The Summerfords: ACH Appointment

Thursday, April 7, 2011

ACH Appointment

Owen had a follow up appointment with his geneticist and nutritionist at Arkansas Children's Hospital yesterday. The appointment was at 12:00 so headed out around 8:00. The trip down was pretty uneventful...Owen was content with eating breakfast and watching Toy Story!

We always plan Owen's appointments around eating at Holly's Country Cooking in Conway. It's the best "home cookin" but they're only open for lunch on the weekdays, so Owen's appointments are the only time we ever get a chance to stop in. The hash brown casserole is our absolute favorite!! We keep thinking that sometime in the near future...Owen will put his foot down and end our eating at Holly's. There is nothing on the menu (other than the roll) that is low fat. We always plan ahead for Owen...like this time we brought him a Lunchable (which he enjoyed)...but I know there's going to come a time when a "lunchable" isn't going to cut! But until then, we'll continue to enjoy Holly's!

Josh's plate....

Owen's plate...

My plate....

After Holly's, we headed to the appointment completely stuffed. The Doctors probably think something is wrong with Josh and I because we always arrive miserable full! Ha!

So here's the recap on Owen: He continues to be followed by a geneticist and nutritionist at ACH to manage his VLCAD. VLCAD is a rare metabolic disorder that inhibits Owen's body from processing long-chain fats (the fat that's in everything we eat). Owen is still the only child in Arkansas to be diagnosed with VLCAD, but our doctors are working with Dr. Vockley and his nutritionist (the gurus on VLCAD) who see ~15 kids from all over the US.

We had our last appointment in Sept 2010, where we decided to start challenging Owen's ability to process fat. At the time he was allowed around 16 grams of fat per day, so we (meaning our nutritionist and Dr. Vockley's nutritionist) decided to jump to 21 grams of fat per day for 4 weeks. We had lab draw in Nov. 2010 and the results were good! He's levels all stayed the same indicating the his body could process 21 grams of fat without any problems.

After the Nov lab results, we increased Owen's fat to 27 grams per day! However, we hit the terrible two's and had a really hard time getting Owen to eat, much less eat exactly 27 grams per day. We tried everything from giving him 2% milk, cookies, cheese, etc. to get the kid to eat enough fat for "true" lab results. Needless to say, we were unsuccessful. So, we ended up having the labs drawn in Feb 2011 after Owen decided to start eating better and we felt that we had actually feed him 27 grams per day for 4 weeks.

Here's where the bad news comes in...The lab results from Feb 2011 were not good, they showed an increase in levels, indicating that Owen's body was unable to tolerate/process 27 grams per day. C14 went from .15 to .22 and C14:1 went from .11 to .35. I know that doesn't seem like much, but Owen's levels are high to begin with so we're not wanting them to increase at all. We received these results 4 wks ago and dropped Owen down to 22-24 grams of fat per day. Labs were taken yesterday, but we won't know the results for another 2 weeks.

We know that Owen will always have VLCAD and always be on a low-fat diet....Our goal is just to find the "magic number" of fat grams that work for him! If that's 21...great! If it's 24..great! We just want to know! We've come a long ways from the 2 grams a day that we started with....at least now he can eat something more than grilled chicken!

Watching Toy Story 3 with Daddy while we waited...

Owen weighed in at 31 lbs and was 2 ft 8 inches tall. His head circumference was 20.5 inches.

At 4 months old, Owen had an ECHO that showed a small hole in his heart called an ASD. It's a fairly common heart defect that should close within the first year of life. We haven't had a follow up ECHO to determine if the ASD closed, so Dr. Kahler is consulting with the cardiologist about scheduling an ECHO at the Lowell clinic. We are not concerned about this, just want confirmation that it closed.

The lab draws were very traumatic! After 2 sticks and what seemed like an eternity, Owen completely lost it. It was so sad. It took 4 of us to hold him down and he kept crying and saying "please stop". It just broke my heart! The poor guy wouldn't even use his left arm for about an hour. After all that...we decided he needed a treat. So we went to the toy store and to Orange Leaf for ice cream!

I had to put this pic on here just because he's playing with a doll house....and you know how that makes his daddy feel. Ha!