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.
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.
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.
There is just so much hope in this post...isn't it amazing how the right care turns your life around? I have to say, that first photo of Kaytar is so unlike her it startles me. I can only imagine the changes that have taken place on every level since that photograph.
And you, honey. Don't forget all your hard work...you might never have found Current Pediatrician if you had allowed Ex-Pediatrician to make you act against your instincts. Good on you.
This is heartwarming, though.
I'm glad you know how lucky you are to have Dr. H. I'm always so jealous.
She's not "just doing her job"...I don't know many medical professionals that take that kind of time with patients, that allow emails and watch videos of her reading. She adores KayTar, it's clear.
I agree with notsosage, you deserve a lot of credit with regards to Kaytar's comeback, simply by being the most kickass mom I know of. Seriously.
Now about that form the ex-doc filled out...if you were trying to get insurance coverage, it works in your favor (though I'm not saying it's excusable in any way!) that he was incorrect on all of those questions. Believe it or not, none of Ethan's hearing loss visits get covered because he was born deaf and they use "pre-existing condition" to get out of te coverage. Mind boggling as it is. I just wonder if you'd have a harder time with getting all of Kaytar's therapies and visits covered if he had answered them correctly? No matter, he sucks and he's out of your life!
Hetha: Definitely. It did work in our favor, it just shows how little attention he paid. He wasn't doing it to assist with getting insurance, he just really had no clue.
Thank goodness for that dr.!! What a difference she has made in Kaytar's life and of course you had the wisdom and strength to mae that life-altering choice!
I'm with Notsosage -- good for you for being the kickass advocate that you are for Kaytar.
I love a happy ending.
Your pediatrician sounds awesome. We have a fairly intense doctor shortage around these parts, so our kids don't see pediatricians. Still, I switched from my old GP, who was so clearly shifting the focus of his "medical practice" to cosmetic-y Botox-type procedures, to a new GP who is my age and has two young children of her own. I love her.
It's hard to understand how your first pediatrician can sleep at night.
Good for you for taking the chance, and an hour drive at that.
Stupid, blind people can always sleep at night... makes 'em good targets for freezing their underwear and doing the hand in the warm water trick though.
A good doctor makes all the difference.
I hate doctors like this.
I really need to send you a personal e-amil on this topic though.
Hilarious last bit.
You know how I feel about the good ones, but they just feel they are doing their job. Too bad the bad ones don't feel like they are not doing their jobs.
I think Kyla you also have to take a lot of credit for making the effort to see the right ped though too.
Finding the right people is quite a task as I am discovering.
And honestly I cannot even imagine how my head would be exploding if I had one more hurdle, like insurance, between me and my child getting help that she needed.
It makes all the difference in the world to get the support you need. Good for you for making the effort. Some people would just accept the status quo.
And don't say you are "just doing your job" as a mother either... :-)
I hear you, oh how I hear you and it makes me livid for you.
It made me livid for me. I put my kid through a year of hell because my pediatrician's ego and ignorance were both too large to provide quality care.
First visit with new doctor? World of difference immediately. I berated myself before turning my ire to the doctor though.
I'm so, so sorry you dealt with that.
I'm so glad
We ought to be able to trust doctors. I can't be an expert in that too, but I must be.
Using My Words
Oops got interrupted..was saying I'm so glad you found such a great doctor!
Using My Words
I so enjoy your blog (and, incidentally, I have a delightful daughter who is also named Kyla, one of my favorite names!) and admire your ongoing grace and courage. You’ve probably explored this, but I thought I’d ask--has KayTar been tested for a mitochondrial disorder? While doing some reading, it sounded as if some of the symptoms can be similar to what KayTar experiences (loss of muscle coordination, hearing/vision problems, neurological problems, brain lesions, seizures, GI disorders, slow weight gain, severe constipation, susceptibility to infection, etc.). Just a thought I had, because I think of KayTar every day and (like you) long for a diagnosis—something that will explain everything. Best to all of you, and thanks again for sharing the journey with us.
Pinhead: We have done so many tests that I am not 100% sure about what I am about to tell you, but I think it is mostly accurate.
We've talked about mitochondrial disorders with the geneticist and I believe he ordered preliminary blood testing in regards to it. She also had an LP last month and he just ordered additional tests on the CSF, and mitochondrial disorders might be part of that as well.
From what I can remember, it isn't off the table altogether, but is currently being ruled out. I THINK. LOL. Really, we've been through so many different testing rounds and certain things are spotty in my memory. I remember discussing it at the most recent genetics appointments which is why I think that it is currently being tested for.
Nothing better than finding a caring and thorough pediatrician. It took us a long time as well.
Sage said it.
I always want to hug KayTar. ((And you too my friend.))
The picture of her having her first episode gave me the slightest whiff of the panic and helplessness you must have felt.
I am so sorry you had such ineptitude at the beginning.
I'm so glad you switched! You must have been so simultaneously relieved and infurated after that first visit with the new doctor!
Dr.H truly is a gifted, talented doc. Her care for Kaytar has been amazing!!
It's amazing how different doctors can be. Sounds like you've found the cream of the crop for your little KayTar...
As for your original pediatrician, I would have written a letter of complaing to the state medical board. But I'm annoying like that.
You are just as much responsible for all her improvements as that wonderful pediatrician...even more so.
You're a kick-ass mom.
Oh you! I'm so glad you found this new doctor. And how hard it must be for you to not be constantly, bitterly angry at your old pediatrician. That you choose the path of hope and forward-looking is really a marvel to me. Kaytar may have a great doctor, but she's got a really great advocate in you, too.
So good. So scary to think how many people may have had things overlooked by doctors like the first one. I'm glad you['ve found good care for your girl, Kyla, and good for you for sticking with it until you did.
And then when you think of all the kids without proper care. Here in North America and elsewhere. It all kinda makes you feel sick, doesn't it. I am so glad you found this woman. So glad.
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