On not seeing eye-to-eye with a doctor

At 22 months of age, Andrew weighed approximately nineteen pounds when his g-tube was surgically placed. A few weeks after g-tube placement he was down to eighteen pounds and looking and acting like death. At 23 months, despite reservations from our doctors and in lieu of the mediocre surgery options presented to us, I started him on the blenderized diet and it was the best possible thing to ever happen to Andrew’s GI system as he quickly stabilized and started to enjoy life. At 27 months, he now weighs twenty pounds; still below where he is apparently supposed to be. But we must remember that before the diet, Andrew’s life was one of pain, suffering, starvation, and question marks about how much longer he could live like this. Without the diet, he would not be enjoying his life the way he has been these past few months. His health is now predictable and stable. Things have been quiet. He is alert and smiles and laughs. I think he is doing fabulously.

After not having visited GI Doctor and Dietician in several months, I was looking forward to seeing them and singing accolades about the diet and how wonderfully he was still doing. I was sure they would think so too.

But they were not. The first thing GI Doctor said to me as she walked into the exam room–after being briefed by Dietician after a conversation with me–was: “Andrew is doing EH. He should be doing A LOT better.” Huh? She is not pleased with his weight gain. He should have gained more weight by now. Maybe I can try more olive oil, more Duocal, more something with his diet, but at his age and height, he should weigh more. He should be doing a lot better than this.

I told her that while he doesn’ t weigh as much as she’d like, his life and health are SO MUCH BETTER THAN IT USED TO BE. He sleeps! He stools! His reflux is controlled! He stopped retching all day and night! He smiles! He laughs! Things are so stable! Our day-to-day family life is finally normal and enjoyable!

“Yes, but he really needs to gain more weight.”

I asked her why weight was so, so, so important. Why this fixation on his weight? His twin sister, Eleanor, is the same height and only weighs two pounds more (she has always been solidly in the 2-3 percentile of growth) and nobody is concerned about her. She didn’t really have much to say although she did acknowledge (I think because she probably sensed my annoyance) that, yes, he is stable and doing better than he used to. But, again, he needed to gain more weight. I told her okay. She said she’d see us again in a few months. I said okay.

We are not going back.

I am wary of a doctor so fixated on weight as the barometer of overall gastrointestinal well-being that they are unable to see and genuinely acknowledge actual progress. I am wary of doctors who use charts and figures meant for typically developing children and applies them, without question, to a severely disabled child who does not fit neatly into any medical text book or chart.

What if another family in our shoes did listen to their doctor, decided that their child must not be doing so well after all, and their gastrointestinal focus became weight-centric?

Andrew is blessed to have fiercely knowledgeable parents (including a father who happens to be an adult neurologist) to advocate for him in the complex medical world. However, I feel weariness about how the majority of major medical decisions made to his benefit have been because my husband and I were the ones who took the time to think out a solution, come up with a plan, and then convince our typically reluctant doctors to allow it to happen.

Where does that leave the families of severely disabled children who do not have the savviness to best navigate the system for their child’s benefit? It’s depressing to think about.

On a happier note, here are some non-depressing pictures of our handsome little guy:

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19 Responses to On not seeing eye-to-eye with a doctor

  1. Kris says:

    I am a pediatric nurse who has worked with children who are g-tube fed for years and years, and I agree wholeheartedly with everything you have said in this post! There is nothing that frustrates me more than professionals, whether they be nurse, doctor, dietician or other, who consult charts and “norms” while failing to REALLY look at a child! It sounds like the diet you have Andrew on is working marvelously for HIM and that is truly wonderful. It also sounds like a new doctor, who actually looks at Andrew and understands that parents are part of ‘the team’, is in order!

    • earlybirdies says:

      Thank you, Kris. I’m not sure how the failure to “REALLY” look at a child happens with doctors. Was the doctor trained like this? If not, did they get too comfortable and intellectually lazy along the process? Do they just want to get in and out of the exam room as fast as possible? I suspect maybe a little bit of everything. But complicated cases that require a little more thought than usual probably annoys some doctors as well. I couldn’t help but feel that was our doctor.

  2. Pam says:

    As the mother of a child with disabilities and 3 other children who have needed surgeries for some pretty strange stuff, I totally get where you are coming from. Like your husband, i am a physician as well and it amazes me what a hard time we have had with getting our kids what they need in the medical world. I almost think maybe it is worse with me being a physician. So scary when you have to rely on your own judgment. Where are the good docs? Just venting today. Enjoying your blog.
    Pam

    • earlybirdies says:

      Like any industry, there are people who are good at their jobs and those who are not. We’ve had some wonderful doctors but the poor ones who are too prideful and set in their ways are, in my opinion, the worst. Andrew is complicated and nothing about him is very straight-forward. I appreciate when a doctor says to us: “I don’t know.” And we’ve HAD doctors say this to us! It’s when they don’t know but will not admit it, will not consider anything other than what they see each day, or act annoyed to mask that it gets rather dicey.

