Sunday, March 30, 2008

A List

Of conditions, diseases and other things doctors have previously considered:

Seizure disorders, Rett's Syndrome, Fragile X, brain tumours, post-Measles encephalitis, fungal infections, parasites, numerous metabolic issues, thyroid issues, lead toxicity, a variety of other sorts of toxic exposures, allergies

The most infuriating:

Munchausen's by Proxy

I wouldn't have believed it except that I read Xian's chart during waits for various appointments in hospital. Um, yeah, a busy working single mom of two wants to make her child sick and have to scramble for care for the other child, risk loss of income and deal with overwhelming stress.... That also came at the same time they told me they would be checking for accidental ingestion of medications like ASA or Tylenol, and "Not anything like illegal drugs or anything." Um, that page of blood levels checking for cocaine, heroin, and the like was just something they wanted to put into the chart to mess with my mind? (On the show House they always say, "The patients always lie..." -- looks like doctors have that angle covered pretty well, too.)

The one that has caused us many delays in later investigations:

Just before she was discharged from hospital, at the end of December, Xian's pediatrician, a rehab doctor (who is not a pediatric specialist) and a group of psychiatrists decided that Xian most likely had some form of late onset autism or PDD (pervasive developmental disorder -- the form called "childhood disintegrative disorder"). The fact that she didn't seem "autistic" all of the time (she was very unresponsive mainly in the mornings, when those folks tended to do their rounds, but always has tended to improve as the day goes on, getting most clear in the evenings--something I continued to communicate, without much impact, obviously) didn't seem to sway them. Although I have a fair bit of experience with autistic kids (from my former teaching career) and could say with some authority that it didn't look like any sort of autism I'd seen, my comments got a condescending response that I was "Just looking for things I wanted to see" and "Avoiding the truth." Xian was discharged from hospital, plans for 24 hour video EEG monitoring was stopped and attempts to get her to see most other specialists seemed to slow. While in the meeting when they "announced" the diagnosis, they mentioned trying to get her seen by Dr. G, one of the experienced local autism experts (a developmental pediatrician) who they spoke about almost as a god. I was happy to have that happen, knowing it was the way to have this diagnosis definitively ruled out. He turned out to be a lovely man, who interacted with Xian, observed her interactions in relation to me and things like eye contact, and did a few simple tests after which he told me he was 99 percent certain that she didn't have anything on the autism spectrum, including a few of the rarer conditions that the other doctors had mentioned. He was the first person to take my food observations seriously (at that point I wasn't quite sure what was going on, but knew that she improved on days she ate less and had really sparked up the few times she'd been on clear fluids--I mentioned to him that she was fairly lucid/alert that day and curiously had eaten very little) and he gave me some of the suggestions that led to me figuring out what seems to be her food problem. He wondered if something had been overlooked or missed in her labs (and that's been mentioned enough since then that I think it's a good likelihood) or if having spent her first 15 months in a poor orphanage meant that she is a sort of Darwinian "survival of the fittest" sorts of kids and is fighting off something serious in a way that's rarely seen. (I agree wholeheartedly with that theory---many of her personality changes are reminiscent of things I've seen when she was in pain and/or feeling unwell, and she's always been a very strong, feisty "fighter" of a kid in terms of any setbacks. Also, her condition seems to regularly alter her pain threshold, so that she doesn't seem to feel pain in the same way she used to, at times.)

When we returned to the pediatrician with the news--our appointment happened prior to anyone seeing Dr. G's report--suddenly "the god" might not be such an expert after all and it was suggested we see a different autism expert, though she backed down when I challenged them and reminded her that I'm not unfamiliar with autism. But it did seem to put a wrench in the works in terms of getting anything to happen very quickly after that, and at that point I heard that neurology had "dismissed her case." (Though we now have a follow up appointment.)

The "well we can't think of anything else so let's pin it on adoption!" angle:

At Xian's last appointment with her pediatrician, she mentioned that the psychiatrist that has seen Xian had consulted with another senior psych who generally sees the 'under five' set. Note that "senior psych" never saw Xian and never spoke with me... The latest "theory" is that our trip to China caused some sort of path towards psychosis/disintegration caused by....drum roll, please: "trauma related to Xian's early life in the orphanage and her adoption!!! " And, so what's the explanation for the fact that she was fine for months before her first symptoms showed....? Or that one of her best experiences during our trip was playing with the nannies at Rachel's orphanage...? (I've always figured that, while she was certainly underfed and understimulated while in her SWI, she held the nannies in fond regard and they were fond of her as well---this was evident when I met them and received her, and in her grief stricken cries for 'ayi! ayi! ayi!' those first days with me, and her tendency to gravitate to Chinese women who resemble her ayis.) In fact, her trip seemed to answer some of her questions about her early life and also to give her a bit more of a sense of herself as a Chinese girl who was born in China---by the end of our trip, the girl who was normally a bit reserved with strangers was gleefully playing with market sellers and approaching people in public like they were long lost friends. So, nope, don't buy that one!

I'm gearing up for another appointment with Xian's psychiatrist this week---and wonder how Xian's new symptoms (more on that, later) which are highly physical and not dismissable (is that a word?) will get explained away in that scenario. Now, as I've mentioned before, I do think the trip may have played a role in terms of physical stresses on her body after her encounter with whatever nasty microbe she ingested in the bathwater or maybe at the buffet---the rest of us were fine, however, and she'd had Dukoral prior to the trip so that seems a bit less likely, and towards the end of our trip I got a bit relaxed about her bathtime and stopped being quite so vigilant (since I was usually washing out their clothes in the sink). If she did there what she used to do at home, the bathwater was the culprit. She's a good traveller and has always like airplanes and hotels. Truthfully, during our stay in Qinghai, she was the one thrilled about "Our hotel home" as she called it, while my mother and I both gritted our teeth and tried to pretend we were camping. She was pleased as punch to finally get her sister, and while she did have her bad moments, they were mostly linked to jet lag, big noisy crowds (and I'm talking the kind where you can't have a conversation), a "scary" mannequin in the hotel, and a bit of upset when we received Rachel in the Civil Affairs office (which I suspect brought back some vague memories of her own Civil Affairs experience). She had a lot of fun with Chinese TV, playing with Grandma and "doing art projects", taking photographs of her experience with disposable cameras, and watching DVDs of her favourite Disney movies in Chinese.


Norma said...

I can't imagine all you have gone through - all the pain you feel for and with your daughter! Thanks for keeping us all updated and know that you will be in my prayers.

Susan said...

Has she been checked for some sort of neurological/brain parasite?

This is probably a "stretch", but with all of the brain tumor symptoms, yet no brain tumor showing on the MRI, one has to wonder.

Linda, I really hope that you get to the bottom of this very quickly.

Hugs to you and yours,

Linda said...

Yes, I was told that if she did have a parasite something should have showed up in her lumbar puncture---either growing in one of the samples or as general inflammation. But Xian's FSCD social worker keeps mentioning a "House" episode where there was some parasite that only showed in an x-ray. Not sure if that's an accurate story, but I do have to wonder sometimes.

Joalni said...

Hi Linda, Joanna here from the SMC Board. Just reading more of your posts - I think of you and Xian a lot.

I didn't see pituitary issues listed in the possible diagnoses, yet that is what jumps out at me - these puberty and growth issues especially, on top of everything else.

Certainly doesn't sound psychiatric to me!

Have you heard yet about an appointment with Mayo? I just so wish you'd find someone who makes sense of it all - have to admit I did smile at the "House" reference - it is so like an episode of that show, except that there they get a diagnosis in a few days! I wonder who the medical advisor to that show is???Hmmm....