Sunday, May 4, 2008

Our weekend and small miracles

Similarly to last weekend, Xian seems to be 'clearing up' and regaining a lot of the skills that we all thought were lost. I did hear back from her metabolic specialist on Friday afternoon after we got home, and she reported that Xian's ammonia levels were normal after the protein load---no amino acid levels back yet, but she's going to be calling about that on Monday (her day off--I remain pretty impressed!). She said that it was probably safe to start to gradually increase Xian's proteins and just watch to see if anything happened. (I've also been given the task to check for her what Xian was actually given during the testing---there was supposed to be a large egg that never arrived on her tray, and the amounts of everything were completely specific.) So, still keeping Xian fructose and sugar free (and getting better at that) but have been giving her more milk, a bit of egg (refused), and a bit of salmon (eaten). What is fairly remarkable, is that she seems to be returning to 'the old Xian' gradually---not quite there yet, but at the rate she's improving I am really beginning to believe that she will be able to make a full recovery. Yesterday she started using voices in imaginary play with her princess Barbies (doing little dialogues with my mom and with Rachel) and today she dressed them all up (crowns, jewelry bits) and they were all 'talking'. Right now she's trying to write her name (got two of the letters), and a few hours ago was counting with my mom (helping her to divide up a bottle of Cold FX capsules we bought at Costco). She's started singing and dancing again, and talking to herself in the usual 'old Xian' way. But, the pi├Ęce de la resistance---yesterday we went to Chucky Cheese, for Rachel's sake (remember her constant saying, "When we break Xian's spell we will go to Chucky Cheese). My mom and I figured one of us would be returning to the car or walking outside with Xian while the other let Rachel have her fun. Well....Xian wanted to go in, obviously remembered games she played last summer, and was having the time of her life. (My mother and I, on the other hand, finally both had headaches enough to leave with the kids and half a container of tokens.) This morning, the minute Xian's sleep cleared from her eyes she asked, "Can we go to Chucky Cheese?" So, after a grocery errand that's where we went again. Xian again had a blast, and the only real difference from her participation last summer was that she requires a bit more adult help and tended to dart off from some of the games if they weren't exactly to her liking. (Rachel on the other hand, would have been happy to simply ride the merry go round and kiddie rides, but we did have her try a few things to get enough tickets for the cheapo prize.)

And she just keeps on improving..... The only 'episode' she had (and not even a minor tantrum otherwise) occurred after she managed to grab half a package of Dora fruit snacks Rachel had left on the back of the counter. I wouldn't even have known, but my mom saw her trying to hide the evidence (the little package) in the bathroom garbage---I was getting Rachel out of the bath. So, our pantry now has an industrial giant band of velcro to keep it closed (it's keeping Grandma out, too, so a bit too effective!). Half an hour or so after the fruit snacks Xian started screaming and had an hour long episode, which included loss of bladder control. So, I really do have to wonder what will happen tomorrow during the fructose challenge. If it's not the HFI condition they are checking for, I'm pretty sure that she's got some other sort of fructose intolerance going on, at least at a minor level. I'm also wondering if the increase in tantrums and minor episodes she had last week in the hospital were because of 'hidden' sugars in the foods that came from dietary (she ate porridge and always seemed to have a bad spell about two hours later). I'll be bringing food for all of her meals aside from the challenge tomorrow morning---and may try to get her out of the hospital in the early pm if at all possible and she seems okay.

Anyway, I'm pretty confident that what's going on for her is definitely not any form of autism or childhood disintegration---and that probably keeping her at home and on the current diet will continue her amazing recovery of skills and language, no matter what shows up in the tests. So, another reason to get her out of the hospital before they attempt feeding her a regular diet (which the psychiatrist was planning, WITHOUT communicating with the metabolic doctor!!!)

Will post something as soon as I can after her testing, but I know that some of the bloodwork will take some time to come back.

2 comments:

Joalni said...

What a joy to read this!!

I know it will be hard to avoid fructose/sugar but when the payback is Old Xian. Wow!

Good luck for the challenge - I don't know what to hope for - I guess it would be good if she does have a reaction, even though it will be difficult for her and you.

Joanna

Playful Platypus said...

Yes, double good luck and I hope whatever happens is enough of a "proof" so that all those #@!% doctors don't start doing more stupid things. Seems like maybe the low protein was avoiding some of the migraine triggers and fructose triggers...?? But not all, and if this is really IT you might be able to avoid the triggers comopletely (as long as you can keep that pantry locked...!) All the best, I'm thinking of you.

Roma