Saturday, May 16, 2015

The Great Casein Debacle of '15

I've been muddling through a tough couple of months.  Maggie is usually such a happy kid, and she's made some major accomplishments in the last few weeks, but she also hasn't quite been herself.

She's been less attentive and more in her own world, more prone to meltdowns (going from maybe one a week to three a day) and more likely to lash out at me or collapse on the ground, banging her head hard against the floor as she falls.  She sleeps more, and needs 13 hours a day, but sleeps less well and has seemed exhausted much of the time in the morning.

Worst of all my usually cuddly girl has hardly wanted to cuddle at all.

For two months I've wracked my mind trying to figure out what had changed, praying that this unhappiness wasn't the new normal and feeling like, for every gain we had a dozen days that were extremely hard.  And I'd watch and watch and try to figure out if she'd had gluten or casein because all these problems have popped up in the past when she's had even a tiny bit of cross contamination.

Yesterday I was speaking with a new(ish) therapist who's been with her for a couple months.

Now in the interest of total disclosure in this post I should probably mention that I had noted that many of these problems seemed to begin at roughly the same time as the introduction of a new therapy... but I'd been with her in the sessions before Paul started his new job and now I wait with the other kids in a room next to the room she's working in, where I can hear her happy voice but can't see what's actually going on.

I won't specifically name the therapy here, but let's just say it's a very mainstream therapy that tons of kids get, on the spectrum and off, that she'd be getting in school if she was in school, and it's one we fought long and hard for that she seriously needs.  So it felt insane to be actually considering pulling her out of a therapy that I'd fought for her to get into for over a year.  It had to be something else, I kept telling myself.

Yesterday after her session her therapist and I were talking about tools she was going to give me to work with Mae on while we're away this summer.  She told me that Mae really likes applesauce (which I'd okayed), marshmallows (which I'd okayed), and... M & M's.

I'm pretty sure time slowed down at the mention of M & M's.  I listened as she continued to talk and took a deep breath and managed to force my voice to sound steady and pleasant when I said:  "Oh, about the M & M's.  Make sure not to ever give her those again.  She can't have casein."

Now this is in her files and charts and is told to every therapist who works with her (which is why we discussed the other foods at an earlier date).  She wears a bracelet that proclaims that she cannot have wheat or dairy.  And it's also pretty standard for a lot of the kids getting therapy around here.

She replied that it was only "a little bit" and I nodded and didn't have a meltdown of my own right there in the center.  I won't go into how much self control that required, but let's just say it was not a little.

On the one hand I'm now hopeful that in a couple weeks we'll see some major improvements in how she's feeling, sleeping and just in her general happiness.

In the past it's taken about 2 weeks for her health to improve after she's had gluten and casein (in the last two years this has happened about a half dozen times and every time the behaviors have started it's later been discovered that she's been exposed to something she shouldn't be... once it was playing with play dough...).

So we'll be muscling through the coming days and focusing on that light at the end of the tunnel.

This morning we went to the local Autism Acceptance 5K.  We didn't end up walking far, because Patch was having a tough day, but Mae is still proudly wearing her shirt and a medal that one of the young men working at the race gave the kids.  And she ran up and down the pathway singing "run, run, run, run!"

Hopefully today's the first day on her road to feeling better again, and it got off to a good start.  And hopefully this is the last time we have this problem... at least for a very long while.


  1. Clearly the therapist hadn't read the package, or hadn't read her charts, or didn't realize that casein meant dairy... Glad you figured it out. However, this therapist clearly needs some education in food sensitivities. This time all it did was give Maggie a setback, but in the future she could encounter a kid with a life threatening allergy and still think that just a little bit couldn't hurt. It's the new normal in our society. We don't really know why, but a lot more kids have serious reactions to some kinds of foods, and educators, in particular, have got to pay attention to those bracelets. You showed great restraint in not having a major meltdown.

    1. And the thing is I know we'd talked about it twice... I'm really hoping it hasn't been happening across the board because my guess would be a large portion of her case load is GF/CF.

  2. At this point I would simply tell the center not to let her eat anything that you don't provide. If they can't be responsible enough to know her allergies, then they loose their right to give out treats. Allergies are not something to be messed with. I'd also speak to her supervisor and indicate how unhappy you especially with a medically trained therapist giving out allergy-laden treats. They should know better. It's completely unprofessional not to mention dangerous.

    1. I emailed Mae's case worker to let her know what had happened last night (they both work for the same institution and she's like Mae's advocate). I'm planning on bringing some of the gf/cf mini chocolate chips we have next week just to make sure it does't happen again.

  3. Wow. What ignorance on the part of the therapist. The fact that she then proceeded to tell you that it "was just a little" proves this. I don't how you kept your cool, but God bless you for doing so! Hoping it clears her system quickly so she can feel better and be her sweet self again!

    1. Thank you! Paul thinks she seems happier today, which makes me think that she didn't have any this past week (which makes sense since she was only carrying marshmallows), and hopefully we're getting back to normal again!

  4. At least she told you. I guess maybe from now on if you see this behavior in Mae, and someone else has been in charge of her for any amount of time you might want to double check immediately with them if they are giving her anything with casein or gluten in it.

    (Remember, as your kids get older, Sadie or Patch or James might want to sneak her something she wants - like M&M's or something else, "but don't tell Mommy.")

    Hard way to learn a lesson. Hope she feels better soon.
    God bless. ~ Bonnie

    1. Yeah, I definitely will need to check in the future because it's just such a reliable way of telling.

      I'm hoping we avoid people sneaking stuff only because the other two have allergies. Sadie is hyper vigilant about everyone's allergies, because she's so allergic to wheat and knows how sick it makes her, so I don't have to worry much about her and hopefully Patch will understand his allergy without too many incidences (he's only had one reaction where I almost had to use the epi-pen). Hopefully the fact that their allergies overlap helps. I think it does help in some ways because neither Sadie or Patch has access to wheat or dairy at this point, because it's so dangerous for either of them (which I think helps protect Maggie).

  5. Oh goodness. Good for you for keeping your cool. Poor Maggie!!

  6. One thought that comes to mind is that while I really, *really* wish that therapist understood the basics of allergies a lot better, I am just a bit glad that she did that with Mae and casein, rather than, say, giving a kid with a violent peanut allergy "just a few" peanut M&Ms. *shudder* Not that that makes it any better, you understand, and clearly this group needs better training on allergies and such, but if I had to choose, I'd rather have a kid be sick for a couple of months than go into severe anaphylaxis, y'know? Ugh. Who knows? Your letting them know about this issue might save another kid's life.


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