Thursday, July 28, 2011

Calming sensory defensiveness

I was hesitant to write on my regular family blog about the successes we've had since going gluten and casein free. I am sensitive about causing others think that this is something they should try because the special needs adoption world is full of too many "should try-s" already. But I need to share and celebrate some of those successes and this seems like the right place to do it.

Our youngest two children, ages 9 and 13, have FASD (Fetal Alcohol Spectrum Disorders) and several co-occurring mental health diagnoses. They also have digestive and immune system problems and both have an autoimmune disorder- PANDAS- Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

PANDAS involves an antibody "attack" on the basal ganglia in the area already quite susceptible to damage by prenatal exposure to alcohol.

Last year was the year from hell with multiple strep infections and PANDAS episodes which resulted in several police calls to our son's school because of severe and violent raging, desperate visits to the ER or the psychiatrist's office, and countless tears...most of them my own. It caused me to finally be overwhelmed enough to look up an old email friend who had written about nutritional interventions for children with FASD.

Eliminating gluten and casein had seemed impossibly difficult before this but I knew we could not continue to live like we were when the only treatment, aside from a constant stream of antibiotics, seemed to be an increase in psych meds with every PANDAS episode.

Our daughter's paternal biological family (these two children have the same birthmom but different birth dads) had a strong history of Celiac and Crohns disease so trying this elimination diet was always in the back of my mind....but that's where I wanted to keep it. (We did the lab tests for Celiac with our daughter and they did not indicate that she had the disease. We did not do the more invasive intestinal biopsy.)

I wrote at the beginning of this blog about how overwhelmed I was at the onset of our GFCF plan. I am not overwhelmed any more. I am still learning and we've had some accidental exposures to both gluten and casein but it has gotten easier and I feel more confident every day. Now I'm even reading about the GAPS diet and considering how to use some of this information to heal the gut instead of simply avoiding what is difficult for my children to digest. I want to continue and to learn more because we've seen so many good and unexpected results, like this...

This week our 13 year old son clipped his fingernails and toenails.

This certainly wouldn't make front page parenting news in the neuro-typical world but it was a freaking miracle in our world.

Bean's sensory processing disorder, a common co-occurring disorder of FASD, was so profound that he swore that he felt extreme pain when his fingernails were cut. For years he absolutely refused to let us trim his nails and they grew long and ugly until they eventually broke off. His sensory defensiveness to smells, tastes and textures has lessened considerably since we starting the GFCF diet and he recognizes this. When he asked if he could try cutting his fingernails, I almost fell out of my chair.

Now he wants his own fingernail clipper! Heck, I'll buy the kid an entire manicure set!

Our daughter Java used to SCREAM during showers because of the way the water felt as it hit her. We kept windows shut so horrified neighbors wouldn't make a child protection report because it sounded like we were killing her.

Java is now calm and able to do much of her showering tasks herself. Never in my wildest, most hopeful dreams did I think that would happen.

We haven't cured FASD. We can't. However, we can help our children function better and I have hope that we can support their digestive and immune systems in a way so that we might avoid the nasty PANDAS.

Six months without a strep infection.... (*knocking on wood*)


  1. awesome! I am sharing your site and info with family members - thinking in the back of my mind that it may have some real benefit for many. We have autoimmune and chrone's in our family history as well.

  2. So proud of you Kari, seriously, doing GF/CF is no joke but you've managed to tackle it! It makes me day to hear that your kiddos are doing better.
    And I can totally relate to the toe nail/finger nail business, Jack's got sensory issues with that too and I know how HUGE that is when you can finally tackle it. No joke, I do the happy dance every time I manage to get Jack's cut with no blood curdling screams- which may be the biggest incentive for him, who doesn't love seeing their mom looking like a fool :)

  3. So wonderful. I am so glad that you are seeing so many results. We are working hard on healing our son's gut and keep him free of things he is allergic to. I am seeing much improvement in my son (FASD/sensory issues)as well. We are seeing a little bit of improvement for our dd with the same issues, but adding in RAD. Hmmm! This is the second blog today talking about GAPS. I think I will go read about it.



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