Tuesday, December 01, 2009

Good decision confirmed

I am so glad we decided to switch to a different neurosurgeon.
Here are two experiences which prove to me that we made the right decision.
Our follow-up appointment with the old neuro.
A couple of weeks ago we had an appointment with the old neuro which was made back before the whole hospital stay when we were so disgusted with the care Avery got. I decided to keep the appointment. Partly because I had a lot of questions about why certain things were never even mentioned to us, let alone explained.
I was cutting it a little close time-wise, so I hadn't had time to put on either child's shoes. And I didn't have a stroller, so when we got there I had to carry a child on each hip, as well as two pairs of shoes, Avery's braces and cane, as well as my bag and stuff, only to find a flier on the door of the neurosurgery clinic saying "We've moved!" So by the time I carried both children back outside, loaded them back into the van, figured out where the new office was, found a parking space that wasn't a hundred miles away (zero disabled parking to speak of), carried both children inside and found the right floor, we were late. Very late. And I was tired and flustered and angry. Why nobody let me know that they had moved before the day of the appointment, I don't know. The only explanation I got was "Oh yes, a lot of people have been having that problem! What a pain!" Hmm.
When we did finally get to see the doctor, the first thing he asked was, "So has everything been smooth sailing since the last MRI?" which basically meant that he'd forgotten all about the hospital stay. And then when I reminded him, and then explained that the problem all along really had been an over-draining shunt (as we'd been telling them for at least 2 or 3 days before we transferred to UVa) he said "Really?? Was that all it was??" Hmm. Yup. Then we got to my questions about why no one had ever attempted to even mention the latest MRI findings and I had to hear it from a developmental neurologist. In response he just sort of went into a brief description of each of the conditions, and basically said that these conditions are sort of difficult to diagnose conclusively from MRIs. But apparently the evidence was conclusive enough to write down in their report, just not to explain to the patient's mother. So maybe the fact that Avery has periventricular leukomalacia doesn't change anything, but it certainly helps me understand why she has spastic diplegic cerebral palsy, since it is the most common cause of the condition. And knowing that she has septo optic dysplasia helps me understand why she has some eye problems. Not only that but it makes me grateful for the fact that she doesn't have growth hormone deficiency, and so grateful for the fact that she sees as well as she does. I just don't think it's a doctor's place to decide which information a parent may or may not want to know.
This leads me to the confirmation I received this morning that we made the right decision switching neuros.
Appointment with Ophthalmologist.
This morning Avery had a routine appointment with her ophthalmologist. Everything went as normal, with the report of how we've been doing with the patching (not well by the way - I don't think she's worn an eye patch for about 2 weeks, and for the couple of months before that it was patchy at best! (Haha! Patchy!)), the testing of how well she could see the shapes on the screen, testing how well she's using her left eye (the weak one)...you know, same old same old. Then I just happened to mention the phrase "septo-optic dysplasia" when I was talking about how we'd switched to a new neurosurgeon after Avery was in the hospital (we happened to see him out in the hallway at the hospital here the night before we transferred). Apparently this changes a lot. Not necessarily in how we're treating Avery, but in her long-term prognosis. He was asking about her pituitary gland and her septum pellucidum and corpus callosum, and was explaining that there are things which may or may not be helped by all this patching we're doing, and that the surgery she will most likely be getting in the next few months will still help with the turning in of her left eye, but he's not so sure now that it will help with the vision problem itself. The patching and the glasses (which I got a new prescription for, which I will not lose this time!) might help, or they might not, but they're not going to do any harm. Either way, the vision impairment is not that bad. Obviously. Probably the biggest thing is that she may not have any depth perception, even after surgery, if she has it. But this is a girl who can spot things (school buses, Lowes, Sams Club, the hospital, the gym, birds...) before I do whenever we're driving around town. In retrospect I do notice that Brogan starting focussing really well on things earlier than Avery. When Avery was around his age I remember trying to point out things like squirrels on the lawn when we looked out of windows, and she had the hardest time seeing what I was pointing at, but Brogan spots them all by himself. Just another one of those things that I didn't realise was different until I had Brogan.
Anyway. Basically, Dr Facciani couldn't believe that the neurosurgeon neglected to inform me of any of that stuff, and he's requested a copy of the MRI, and sent a fax to our family doctor asking him to refer us to an endocrinologist. The developmental neurologist wanted us to see an endocrinologist too, but the neurosurgeon thought it was a silly idea. We'll be seeing one.
Watch this space for Avery's glasses!


Carla said...

OMG- the nerve of some doctors! I feel so badly for you carrying your children, I've had to do that myself & its no fun! Glad to hear your better off with the new doc:)

SuzanSayz said...

I get so angry at this kind of thing. First of all these specialists charge huge amounts. So many of them are so full of themselves that they have a problem with questions. Thinking that if they HAVEN'T told you something it's because in "their" judgment it isn't important for the parents to know. They refuse to even consider that the parents just might know a few things about their own child that the doctor doesn't know. I get mad just thinking about it. I'm so happy that you have been able to find a better doctor for Avery. How sad that you had to put up with the incompetence of the other one as long as you did.

Diana said...

I'm sorry this happened. When will doctors listen to moms who know best!! For him to forget about a hospital stay is terrible and with the chart in front of him which he should have reviewed before walking in the room with you. To make the comment, "So, has everything been smooth sailing ...." is unprofessional to say the least.
I hope the change will bring more answers and better care.

Anonymous said...

I can't believe they didn't inform patients of your old Neuro that they had moved offices, that is terrible!

I hope the endocrinologist goes as well as it possibly can.

Valerie said...

Laura and I were talking about you just the other day and saying that you really are quite an amazing mother Josephine...and then, on top of all the ordinary stresses and strains of raising children, you have all this to deal with too. How wonderfully you do it. I remember after our doctor failed to diagnose Eveymartine with diabetes (which meant the disease was causing every kind of damage to her body for 3 months longer than was necessary) I told him that, if he should ever see one of my children unconscious on the street, he should walk away and let a more qualified passer-by take care of them. Doctors the world over can be so frustrating and yet we still trust them to do the best for our children. It is so wrong that you have not been informed of things which are so vitally important to Avery's welfare, I'm so glad you've now found new people you can trust. I am personally a little in love with Doctor Brown (please don't tell him when next you go to Charlottesville.)

Tony said...

That's not a veiled double bluff request is it?

Tony said...

Good news at last. You really are doing marvellously. Something that Elder Oaks calls "courageous confrontation" I guess. But a mother fighting for her child(ren) is not to be overlooked.

Evey F said...

You are quite amazing. I suppose we don't really know what we're capable of until these challenges come. Well done.

Michelle said...

Grrr....yeah, dumping the local neuros is a decision I don't think either one of us will ever regret. And we just went to see Dr. Facciani this morning...It's a small world. I'm so happy for you that you have found the right people for Avery!

Michelle said...

Oh, and I followed the link for the developmental Dr. Kerkering. We went there about a year and a half ago. She diagnosed Owen with all kinds of things that he didn't have. I nodded and said thank you but I disagree and then didn't make a followup appointment.

Avery didn't show any signs of Aspergers to me. She certainly had no problem interacting with me or Tessa. Her conversation was very appropriate, and actually I would say advanced, for a three year old.

As for the flapping, she has hydrocephalus, isn't that enough to explain a few things without adding another syndrome to it?

I'm glad that she was able to help with the MRI though. I just wouldn't worry too much about the other. When I mentioned Dr. Kerkering to Owen's PT she said that many people felt that she was overdiagnosing things.