More Medical Maelstrom

When Phd = Phucking Horrible Doctor

I thought my first post back after BlogHer@Home was going to be a wonderful “we had such a good time, thanks everyone, thanks sponsors” touchy-feely post.  I did sit down to start writing one this morning.

Yeah, that was before my morning turned to crap thanks to a doctor who has her head so far up her ass I’m sure she can see her own tonsils.

A bit of background here.  (And if you don’t like TMI, skip this paragraph).  Vista suffers from chronic constipation and, unfortunately, sometimes her bowels get completely blocked and back up into her stomach, which then causes her to throw up.  A lot.  The past couple weeks we’ve been trying again to slowly ween her off formula and onto rice milk.  The previous two times we tried the switch resulted in a bowel blockage, so we were trying a very slow introduction this time.  Well, it didn’t work.  So we’ve been dealing with a bit of puking the past few days while we get her sorted again.

So… on to idiot doctor story.  We were supposed to have an appointment with Dr.C today to have some assessments done for Vista to try and access some resources in the big city that aren’t available to us, living in a small town.  Half an hour before we were to leave, though, Vista started throwing up.  So I called the doctors office and apologized profusely saying “I’m so sorry.  I know this is short notice, but Vista is throwing up, so there’s no way I can make the hour drive into the city.”

No big deal, right?  Yeah, you would think.  Well receptionist puts me on hold and Dr. C gets on the phone.  I start explaining how sorry I am that I can’t make it in.  But driving with a puking two-year-old is out of the question.  The doc quickly cut me off and what she said next made my blood run cold.

“I don’t think you understand the importance of this appointment.  If you miss this appointment no one is going to want to help you.  And quite frankly, I am deeply, deeply concerned.  It is critical that you make this appointment today”

<insert me trying, once again, to explain the logistics of a one hour drive in a hot truck with a puking child>

“You have a decision to make.  If you decide not to attend this appointment, then I have no choice but to discuss this with **** {the other person we were meeting with to discuss available resources for Vista} and I really feel we’ll have to contact Children’s Services about this.”

<insert me spluttering going ‘Excuse me???? Children’s Services???  For WHAT???>

“You are obviously in denial and I am deeply, deeply concerned.  If you decide not to make this appointment then it shows your refusal to get help for you and your daughter and I feel that Children’s Services will need to be informed”

She signed off the call by telling me that there would be a $50 cancellation fee and would I like to be invoiced for that.

I hung up the phone and promptly started sobbing hysterically.  She was going to call Children’s Services on me??  WTF?  Was I not the mother that stayed by her child’s bedside every night in the hospital?  In fact I’ve never spent more than 6 hours (and never a full night) away from my daughter.  Was I not the mom who pushed the doctors to properly diagnose and treat my daughter’s reflux?  Am I not the mom who’s spent the past year working with specialist of every size, shape, and description working to make sure that all Vista’s milestones are met due to her developmental delays?  Am I not the one who pushed and pushed and finally got an MRI ordered that proved we were right in our suspicion that she had some brain issue causing her delays.  Yeah… And yet you want to call Children’s Services on me?  FOR WHAT?  Fuck you bitch.

We’ve had just recently started the process of switching to a new doctor  (an easy 5minute drive, rather than an hour on the highway).  This new doctor is amazing.  We first met him in the NICU after Vista was born.  He was our favorite resident. So when he told us he was going be starting a family practice in our small town, we were elated.  Unfortunately, due to various factors, that took 2 years.  He’s still managed to see Vista a handful of times over the past two years, and is always great with her.  He also has a background in neuroscience, which is a huge plus for us now with her mid-line brain issues.

So after today’s phone call, I called his receptionist and explained what had happened with the other doc.   My mom came with me and watched V, while Dr. F took his lunch hour to sit down and chat with me about what had happened.  As soon as I mentioned that Vista had been throwing up, he stopped me and asked “Is she OK?  Do you want me to take a look at her?”  I must have looked surprised because his next question was “Didn’t the other doc ask if Vista was OK?”  I realized that at no time had my other doctor even inquired if Vista was alright.  She had absolutely no interest in anything other than us making that appointment.  The reason for this became abundantly clear when Bil called old doc and told her to transfer all our files to Dr.F and the first thing the bitch starts in on is a schedule of fees.  It’s all about the money with her.  Nothing more.

Dr. F listened, took notes, and assured me that I had nothing to worry about.  He had watched Bil and I advocate for Vista in a variety of arenas over the past two years.  If anyone called me from Children’s services I was to direct the call to his office and he would take care of it.  It was so amazing to feel listened to.  Once we were done he walked with me out into the waiting room.  Mom and Vista had gone out to walk around so he grabbed his shoes and told the other patient in the waiting room “Sorry, I’ll be right back.  There’s a little girl I have to say hi to”.  Once we found them, he immediately knelt down to Vista’s level and started talking to her about the flowers she had picked (I don’t even want to know from where) and how pretty they smelled and how they matched her shoes.  He is just such an amazing doctor and we feel so lucky to have found him.

Two doctors. The same medical program from the same university.  One is all about the money.  The other is all about the patients.  Take a guess  who will never see a red cent from me or anyone I know.

