For any of you who have seen us in the past 6 months, you are well aware of what a struggle mealtime has been. Well, I have been stressing about this for a long time, knowing that he wasn't eating enough all of these months. The problem with his appetite began when he started taking Topamax in April, which has a side effect of appetite suppression and weight loss. I have carefully watched what he has been eating and tried to get him to eat more. Most times this results in fussing or crying at mealtime, and a lot of frustration on both of our parts. Many many people have told me over these past months that he is fine and not to stress about what I alone was seeing as his eating issues.
When he was 9 months old he weighed 30lbs 2oz, 3 months later at 12 months old, he weighed 30lbs 4oz. A gain of 2oz in three months in not great. In fact, if he hadn't already been off of the charts for his weight (which he has been since he was 3 months old), our doctors would have been very concerned at his lack of weight gain. But because he was so heavy we were told to wait and see how things looked at his 15 month appointment. Well yesterday, I was unfortunately proven right, and all of those naysayers are wrong. He weighed in at 28lbs 8oz. A loss of almost 2lbs at this age is a huge deal, no matter where he was on the charts previously.
The naysayers have been saying that he will eat when he is hungry enough. Well sorry, I tested that once and it didn't work. He can go a full day without any solids, and only 10oz of milk, without any complaint at all. Obviously, this is not enough food. In fact, I found some portions sizes and recommendations for children 1-2 years old on the internet, and we determined that he, on a typical day, was eating the right amount of fruit and dairy, but less than 1/2 the amount of meat/protein and grains that he was supposed to be having. So for the past few weeks I have been trying to tank him up with the appropriate amount of food for a toddler, and falling short every.single.day in one category or another. We have been attempting to supplement with Pediasure for his afternoon snack, but he is not a huge fan of any of this. He would much rather have a bottle of milk instead. Well unfortunately, a kid his age cannot subsist on whole cow's milk alone.
I have known that he was lighter than he had been these past few months, but I was hoping that these weeks of concerted feeding effort would have gotten him to gain some weight...and maybe they did...maybe he was even lighter than 28lbs in the past months. Scary thought.
The thing that bothers me so much, is that I have been getting flack about our struggles from everyone who has witnessed it! All of our therapists, family members, and friends...our supposed support system... It was so hard to persist in my beliefs, in the face of all of their criticism, knowing that this feeding issue was something real, and one of the few medical things in Linc's life that I felt like I could do something somehow to make it better. I now love that I am right and they are all wrong. Although, I wish it were not true. I wish that he would eat like a normal 15 month old. I wish that he were still gaining weight and that this was not an issue for us...another issue on top of everything else.
In addition, his lack of appetite has compounded other developmental problems. He refuses to finger-feed himself, although I feel like he is capable of picking up some food off of his tray. I have seen him do it for months now, but he rarely puts any of it in his mouth. Also, I know he is capable of drinking from a sippy cup or straw, I have seen him do it several times, but I hesitate to force the issue of getting him switched over to a cup, because right now the bottle is the only sure-fire way of getting him any calories at all! These are the issues that our therapists are looking at. They want me to make mealtime fun and work on all of these skills (holding food, self-feeding, playing with food, sippy cup, straws, etc.)...well sorry, I just can't do it all. When you already spend 3-5 hours a day trying to get your kid to eat the right number of calories when he is not hungry, has to eat foul tasting medicine for 2 of his 3 meals, and is strapped into his high chair for long stretches of time...these other issues just fade in importance.
So, what are we going to do about it?? Well, I will be talking with the Neuro this week to see if we can get off of the Topamax (which is hopefully a yes, because he has started refusing it completely again), and hopefully this will help his appetite without impacting his seizures. Additionally, we will be getting a Nutritionist consult sometime within the next few weeks. And maybe adding some sort of calorie booster to his milk bottles. Plus, I am sure there will be a lot more stress and tears for all of us.
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Anyway....some of the other stuff we discussed at the appointment...
His stats; Weight: 28lbs 8oz- 90th percentile for his age. Length: 35" - off of the charts still. Didn't get the head circumference number, but they did say that it was at 50%. Which is very good for us, as hydrocephaly is something that we will always be watching Linc for.
He has this weird stripe up his right leg which is made up of little red bumps in a perfectly straight line. From far away it looks like a scratch, and maybe it started that way, but it has been exactly the same for 2 months. It doesn't appear to be something that is normally associated with one of the skin condition for TSC. Our pedi said that he had never seen anything like this before, so he gave us a refferal to a dermatlogist to see what he thinks. I will be making that appointment sometime next week. Luckily it doesn't seem to hurt or itch at all, as Linc doesn't seem to be bothered by it in any way.
Lincoln got 4 immunizations...DTaP, Hep A, seasonal flu, and H1N1 swine flu. He will need the flu shot boosters in 1 month. Oh boy. They also gave me the H1N1 shot in the interest of protecting their soon-to-be new patient in March. :)
And after all of this, I will leave you with a picture of our tall newly skinny sleeping little boy!
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