Sunday, March 16, 2008

Doctor Doctor

Dear Pediatrician,
For months and months I have considered writing to you. I wrestled with the notion, I debated it with my husband, and worried how I would find the right tone and balance. Fortunately, in the interim I have discovered blogging. Considering is no longer an option; this letter insisted that I write it once I realized that I don't have to actually send it to you, except via Rooster Calls, my blog.
We came to you as patients desperate for our child. Our first pediatrician, Dr. G, dismissed things we knew our boy needed - things like physical therapy, and we heard excellent things about you and your practice.
Many people to this day express shock that Dr. G didn't work out for us, that he is a great doctor and has helped many families. Certainly when we interviewed him, we thought that too, but we hadn't planned on having a child with special needs. Dr. G sounds like he takes great care of children with typical development. We came to you because we needed more. And now I am sure people would be shocked to find out that we don't feel like we got more. Unfortunately, I feel like we have wasted some valuable time, precious time for our boy. I want to urge you, the next time you see a family like ours, to think of us, and learn from us, and get them the help that they need.
One specific thing that I want to tell you is that I believe deeply that sleep is a medical concern. Do you? It brings tears to my eyes when I think that we came to you just a few short months ago having learned on our own through emails from other parents that we could try melatonin with the rooster. It took a few calls in to you, but finally you figured out a dose and gave us the go ahead. For the first time in three and a half years, we slept. It worked on the very first day. Every visit we ever had with you, I know I indicated crippling exhaustion. I never remember you even acknowledging this issue more than possibly putting it in your computer, but I feel sure you must know that sleep plays a significant role in cognitive development, that sleep has been proven to play a significant role in suicide. Melatonin helps us. Sleep helps us. I had reached a deep, dark place in misery from my lack of sleep, and while we aren't completely out of the dark, we are so much better now. I wish you could have given that to us years ago. I wish I didn't have to find it on my own.
Next, I want you to know about autism. One day after I'd been trying for a few visits to talk to you about my concerns, you gave the rooster stickers, asked him to give one to his sister, asked him to give her a hug, and then told me, "Kids with autism can't do that." Please don't ever tell that to anyone else. Inform yourself. If 1 in every 150 kids or so has a spectrum disorder, you're going to see those kids come through your practice, and you need to know how to help them and their families. You're going to have to do more than send them to that neurologist in Beverly Hills who charged us $200 to tell us television would make our son autistic, but maybe it might be "the good kind. Like Bill Gates." I left her office feeling angry, confused, mistreated, another chunk of precious time wasted, and wondering if that "doctor" had been abusing substances before our visit. I know you sent us to her trying to help, but in the last three years, your referrals have cost us more in time and emotional toll than they have helped. There was the eye doctor who took six months to get in to see, but who always sent us away because our "poor child" always looked "sick and contagious." (I found a new eye doctor by putting out a plea via email to other moms. He did our son's surgery, and for the first time in his entire life, our son can hold his head up straight, can see straight, and does not have double vision.) There was the ENT who told us our son needed surgery before he would turn three but that he cannot operate on children before they turn three, that we had come to the wrong place. At least he did know the ENT who could help us, so that only cost us two visits and copays before we found help. There were the allergists with poor bedside manner whose first control failed, and whose second told me this child with lifelong purple shiners under his eyes doesn't have an allergy issue, at a cost to our child measured in pricks and pains. We're still looking for a good allergist; it's on the short list, which actually is long. And what about the xrays? We had one round of xrays that showed that the rooster had previously had pneumonia, and we'd never known it. We had xrays for him when I was six months pregnant, and the radiologists were openly angry with me ("Why did YOU come here? Where is his father?") because being pregnant meant I could not hold the rooster down. When I called you to suggest you not use these radiologists anymore, as they also got into an argument in front of us about which one would get stuck holding my sick child ("wrestling kids is not in my job description"; "But I had to hold the last kid!") you told me that place was best because they had a relationship with your office. And yet when your colleague in your practice mentioned in passing at a drop-in visit when you were not there that she suspected my boy might have a rare and hard to treat problem called "primary ciliary dyskenesia" but that I would need to talk to you about it later, I was left to discover on my own that many people who have that illness have their heart on the opposite side of their body from what is normal, and I asked you, "Does the rooster have his heart on the right or left?" I think I had to ask you once in person and twice through email while you "consulted your records" and eventually told me you couldn't find any xrays in his charts. You know what I did? I put my head against his chest and listened. To my unskilled ears, I have to tell you: my son's heart is right where it should be. You suggested we consider doing a biopsy on our boy to find out if he has this rare condition, this imotile cilia disorder. I asked whether a definite diagnosis would impact his treatment in any significant way. You said, "It certainly wouldn't hurt to have a definite diagnosis." It might not hurt you, but a sinus biopsy under anesthesia would hurt a little rooster. He's had surgery twice in his three and half years already, and if he's going under again, we need a good reason.
The other suggestion you offered for my son's chronic health problems (and purely health problems seem to be the limit of your scope) angered me on a deeply personal level. How many times did you tell me that I should consider quitting my job and staying home with my son until he built his immunity? You never suggested it, I noticed, to his father, and we take turns coming to your office, so you had ample opportunity. Never would that have been financially good for us, but in light of the new possible causes for the medical problems, I feel like I have to point out that staying home would have been just another useless prescription among far too many. Another dead end, with a huge price tag.
Recently, we got in to see a developmental pediatrician with an excellent reputation. I am a little cautious, a little wary - I have learned that reputation doesn't equal solutions for our family. But so far it seems that this doctor sees the big picture, she looks at the whole package, from medical to developmental, including sleep, allergies, hearts and all, and she promises to help us chart a path that will help our family. She cost a small fortune for our family, but for once it seemed like an investment in the future, and in hope - if so, it will be the best money I ever spent. I was surprised to learn from this developmental pediatrician that she knows your office so well. We found out about her, we got in to see her, without your help. I wish you had even told me that such a specialty exists. I had never heard of "developmental pediatrician," but without using those exact words, I am quite sure I had begged for one.
We have asked her to refer us to a new pediatrician for our family.


Niksmom said...

"We have asked her to refer us to a new pediatrician for our family." Oh thank freaking God! The whole time I was reading this, I was screaming at my computer "Change doctors! Change doctors!" Whew. I am so glad the DevPed is looking at the big picture and giving you hope...or at least a small measure of relief.

PBear said...

One hopes that as the incidence of autism spectrum disorders rise, that doctors will eventually become at least minimally familiar with them. If I had a dollar for every 'professional' that told me that it couldn't be AS because Kelly could talk.... I'd at least have enough for a nice dinner :-) It is pretty sad when the parents know far more than any high-paid, supposedly 'expert in the field' medical professional, but that's the way it is right now.

At least you have finally found someone who listens. And yes, that would be a good place to get a new recommendation for a ped - yours sounds like a disaster!

Hope the weekend went reasonably well for you all!


Anonymous said...

I'm sending you a hug tonight, because this post made my heart hurt and I know living through what you describe must have made your heart hurt many times over.

It shouldn't have to be like this. Not for anyone.

Joeymom said...

Oh dear God. We were pretty lucky with our family doc. She was shocked when we came back from the SLP with the word "autism", but she sent us to a developmental pediatrician right away, and then took her butt back to the library to look into autism more. She was pretty upset about not picking up on it- and it was because Joey was so loving and social. People just have NO CLUE that autistic people can be affectionate and interactive!

***HUGS*** I hope you have some new direction (and a new ped!)