  3. Yooms says:

    I think that is the most accurate description of you two -“fiercely knowledgeable.” Love it. And he is a totally handsome little dude! What kind of blender do you use?

  4. Lina says:

    Your frustration is inevitable as a by-product of institutionalized, liability-averse “professional” thinking. Get ready for school boards to continue to boil your blood with their brain-dead thinking. I thank God for your generous spirit toward all the less-privileged, disabled children out there.

  5. Jenny says:

    Good for you, Jenn and Mike. I hate that with all you have to deal with, you have to now add looking for a new doctor to the impossibly long list. I will reach out again to my friend’s friend whose child is on a gtube. Maybe they have a better doc. Keep up the awesomely heroic work!

  6. ANGEWA says:

    Seeing you guys recently made my heart so happy. One doesn’t need a medical degree to know that Andrew is doing so well- you all are!! You’re my heroes. XOXO

  7. Jenny says:

    I’m so glad he is doing so well – we really love the blended diet as well – and although the changes aren’t as obvious in my child, I do think that cognitively it has helped her a lot! You know, I am so lucky in that our primary doctor, who I love, told me once “look at the CHILD” – always look at the child. We got lucky, but I do what you mean, I wonder what happens to all the children whose parents or guardians (or lack therof) don’t advocate as well, or perhaps do not speak the same language. It sucks – I only hope that someone does!

    • earlybirdies says:

      I think I know what happens to those kids and families, Jenny. But aside from how it impacts the family on a practical level, the most obvious, to me, is that the child dies sooner. I know that seems kind of extreme but I’m pretty sure that’s what would’ve happened to Andrew.

      I’m so glad to hear that the diet is suiting Cici quite well too :).

      By the way, I think primary doctors, in general, are much better at looking at the WHOLE patient. Our primary doctors are wonderful too. As primary doctors are more general doctors, one can see why.

  8. Andrea says:

    Jenn,

    You’re a great mom! Andrew looks great and I’m glad to hear that he’s doing so well.

  9. First Jenn — so glad to see you back on the blog and the amazing photos of Andrew.

    The response you got angers me and takes me back to when my son Ben was diagnosed with failure to thrive even though his condition is assosciated with dwarfism and his body was completely in proportion. The docs and nutritionists had us obsessively following him around all day, trying to shove food into his mouth, meticulously recording it and on a high-fat diet with lots of cream. I can remember going for weigh-ins and being devastated when he didn’t gain what they were hoping. We agreed to have a g-tube placed to supplement what he got during the day with a night feed. Guess what happened? He was so stuffed after the night, he didn’t want to eat anything during the day. At first he had a bit of growth with the g-tube, then he totally plateaued. After about a year of the extra work of the feeds, trying to travel with all the equipment, discomfort when we had to change the tubes, inability to toilet train him, my husband and I decided unilaterally to take the g-tube out. When we returned for our next GI visit, the doctor was livid and wrote a very snarky letter to our pediatrician. At no time did anyone look at the whole child. I remember our ped. looking at Ben and saying: “But he’s not skinny. He’s in proportion.” As a parent, their fixation on numbers and norms instead of the unique kid Ben was was and how this food obsession was affecting our lives was incredibly demoralizing. When you’re told that your kid is “failure to thrive” YOU feel like a failure. Glad to hear you are switching docs. xo

    • earlybirdies says:

      Thank you for sharing, Louise. DId we have the same doctor??? ;). Unfortunately, no. I suspect this rather arbitrary and thoughtless practice of focusing solely on weight is widespread in the GI world. I could relate very much to feeling anxiety before each weigh-in, and then feeling frustration and demoralization afterwards. I always had a sense of futility with the GI weigh-in appointments but it wasn’t until it just kept on going after the blenderized diet that I finally had the courage to say “ENOUGH!”

      By the way, our pediatricians would always mention that Andrew was proportionate and looked great too. One of our pediatricians was aware of our weight-related GI frustrations. I suspect they agreed with us but, for political reasons, decided to stay out of it.

  10. A says:

    Hello. I’m finally in a place to start a blenderized diet (got the blender, book, supplies etc.) Could you share how you started introducing food/reducing the formula? E.g. did you use a commercial baby food the first few feeds or did you just jump straight in? We are on Pediasure 1.5 at the moment.

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