Sunday, July 17, 2011

VLCADD, the heat, & Klaw

I have been very nervous about exposing Klaw to too much heat, thanks to his VLCAD deficiency (very long-chain acyl-COA dehydrogenase defiency).  Any situation that causes his metabolism to crank up can potentially be dangerous.   Since the VLCAD deficiency prevents his body from metabolizing very long-chain fats into energy, it's extra important to make sure he remains hydrated and has enough carbohydrates and proteins in his system to burn for energy.

To facilitate keeping him cool in the hot summer south, we have annual memberships at both the Children's Museum of Virginia (Portsmouth) and the Virginia Living Museum (Newport News).  Both are great spots for kids and families and provide ample indoor space for Klaw to run.  Both places have lots of buttons to push, too.

I grew up running around on the beach all summer long and it's something I want Klaw to experience, too.  However, I've been fearful to attempt it, especially during the week when it would most likely just be the two of us.  Yes, his health has been good overall.  Even his hospitalizations were not caused by his VLCAD deficiency, even though VLCADD was the reason hospitalization was absolutely required.

It's still scary.

It's scary to have to always worry that your child might get too hot, go into metabolic crisis, and die.  I know that sounds melodramatic but it's what is always in the back of my mind.

However, I can't and I won't live in fear - at least, I won't let him live in fear.  He's a toddler and he needs to have fun.  We just need to prepare for any possibility and continue to stay one step ahead of his VLCADD.

Mom, KriKri (my niece), and I decided to go to Jekyll Island for a beach trip.  I packed a cooler full of water, Gatorade Prime, cut fruit, jarred food, & applesauce.  Yes, I gave Klaw Gatorade.  This particular one is full of glucose, sucrose, & b vitamins.  Although most moms of toddlers would like to avoid that much sugar with their toddlers, it's exactly the high carbohydrate solution that could help prevent a VLCADD related metabolic crisis.

Mom rented an umbrella, which is smart for anyone but it was a really good idea for Klaw so that he could have a shady spot to stay cool and out of the sun.  The water temperature was perfect and, thanks to some haze and a decent breeze, it wasn't too hot.

After he got over the initial 20 minute screamfest driving over there, we had a blast.  Klaw spent time digging in the sand under the umbrella and playing in the water.  I got a good reminder as to why I do not want a pool at my house when he dove face first into the ocean without hesitation. KriKri was a great big cousin and played with him the whole time.

I made sure he had his Gatorade available and that he snacked on some applesauce while we were there.  It was actually really difficult and I felt like he wasn't getting quite enough fluids or food for me to be comfortable.  He ate almost a pint of fresh fruit when we stopped for sandwiches on the way back & finished his Gatorade, so I'm afraid my instincts were right.  I'm not really sure what I can do because he just didn't want to be distracted from fun in order to stop & eat.  I know (hope) this will be easier when he's older and can understand why he has to stop playing and eat or drink.

However, he was no worse for the wear by the time we got home and he was worn out!

Have you ever had to make a toddler eat or drink?  Do you have any tips you can share?  Do any of my more experienced Mito Moms (mitochondrial disorders) have other tips for surviving the heat with our kids' special needs?

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