Riding the Food Dye wave

I used to be the kind of mom that saw benefit in healthy eating--and now our sanity depends on it, while Tristan's SPD fights against it.  How so?  Well, he's very texture and temperature sensitive. If it's warm, it's "too hot!"  and anything leafy, soft, or mushy are "belch!" in his book.  He won't touch many kid favorite foods--hot dogs, chicken nuggets, most noodles (though spaghetti sometimes gets his approval)...and then those created in the last 40 years or so, he can't really have.  Let me explain.

We discovered back in October the connection between Yellow dye (both 5 & 6) and his hyperactive behaviors. This issue has been all over the news in the last two years.  For a few examples:
http://www.npr.org/2011/03/30/134962888/fda-probes-link-between-food-dyes-kids-behavior
http://miami.cbslocal.com/2012/03/28/can-food-dyes-cause-or-affect-adhd/
http://www.cnn.com/2011/HEALTH/03/30/fda.food.dye.health/index.html

I hadn't heard of it, though, until a church friend of ours who also works at the preschool Tristan attended this fall handed me a book by Feingold that she had read when her children had similar issues. We started taking all foods with dyes out of his diet and after a few days, he really was much calmer.  The only problem?  It's practically in everything geared to kids: store bought macaroni n' cheese, Kool-aid, jello, most candy and popsicles, many breakfast cereals (even ones you don't think of as multi-colored and dyed.  Yes, Cheerios is one on this list), juices, fruit snacks which had been Tristan's favorite snack, and the list goes on.

 (As a sort of side note: This is why I've been taking issue with the "organic" label lately--Annie's fruit snacks and others labeled organic have food dyes.  Read the label closely.  It even says "artificial colors and flavors."  How is something SO doctored considered 'organic'?)

It should be said, when some believe that those of us BEGGING for food dye regulation are not extremist in the least--many other countries DO regulate the use of food dyes and levels of dyes.  The US?  Not at all.  I don't think you necessarily need to ban them, but as we've seen such a huge increase in ADHD and hyperactivity in children (some sources  in the articles above mentioned 400% since food dyes have been added to foods), shouldn't we at least consider better regulation of what goes into the foods we eat and the safety of these additives?

In some ways, we're lucky.  Tristan ISN'T sensitive to Red 40, the most pervasive dye and the one many kids are sensitive to.  He IS very sensitive to yellow though (both the numbered ones and annatto--which we didn't know was a yellow dye until we did some searching after cheese crackers set him off).  How did we figure this out, and what does a food dye reaction look like around here?

Well, now that we keep him away from colors (thank you, capri sun and invisible Kool-aid for providing an occasional treat without the side effects!)  this is what can happen.   Before I start with what food dye "highs" (as I've taken to calling them) look like, you should know: he still naps and naps well most days for about 2-3 hours, and he also sleeps at night 7-6 or so.  He expends tons of energy so this seems normal.  He also expends tons of energy on food dye highs, but sleep patterns get crazy as you'll see.

Rob and I went to see "Brave" the other night.  I had been craving chocolate, so we got a bag of Reese's pieces and I didn't finish them.  They were 'hidden' in my purse.  On Thursday morning, Tristan snuck into my purse and found them.  After only a few seconds of quiet, we found him that morning eating them excitedly.  No, none of the brown ones--yellow and orange. Oh joy.

Thursday they worked on our roof, so I drove to Greenville with Tristan.  Of our 70 minute drive, he screamed "OUT! OUT!" for the last 20 minutes and couldn't stop wiggling.  We couldn't get him to eat much of anything, and he tried to drink his weight in milk and water.  He was irritable, didn't want to play with me or anyone else, and changed activities every 5 minutes.  Even one of his favorite videos at my parents house that's about 9 minutes long couldn't hold his attention the whole time.  Naptime was about an hour and involved us driving him around to sleep.  It took us 2 hours to get him to sleep that night. He got up on Friday morning about 5:30.

By 9 am, Tristan (and I) had played in the sprinkler, had a water pouring party on the kitchen floor, blown bubbles, ran around the backyard, had 3-4 cups of milk (again, almost no food though I did get him to eat some trader joe's fruit leather), played trains and danced to sesame street.  I was exhausted already (ugh pregnancy!) and he just kept going.  He was cranky and indecisive.  he would ask for something, and by the time I got it to him, he'd cry and tell me that he didn't want it and act like it was the worst thing I'd ever made him.  Naptime was a fight again, but I did get him to sleep without driving around.  It took over 30 minutes to get him to calm down enough to sleep and then he was up 45 minutes later, only slightly less cranky than before.  He wouldn't sit and eat with us for lunch or dinner. he only wanted to run around and play.  He'd barely make eye contact when I spoke to him.  He'd ask for hugs, but run away before I'd held him for 5 seconds.  Another hour at bedtime to try to get him down, and then we let him cry it out after that because both Rob and I were exhausted and he was still wanting to run around though at that point it was in circles while whining.

He was up by 5-something again this morning.  We tried to pull him into bed with us and rest, but he'd have none of it.  More milk, more running, more "no!" as I tried to keep him inside in this extreme heat, but he becomes belligerent during this period as well.

