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 - How MCADD Parents Can Better Work With Their Primary Care Physician

I read this interview with Dr. Beaudet from Baylor College of Medicine and was thrilled to see his comment about how well-educated the parents of children with rare disorders can be about their children's condition.  He also gives some good advice on how you can use that knowledge to work WITH your primary care physician.

It's definitely important to note that the physicians who study rare conditions like MCADD are fairly rare themselves.  Therefore, when a primary care physician caring for a child with a rare condition calls that specialist to ask a question, they are usually more than happy to have a conversation.  We should all use this advice to our advantage.

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! 

TIP - Hearty and Healthy Snacks for Bedtime or Anytime

As I mentioned, we got an excellent list of snacks from our metabolic clinic at LB’s last appointment.  These snacks were recommended by a dietician as a healthy way to keep filling and nutritious food in the system of someone with a metabolic disorder like MCADD.  As always, you should check with your doctors before feeding anything new to your little one…and you should only feed age-appropriate items.

A snack can be thought of as a little meal, rather than a treat.  Healthy, balanced snacks should include a source of protein and a source of carbohydrate. 

Example Proteins (can be fat free or low fat):

• ¼ cup cottage cheese
• 1 oz cheese
• 4 oz low sugar/carbohydrate yogurt
• 4 oz milk
• 4 oz infant formula
• ¼ cup beans
• ¼ cup hummus
• 1 slice lunch meat
• 4 oz pudding (made with milk)
• ½ egg or 1 egg white
• 1 oz tofu
• 1 Tablespoon peanut butter
• ¼ cup nuts (non-sweetened, not honey roasted)

Example Carbohydrates:

• 1/3 – ½ cup unsweetened cereal
• ½ - 1 mini bagel
• ½ banana
• 1/3 cup oatmeal
• 1/3 cup porridge
• 3-5 whole wheat crackers
• 2-3 rye crisps
• ½ whole wheat pita bread
• 1 slice whole grain bread
• 2 graham cracker squares (not sugar or cinnamon)

 
Put it all together and you get some great snack ideas, especially for the much-needed bedtime snack:

• Unsweetened cereal (like Cheerios) and milk
• Unsweetened cereal and yogurt
• Graham crackers and milk
• Whole wheat crackers and cheese
• 3 graham cracker squares with 1 tablespoon peanut butter
• 1-2 slices low fat cheese and/or lunchmeat and 4-5 crackers
• ½ sandwich (1 slice whole wheat bread with 2 tablespoons peanut butter or 1 slice deli meat and 1 slice cheese)
• ½ English muffin with light cream cheese or peanut butter
• Mini bagel with light cream cheese or peanut butter
• Pizza bagel or pizza English muffin (1 tablespoon of tomato or pizza sauce and 1 oz low fat mozzarella cheese on half a bagel or English muffin, warmed or toasted)
• Celery sticks and 2 tablespoons peanut butter
• ¼ cup cottage cheese plus ½ cup pineapple or 2 pear halves or 2 peach halves
• ½ small banana with 1 tablespoon peanut butter
• Granola bar that contains fiber and protein

Happy snacking kiddos!

TIP - Packing Your Hospital Bag

I have learned a thing or two about what to bring with me when we are sent to the ER, which has ultimately turned into a hospital admission 3 out of 3 times for us.  Obviously, if it is a dire emergency, don't spend time meticulously packing a bag -- just get yourself to the hospital!!  However, if you have time to throw a few things in a bag or have a friend meet you at the hospital with a bag, here are some tips on what to bring based on our experience:

REMEMBER TO BRING:

