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!

Metabolic Clinic Appointment

As promised, here is our metabolic clinic update from Thursday's visit.  LB is doing great!  Developmentally, he is right on target and he's staying on his growth curve, which has consistently been between 15th to 20th percentile for weight and around 60th percentile for height.  He delighted the doctors and genetic counselors as he played with his toys, rolled a ball and talked up a storm to them.  He really is doing great.

A few things that we talked about with the doctor:

• We always seem to feel like LB is smaller than he should be and we've kind of been attributing that to the MCADD.  After you have a kid like our older son who has never been below 95th percentile for anything, you wonder how you can have such a little guy as his brother.  They assure us that LB being 20th percentile for weight is just LB.  It has nothing to do with his metabolic condition.  I guess when I think about it, he is a completely different kid in so many ways from his big brother (personality, temperament, timing of milestones, etc.), so it's not that hard to fathom that this is just another way that he's being his own person.  They also said that it's good that he's staying on his growth curve because they often have trouble with obesity in kids with MCADD.  Parents are understandably terrified to let their kids fast and tend to overfeed them, which can lead to unnecessary weight gain.  So far, we are doing great with LB, though. 
• We brought up our table manners issues (how he throws a lot of food at meals and we just give the plate right back to him to throw more) and we got some very good advice from the metabolic physician.  She told us that just because he has MCADD doesn't mean he has to eat more food than his stomach can hold.  If he's throwing food, he's probably not hungry and it's ok to take the plate away and excuse him from the table.  She stressed that we should discipline him in the same way we did our older son (when our older son threw food at this stage of development, we took his plate away and ended his meal -- the throwing stopped within weeks whereas the throwing with LB has been going on FOREVER it seems).  She also gave us some sage advice to not let food be a trigger for our family on any front.  We are going to have times that we absolutely need LB to eat to keep his metabolism out of trouble and if we use up all of our food capital on this kind of stuff, it's going to be a harder road to convince him to eat when he really really needs to.
• They previewed that in future appointments when LB is able to speak for himself that the physicians will be interacting more directly with him while we are more in the background.  They have a philosophy of empowering the children in their clinic to be able to speak for themselves about their health and how they're feeling and it will give him practice to role play this while in the clinic.  This makes me feel very good about the care that he's receiving here.  I know that there will be a lot of times that my husband or I won't be with him in his future (going to school, going to sports practices, even just playing at a friend's house) and he needs to be able to go talk to a teacher, a coach, an adult and tell them if he's having a problem, if he needs to eat/drink something and what he needs to eat/drink in order to feel better.  The sooner he gets to start practicing that, the better. 

They also checked his carnitine levels with some lab work and we'll get those results in a few days.  We keep carnitine in the cupboard for when he's ill, but his labs have never shown carnitine deficiency, so we don't need to give it to him on a regular basis.  They said they typically don't see low carnitine in kids this young, but that eventually, he may need to be supplemented and they always check, just in case.

We also talked briefly about the impending discontinuance of polycose.  Abbott labs announced that they will no longer be making polycose, so we will have to switch LB to something else for his sick-day sugar-beverage protocol.  The physicians assured us that there are a lot of substitute products on the market and that they will be making a recommendation on one once the polycose supply is gone.  They also said that as he gets older, he can get away with drinking Gatorade or he can add sugar to any number of beverages and he won't necessarily need a prescription sugar solution.

We go back to see them in 6 months and we'll continue to see them twice a year until he gets to be school-aged, at which time going annually will likely be sufficient.

Meal Stress

I have a confession to make...my MCADD kid has terrible table manners!  I blame myself.  Really, it's all my fault.  When my older (non-affected) son was this age and he would start throwing food off his plate or dropping his plate on the floor, I would just take it away.  If he's playing with his food, he must not be hungry enough to eat it.  Wipe off the child and set him loose to play.  Issue closed.  Food throwing situation solved in relatively short order.

With LB, I haven't been able to do that.  Even if he's throwing his food or throwing his plate, cup, fork, etc., I haven't been simply wiping him up and setting him loose.  I've been attempting to have him continue his meal because after all, he needs to eat, right?  So, meal after meal, we are enduring chunks of food flying past our heads and utensils landing on our plates and oodles and oodles of food wasted on the dog (who may very well need to be put on a diet soon). 

For the longest time, we tried to ignore it thinking no reaction from us would make him think food throwing wasn't much fun.  Or we would take his plate away for a minute, remind him that we don't throw our food and then give it back to him only to have him go right back to throwing.  Needless to say, mealtimes have gotten very stressful.  It's a dangerous spiral -- he throws food because he isn't hungry, we want him to eat any morsel of food possible so we let him continue to throw food and then we get stressed that he's not eating the food, he's only throwing the food and we stack more food onto his plate in an attempt to get him to eat something, anything and he just keeps throwing food anyway.   

Thankfully, if he doesn't eat a good dinner, we always have the bedtime snack to fall back on, but even then it's a matter of chasing him down and popping graham crackers in his mouth anytime he slips out of perpetual motion. He's constantly busy zooming through the house and really can't stop and be bothered to sit down and concentrate on eating.

We know that he's healthy and developing appropriately, so he must be getting plenty of calories, but this mealtime madness thing is really getting hard (and rather embarrassing when we eat in places other than our own home). Does anyone have any good tips for getting through it?  We are all ears!