neuro today, gone tomorrow

I saw the new neurologist yesterday.  I saw him once before, this is someone who was trained in autonomic function and who has opened one of the only autonomic function labs at a hospital in my area.  Yesterday’s appointment was a follow up to talk about blood test results (negative) and where to go from here.  Oh and to let me know that he’s taking a leave for at least a year because his mother is sick.

Crap.

I liked him.

This is the second neurologist I’ve had since moving back to Big Historic City in 2009 who has left his practice.  He’s trying to do it right.  He says that the practice is going to try to find someone with autonomic dysfunction training to replace him and that he’ll be here until the end of April, asked me to check in by phone or email before then.

So what’s new from the appointment?  Other than “Good bye new neurologist?”  My bloodwork was negative for Antiganglionic acetycholine receptor antibodies and antineuronal antibodies.  That’s good, it means it’s unlikely that it’s cancer and less likely that it’s autoimmune autonomic ganglionopathy.  Then what is still on the table, Mr. Patient asked my soon to be former neurologist.  The most likely is the Ehlers-Danlos, other than that, there’s also mitochondrial disease – it’s hard to diagnose and not very treatable.  Well, better the devil I know, so I’m going with Ehlers-Danlos.

One interesting thing that did come of this appointment.  Sleep.  I don’t sleep well anymore, had a sleep study and I saw it as relatively useless since it just said what I knew going into it:  I don’t sleep well. I fall asleep but I wake up a lot, so much that it basically turns my night into a series of small naps rather than good, restful, sleep.  My soon to be former neuro said that he’d been trying to get the results of my sleep study but failing.  “Oh I can get you those” I say.  “They recommended a follow up study with a CPAP because I guess they say I might have upper airway resistance syndrome….whatever, I just wake up every night in the middle of the night drenched in sweat.  I doubt it’s gonna help that.”  Turns out that I am very wrong about this.  I should have realized, I don’t sweat.  Unless I’m passing out.  That should’ve been a clue that the waking up in sweat was something other than being overheated.  My soon to be former neurologist explained (and I won’t do it justice here, so pardon my paraphrasing):  when you have something like sleep apnea or upper airway resistance – they’re really kind of the same thing, just a little difference in the mechanism and severity – it can activate a sympathetic response (hence the sweating).  There’s also evidence that it can contribute to the development of cardiac arrhythmia.  Hands up, who just had two weeks of intense palpitations and a racing heart rate for no good reason?  Oooh, oooh, me!  I did.

Ok, to sum up, what he’s telling me is that the waking up drenched in sweat is probably caused by the airway obstruction rather than in addition to (which is what I thought), and that this potentially has much further reaching consequences than a bad night’s sleep.  I’ve done a bit of reading since the appointment, and it sounds like it’s a sort of “chicken or the egg” thing with regard to autonomic function too.  I.e. bad one makes for bad other, although which one comes first is up for grabs.  But maybe fixing the sleep could help with some of the autonomic function.  Gosh that’d be swell.

Now, I just need to get my ass into the sleep lab in the next week or two and maybe this will all have been worth something.

23 and me and them

I got a “23 and me” kit for my birthday from my husband, the sweet man.  He got one for him too.  For me, it’s a chance to find out a little more about my ancestry, since my mother was adopted and although she found her birth mother when I was a teen, her birth mother is not reliable on matters pertaining to her birth father.  My mother contacted her birth mother A. shortly before A. was about to move to the Southwest.  My mother went to see A. at some big family get together, she went alone.  I don’t recall whether there was discussion about any of us coming.  She came home glowing, with a long rope of a pearl necklace in a leather bag and a black and white picture of two distant looking people in long coats at a beach wall.  There were dramatic stories of how she was given the necklace by A., my mother dramatizes everything.  And there was the story of the picture, which was A. and the man A. said was my mother’s father, Mr. Coffee.  From Ireland.  “Mr. Coffee?  Are you kidding?  And also, “We’re fucking Irish?”