• A Couple Changes of Clothing for Your Baby:  Hanging out for a few hours or a few days in clothes that are soiled by the various bodily fluids that spew from a sick child can be pretty gross.
• A Couple Different Styles of Clothing for Your Baby: Depending on where they put the IV, it may be better to have short sleeves or long sleeves, short pants or long pants, onesies or t-shirts.  I've also found that it is not desirable to have the baby dressed in footie pants/jammies since they often need access to toes for pulse oximetry meters.  Best to have feet baby's free and bring warm socks.
• Bibs:  You can usually always get a box of Cheerios or a container of applesauce along with spoons, napkins, etc.  You aren't usually offered a bib.  Seeing as how your access to clothing is at a premium, it's best to protect the clothes you brought from meal messes.  I have managed to fashion a bib out of a hand towel that was in our room, but bibs are easier.  Throw one or two in your bag.
• A Change of Clothes for Yourself:  Let's face it, the vomit is always going to land on you, the diapers are always going to explode on you and the sticky food-stained fingers are always going to be pulling at your shirtsleeve.  You will feel grimy enough after a day or two without a shower.  At least you can have some clean clothes on hand.
• A Toiletry Bag for Yourself:  Pack a toothbrush, toothpaste, contact lens accoutrements, glasses, hand lotion, whatever you need to stay comfortable and at least mildly presentable for a couple days.  I'd also recommend packing some Tylenol/Advil or whatever your preferred over-the-counter pain reliever is.  There are lots of uncomfortable chairs and lots of stress to deal with and headaches can come with the territory.
• Cell Phone & Charger:  The battery will run low with all the updates flying around between family and friends on your little one's condition.  Be sure to bring a charger so that you aren't disconnected from your support system because your phone is dead.
• Easy to Clean Toys, Books and Distractions for Baby:  Even though he was sick, he was still a busy baby the whole time we were hospitalized.  Having a stash of distractions can be critical to keeping your kid from pulling out an IV for lack of anything else to play with.  I brought only toys and board books that were easy to clean/sanitize later so that I didn't worry about bringing any hospital germs home with us.  If your child has comfort objects like pacifiers or soothers, bring those along, too.  For older kids, all of the hospital rooms that we've been in (and even some of the ER cubicles) have had TVs and DVD players, so toss in a favorite movie, too.
• Distractions for You:  I spent a lot of time quietly holding LB while he napped and, since I'm not much of a TV person, I was glad that I brought along my eReader (and charger!) so that I could read, do email, browse the web, etc. during quiet times.
• Medications for You and Your Baby:  Some hospitals don't have specialized MCADD things like polycose and carnitine on hand readily.  If your kid takes it regularly or is being supplemented by it due to illness, bring it along.  Same goes for your medications.  If you have allergies and you spend two days without your allergy meds, you're going to start getting pretty miserable during a time that you need to be at your best.

Things you probably don't have to bring (or bring in large supply):

• Formula:  Once you're admitted to a room, formula is usually the first thing they bring to you.  They have most of the popular brands (Enfamil, Similac, Gerber) and most variations (regular, soy, gentle, etc.). Bring enough for the ER, but after that, you'll be covered.
• Diapers/Wipes:  Ditto here.  Once you're admitted to a room, the nurses will bring you whatever size diapers you need along with wipes.  Bring enough for the ER, but the pediatric floors of the hospital will have you covered.
• Food/Snacks:  The ER can bring your baby Cheerios/Crackers/etc.  Once admitted to the floor, unless your child has diet restrictions, you can usually order anything you want off the food service menu for him/her.  For kiddos not on finger-foods yet, pediatric floors have jars of baby food at the ready, too.  In terms of food for yourself, parents can usually order guest trays (at a cost) from the food service menu during their posted hours.  There are also vending machines and sometimes even pre-made food available from the nurses that you can access after hours, if necessary.  Bringing a snack for yourself probably isn't a bad idea, but it's certainly not a necessity.
• Blankets:  Someone will always bring you a blanket if you or your baby are cold.  That said, it doesn't hurt to dress both yourself and your baby in layers so that you can shed/add clothing as conditions dictate.

What is your experience with hospitalizations?  What would you add to the list or delete?

Polycose Potion

It was a little more difficult to fill out prescription for Polycose than we anticipated.  Our pharmacy called us and said that they couldn't even order it.  We called the metabolic clinic at Children's hosptial and asked them if they could help.  Sure enough, the pharmacy on site at the Children's Hospital is a Walgreen's and our local pharmacy is also a Walgreen's.  Their pharmacy had it in stock, so they put their pharmacy in touch with ours and voila!  This lovely can of powder is now hanging out in our pantry.

Funny.  The first time they said "Polycose," I kept thinking about Harry Potter and his Polyjuice Potion.