Category Archives: Nutrition

Some good news

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The week started out tough.  Lily got a ‘failure to thrive’ diagnosis on Monday from the nephrologist.  This is like getting (as one wise Rett momma so eloquently put it) a punch in the gut.  Hearing those words, especially as a mom, well… the guilt and disappointment and anger is indescribable.  I walked away from that appointment trying to not feel like a total failure as a mother. Thankfully my kid was being extra sweet and silly which helped shake me out of my funk.

The next day I got a video from school showing Lily holding onto the handlebars for close to 40 seconds while riding a bike.  This is HUGE.  Her hand function has slowly been improving over the past few weeks.  I can’t post videos to this site so you’ll have to settle for a screenshot instead.  If you’re on Facebook, I’ll be posting the full video shortly.

And then this morning, we had to see her pediatrician to get his signature for a Medicaid form.  They do not make it easy to get, nor maintain Medicaid but holy cow am I glad that Trumpcare failed because I’m not sure what we’d do without it.  But I digress….  We did a weigh-in at the same scale we used 5 weeks ago and according to the scale, she gained 2 pounds.  It’s taken a lot of effort – and patience – for both Lily and her nannies, therapists, teachers, parents, etc. to get here.   And we’re not done yet.  She’s still 3 pounds away from where she was 6 months ago but she’s starting to gain it back.

How did she gain 2 pounds in 5 weeks?  Well, Lily’s been on a steady diet of home-made mac-n-cheese, duck, tater tots, cupcakes, avocados, yogurt, pudding and pizza.  I’m still slipping in super healthy stuff for her morning smoothies to ensure she’s getting the vitamins and minerals her body needs.  But she’s basically eating anything and everything she wants.

In two weeks we are seeing the GI doctor to discuss further this ‘failure to thrive’ issue but I’m hopeful that the conversation will be a mostly positive one.

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Holding on to the handlebars like a pro!

Throwing (almost) all the rules out the window

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For at least two years, Lily was on a strict GAPS diet (basically grain free, dairy free, sugar free). When she started preschool, I started letting her have pizza (pizza Fridays!) and a nibble or two of a cupcake if there was a party at school. Safe to say, 90% of the time she was eating clean and healthy food. And she loved it

But then about 3 months ago, when things started heading south for her, one of the things that was impacted was her voracious appetite. She no longer harasses me in the morning to get her smoothie. Now she won’t even open her mouth to drink it. Lunch and dinner are pretty much the same. Mouth shut, not interested in eating.

Lily was a slight kid to begin with (even when she was eating voraciously) but now that she’s lost interest in food (for the most part), she’s gotten dangerously skinny. At this point I’m feeding her anything that will get her to open her mouth. She’s had pizza for lunch, and dinner at least 4 times this week. Tonight we ordered a bacon cheeseburger with fries and a vanilla milk shake for dinner. Anything that will get this kid interested in food again. She needs to gain weight. Urgently. And she will.

To supplement or not to supplement

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Recently on one of the parent groups, a question was asked about whether or not it’s worth buying expensive supplements for your kiddo. I thought my response could be helpful to other parents on a similar journey so I’m sharing here:

I’ve been using Agape on and off for years. When I can’t find it or afford it, I use the stuff you get at wholefoods ‘child life’ I think is the brand. I also have used and am using a mix of other supplements for my kiddo on top of this. And have I seen results? How can you really know? And what results are you looking for?

My daughter isn’t ASD (autism spectrum disorder), she has a disorder that, among other things, can cause growth issues (i.e. head and feet and other body parts stop growing) and failure to thrive because of malabsorption in the gut. She also has sensory issues and struggles concentrating. She physically cannot sit still due her her disorder.

So what have I seen? Well one thing is that she is on the growth charts. And continues to grow (though her weight is very much on the low end of the charts, but so is mine). I also see that she is healthy. And is getting better at paying attention. But is it just because she’s maturing? Is it because she got lucky and doesn’t have the growth issues that the other girls with Rett Syndrome have?

I don’t know. But I’m going to keep supplementing her and ensuring she eats the cleanest and healthiest foods possible (she’s on modified GAPS) because it can’t do anything but help.

If you’re not comfortable paying for Agape, why don’t you try the child life supplement to see if it’s something your kid will even tolerate before investing in a big, expensive bottle.

This SN parenting journey is not an easy one. And I’ve realized that we can’t do everything all the time. So pick and choose the things you believe in and think can help your sweetie be the best kiddo s/he can be.

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Long and lean, happy and healthy!

Lily, Lily legs

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The other day I posted the below message in Facebook. I thought it went up on the ‘My daughter has Rett Syndrome’ family group. But it was posted to the greater FB community as well. And I’m grateful for my error. I got so many fantastic recommendations from both groups. Now to choose which chair support to buy….

Here is the post:

So Lily is getting REALLY long. Which is not surprising as I’m 5’11” and her dad is 6’5″. But it’s starting to cause an issue for when we go out to dinner. Or go grocery shopping. Those Caroline’s carts have not made their way to Whole Foods in NYC (or any other grocery store for that matter). And when eating out, she can still fit in a highchair (she’s skinny) but she’s literally got both feet on the ground! If I don’t have her in the highchair, she will roam the restaurant looking for cute boys to steal food from. What do you do when you take your girls out to eat, who are roamers, and don’t fit into highchairs anymore?!

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Those piggies are flat on the ground!

 

Understanding cognition in girls and women with Rett Syndrome

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In my quest to find an answer for whether or not to do the neuropsych, I came across this recent article.  Here is a relevant excerpt:

It is extremely difficult to evaluate the cognitive abilities of individuals with RTT as these are masked by their motor, apractic and atactic difficulties, which limit normative evaluation. On the other hand, many research projects have suggested that individuals with RTT are able to learn [18-21], and that the learning skills can be enhanced with appropriate motivational factors [18] as well as that learning is sustained after a ‘washout’ period of the learning program has ended [18]. It is also clear today that individuals with RTT can learn new skills [22,23], including literacy [20,21,24], and that learning ability is sustained in individuals with RTT at all ages.
The article is insightful in many levels and the premise is basically that girls and women with Rett Syndrome need intensive and constant therapy/intervention throughout their lifetime to maximize their quality of life.
I’ve seen the positive effects of intensive intervention firsthand.  And there is now some data to demonstrate that Lily is progressing both motorically and cognitively.  For example, her first progress report for the year has come in and it is the FIRST TIME that the teacher at school has indicated that Lily has made significant progress in a few areas.  It is most definitely because she has a Tobii at school now, and that her teachers and therapists are committed to engaging with her through it.