We’d gone through early school years in an Irish-heavy area.  Each St. Patrick’s day, it was a tradition in my elementary school to hang up construction paper shamrocks with the kids names, but with an “O'” put in front of the last name.  There was a sizeable number of “O’Italiano” names up there, mine being one of them, along with the “O’McGowan”s.  Sure, we knew that our grandma on our dad’s side had an Irish dad, but in a city where kids whose claim to being Irish came with parents with brogues, siblings back in Ireland, and weekly step dancing lessons, having a granny who is half Irish barely counts.  Plus, the Italian really just kind of overwhelms when you’re from a half Italian family, as my dad was.  So hearing in adolescence that our mother’s father was also not just half Irish but “Straight off the boat (and straight back on again apparently)” Irish was a strange counterpoint to all those childhood years of being “not Irish” when being Irish was really important.

But then the years went by and A. got older and stranger.  Not too many years ago, A. saw my brother at a visit.  During a phone call with my mother shortly after the visit, she said “You know, looking at (your son) now that he’s grown up, I’m not so sure Mr. Coffee was your father, because (your son) looks just like that guy from the party, you know, what’s his name, Chico’s friend….”

So this is a chance to find out.  Is it Mr. Coffee or is it “Chico’s friend”?  Not that this will say definitively, but if it’s Mr. Coffee, then presumably Western European  is going to represent strongly since the rest of my family tree is relatively well known, although A. herself is something of a mystery, one side traces back to Mayflower days but there is one reference to a “french canadian” great grand something and where I grew up “french canadian” was also what old fashioned, up tight WASPy people said when their WASPy New England family bloodline held some Native American.

And speaking of surprises…the second very special specialist was not bad.  One of the things he said was “I am wondering if you have a form Riley Day syndrome, it’s more common in people of Ashkenazi ancestry but…”  So I told him “Not Jewish, that I know of but my mother was adopted and we really don’t know anything about her father” and my husband chimes in with “But we’re doing that 23 and me thing”.  And to my surprise, the doc was actually enthusiastic about that.  Really, I was truly surprised because I thought “oh god he’s gonna think ‘crazy hypochondriacs!’ if he hears that we just did that”  He seemed to truly think about what might be up with me, and yes, that glorious letter that my primary care wrote helped, a ton.

Also helpful, I think, is that my husband got his work ID badge redone.  He works at Big Daddy BATH, and had originally started as affiliated with psychiatry, although what he does has nothing to do with psychiatry.  Now, his affiliation is more appropriately Neurology, so he got his badge redone to reflect that, and it reads “Mr. Patient PhD, Neurology, Granddaddy of all BATHS”  He should have added “bow to me ye mortals” to the tag too.

I do not have an answer, or a treatment plan. I  do have a very famous doctor who promised to look up some more stuff that fits what’s up with me, who said he would make his recommendations for screening and testing to either of two Autonomic specialists I wanted to go to with his referral, who said “Your primary care is right, EDS can cause some of this, but – and I’m embarrassed to say this – I don’t know how much,” who did not blow off the autoimmune stuff at all, who said that what my hands and feet do sounds like erythromelalgia (he’s the first person other than me who has said that), who discussed the possible diagnoses that he thought fit at first glance and what the treatment options would be for them.  And who thinks 23 and me is cool.   Not bad.  I’m seeing someone else, oh yes, the march continues, in December.  At least, December is when I’m on the schedule.  I will be a pest and try to get in sooner.  And I will definitely bring Mr. Patient, PhD and his magical ID badge with me.

Down a quart

Had bloodwork yesterday.  This is bloodwork ordered by my PCP and when that man orders bloodwork, he does not mess around.

Anti-ganglionic antibodies and a host of immune tests…I think I got all the complements drawn, crazy shit the lab had to look up.  This is because you’re not supposed to get chronic mucosal thrush infections, apparently, with an intact immune system.  So we’ll see how this goes.

sometimes you eat the bear…

As a wiser man than me once said.

Yesterday, I did not eat the bear.  Yesterday, I saw the not very special specialist who has very selective hearing.

Why selective?  Because she apparently missed the part about the not sweating, although she did ask my husband “what does the sweat pattern on the back of her shirt look like” and my husband did say “she doesn’t have one anymore.”

