One more bite please

In February Reilly came down with a terrible flu/cold bug that knocked her out for a couple of weeks.  Reilly has a strong immune system and rarely comes down with colds but this was one was not fun as I came down with it too.   It was not unexpected that she would lose her appetite during this illness but what was unexpected was that her normal appetite levels never returned.  Out of concern we contacted our neurologist’s nurse who has been our ‘go-to’ person for almost any issue as she has proved to be the most helpful resource around and consequently referred us to a Feeding Clinic at Holland Bloorview Kids Rebhab in Toronto.

Reilly’s appointment was just this past Monday. I prepared in advance a list of general comments, what she typically likes, what she doesn’t like – what she was like before and now with respect to eating habits, etc. along with a few typical eating diary entries.  Here is one from Sunday, the day before the appointment:

Sunday, May 5th

Breakfast 8.00 am

  • Approx. 1.5 cups of water (this is not normal but great!)
  • 1 slice of Raisin Bread with butter (not our preferred choice but it worked this moring)
  • ¼ cup of vanilla yogurt (with Reilly’s pills). In order for her to eat the yogurt we have to bribe her with vege chips.

Morning Snack

  •  hand full of Gluten free crackers

 Lunch – noon (Great given other meals but still not enough)

  • 1.5 cups of pasta with ham & peas
  • ½ cup of Water

 Snack

  • more water
  • mozeralla cheese string

 Dinner (she just wouldn’t eat)

  • 1 apple sauce cup (with medication)
  • 2 potato cubes (baked)

I expressed great concern that she is not eating enough let alone getting the right nutrients into her body.  They understood but felt she was still on the healthy spectrum (height 3% percentile and weight 50% percentile).  I agreed that we have some room to play with her weight but there is something  just not right with this new eating behaviour and I think it goes beyond simply a behaviour phase.   They asked a lot of questions and observed her eating her lunch at noon which she ate well (wouldn’t you if you last ate at 7.30 am and barely  had anything then and nothing the night before). They confirmed she has no problems biting and swallowing, which is sometimes a  huge issue with girls with Rett Syndrome.

They gave some great suggestions that maybe she needs some more intense flavour added into her diet as she tends to prefer salty things.  They even suggested adding Tabasco Sauce to Smoothies – crazy but who knows.  One issue that she could be experiencing is Acid Reflux but she has been on the appropriate medication since she was 4 and she is at the max dose for her weight.   Reilly like most Rett girls have a high tolerance to pain but I don’t sense that she is experiencing anything related to Acid Reflux, in fact I even commented that her breath does not smell in the morning, unlike her sister’s (bad breath can be a sign/symptom of acid reflux in combination with other stuff).

There is no question that we will continue to experiment with food choices but I would have thought the Feeding Clinic would have gone beyond the scope they covered and requested blood work to ensure that nutritionally she is sound and not deficient in key areas, especially since we have a known issue with her drop off in growth (height).  Besides her lack of eating and some additional napping time, Reilly is in good spirits.    I tried to ask the team at the Feeding Clinic what happens if their suggestions don’t work? and they really didn’t have answer except come back for another appointment.  I don’t want to subject her to a battery of tests especially when we have no idea what might be going on but I don’t see how she is getting enough food to do what is needed to allow her to grow and thrive?

So now what????

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