On pediatricians.

During last week's re-evaluation, our caseworker said, "And who is Dr. Ex-Pediatrician?" and I audibly groaned. Everyone in the room laughed and there was a chorus of "Oooh, that bad, eh?" and the like. I explained, "He is our original pediatrician, the one who kept assuring us things were just fine." And the caseworker said, "Let's just get him out of her file, okay?" And so we did. It has been long enough that he no longer has any necessary information on KayTar, although he still has not released her full file to either ECI or our current pediatrician. That conversation, coupled with Lisa's recent exposition on the less-than-professional medical professionals she has encountered, reminded me of something I've intended to write for a very long time.

Last June, we saw our current pediatrician for the first time. She immediately told us:

KayTar needed an ECI evaluation, for significant delays.
KayTar needed a neurological work-up, including an MRI.
KayTar needed medication for her chronic constipation.
KayTar needed to see a specialist for her feeding issues.
And we needed to get her on health insurance before we started all of this.

This was after being the room with KayTar for possibly 15 minutes, that is how obvious these issues were. KayTar was such a sickly infant, that we never went more than two weeks without a visit to the old pediatrician. He saw her plenty, and always assured us things were fine. He just wasn't looking at her.

To get KayTar on insurance, we had to have our pediatrician fill out a form. Since ex-pediatrician had her records, he was the one to fill the form out.

(click to make larger)

I only edited to remove identifying information and add in the pseudonym. I left the signature, because it can't be identified in any way. The letter it resembles isn't even in his name.

There were six questions, and he answered every single one of them incorrectly.

She does have genetic, congential, and developmental abnormalities. Not just one, but all three from what we gather.

She is in therapy four times per week; developmental, occupational, physical, and speech.

She has seen eight specialists; neurology, genetics, gastroenterology, developmental psychiatry, ENT, feeding disorders, ophthalmology, and audiology.

She has had multiple outpatient procedures; two MRIs, two CT scans, and two outpatient EEGs. As well as a hospital stay for a diagnostic procedure.

She takes Miralax daily, but in the past year she has been on two additional daily medications, in conjunction with the medications she takes during an episode.

And after reading the previous five explanations, six kind of takes care of itself, doesn't it? Clearly she has medical conditions that require ongoing follow ups. At the time he signed this, he had also allowed her to fall so far off the growth curve that it took us a very long time to fix it.

Sigh. It is over now, and had been for so long, but it still irks me that he blatantly overlooked everything about her. I asked him on multiple occasions about her development, her weight, her constipation. We were assured it wasn't a problem. How could he miss for seventeen months what it took our current doctor fifteen minutes to see?

She had her first episode when we were seeing him. I rushed her to his office and he said, "Maybe it is meningitis." He took blood work to test her white cell count (no LP, even though HE SUGGESTED MENINGITIS) and sent us home. He promised to rush it and have it back by the next day. When I called the office in a panic the next day, the nurse told me, "That takes a week to get back. Sorry." I called several times that day, and even left him and voice message. Eventually he called me back, clearly never having heard my message. It wasn't meningitis, of course, but in that moment I didn't know that. It boggles my mind how something that could have been so serious was handled. Regardless, there was absolutely no follow up done. He never even attempted to explain what had happened to her. It wasn't meningitis and that was all there was to know.

Evening of the first episode.

In the first six months of seeing the new pediatrician, I must have thanked her a thousand times and that was exercising self-restraint. I sent a few small gifts, too. I just could not contain the gratefulness I had for her. It was always met with, "Really, I'm just doing my job." but I don't know if she really realizes how rare it is to find a pediatrician who does the job with such dedication and skill. She changed our lives, KayTar's life especially. She is where she is today, because of our current pediatrician. Without her, I hate to think where we'd be. Sure, we still don't have answers to many of our questions, but it isn't for lack of trying. I could not dream up someone who could do a better job of managing KayTar's care and helping us through all this. We really hit the jackpot in finding her.

We were referred by a friend (whose blog I would link you to if it weren't private, Hi Amy!) and I almost didn't give it a shot. The office is almost an hour from our house, and there are plenty of pediatricians within a ten mile radius. But Amy's daughter had been fairly ill her first year, too, and I thought if the pediatrician could keep up with her, she could keep up with KayTar, too. I didn't expect much. I wrote a list of all of my concerns and printed it up. I brought records of KayTar's intake. I documented everything. I was ready to push for answers, but I never had to. She met KayTar and took notice, without much assistance from me at all. She saw everything, without me making mention of it. It was a huge day for us. A turning point. At the time I felt relieved and horrified all at once. I knew things weren't right, but the extent of it, I had no idea. It was the day my life changed for what might have been seen as for the worse, but in reality it was better than we ever could have hoped. The progress we've seen is miraculous, and I don't doubt for a second that we owe a great deal of it to our current pediatrician. And I still cannot thank her enough.

Plus, she's taught KayTar some mad medical skillz. ;)