I am in a foul mood.  The not very special specialist ordered a bunch of tests, only one having to do with pathology (direct) of the autonomic nervous system and when I called back to ask about an acetylcholine receptor antibody test, the answer (relayed by secretary) was “she didn’t order it because it’s not needed.”  Either she doesn’t feel I’m sick enough or she just doesn’t listen.  I am proud of myself for one moment.  During my history, after I had explained the vertigo that started in 2005 in response to her questions, she asked “did they do anything else after the MRI?”  I said “No”.  She looked at me sort of curiously and with what I interpret as incredulity “what did they say it was?  Did you see a neurologist?” “Yes, and like I said, he did an MRI and told me it was normal and that it was probably benign whatchacallit vertigo, or probably my migraines and had me take more migraine meds.”  She shook her head.  This happened in relation to two things, something else aside from the vertigo, I think the massive weight loss in 2005.  So later, after she told me that she didn’t think what was going on with me now was properly autonomic because I felt the skin pricks that she did on my legs, she commented that I didn’t look ok.  “What’s wrong?” she asked.  I said “I’m just sitting here thinking about how in five years I’ll be in some other specialist’s office telling them about the autonomic symptoms and how they got so much worse in 2013, and they’re gonna say ‘they didn’t do anything?'”

She kinda looked like she had a bad round of gas at that moment.  Yeah, I fucking went there lady.  Deal with it.

Oh another priceless moment that I’d like to frame.  After she tells me that it’s good news that there doesn’t seem to be much wrong with my autonomic function (because I felt the skin pricks, she was very firm about that), I said “I suppose it is reassuring that I won’t have to catheterize myself in a year to pee.” and she says, no lie “well I didn’t say that.”

No really, she did.

So for review, let’s list my symptoms that are not autonomic, according to the not very special specialist.

  • Dizziness and lightheadedness
  • Fatigue
  • Tingling and tremors in extremities
  • Extremely low blood pressure
  • Syncope and near syncope
  • Tachycardia (POTS)
  • Bowel dysfunction/constipation
  • Rather sudden onset gastroparesis with 12 lb weight loss in 3 months
  • Hypohidrosis
  • Dry eyes
  • Chronic oral thrush, suggesting a rather dry mouth
  • Heat intolerance and flushing
  • Erythromelalgia

I do not have much hope that the next very special specialist will have much else to do or say either.  I guess I just don’t come across as sick enough.

getting it wrong

I finally have my appointment with the runner up very special specialist today.  I’m not sure that she’s very special, but she did a fellowship at the BI-BATH’s autonomic center and she’s who is available, so off we go.  For an 8:00 appointment.  It’s costing me work cred and bowel function so golly I hope it’s worthwhile.

In preparation for this appointment, I got a copy of the tilt table test, the most recent one for which my PCP wrote a short but thorough referral citing the gastroparesis with significant unintentional weight loss, hypotension, orthostatic intolerance, and references the 2010 tilt test with syncope in his a request for a work up for autonomic dysfunction.  On this year’s tilt test, in the “referring Dx” section, it says simply “lightheadedness”.  Well that’s not right.

I think today, for the first time, I will actually go in armed with papers.  I don’t usually do this because my sense has been that it puts doctors off.  But there are two really specific things that they need to check on and playing the “not too knowledgable” patient has, so far, not gotten me very far.  Here’s the Mayo clinic’s Autoimmune Dysautonomia Evaluation Testing Algorithm and the Mayo Clinic’s Paraneoplastic Evaluation Algorithm.  A bit of overlap, which means a bit of “two birds, one stone”.  Shouldn’t be too tough to run, I just need someone to order, interpret, and follow up.

Here’s hoping that’s what I get.

damned if you don’t

I’m in another pickle at work.  My long awaited very special specialist appointment is Monday.  Monday also happens to be the ONE day all summer that absence will be exceptionally remarkable, because Monday is “Staff Retreat Day”!  An exciting several hours of hearing about how each department is soooooo busy and about what exciting student development programs and employee participation programs we can all get involved in.  I won’t say much more about that other than there are very few employee participations that I can participate in these days, much to my and my employer’s (rather differently based) consternation.

The staff retreat is only a half day, for a change.  Great news!  Um, no.  Because the half day that it occurs in is the same half of the day that the very special specialist is available to see me.  I have an appointment at the shockingly early time of 8:00 with the doc I’m calling The Runner Up.  She is the one I am seeing because none of the three “bachelors” I was trying to get in to are available until the Fall.  She is also, I’m told, very pregnant.  I’m told this incidentally by the scheduler at the Autonomic center at BI-BATH, “That’s the last day before her maternity leave”.  Oh.  Good.  So I get the runner up who will be high tailing it out of there after my appointment.  Uh, who’s gonna do follow up?

