MCADD Children's Book!

Yes, you read that correctly!  There is now a children's book about MCADD available on Amazon!! - Max the Monkey Has MCADD!

Nearly a year ago, we were very stressed out and struggling to get our two-year old with MCADD to eat much of anything. Every meal was a challenge,.  Nearly all of our plates were hurled off our dining room table and broken - it was just awful! It went beyond simple two-year-old pickiness for us because we knew how important regular meals were to managing our son's MCADD. I tried reading lots of children's books I found at the library about why our bodies need good food, but was really longing for something that started a conversation with him about why his body is special and REALLY needs food. I approached Laurie Bernstein and Joanna Helm (just two of the many amazing staff members in the metabolic clinic at Children's Hospital Colorado) about writing a children's book about MCADD to help my family and others like us. They loved the idea and last spring/summer, we wrote Max the Monkey has MCADD.

We started reading the book (an early draft printed out at home and stapled together) with our son last summer just after he had turned three and it instantly made a difference. He now has words that help him understand MCADD on his level and he seems to have a much better understanding of why he needs to eat often in order to have enough energy, just like Max does in the book. Our five-year old son (unaffected) has also really benefited from the book. We no longer have the argument at bedtime about why his little brother gets a snack and he doesn't. He knows that his brother needs it because he has MCADD. Now he helps us make his brother's snack and encourages him to eat right along with my husband and me!

Fast forward to today and we have completed the publication process! Now any family can buy a book that explains MCADD in kid-friendly terms, written in engaging verse and accompanied by beautiful illustrations and yummy recipes. It can be delivered to your door in as little as one day and hopefully you can be spared the months of mealtime stress we had when we were struggling to explain a wildly complicated condition to our toddler. Words cannot express how exciting this is to me and how proud I am to have been part of this!

Thank you to Laurie, Joanna, Children's Colorado and The Gene Team who supported this project (The Gene Team bikes hundreds of miles through the Rocky Mountains every summer to raise money to support projects that help the families in the Genetics and Inherited Metabolic Diseases Clinic at Children's Hospital Colorado and beyond). The book is beautiful in so many ways and would not have been possible without you!

Please consider ordering one for your family and maybe even order an extra copy to take along to your next metabolic appointment that can be passed on to a family just receiving an MCADD diagnosis with their infant. How cool would that be if every new MCADD baby got to bring home a book!

TIP - Medical Alert Bracelet

LB's metabolic physicians have recommended that he wear a medic alert bracelet nearly since his diagnosis (at 3 days old when a car seat sticker is about as good as you can do in the medic alert department), but we honestly had trouble finding something that was appropriate for a little kid for a very long time.  Always wanting to be prepared for a situation where others need to be aware of LB's medical condition and when we may not be able to speak on his behalf, we kept looking and ended up settling on something that I have used for a long time as a marathon runner and triathlete (don't be too impressed, I haven't done much training in ages, but it was a fun hobby pre-kids)  -- Road ID!  Although they are made primarily for athletes, the selection and sizing has been great for our purposes, too.

There are a couple options that work well for little kids and there are a lot of options for older kids and adults:

Option 1 - A Shoe ID - you just Velcro it onto their shoe and you don't have to worry about it irritating their wrist or being much of a distraction to them.  Hopefully they manage to keep their shoes on, but not a bad option for a toddler all things considered.

Option 2 - A Wrist ID Slim - it's made out of silicone and resembles the bracelets that a lot of people wear for fun, but it is available in sizes as small as 5" to fit the wrist of a toddler.

The laser-engraved tags can be modular with different items and larger sizes of bracelets as your child grows.  You can also order just the tag and not the whole bracelet/shoe clip/etc. for times when your emergency contact information might need to be tweaked, but the bracelet/shoe clip/etc. is still in fine shape.  I actually still have my original shoe ID Velcro bit even though I have ordered at least 3 new tags as I've moved from place to place.

The metabolic clinic suggested that the bracelet read - "Metabolic Disorder, MCADD, Needs Glucose, Metabolic Dr. On-Call ###-###-####" and we got the color red to make sure it was very visible.

The best news of all?  They are having a HUGE SALE THIS WEEK!  If you're wanting to check this important item off your to-do list, there's no time like today!

TIP - Car Seat Sticker and Emergency Preparedness

Do you have one of these on your child's car seat??

If not, you really should!  Stickers are available at most hospitals and fire stations.  You should be sure to update them as information changes (new emergency contact info, etc.) and as children change between car seats (i.e. LB is now using the car seat that his older brother outgrew so I had to change the info on the sticker to reflect his information and not that of his big brother).

At our most recent metabolic clinic appointment, they gave us some new carseat stickers since he has recently moved from the baby bucket seat to a regular (albeit still rear-facing) car seat.  I was curious about whether first responders are trained to look for these little stickers, so I called up our local fire department to ask about them.  They confirmed that in a severe accident, it is standard procedure to extract children from vehicles using the car seat to stabilize them (meaning a bright flourescent green sticker would be easily visible to a first responder).  In incidents where parents are unable to speak for their children, it is also standard procedure to look for a car seat sticker that will provide them with information on the child.

In addition to the car seat sticker, we also carry a red emergency envelope in the glove compartment of each of our cars containing the most recent copy of LB's emergency room letter and a list of emergency contacts.  This way, when we are rushing to the ER or if we ever have to go to the ER without a chance to go home and pack first, we don't have to fret about finding his emergency letter, it's always in the car!  I noted this on his car seat sticker, too - "check glove box for emergency letter" - just in case it expedites his care before the first responders are able to contact the metabolic clinic on-call physician.

At the appointment, his doctors also urged us to get a medic alert bracelet for LB, so that if we are ever unable to speak for him, those who attend to him will know that he has MCADD and that they should contact his clinic for instructions on how to care for him.  They suggested that the bracelet read - "Metabolic Disorder, MCADD, Needs Glucose, Call Metabolic Physician On-Call ###-###-####". 

So far, no luck on finding a medic alert item that would be appropriate for a one-year-old, but I'm still looking.  Once he gets older, there are lots of medic alert jewelry options (braceletes, anklets, necklaces, etc.), but if anyone has anything that they have used for little ones, I'm excited to hear about them.  Feel free to comment with your findings!