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.