I’m trying to see it as a foot in the door.  As someone to order the damned bloodwork that will, hopefully, shed some light on whether my body is attacking itself for no good reason (chronic autoimmune disease) or for a good reason (cancer provoked autoimmunity).  Either one is a rarity, however I fit the symptoms and presentation to a T and have several history factors which make either a strong contender.  Lucky me.  So someone needs to look into it.  Either has a bad prognosis.  But they do have treatment options, all of which get less good in terms of halting the progress or recovery of function the longer you wait while your body destroys parts of your autonomic nervous system.

You can see why I am hesitant to wait another week let alone month or season on this.

Here’s the pickle though.  I told my boss about this and her comment was “(big boss) isn’t going to like it.”  Yes, I know that.  Thank you for the news flash.  But see, the reason I was telling you was that I want to know how to approach getting permission to go to this without it being a big red mark on my record.  No help from boss.  I explain about the cancer thing.  Ah, ok, now she says “You should go to the appointment.”  Right.  My thinking exactly, but still no help on what I’m asking about.  So I say “Would it help if I talked to (big boss)?”  Boss’s response?  “Maybe….”

Jeeeeeeeeeeeeeeeeeeesus.

I had been waiting in the hope that a cancellation would come through.  I’ve called the very pregnant very special specialist’s office three times in two weeks to nag them about me.  Sympathy, but no movement on the appointment.  Which leaves me now back where I started, do I talk to Big Boss about this.  I had been trying to be deferential to (immediate) boss’s authority and judgement but I think that she’s essentially abdicated her responsibility here, which leaves it up to me.  I think I’m going to do it.  If immediate boss is to be believed, Big Boss has been a source of some of the more problematic elements of accommodating my illness at work so maybe this can be a good thing.  So that’s on deck this week.  That, rescheduled meetings I’m not looking forward to, a GYN appointment to discuss my having turned into a wet nurse, and well just all kinds of fun.

I am not a toucan

It’s god damned hot again.  As a delightfully vulgar young woman puts it in this viral video, “it is ninety one thousand damned degrees”.  This video is not safe for work (come to think of it, neither is this blog so fuck it) but it is cathartic for those of us suffering in these back to back heat waves.

I have today off.  What to do?  Not much.  Painted my nails.  They are deliciously frosty looking now.

Two medical appointments yesterday.

First appointment:  Didn’t pass out on the “tilt-a-whirl” test, as one of my friends called it.  Did get damned tachycardic though, and damned hypotensive.  And sweaty.  The only time I can sweat now, it seems, is when I’m feeling the faint or in the middle of the night.  Asked how long to get results to my primary care.  This is very relevant since the way this lab/center at BI-BATH works is that you can’t even make an appointment to see the neuropathy doc until (a) you take a ride on the tilt-a-whirl; (b) you have an abnormal ride; (c) they send a report saying that to your referring doc; and (d) your referring doc says “yes, I do want you to see my patient for a consultation please”.  I already had one abnormal tilt-a-whirl test with these guys, but that’s too old apparently.  So how long is “about a week”?  And when I called two weeks ago to start this whole process, they told me the neuropathy doc was booking into October.  How far out will he be booking by the time we get to step (d)?  Simple math will not suffice here, btw.  This is not a simple additive equation.  There are too many variables which are deeply non-linear.  Fuckwidgety.

Second appointment:  PCP to talk about “not negative” results.  They weren’t kidding.  What I had was a screening for anti-neuronal antibodies which are associated with gastroparesis, i.e. autonomic neuropathy.  From what I can tell, these antibodies are prominently associated with paraneoplastic syndrome, meaning some people make them when their immune system confronts a couple of specific kinds of cancer.  Usually early cancer, but not always “good” cancer…like small cell lung cancer. Typically inoperable and a shitty, shitty prognosis.  I’ve spent some time looking to see if these antibodies are associated with other syndromes/causes, you know, NOT cancer.  Some, I think.  I don’t really understand the immunology stuff, and you combine immunology with autonomic neurology and I’m like “?”  Well, got to the appointment and got the results.  They weren’t kidding. They were not negative, but not positive.

  • Quest Anti-Hu AB screen by IFA, abnormal:  fluorescence noted.
    • Reflex Western Blot:  negative.
  • Quest Anti-RI AB screen by IFA, abnormal:  fluorescence noted.
    • Reflex Western Blot:  negative.

