Lily and the hospital

Today can be described in one word - blindsided.

It was Lily's sleep study follow-up appointment today.  After we all met up last week, I was feeling hopeful about the hospital appointment.  From everything that she said it sounded as if the doctors were finally beginning to use the word narcolepsy as a possible diagnosis.  Her thyroid had been tested and she had been referred to a fibromyalgia consultant who suggested that it may be sleep apnea or narcolepsy.  Hence the sleep apnea study.

I've never visited this particular hospital before, it's relatively new, very fancy on the outside, light and airy on the inside.  We arrived 15 minutes early for the appointment and I was impressed when Lily was called 10 minutes early.  I was introduced as a friend who was giving her some support.  Her consultant began to discuss the results from the sleep apnea test, negative, then I was impressed as he began to ask her the right kind of questions.  The kind that shows that he is considering narcolepsy as a reason for her E.D.S.

Lily sat and explained the very best that she could (through the sleep craving) what her day to day life was like.  How she remembered fighting off the urge to sleep while in high school.  How her need to sleep had steadily increased.  What a normal Lily day is.  Single parent.  Two young children, one on the autistic spectrum, both at school.  Her day starts at 7.30.  School run, do a couple of small errands, home by 10.30am, asleep by 11am (or if it's a really good day she can last until middday), alarm set for 2.45, school run, heat something up for them to eat because she has no energy and then bed around 11.  She explained that there is a short period during the evening that she feels a little bit more awake, but only if she has been able to have a nap that day.

He asked what happened if she was unable to nap over the space of several days.  Did she ever just fall asleep/unconscious without warning.  At the time, I assumed that he was ignorantly referring to cataplexy, as it was quickly followed up with him asking if she ever woke up unable to move while she was asleep.  She answered no to both but mentioned that she has very vivid dreams every time she sleeps.  That she had restless achy legs as she falls asleep.

Up until this point, I had been able to give Lily little pointers about the things she wanted to discuss with the consultant because she easily forgets what she wants to say or is unable to get her point across because she is so tired.  I don't just mean that she is physically tired, I believe she's mentally exhausted from continually trying to explain to doctor after doctor how tired she feels and getting absolutely no-where.  Up until this point, i was still hopeful (albeit rather less than before) that the appointment was turning out to be pretty positive. 

I've forgotten to mention here that I went to university at one of the top psychology departments.  My reason for study was to understand how the brain worked on a nuerological level. Ultimately I wanted to study at a university with a proper department dedicated to sleep study, but the nearest place was a 2 hour commute there, a two hour commute home.  Not really possible in my circumstances.  So every semester I picked all of the neuropsych and computational neuroscience subjects available.  My final year dissertation was heavily neuropsychology led.  I was so priviliged to be involved in an fMRI study.  I was actively involved in a control case scan, and given a side project of my own to collect, analyse and compare data from.  Shown how to use highly specialized computational software.  It truly was an opportunity no other undergrad had been given that year.

I also forgot to mention any of that to the consultant today.  It's not like I don't have the ability to talk to them in their own language.  I've lost count of the amount of times I have went with my husband to see his doctor/consultant, armed with the latest research about why my hubby should be trying a particular cataplexy med instead of what he was prescribed etc. and they had listened.

The sudden relevance to the university stuff???   When the consultant asked Lily to describe her bedtime without a word from me, he began to ask leading questions, something I understand to be pretty devious. He grasped on the fact that her short alert times occur at in the evening if she has napped.  Was she able to fall asleep easily every night?  Lily answered truthfully, no not every night, sometimes she falls asleep very quickly, sometimes she lies awake for a couple of hours.  He made his main focus about the nights she didn't manage to fall asleep straightaway.  Not once was she asked how many nights she felt like this, compared to how often she fell asleep pretty much straight away.  It had been made clear to me that he only wanted to hear from Lily.  I sat on one hand and clamped the other firmly over my mouth.

I did a quick mental recap over things that had been said while they talked.  The fact that there is a very obvious sleep problem was undisputable.  Is it narcolepsy?  I don't know, I'm no expert, but I knew the restless leg thing, the vivid dreams and the need to sleep excessively daily are all warning signs that every doctor should be aware of.  I was drawn back to his question about falling asleep without warning.  Had he been trying pretty badly to describe a cataplexy attack or was he under the delusional image of narcoleptics falling asleep face down in their bowl of soup.  If Lily does have narcolepsy then it's most definitely without cataplexy.  The E.D.S, fragmented night sleep, vivid dreams and restless legs are definitely pointers towards narcolepsy.

I'm so gob-smacked over what happened next that I can't remember the exact order of events.  I think he said, 'well, Lily, from everything you have said to me today I really don't think that you are showing any signs of narcolepsy'.  I lost my ability to stay silent.

