Wednesday, August 31, 2011

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.


ch said...

well, you KNOW i LOVE to hear any good foodie anecdotes. biggs is down to only eating cheetos and sometimes warm yogurt right now. i could scream. but, he's also gained over a pound in the last two weeks. WHAT??? ugggh. colin's poop report definitely sounds similar to biggie's. his feeding therapist also sees a lot of bigg's vestibular issues coming into play when he's eating. that's been a CONSTANT hurdle for us, so we're investigating that further, too. starting this week, we'll be receiving 30 minutes of feeding therapy/week, so if we hear anything interesting we'll pass it along to our favorite PLEASE EAT penpals. xoxox

The Paskins Family said...

It all makes a lot of sense! So glad you got some answers and hope the new plan helps!

Wren said...

That makes SO much sense!!! I really hope that once your new plan is in place and things are "moving" his eating will pick up! Yay for an informative, helpful appointment with people who are understanding and willing to help!!!

Jennie said...

Kelli, I'm so glad to hear that you had an encouraging appointment. Micah's gut is so sensitive... he only gets 1/4 tsp of Miralax every night, but you do not want to skip it, nor do you want to give him more than that, LOL.

Anonymous said...

My son will be 3 in a few days. He is tiny and does not have very many Ds issues, for lack of a better word. His pediatrician had me give him Miralax every day. If he is going good, I may not give him an entire dose and if he is not going good I give him a little extra. As long as I give him some every day, he does pretty good. Also, he loves Pediasure which the pediatrician wanted me to have him drink two or three bottles a day. His pediatrician said that he would get all the nutrients he needed from Pediasure. That helped me not to stress over what he was and was not eating. Some days he eats pretty good and some days he hardly eats at all. I would love to "talk" with you about this. I don't know if I will be any help but I can tell you about my son and see if any of what he is doing would help Colin. Your kids are so cute and I love your blog. My email is if you would like to email me.

Suze said...

My 5 year old nephew has low muscle tone - he does not have DS, but he is classified special needs because of the many other medical issues (including seizures, non-verbal), that he has. He will eat just about anything, but goes through phases of not eating as well - and often they have to give him an enema. (I cringe thinking about it). But what you explained makes complete sense and helps me understand what my nephew is going through. I am so glad you have some answers and some plans for Colin though. Soon enough maybe he'll just be a picky eater like his buddy Tommy, who right now would live on ice pops and cookies if I let him! And chips! We're dealing with the "exerting his independence" thing when it comes to food. Not as frustrating as what you have to deal with by any means, but I can relate to your concerns about making sure our toddlers are getting proper nutrition. Hang in there!

Chromosomally Enhanced said...

so happy you are feeling great!! I hope this helps you and the BIG guy! Maddie also has a slow digesting they put her on Raglan not my favorite med..but it works good for Maddie...and she seems to get hungry more often know...we are also on prevacid...and it seems to be working ok...when we are having a tough go of eating...we do tv, playdough, markers, and books...I figure distraction is a win win for both of us!! keep up the great work! smiles

Anonymous said...

Thank you so much for sharing this info. My grandson is 15 months and has ds. Our daughter has tried everything but Evan pretty much refuses to eat anything but babyfood. He is a real good eater however. He is also on miralax and something for reflux. If he doesn't get his miralax he is just like Colin and struggles to poop. Evan has an ot and she has given my daughter alot of different ideas but like Colin he hates all that messing with his mouth. He would cry all thru his meal. I told her that he is just going to associate eating w/pain and quit eating. So we just keep trying and someday, hopefully it will all come together.
Once again thank you for sharing your experiences, it is so helpful.
grandma r