See, from what I can tell, the test is a two phase test.  Stage one is IFA, which I think means (?) Immunofluorescence Analysis.  I was positive for both on that, although I thought for those they gave titers, like “we diluted this shit x many times and we still saw something”.  Maybe that only works for ANA and not ANNA.  The next stage is a western blot test, if they see something on the IFA test.  I was negative for both antineuronal antibodies on the western blot.  But, even if I am interpreting that right, what the fuck does it mean clinically?  PCP doesn’t know.  He wants me to see someone who specializes in “inflammatory peripheral neuropathy” which is a fancy way of saying “a specialist who knows about what makes your body’s immune system attack your peripheral nervous system”.  Here’s my really limited breakdown of the results, which may not be correct:  A thing which binds Anti-Hu and Anti-Ri antibodies bound to something in my blood, but a thing which binds ONLY anti-Hu and anti-Ri antibodies did not bind to whatever is in my blood.  

So now we wait for someone to agree to see me before October.  Cheeeeerist.  And meanwhile, at work, HR has decided that we all need to dial back the AC because of the energy usage is too high.  They are sending emails left and right appealing to environmentalism, but I suspect its as much about money (if not more).  Will I go in to work to an 80 degree office?  Who knows?  Maybe.  I read that our HR director is asking building management to make “minor adjustments” to centralized building cooling, but that “Comfort should not be affected to a large degree.”

This is not about comfort for me.  It’s about safety.  To quote the “it’s hot as hell” star,  I did not sign up for this.  I am not tropical.  I’m not a damned toucan.

results

With a chronic, mystery/rare illness, you get used to negative results.   Especially in the early stages, and of course you know that “early stages” can span years.  A 2010 paper in the Journal of Neurology puts the median time from onset of first symptoms to diagnosis of multiple sclerosis at 24.9 months.  A 2006 article in the Journal of Rheumatology gives a mean time to diagnosis of 2.4 years for Scleroderma.  So you get used to hearing “your bloodwork was normal…” over and over.  Often, this news is delivered by phone, and I do appreciate that, often.  Not always. When you’re not one of the “worried well”, a negative test does not mean “whew!” it means “Well ruled that out I guess.  Now what?”

I had bloodwork done about two weeks ago for antineuronal/antineural antibodies.  The reason I asked for  this test is two-fold:

  1. My primary care had been beside himself with my GI doc’s apparent acceptance that my body just does gastroparesis now.  “That doesn’t happen just like that, not unless you were poisoned or something.”  I explained to the PCP that I have had some symptoms, like early satiety, pain after eating, nausea, pantoprazole refractory heartburn…all for a while, all of which I minimized or explained away.  Nausea?  Migraines.  Early fullness and abdominal pain after eating?  Don’t eat enough because of the lower gut triggering effects and my stomach shrunk.  Pantoprazole not helping with the heartburn?  Must have eaten something bad, better take it easy for a few days, no chocolate or tomato.  I’m very good at minimizing and explaining.  Also, I pointed out to PCP, GI crap goes with EDS and with what I can only loosely called “autonomic fuckery”.  So I was sort of primed to accept the GI doc’s apparent resignation about not digging around for addressable causes for this.  Not happy about it, but not really ready to take it on.  Not then.  Still numb.  But now it’s been a few months.  Now I’ve been eating a liquid diet for a while and I’ve lost a lot of weight and any deviation from this diet plus reglan brings the severe symptoms raging right back.  Now, I’m kind of ready to ask “wtf?”
  2. Back in April when first researching gastroparesis, I found a reference or two that paraneoplastic syndromes from certain cancers can cause it.  After the PCP kinda freaked out in June, I looked this association back up and found quite a few references to it (e.g., this paper, “Small cell lung cancer with positive anti-Hu antibodies presenting as gastroparesis“).  I should mention that I had actually initially thought of asking the GI doc for a blood test back in May, but again, see the end of (1) above for why I didn’t.  But since PCP wanted to look for causes, I took this to him.

That brings us up to the bloodwork, which my PCP ordered after I brought my request for it to him, and which I had drawn on June 26.  I’ve found that immunology stuff usually takes at least a week, this was really the first chance to check in on it. So I called today, left a message, expected phone call back saying all was normal.  Instead, I got the RN telling me “we got your labs back but I can’t explain it, he says he wants to see you.”  Soonest I can get in is next Wednesday, the same day I’m having my tilt table test and a day before the inlaws arrive (oh yes, the inlaws are coming).

