Tuesday, December 7, 2010

SPD? and Dairy-Free

It's no secret that Daniel is a "high needs" baby and he cries a lot. In fact, some days, my sweet baby cries for hours at a time and I can't help him to calm down. He cries more after we get home from being out of the house for a while or after we've been around people he doesn't know (and therefore doesn't feel comfortable crying with). Sometimes we can make him stop by doing seemingly strange things, like taking him into the bathroom, removing his socks (or all of his clothing), turning him upside-down, or letting him pet the cat (or other very soft things).

Daniel doesn't cry when we're out and around people, and he usually doesn't cry if we hold or wear him constantly. Since he doesn't cry when we're out of the house or around unfamiliar people, this often leads to people joking about how we must be making up this whole crying thing, because he's just "so good," "so smiley," and "such a fun baby!" While I appreciate the well-meant intentions of those who joke this way, it feels really bad to have folks say things like this to me. I know it must be hard to believe that my kid screams for hours every day when he's grinning and flirting with you, but it invalidates my feelings to make these kinds of jokes. Plus, it makes me feel like I'm going crazy, when those around me are saying I must be making all this up. Fortunately, Jaymz experiences it, too, so I know I'm not inventing this in my mind.

So far, we've trialed Daniel on two reflux medications at the suggestion of our pediatrician, and we've taken him for chiropractic work and craniosacral therapy. Last week, we took him to an Occupational Therapist (OT) to be evaluated for Sensory Processing Disorder (SPD), or similar difficulties. From the Sensory Processing Disorder Foundation, "Sensory Processing (sometimes called "sensory integration" or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.... Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses."

The OT we saw did not diagnose Daniel with SPD. She said that it's clear that he's having difficulty with sensory integration, but his symptoms aren't as clear-cut as they are in many kids with SPD. He's also very young to be diagnosed with SPD, and in fact, she hadn't even encountered such a young child exhibiting these symptoms. She told us that by six months, babies should be doing a little better than he is at regulating his own emotions and nervous system. She said that we're doing an excellent job of regulating him for him, but that we're obviously exhausted and this can't continue this way much longer, because we're all getting worn out.

So, we learned some new therapeutic techniques that we're trying on Daniel, aimed at increasing the serotonin and dopamine in his brain. Namely, we are doing thera-pressure brushing and joint compressions eight times a day (or every two hours while he's awake). Here are some photographs of the brush and rough description of the brushing protocol, designed to minimize sensory defensiveness. I recorded a few seconds of Jaymz brushing Daniel, so you can see some of what we're doing eight times per day:

He usually seems to like it, but sometimes he cries through it. I'm very hopeful that this will help him, but so far, we haven't seen any appreciable difference. Next week, I'll be taking him to see a Naturopathic Doctor to see if she has any insights, and I'm eliminating dairy from my diet starting today, which—to be honest—I'm not all that jazzed about since I've already eliminated wheat/gluten. The next step if these things don't work may be getting evaluated by Early Intervention, but hopefully something we're doing will start to make a difference soon.

We're having a very hard time. I'm not asking for advice, but I would appreciate any kind thoughts or positive intentions you feel like sending this way.


  1. I hope that you can find something that does the trick with helping him.

    My son is almost nine months old and he was screaming pretty much every waking moment when I went on an elimination diet. I'm gluten-, dairy- and soy-free. It was hard at first, but has gotten easier. The nice thing is that there is quite a bit of gluten-free/casein-free food on the market. Please email if you want or need any tips.

    Best of luck!

  2. @Kristen: Thank you for telling me your story. It's nice to know the dietary restrictions get easier as things progress, and that this could be the solution to all the crying!

  3. Wow. I can't imagine how you do it, Amy. I know it must be absolutely exhausting. I'll keep your little family in my prayers.

  4. Thank you, Rena. You are so kind. I appreciate your prayers very much.

  5. I just had a moment to watch the video (I read the post the day you posted it, of course) and Mini Jaymz' little sounds while he gets massaged are ADORABLE.

    I wish I could do something to make Daniel cry less. But like we've talked about a million times, when that boy can talk, he will be a hilarious little firecracker. And maybe he'll explain some of why he's been such a fussy little babe.

  6. My first daughter cried SO very much in the first several months of life, and like your Daniel, seemingly strange things would help comfort her - like putting her in her carseat & lifting her straight up/down or playing music with a loud bass line...
    The only advice we got from our pediatrician was "you have to just put her down; don't always nurse when she cries; let her cry to sleep". Sigh. Our baby was a baby who would only cry MORE and HARDER and LONGER. No advice would've been better than that "advice".
    Eventually, she started to let up, and around 9/10 months, I started an elimination diet on myself (and she went back to breastmilk only) when we switched pediatricians (thankfully) and we did see a difference (in her eczema too).

    But even now at age 6, she's INTENSE. And brilliant and empathetic and intuitive, but seriously intense.
    Some babies, some children, just are. And its okay. I wrote a post about our experience with our "high needs" baby - if you're interested. http://www.kellynaturally.com/post/Why-High-Need-Instead-of-Fussy.aspx
    ((hugs)) It DOES get better.

  7. @Kelly: Thank you so much for your empathy. Daniel (like your baby, it sounds) will cry harder and harder if we leave him even for a moment when he's upset.

    Thanks again for letting me know about your experiences and helping me to have some perspective about what we're going through. =)

  8. So, I'm obviously coming in on this super late in the game here and I don't know what has progressed since you originally wrote this post. But I've been just kind of jumping around on your blog and getting to know you, this awesome gal whose milk my little one is gonna be snacking on soon! ;)
    I just wanted to give you a little encouragement and say that our older son, Charlie, actually has SPD (was officially diagnosed at about 4 years old, I think). And while can be difficult at times, he's such an amazing, unique kiddo. And I really feel like the SPD, while it can be hard to deal with, really also adds a lot to his "whole package" and his uniqueness. I really wouldn't take it away from him, if doing so would change him at all. I really wouldn't. He's so sensitive, and smart, and perceptive, and just plain awesome. And in a strange way, I credit some of this to his "hyper" senses. :)
    Again, I don't know what's down the road for Daniel, or if he'll ever be diagnosed (or maybe already has been?). But I just want to tell you that it's going to be okay, you will work through these things with your little guy, and learn so much from the challenges and you will be so proud as you watch him overcome some of his obstacles. Hang in there, I know it's not easy, but it does get easier, I promise.

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