Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Tuesday, July 20, 2010

Something is Terribly Wrong

Ok, so social disabilities should be accepted with more grace and tolerance out there in the world. But here at home, a child behaving like a trapped, angry animal is much, much scarier stuff that needs attention. Something was indeed terribly wrong. Things had been going along fine. We had noticed that Butterfly's behaviour deteriorated when her blood sugar got low, so we adjusted our daily habits to make sure she had food at very regular intervals. And of course, there were unexpected reactions and blow ups, but we'd been there before, so we took them in stride. This was different. Suddenly in the evenings she'd start behaving like a trapped animal. She'd try to intentionally provoke us, to get our attention, and she'd keep it up with increasingly dangerous behaviour until she got it. She'd go into her room, get up on her bed, and stand, back and opened hands against the wall, as if she was trapped. She wasn't, but her eyes would dart from side to side as if looking for an exit. She knew where the exit was, but this was a bizarre nightmare scenerio of her own construct that some crossed wire in her brain really didn't want to escape.

When her behaviour became aggressive, we had to subdue her, so she wouldn't hurt herself.. or wreck the house, or hurt us. It took both of us, and we just held her down and told her repeatedly to stop the violent behaviour. But she wouldn't, at least, not until we spanked her. We put it off each time until there was no other recourse, hoping she would respond to us. I just didn't believe in punishing her when she was in reaction and I wasn't a big fan of corporal punishment any time, but in this instance, a couple of measured whacks to the bum was the only thing that would stop her. Then she would start to cry, probably out of frustration, perhaps even out of relief. Only then would she calm down and sit next to me, and I could put my arm around her and comfort her. Then she would plead with me to figure out what was wrong with her. Clearly it wasn't something she was doing, so much as something that was happening to her.

After double and triple checking her diet we couldn't find anything she'd ingested that she wasn't allowed to have. We turned to the doctor, but all he could think to do was make another appointment with the pediatrician. I was perplexed. I didn't know what good that was supposed to do when her speciality was diagnosing ADHD, and Butterfly had already been diagnosed. I remembered the words of the allergist when he told me to trust my own instincts. I decided he was the person we needed to see. It was unusual to be able to get an appointment after so long without a referral, but we got one.

While we were waiting for the appointment, I noticed that those evenings when this happened, Butterfly had been given dessert with maple syrup on it. Now, she'd been having maple syrup and honey both, with no ill effect, since I removed sugar from her diet. Still, I wondered if it could have something to do with these attacks of violent behaviour. So I stopped giving it to her ~ in or on anything. The difference was a little astounding. When we went to the allergist, he put her through a number of tests, including the standard skin test that revealed an allergy to maple. She had also become sensitive to the honey.
After keeping her off both for a couple of weeks she had settled right down again. But she was still a very unhappy Butterfly. I mean, we had tried stevia as a sweetener in baking, but we could only get it as an herb back then, and it really didn't work. I decided to just try her on sugar again. There was no reaction. So I made things like banana bread with sweet, ripe bananas so I only had to add a little sugar to make it sweet enough. It turned out she could also have molasses, which was huge for baking cookies. And since wheat hadn't shown up this time on her skin test, I also let her try wheat. (The doctor had assured us that she would grow out of this allergy, but he wasn't exactly batting a thousand with us. He was right on this though.) She didn't react to it, so I began including wheat in her diet. I didn't just abandon the spelt though... I was used to baking with it anyway. But real hot dog and hamburger buns! Imagine!

We kept that appointment with the pediatician, but as I suspected, it was a waste of mileage and time. She had nothing for us that would help. The allergist had indeed been the right choice for the situation. Obviously with Butterfly, not having too much of anything too often was important, or she'd be liable to become intolerant of it. So we kept up a variety in her diet, and now with wheat and a little sugar, we were able to branch out that much more.

It wound up that what she couldn't have at that point was honey, maple syrup, corn syrup, glucose syrup, and no MSG or propylene glycol. She could have sugar only in moderation, and of course, variety was a must. I'd also found where I could get free-range chicken, and then a new store opened in town with natural meats and organics. So things were once again looking up, despite some very scary happenings. It wasn't possible to get too comfortable though, because with Butterfly, you just never knew what was going to come next.

2 comments:

  1. Again, all too familiar! We never had a severe reaction that was entirely traceable to foods, etc. but we had very similar reactions to what you describe. Almost hallucinogenic in nature, and really terrifying to both child and parents!!

    I think the spanking snaps them out of it. I'm a big believer in gentle parenting, but we have definitely spanked when things are so far out of control there seems to be NO other way to get it back.

    We went through a period of time where kicking us was the thing. Kicking, kicking, oh and more kicking. We would put her in her room and she would fight out of it, we would put her in her bunkbed and she would kick the wall until she made cracks in the ceilings of the rooms under her and broke the ceiling fan. There were the days of the screaming- the horrible, guttural rhythmic screaming for hours and hours on end. Then... it would stop as abruptly as it began, with some tears sometimes and the begging for help and apologies, IF she remembered it had even happened in the first place.

    We had EEGs and scans and this and that and the other thing... no seizures, no allergies, no sensitivities to things we hadn't already eliminated... nothing. Nothing but dead ends for us. Strep was our culprit. PANDAS is basically an allergy to strep. Doctors still don't believe us (us collectively, as in PANDAS' parents.) It's ridiculous, really, to not believe a parent or try to investigate what the heck is going on when a parent tells you some of the horror that is going on at home!

    Thank you again for sharing this. I can't tell you what a relief it is to hear you say some of these things. I wish this on NO ONE, but knowing you aren't alone is just priceless if you have to be in this situation at all.

    Many hugs!

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  2. Yeah, there was no way she was stopping until she was physically jarred out of it, like that slap in the face to the hysterical person, except we weren't about to slap her in the face. The bum was good enough. :/

    I heard about the strep thing on a talk show, and obviously, that's where we have to get info when most of the medical community doesn't respond to anticdotal evidence. They won't commit to an idea until it's been double blind tested to death. It's not about our kids, y'know... it's about preserving the dr's butt.

    I'm going to seek out a strep test somehow, because better late than never. And more story to come. Thanks for your comments!

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