Elli's Neuro-Development Doctor Appointment

We had an appointment for Elli last week with a Neuro-Developmental Clinic in Grand Rapids. Our doctor had referred us to this clinic (somewhat at my request) because Elli is still not gaining weight, she's still struggling greatly with food, and we have been unsuccessful in backing off on nursing - every time we try, she loses weight. :-( This Neuro-Developmental Clinic is the first step to entering an intensive feeding clinic in Grand Rapids that our OT recommended, so off we went.

I was truthfully a little apprehensive about going to this appointment. I knew some other people (from Elli's class at school) who had gone to see these doctors and had been given a lot of grief from the doctors about the fact that their child was failure to thrive (the technical definition when a child falls off the growth charts). So I felt like I was going to have to defend myself and the fact that we were doing everything we could, and I frankly wasn't looking forward to that.

As has often occurred, the appointment turned out much better than I had anticipated. They started out with the usual stuff - checking her weight, length, and head circumference. Then, I spent about 1 1/2 hours talking with a PA there. She was obviously well-informed about feeding and growth issues, and she even knew quite a bit about aniridia as well as visually impaired kids in general, which surprised me. As we talked through Elli's medical history and she watched Elli play with the variety of things I'd brought along to keep her busy, she said on numerous occasions "Someone's definitely been working with you..." and "you obviously have been getting a lot of therapy for her", etc.

At one point, she said, "Now, are you receiving any services from Early On?" I told her we were receiving OT therapy, speech therapy, and feeding therapy that Ms. Katie provides, plus the vision therapy that Ms. April provides.

She asked, "How often do they come see Elli? Once or twice a month?" I told her that Ms. Katie comes 1x per week, Ms. April comes 2x per week, and Elli attends a class at school 1x per week.

Her response was "Wow...that's a lot of therapy! Who are your therapists, if I may ask?" I told her their names and which county we lived in.

She said, "Well, I'd like to clone your therapists! They have been giving you all the right information and all the right tips! Every time I am about to ask if you've tried something, you tell me that you're already doing it! That's amazing - we never have parents come in that have gotten that much good information and are doing all the right things like this."

Although we knew that April and Katie were very good, this was confirmation that we have been greatly blessed - very few of the surrounding counties provide the quantity and quality of services that we've received from them. We are very thankful!

Once we were done talking with the PA and the PA had a chance to brief the doctor, both the doctor and the PA came back in. The first thing the doctor said was "Well, you are doing all the right things. We couldn't ask more of you. But obviously, it's not working as well as we would all hope, so we need to start looking at other things." Makes sense to me!

So, the conclusions were as follows:

1) They found (through blood work) that Elli has a zinc deficiency. Apparently a zinc deficiency can cause a lack of appetite, a lack of taste (or make food taste funny) and an inability to use the calories that you do take in. One of the populations that a zinc deficiency is common in is older infants who are exclusively breastfed - zinc must not pass through breastmilk well. Since Elli was (unfortunately) exclusively breastfed until she was about 15 1/2 months old (since she couldn't swallow anything else until then), it makes some sense. The solution is to crush up a zinc pill and mix it in food to give to her 2x a day - which made us laugh, given that the problem is that she doesn't eat well! But we're being creative and finding ways to get at least most of into her little body. :-)

2) They also found a protein deficiency, as shown by low pre-albumin levels. No surprise there - she had been low back in May when they first ran the tests, and although we're working to get protein in her, I was sure it wasn't yet enough. The good news is that the number is improving - it was a 10 back in May, a 15 this time, and we need it above 21 or 22. So we're moving in the right direction. The "solution" is to increase protein in her diet in any way we can - hummus, peanut butter, cheese, cheese dips, cheese powder, Carnation Instant Breakfast, etc. Of course, we're already doing much of that, but we need to continue (and hopefully get a little more in her).

3) They are going to schedule another swallow study, this time at the same clinic where the intensive feeding clinic resides. The PA had asked if we'd done a swallow study yet. I told her that we had, but it was before she could swallow anything but breastmilk straight from the source. Her response was "Well, I'm guessing that didn't do you a whole lot of good, did it?" :-) I told her it was a large waste of time. :-)

She was concerned by the fact that Elli can put something like ground turkey in her mouth, grind it down to almost nothing, and still doesn't seem able to swallow it - she'll chew it for an hour or more if you let her, but she'll eventually have to spit it out. She can swallow some things fine, but only if it melts in your mouth well, which rules out most foods (like meats or beans) that contain protein! I have not heard regarding a date for the swallow study yet, but hopefully it will occur in the next few weeks.

4) Once the swallow study is complete, we will go to the same clinic for an oral motor feeding evaluation. She said she doesn't think we need more outpatient therapy (she realizes we've already done tons of that!), but she wants to see what the therapists there say once they see the results of the swallow study. Hopefully they'll be able to give me some tips on improving those swallowing issues.

5) They've referred Elli to the intensive feeding clinic, which would mean being in GR 8-4 Monday to Friday for something like 6-8 weeks. (It's worth it if it gets her eating well, though!) However, there is about a 6 month waiting list to get into the clinic. So, at least now we're on the list. If we need to be there sooner than that, I'm sure that God can work that out. Or perhaps, the zinc supplementation will help, along with the results of the swallow study, and maybe we won't have to go at all. We'll see!

One other interesting thing the PA said is that it's very common for visually impaired children to struggle with sleep issues. I knew that was true for completely blind children, since they don't receive the light necessary to regulate their melatonin and circadian rhythms, but I didn't realize it was true for all visually impaired children. That was encouraging to me - it certainly explained why sleep has often been more difficult for Elli than for some children I know. :-)

The final things they said at the appointment last week was "Well, she sure is cute as can be, and she seems to be thriving in every other area other than feeding/growth!" So true. :-)