Monday, April 28, 2008

Interesting weekend

Xian was on a pass for the weekend and I figured it couldn't hurt to do what I could to eliminate/reduce fructose just to see if there's really any chance of that being the issue. This was not an easy task, as fructose seems to be in everything prepared, and even anything with 'sugar' listed is suspect, because sucrose apparently contains fructose. And to make things more confusing, with the fructose disorder, glucose/dextrose are okay---I bought a bag of dextrose powder at the health food store to be able to sweeten up a few things. I did make some mistakes---but what was interesting is that I discovered them because of noticing Xian's behavior/responses changing. She did so well on Saturday that I decided to introduce a bit more protein on Sunday (plain yoghurt, more milk, more cheese) and she had no episodes. By Sunday afternoon there was a radical change---we visited a friend who was having a group of int'l adoptive single moms over to meet her new little guy, recently adopted from Ethiopia. While at first Xian withdrew from the other kids and was asking me to take her home, within a half hour or so she seemed to remember her old friends and was playing chase games in the play room. She was talking more (a lot of the time since Xian's become ill she's been mostly silent), and the thing that blew me away was that by the end of the afternoon (the kids all moved outside because it was a lovely day) she was playing on the jungle gym and hanging from the hanging rings. Now, as I've mentioned in earlier posts---the last time she played on gym equipment was probably late September. After that she lost ability and interest. Yesterday Xian was also remembering swing games and trying to get her friend Ellie to let her sit across on the swing so they could swing together. While her language still was not at her old level and she wasn't able to modulate her behavior as she would have (sort of 'rushing in' and barging her old friends, a bit like a bull in a China shop) it was a huge difference.

So, the big question for me is----is this just random coincidence and she'd be getting better anyway, or was it really the reduced fructose? And, if it's the fructose the puzzling thing would be why she seemed to tolerate it better before late summer. She did, after all, eat fruit regularly---though prior to the summer candy was a rare treat, though soft drinks were never tolerated. She's always had an extreme aversion to ketchup (full of the stuff) and odd reactions to medicines (kid's medicines are usually flavoured with fructose or sorbital---which converts to fructose in the liver). WAS she maybe showing signs of it that I never picked up on? Xian's always has unexplained periods of irritability and also times when she's been a bit 'spacey'/quiet. Could her early experiences have affected things in some way? When Xian was first adopted she had a bad case of giardia parasites and had lots of intestinal issues for months afterwards, and was never really a kid who had particularly 'normal' bowel habits (lots of alternating constipation/diarrhea, malabsorption etc.---though she never complained much or showed signs of pain, even when what was going on for her certainly would have caused me pain). Was her illness in China this past year connected? (Because access to dairy was limit, she drank a lot of juice and very sweetened packaged dairy and yoghurt drinks.) And, paradoxically, it seems like as she's become more ill she's begun craving sugars/sweets/carbs at a level I've never seen in her (i.e. constantly begging for chocolate, apple pie, cookies, etc.)

I'm going to call her metabolic doctor's office and leave a message (maybe they can do the fructose test first?) and will also share my observations when I drop her off at the hospital this morning. Oh, and the other big change is that on lowered fructose she's been sleeping better---fell asleep by 9:30 ish last night and is still sleeping. (Off to wake her up so we can head off....)


Louise said...

Ohhhh "Amen" to this hopeful post!!!! It sounds as if you've stumbled upon something. They say if you are "allergic" to something you actually crave it. (As with children with Autism and wheat/dairy)Xian's improvements sound very very hopeful. Life is ...fragile...when pieces don't fit ...until in hindsight...some of the pieces do fit. OH continued prayer for strength and resolution for your sweet girl!!

Playful Platypus said...

Linda, so glad to read this hopeful post! I hope and pray this is, if not the whole solution at least the major part. It must be so hard for Xian - not to mention you and Rachel - to have to live through these awful episodes and not understand what's going on, or why.