Jack Sprat

September 24, 2009 by Rieshy

Part of the fun of having a rare condition, and an unnamed one at that, is that you have to take responsibility for researching your own medical care.  In Jack's case, his research skills are just not up to paar.  The momma, namely me, has had to take responsibility for his medical care. Why, oh why, didn't I major in Chemistry?  

One of the many things that I learned while reading the FODsupport website is that for many FOD kids, fat intake may need to be restricted.  After Jack's initial crisis and preliminary diagnosis he was started on some medications before he had his first "real" appointment with his geneticist.   I asked about fat restriction during that first appointment, but the geneticist felt Jack looked pretty good with no evidence of the type of damage too much fat can cause in FODs, and he didn't want to change Jack's diet for the time being.  It made sense.  Sort of. 

This Spring, after the addition of a prescription medication of medium chain triglycerides, which is a fat, I became concerned enough to start wondering  just how much fat was in Jack's diet.  At the time I was still journaling all Jack's intakes and blood sugars so it was just a matter of picking a normal week and entering the info on a handy-dandy nutrition website.  I discovered that even with the prescription oil, not only was Jack's normal fat intake fairly low (good momma), but I noticed he actively disliked and avoided most sources of fats.

So along we cruise a few more months.  Since the Spring, Jack's appetite and food repertoire has increased in an upward curve that corresponds with his dramatically improved health .  So much so that in June I stopped journalling his food and I became lazy about his diet (bad momma).  Twice this Summer we ended up with whole milk for a few days.  Whole milk paired with a new love of chocolate chip cookies resulted in a much higher fat intake (really bad momma).  The effect was dramatic. 

Do you remember the ad campaign of a frying egg and the caption; "This is your brain on drugs."?  This is Jack on Fats.  Puffy and listless.  I took this photo of Jack playing because I wanted to be able to show it to the geneticist on our next appointment.    This photo wasn't taken at a low point during the day- this is how Jack was after just a few days of a higher fat diet.   This is a flash back to the Jack we knew pre-crisis and pre-medication, the easy-to-mother, low energy and low key child that the geneticist never met.

I'm tempted to take Jack off all his meds. before his November genetics appointment so the geneticist can see how Jack is without medical intervention, so he won't be tempted to wave our questions and concerns away.  But Greg and I remember Jack's baseline and we won't risk it.  I'll just schlepp a couple of photos with me.   

In the meantime,  I'll keep trying to learn what I need to know to help my boys live healthier lives- and, "Jack Sprat should eat less fat..." 

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Betsy said...

Wow, my head is spinning. For years I have fed my children a diet that is healthy, but rich in good fats due to their poor growth (avocados, raw almonds & cashews, tofu, etc). I asked our geneticist about lowering the fat content now that it seems we may be dealing with an FOD instead of mito. He doesn't seem to think it is important at this point, but I have been considering changing it anyway. Your post makes me more concerned about their fat intake. I am going to visit the nutrition site and try logging in their fat levels for a week. I have a feeling it will be high for a possible FOD. I often times end up with children who resemble your picture of Jack. Ugh! I have some work to do.

BTW, I constantly lament not going to medical school or nursing school. It is not always easy for me to wrap my brain around all of the things that I read.

Rieshy said...

I'd be interested in hearing what you find/figure out.

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