*addendum: I’m really, strongly considering filing a formal complaint with our Health Region.  I feel this doctor tried to bully me into an appointment when it was not in the best interest of my child.  Threatening a mother with Children’s Services is just low.  And slimy.  And something no RESPECTABLE doctor would do. *

The Vista Summary

For those trying to keep up with the latest progress/diagnosis/prognosis of Vista here’s a short (OK, not so short, but when is anything I ever say short?) update.

If you’re not interested in the whole mommy/kid/doctor/diagnosis type thing then move along, this is not the post you’re looking for.

Background

Vista was born 4 weeks early and spent a week and a half under UV lights for jaundice, due to a ABO blood incompatibility between her and I. She also had an infection for which she was on IV antibiotics. Otherwise, she was a very healthy baby.

In The Beginning

We first started noticing issues when Vista was about 3 months old. She wasn’t as flexible as most babies (she couldn’t bring her feet up to her mouth to chew on, for example. Which, quite frankly, I was OK with, because really? Eeeewwww. Feet. Even if they are baby feet, which are all cute and everything, but still…chewing on your feet?). Then we noticed she couldn’t sit up like other babies, and she wasn’t babbling either.

Around this time she also became a colicky baby. If you’ve never had a colicky baby, count yourself lucky. I can remember telling my husband one day “I understand, now, how shaken baby syndrome happens. I don’t condone it, I would never do it, and it should never happen, but I understand now how a parent on the edge already could reach the breaking point so quickly when you’re with a child who cries 24/7″. There were a few times where I had to lay her, still crying, in her bed, and step outside for a few minutes to regain my sanity. But I digress… She was colicky, which was eventually diagnosed as reflux. This coupled with an eventually discovered milk allergy made for lots of fun the first year.

By a year old, though, we were starting to see more developmental delays. She still wasn’t crawling or even really rolling over much, so we managed, through our Public Health Services, to get a referral to the Early Intervention (EI) group. We now have our own EI child development specialist, physiotherapist, occupational therapist, and speech pathologist that work with Vista a couple times a month to keep her caught up on her milestones.

But we still felt there was something more going on. This was confirmed when she started having mild seizures. Her pediatrician sent to referrals to the neurology department at the local Children’s Hospital. They refused to see her both times. So we finally convinced her pediatrician to request an MRI, himself, after an EEG came back normal.

MRI Results

smiles 300x213 The Vista SummaryEven though we were expecting the MRI to show something that would explain the delays, nothing prepared us for the words “There was abnormal results on the MRI”. The next half hour passed by in a blur as we tried to take in and understand the flurry of medical terms that were being thrown at us.

“…brain malformation…”
“…absent septum pellucidum…”
“…thinning corpus callosum…”
“…hydrocephalus…”

Wait! Hold the boat! Did you just say my daughter is missing part of her brain?!?

I looked over to where Vista was sitting reading a book with Bil in the doctor’s office. She looks normal. How could this beautiful little girl be missing something in her brain. I couldn’t comprehend it.

We still don’t really know, at this point, what the ramifications of these issues are or will be. We’ve been referred to a neurologist (again) and hopefully will have more answers once we meet with him. The tricky thing about a missing septum pellucidum is it’s never the only issue and it doesn’t cause the issues you see in a child. Most cases of people where their septum pellucidum is missing, also have a malformed optic nerve that also causes blindness or other visual issues. But we’re not seeing that with Vista. So, at this point, we suspect that her delays, reflux, constipation, and seizures may be due to the thinned out corpus callosum. But all that’s just conjecture until we talk with the neurologist.

In the mean time, we’ve also consulted with a geneticist. They are running a bunch of tests to see if they can pinpoint the cause of the delays from a genetic syndrome point of view. So, they’re hoping to rule out Fragile X, Triple X, and other things like that. Or rule them in, as the case may be. At any rate, we won’t have results for a while…up to three months.

That’s OK. We’re really good at waiting these days. Vista’s almost two. We’ve spent almost two years fighting the system to prove that we’re not just neurotic parents and that there was something really wrong with our daughter. Three more months? Yeah, we can deal with that. At least, now, things are being done, and doctors are listening to us. And more importantly, we’re able to get Vista the help she needs to be as normal as possible.

Some things we’ve learned over the past two years:

  • Parents know best. If you feel there’s something wrong with your child there usually is.
  • The only person who’s going to advocate for your child is you
  • Don’t be afraid to question the doctors and ask for clarification.
  • If you’re not comfortable with the ‘wait and see’ approach the doctor is taking, say so. Ask for different tests, more tests. Quite often they won’t suggest it.
  • Don’t back down. When you’re told you’re just a neurotic parent, that your child is fine, that you’re putting them through tests for nothing. If you truly believe something is wrong, pursue it.

The part that really scares me about this whole thing is, how many kids go undiagnosed? How many parents, when told they’re just hyper-vigilant, back down and just accept that. I suspect more than fight to have their child diagnosed. If we hadn’t fought, we would have probably never found out about her brain condition and we’d just have a child who was labeled as ‘slow’.

Makes you have a lot of faith in the medical system.

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