourth and final addition to our family. My husband and I are creeping up on our 15th anniversary together this March. (Yes, I got married young and started having kids young but we knew we wanted a lot of kids and I had some fertility issues - anyway, another story for another time)