Food dye usually takes about 72 hours to wear off around here, or slightly less.  He is standing/sitting still for slightly longer periods of time this morning and showing some interest in food. He's also asking for hugs and making some eye contact. It's just so hard sometimes when your child can disappear behind this badly behaved facade for days, and you know the reason it happens but it's hard to stop sometimes.  He's too young to understand.  It also stinks because there's so much (texture and temperature wise) he refuses to eat and battles us over.  We're working with the OT on this, but...it just feels like a very long and frustrating road in the middle of a food dye high.

Burning the candle all over the place!

I finished the last full chapter I had left to complete, and left it with 3 readers I trusted.  After getting back their comments, I revised it and sent it to my advisor and another committee member for more feedback.

I'm now diving into the last of my data (community interviews) for analysis purposes--but it's not easy.  You see, it's VBS week, and students from both of my classes have assignments due next week that they're asking questions about.  This means I'm out about 8-12:30 every day for VBS, trying to get in some cuddle time with my little guy before his nap, answering questions for classes while he naps and then dealing with a number of meetings (doctoral paperwork how-tos, church council, OB-GYN) and evening obligations... Needless to say, I'm feeling a bit burnt out at the moment.  I figured it was safer to write less this week than write and have to deal with all of the revisions that (for me) result in less than intelligible or articulate writing.

But at least the last full chapter is written and I'll get to editing it when I've had a bit more sleep and I'll finish the last  analysis work when have a bit more time to really work and think on it.

When VBS ends tomorrow at noon?  I'm hoping Tristan and I can both celebrate with a nice, long nap :D

Transitions

The data is collected, I'm writing the discussion chapter now with only the conclusion left after this (and a WHOLE lot of revisions, I imagine).  I should be defending by October and graduating by December (please pray that all of this "time frame" holds together!) I'd always just thought that this blog would end after the dissertation was done and that perhaps this would someday serve someone else's data collection purposes on the challenges of dissertation writing.

As I've discovered lately though, the toughest part of the dissertation usually has nothing to do with the writing itself; the toughest part is figuring out how to balance life WITH writing and all the things life throws at you.  Recently, life threw something BIG at my family.  We'd always known that my son was very active and "quirky," but about 6 months ago, the tantrums got worse and he seemed to struggle more and more with expressing himself and feeling overwhelmed.  Our pediatrician kept telling me not to worry about things, things I'd started to notice around the time he was one and a half or two, but they started adding up.  The tantrums started to involve hitting, biting, kicking, head butting and one time he head butted me so hard, he made my nose bleed on both sides.

The signs were there even earlier than six months ago in some ways.  We had to leave preschool at the end of October after the teacher was SURE there was something very wrong with him and she couldn't get him to do what she wanted.  I thought "strong willed," but I did also have him evaluated by the DAYC measures (Developmental assessment of Young children), and he showed up slightly delayed but not 1) autistic or even 2) qualifying for services.  They gave me the name of a different pediatrician though, and she specialized in diagnosing and helping with children who had behavioral issues.  I eventually got fed up with our first pediatrician's reassurances and called the other pediatrician.  At our very first appointment in April, Tristan hadn't slept well the night before and was showing off all of his tantrum glory.  The pediatrician immediately helped us connect with an Occupational Therapy center, though she told us it would probably take about 3 months to get our first appointment for an 'official' evaluation.  Until then, he would be diagnosed as a tip toe walker, which is what most insurance companies require in order to send a child to therapy.  He is, in fact, a tip toe walker which is often a classic symptom of autism, though he was determined not to be autistic or to be anywhere on that spectrum.

I was more relieved than worried at that point.  Relieved that we were moving towards answers to help us all cope with his energy levels and violent tantrums. I put it out of my mind until we could go, and concentrated on school, writing, and teaching.  Our first OT was this past Tuesday.

I feel like our lives have changed in a few short days.  Yes, it's answers and that's an answer to our prayers although we have to still narrow down the diagnosis.  Yes, Tristan LOVES the OT and the play/movement it involves.  Yes, I'm excited and have a number of new resources...but it's overwhelming.  He's been diagnosed as having SPD or "Sensory Processing Disorder," and has both Hyposensitivity (over stimulated) and Hypersensitivity (under stimulated and needing more input)  to different stimuli.  Yes, it moves us towards positive changes in his life and helping him cope better with his surroundings as well as explaining a number of things he does....but now I do worry some.  I worry about when he might be able to potty train, if he'll adapt okay to preschool or if we'll have pull him again, and most of all if I'll be able to ever to have a full time job that isn't him (or if his brother or sister will be able to get enough attention in the midst of this).

It's going to take years of therapy with daily use of the "brushing" technique from me, as well as a good deal of advocacy. As SPD is still not acknowledged by many physicians as a 'real' condition and schools usually take a punitive approach to dealing with it (punishing for the 'acting out' that happens when reacting to sensory stimulation), it's something that will require a lot of work on our part to make sure others understand and don't immediately stereotype him as a 'bad' or 'disruptive' child.

So what does that have to do with my dissertation?  Well...it is impacting how quickly I'm able to work and how distracted I feel lately.  More importantly though it has to do with the future of this blog.  I've come to the conclusion that this won't just end, but will transition to dealing with SPD, our family, and ways in which (I hope) our faith and faith community intersect in our lives.

Look for this to be blended for awhile, alternating between updates on the dissertation and writing  with life with SPD and how we're coping.