Well this is going to be a tough week to get through.  Hoping a PET scan is not in my future.

what’s up

Been a while since I’ve given a summary of what’s up medically these days.  So many scattered bits, hardly a narrative.

Doing a(nother) neuroendocrine tumor work up.  This time for carcinoid, not pheochromocytoma.  My understanding is that they are both types of neuroendocrine tumors which can be similar in effect but are not necessarily the same in things like what cells they originate from and where they tend to crop up.  The bloodwork was “within normal limits”.  Now I just need to be off caffeine long enough to to the 24 hour urine collection.  I’m saving that for post-scopes.

Having an upper endoscopy and colonoscopy on Monday.  “Can you do them both together?” I asked, half joking at the GI appointment in September.  Surprisingly, the answer was yes.  It is the one teeny bright spot in what is otherwise getting me way down.  I’ve only had two colonoscopies…or possibly one.  No, maybe two.  Anyhow, for someone with chronic diarrhea and weight loss, they do them and they do them more than once.  This is because things can be missed in one, because things that might not have been visible in one could grow or become more pronounced.  So off I go for another scope.  I HATE the prep.  Hate it deeply.  This time, I’m doing the horrible high volume PEG prep.  I do not like the PEG prep.  It starts tomorrow and as I’ve gotten closer to it, my mood has incrementally gotten more rotten.

Seeing a special mouth/oral diagnostics group in January for the recurring mouth thing…whatever the hell it is.  It sucks.  It’s painful, and my primary care and the GI doc both got a good look at it earlier this Fall and would like this checked out.  The dentist did too, and had been thinking of sending me to exactly the same group but (a) he latched on to the fact that I smoked and said it was probably just that and (b) it went away, as it does, so he decided it was all good.  Problem with it going away is that it doesn’t go away for good.  My money’s still on candida.  A search on erythematous candidiasis turns up images and descriptions that are quite similar to what I have.  If it is candida, it’s acting resistant to the usual remedies.  And a recurring, resistant, atypical candida infection suggests that my immune system is not as it should be.  I’m not on any immune suppressing drugs, I don’t have HIV, and although my antinuclear antibody tests routinely come back elevated (1:160), they are not so high that you’d jump up and yell “my god, it IS lupus!”

Dropped off my accommodation forms with my PCP.  This is for work accommodations, and quite honestly, some of them are silly.  Not silly as in frivolous, silly as in I shouldn’t have to ask for this as an accommodation, e.g. a lunch break without demands that I stop eating and work.

Chest pain is better finally, but holy crap, my arm still hurts from my flu shot.  It’s been WEEKS and I can’t move it up, across my body, or back (forward to a point is ok) without it absolutely killing.  Advil and heat help.  I’m supposed to check in next week to let the PCP know if it still hurts.  I like the RN who gave me the shot and feel bad I had to tell her that it screwed me up.  I’m assuming this is just a “oops we hit a part of your muscle that is testy” thing and hoping it will go away eventually.

So…following up with endocrine and GI in December.  Mouth appointment in early January.  I think that mid January would be a good time to do a “where have we been, where are we now, and where are we going?” appointment with my primary care.

consent

The capacity in which I deal with consent processes is quite different from the issue at hand in the story below. The people I am obtaining consent from are in a research setting, not a treatment setting. Thus, in the contexts I am most familiar with, the issue of withdrawal or refusal on the part of the patient/participant is to be assumed a basic right. As a researcher, I am very careful to not only explain this but to make the environment felicitous to such a choice on the part of the people who reply to recruitment for our studies. As a teacher, I give my students examples of behavior which would constitute a “cost” for withdrawal, such as adopting even a negative tone of voice or posture with a potential or actual participant.

My point is, I am biased. I realize that this withdrawal/refusal bias is not quite appropriate when it comes to medical treatment as opposed to behavioral (or medical) research. So I try to keep that in mind as I turn over the story below about a mother who refused two (related) types of Lupus treatment for her minor daughter. Still, I can’t help feeling that the choice to bring neglect charges here was a poor one. How much information was she given? And most importantly, were the medical providers aware of and sensitive to the reality of this woman’s distrust which was fueled by – if not entirely based on – the suffering her daughter was experiencing?

