Sunday, May 11, 2008

Good news but no answers

Xian's metabolic tests were all negative, which is a good thing. However, she's still having reactions to specific foods/meals---which probably lends more weight to the neurologist's migraine idea. It does seem that she reacts to foods that are more processed/prepared---and she does seem to react fairly often to things with high fructose (or high fructose corn syrup). I've been gradually testing things out and now she's back on milk, yoghurt, plain cheeses, small amounts of chicken and seafood and I've been reintroducing a few more veggies and some fruits where there's a good glucose/fructose balance. In the last five days she's reacted to sweetened yoghurt (lots of added sugar in the ingredients) and some cookies. However, since I've had her on the B2 and calcium/magnesium, her reactions have been shorter and a bit less intense. I'm also testing out putting her on a couple of doses of ibuprofen during the day (cutting up adult tablets rather than using the sweetened kid's version), and that seems to also help the 'fog' lift. Xian's also recently wanted an ice pack on her forehead when she starts acting irritable, so things do seem to be pointing in the direction of migraine or head pain. Of course, the million dollar question is the cause. It seems pretty unlikely that migraine would have caused Xian to suddenly lose milestones, have swallowing difficulties, fine motor problems, sleep, urinary and constipation issues, and to lose language abilities and experience communication problems. Her sleep is improving---now she's typically getting about 11 hours a night (much better than the 7 that was the norm a month ago), the urinary and bowel issues seem to be resolving, and she's made dramatic improvements in motor coordination and awareness of what's going on around her. Her language is improving, but is the area where she's still got some distance to go to get back to her old baseline. Still, her articulation has improved (she's stopped slurring her words and saying things like "Mama-l" "Dora-l", "Grandpa-l") and I'm noticing that the times she uses the wrong (but related) word are less frequent, and the words are getting closer in terms of meaning. She's looking more focused and 'clearer' and has fewer times when she's looking dazed. She's back to being her cuddly self, though a bit more clingy than before---I do think her stay at the Alex and probably the whole compilation of confusing experiences has had some impact. It's been interesting to notice a few of her old mannerisms returning, too -- yesterday I saw her blowing her hair out of her eyes with a big puff of air and realized I hadn't seen her do that since sometime in early fall. Ironically, while she's continuing to make big improvements I'm sure her doctors are coming up with that late onset autism diagnosis -- I'll be cancelling her next psychiatry appointment. While it would be nice to get some sort of name for whatever she's experienced, I'm starting to feel like we're better off staying as far away from doctors and hospitals as possible. We do have an appointment with her urologist coming up, and an abdominal x-ray before then, but unless something unusual shows up there (a giant tapeworm? an alien 'implant'?) I don't think that we'll need any more follow up there. Xian will be getting some assessment done at the Glenrose preschool program she's attending---but given that she's improved so much from her earlier assessments (with the neuropsychologist, etc.) and with them noticing big changes in the three times she's been, I'm expecting that they'll probably want to wait a bit longer to do anything.

I have to really wonder if my gut feeling has been right all along --- that she picked up something or other when we were in China last year, or maybe even here earlier in the summer in various outings to the countryside.

We're off to a birthday party this afternoon (and even that tells you something about Xian's improvements--I'll just have to keep an eye on what she eats) and will pick up something special for mother's day dinner---so I don't have to cook. Hope everyone else has a good one!


SI said...

Does that mean she doesn't have a fructose intolerance? What a mystery. I can't imagine how frustrating it must be not to have any answers or a clear plan of action. Good to hear things are starting to improve even though you don't exactly know why.

Eliza2006 said...

Has anyone tested her for Lyme disease? Google Neuropsychiatric Lyme disease and look at the symptoms. My aunt was just diagnosed with this. No one, and I mean no one could figure out what was wrong with her. She was the Mayo clinic twice and they were stumped. I guess once it's progressed it can be hard to diagnose. Late stage symptoms beyond the psychiatric issues can be: irritable bladder, hormonal issues, night sweat, insomnia. It's at least worth looking into.
Here are some links that I found:
Good luck!


Linda said...

No hereditary fructose intolerance, though I think it's still possible she has a dietary intolerance due to whatever is causing problems in Xian's digestive system. Given the neurologist's idea that she's having migraines or migraine like headaches, it also seems likely that some food is a bit of a trigger---and high fructose sugars seem likely suspects.

And, interesting to hear the Lyme idea as I've been thinking about tick borne or mosquito borne illnesses because of the timing of Xian's first symptoms (late summer) and also a local case of a teenager who ended up finally being treated for Lyme -- his symptoms were quite like Xian's and it took them a year to get it diagnosed. I'm in the process of checking out a doctor in BC who has been recommended in terms of his Lyme expertise -- he's a doctor and also worked at UBC. The more I read about Lyme the more it does seem to account for Xian's strange collection of symptoms and fluctuations and it doesn't seem like something too difficult to check out.