Look on the Bright Side...

We had a follow up appointment today with the feeding clinic at St. Joe's and it was much anticipated for me because of our current struggles with Colin's eating. As I mentioned yesterday, we hit an all time low and it's been overwhelming because of the fact that Colin has to eat, and he isn't. However, this was probably the best appointment we have had there so far and I feel a little bit more encouraged than I did before.

Colin playing with Mickey (yep, that's the insert to his new potty on Mickey's head)

At the beginning of the appointment, we spent a good amount of time discussing the things that have been going on lately between changes in Colin's health and the fact that he is refusing to eat. I let them know that we stopped the "method" we had been working on because it got to the point that it only made it worst having to manipulate his mouth during every bite. I was originally worried about being "reprimanded" for this, but they were so understanding and sympathetic that I actually felt better.

I told them about my concerns that Colin's eating habits are worse when I feed him (and I think it does have something to do with the fact I am the strictest when it comes to the eating because of my concerns) and that I thought it had something to do with his age.

They did think that these issues were contributing factors, but after much discussion of Colin's behaviors associated with eating, they really feel there is an underlying cause and when it was all explained to me, it made so much sense.

As most of you know, children with Down Syndrome have low muscle tone and we know that Colin does as well as evident by his gross motor delays and accomplishing gross motor skills. However, one sign that Colin has low muscle tone on the inside is the fact that he is not consistent when it comes to pooping. Most of the time, Colin poops what looks like rabbit pellets and yesterday, he had a really hard time going (to the point of crying because he was so uncomfortable). We do give the Miralax as suggested at one of the earliest appointments, but I haven't always been the most consistent because when he would go, I would back off until I thought he needed it again. The problem with this is that it then takes a day or two to start working again after being given the Miralax. She was explaining that when children have low muscle tone in their gastrointestinal system, the muscles have a hard time emptying the colon causing a back up and when everything gets backed up in there, it causes the to harden even more. She had me touch on his stomach in the area of his large intestine and you could feel little hard rocks in there. Poor kid.

So, step number one is to give the Miralax every day in addition to the Previcid that he is already taking for his reflux. We know the Previcid is working because we do not see him spitting up or having troubles when it comes to food and liquid coming back up.

The other problem where the low muscle tone comes in is that the muscle that leaves the stomach also has low tone, so it has some difficulties emptying the food into the small intestine. When the stomach is slow to empty, it means that he would stay fuller longer and have a loss in appetite because the food is essentially just sitting there.

One key question that she asked in regards to this was whether or not the meals get worse throughout the day and the answer is yes. When Colin eats breakfast, it is usually the best meal of the day and then does progressively get worse as the day goes on. Well, if the stomach isn't emptying properly, the large intestine is getting backed up, then he is going to feel more full and uncomfortable and truly not have an appetite. When a child doesn't have an appetite, then they don't have an interest in trying new foods. This would also be a reason why he would have regressed from the progress we had made.

Doesn't it all make so much sense? It makes me feel very encouraged because we have a plan in place to overcome some of these issues that are concrete. They are medical problems. Once these problems start to get fixed, then they feel that his appetite will come back and he will be more interested in food again.

They also felt that if putting him in front of the TV works right now at the worst meals, then it is ok because that is something we can fix later. They also said that it is ok to give him ice cream for dinner if that's the only thing he will eat. He has to eat something.

So, we have more information than we had before. We have a plan. We have backup plans if this one does not work.

I feel encouraged.