"I dispute that. I agree she doesn't show typical signs of narcolepsy but she is showing 4 clear indicators", I piped up. "Oh I'm sorry, I didn't realise you were a doctor", he replied. Although the anger was building up inside me I calmly replied that no, I wasn't a doctor but my husband has narcolepsy and I'd done extensive research into the disorder. The friendly consultant pointed out that my husband is one narcoleptic, he had seen hundreds of them in his career and done his research too. I sat there, his words stinging in my ears, completely taken aback. He then turned back to Lily. He agreed that she might feel tired but he did not believe she was as tired as she was implying. We exchanged the same stunned expression as he carried on. "No Lily, what I believe is wrong with you is that your sleep pattern needs adjusting. You sleep through the day, therefore struggle to sleep at night which means you feel tired the following day.

He explained that he would send Lily for a blood test to rule narcolepsy out and arrange a sleep resistance test. A blood test? Yes, to test for HLA markers. But Lily isn't showing any signs of cataplexy, will the HLA test show anything if she only has narcolepsy, I asked. "Of course it will", was the reply.  By this point I was seriously beginning to doubt myself and my sanity.  I was tired.  I am so annoyed that I forgot to mention the university stuff now.  I'm so annoyed that I allowed him to make me doubt myself.  Lily asked what would happen if the tests came back as inconclusive.  She would be referred to one of two hospitals, both a fair distance away, for a polysomnygraphy and MLST.  I asked if the local hospital where my husband had those tests still did them.  According to him, they never have been able to conduct either test.  I asked about the other local hospital, again thinking I must have got it wrong.  Again he claimed that hospital has never done the tests.  Besides, he told us, they have no sleep specialist available at either hospital.  I hope he heard the sarcasm in my laugh when I told him that I was already aware of that.

I asked him that if he agreed that Lily was suffering from EDS was it possible to give her medication to help her stay awake through the day.  We were told that only one medication was available for EDS and it's nothing more than a supercharged caffeine like feeling, so there was no point.  Now, I don't know what other narcoleptics think about their Modafinil but the hubby definitely did not agree with his description.  A follow up appointment was made for the second week in December and we trotted off to the blood clinic feeling like naughty little schoolgirls.  We discussed his appalling attitude while waiting for them to take blood.  I cursed not having any internet access to quickly Google the effectiveness of an HLA marker test for narcolepsy alone.  And Lily told me this was how she had always been made to feel by doctors and consultants.  I was still stunned.  Maybe the doctor had reflected on the effectiveness of the blood test (although I very much doubt it) but he came to the blood clinic while we were waiting to tell us that he wanted Lily to wear an actigraphy watch.  No matter how he made us both feel at least the ball is definitely in motion to rule out/diagnose narcolepsy/some other sleep disorder.

 When I got home and spilled the whole lot out to the hubby he was mad at the way we were treated, mad that I hadn't mentioned the true extent of previous studies and research stuff but not too surprised at the consultants ignorant analasis and sleep hygiene lecture.  He may be a narky narcoleptic at times but he usually has a way of calming me down enough so that I can look at something from more than 1 angle. Yes, that doctor was arrogant, patronising and completely ignorant, but I guess in his eyes he saw and heard a couple of internet diagnosers.  That I was just some random who was trying to prompt Lily into a narcolepsy diagnosis based on a little bit of internet searching.

 

I dress a little quirky at the best of times, I had made an effort and wore a long skirt, a blouse but wore a pair of long stripy socks.  I might not have pulled the smart, semi-professional look off.  But that shouldn't have mattered.  Because Lily doesn't have sleep paralysis or cataplexy symptons he dismissed the possibility of narcolepsy, of any sleep disorder.  He truly believes that if Lily dropped the naps her whole life will miraculously be vastly improved.  What does he think, that she's never even tried that in all the years she's been feeling this way. All she wants is to be awake enough to live some sort of normal life.

I'm still mad at myself AND at the doctor.  I feel like I have let Lily down, let myself down.  Next time we meet won't be the same.  I have a problem with ignorance and narrow minded people.  Ignorance from a doctor is even worse.  Trusty Google gave me the medical papers to show him the inefficiency of the HLA marker test in Lily's case, that narcoleptics are very often prone to RLS and the efficiency of Modafinil vs caffeine (supercharged or not).  All things he shot me down for suggesting.  I'll wait until after the diagnosis and probable polysomnography appointment have been made though.  I might even slip him some research about narcoleptics that also suffer from insomnia.

Until I met this consultant, I had thought my husbands consultant was rubbish.  He isn't a sleep specialist which has been my biggest bug-bear.  At least he has always been willing to listen.