It’s not the best written story. As with any media account, there is trimming and fluffing. I’ve taken out what seems to be fluff but I can’t make up for the lack of information. Still, it’s the only story on this case out there at the moment. It’s a tragic situation, one I can’t help relating to somewhat since I also have trust issues with medical providers which have lead to some very and I’d say inappropriately contentious encounters. I can only imagine I’d be the same way if I had a kid who was sick.

I present the information in the article as food for thought. The issue being not whether the mother’s judgment was correct or incorrect but whether the issue of patient or patient advocate/guardian trust could be better recognized and better addressed in such situations.

Excerpted from the Hartford Courant
Girl In Medical Dispute Dies
By Hilary Waldman and Colin Poitras, Courant Staff Writers
March 12, 2008
Chelsey Cruz, a 15-year-old who ended up at the center of a custody battle between her mother and the state that left each side accusing the other of harming her, died suddenly Tuesday.

The state Department of Children and Families last August filed charges of medical neglect against the girl’s mother, Kimberly Castro, and took custody of the East Hartford teenager.

Castro had disagreed with three teams of doctors who treated Chelsey for lupus.

DCF stepped in following a complaint by child welfare authorities in Massachusetts. Chelsey at the time was being treated at Children’s Hospital Boston.

Doctors from Connecticut Children’s Medical Center in Hartford and Yale- New Haven Children’s Hospital had filed complaints with Connecticut authorities, contending that Kimberly Castro was hurting her daughter by objecting to the treatment they recommended. Those charges did not stick.

After the Boston complaint, however, DCF placed Chelsey in the custody of her grandfather, who agreed to follow the doctor’s orders. Both sides were awaiting a final ruling in the case when Chelsey died.

In an interview last autumn, Chelsey, an honors student, said she felt her mother was acting in her best interest. She said her biggest wish was to go home and be healthy.

“I feel kind of angry that I’m not able to be with my mom right now,” Chelsey said in October.

Michael Perez, Castro’s court-appointed lawyer, said Chelsey was taken to Connecticut Children’s Medical Center Tuesday morning and probably died of cardiac arrest caused by sepsis, an overwhelming infection that can shut down the body’s organ systems very rapidly. Perez said an autopsy is planned to determine the exact cause of death.

The dispute over Chelsey’s care began almost six years ago, when doctors at Connecticut Children’s Medical Center diagnosed the girl with lupus, a disease in which the immune system mistakenly attacks the body’s healthy tissue.

Chelsey, her doctors said, had a serious complication called lupus nephritis, which can cause devastating kidney damage. They prescribed steroids and an immediate intravenous infusion of Cytoxan, a drug approved for cancer treatment that has shown promise in stopping or slowing immune system attacks in lupus patients.

When Chelsey continued to be wracked by complications, including abdominal pain and diarrhea, her mother lost faith in the doctors at Connecticut Children’s Medical Center. Castro transferred Chelsey to Yale-New Haven Children’s Hospital. There, the doctors found that Chelsey’s kidneys had failed.

They blamed the lupus, but Kimberly Castro blamed the medication.

At Castro’s request, the Yale doctors switched Chelsey to a newer form of treatment. But that, too, caused serious side effects and Castro objected to that, too. That’s when Yale called DCF, accusing the mother of medical neglect.

After an investigation, DCF determined that Castro simply no longer trusted the doctors. As a compromise, DCF and Castro agreed that Chelsey’s care be transferred to Children’s Hospital Boston.

But it wasn’t long before the same fight Castro had at Connecticut Children’s and Yale broke out in Boston. Castro did not want any more Cytoxan or the alternative drug, Cellcept. The drugs, she said, were killing her daughter.

After a lot of angry back-and-forth, an order of protection was signed in Massachusetts in late August. Until Chelsey was returned to her grandfather’s home in East Hartford, a uniformed guard was posted outside her room in Boston to prevent Castro from taking her daughter out of the hospital.

Perez said a Superior Court trial on the medical neglect charges had just concluded in February and that Castro was awaiting a ruling. And he said, she remains convinced that the strong medications were too much for her daughter.

“Ms. Castro strongly believes there is a connection between the drugs that were being used and the results today,” Perez said.
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