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Thursday, October 6, 2011

The GI Interrogation.

We visited the GI doctor the other day. We hadn't paid him a visit in a good six months. Not since Christian was on the keto diet. And not since we transitioned to a blended diet through his tube.

I think that appointment can be shelved away in category: Sucky Appointments That Make Me Feel Like Crap.

I had to take a few days to sit with my thoughts about the whole thing. I'm still wondering about it. I'm still wondering if we should ever go back there again.

When we first visited this doctor, he had all the answers and really helped us figure out how to get Christian to stop throwing up. He's very smart and it's evident his brain his working faster than he can talk. And he talks fast. But over the next few appointments he started to take on a condescending, questioning (disguised as a voice of devil's advocate) tone, and it really started to irritate me. But I chalked it up to him just being a doctor and using his doctor voice.

A while back I mentioned to him that I'd like to explore a blended diet through the tube. I don't remember exactly what he said but it was definitely not supportive. He shut the conversation down quickly. And if I remember anything I do remember him saying that "formula is a perfectly acceptable form of nutrition for g-tube fed children."

Rehearse much? Jeez, read that off the back of the can, Doctor?

Anyway, we visited the GI doctor on Monday. We needed to renew a prescription and I was also interested in running some blood tests to make sure Christian was getting everything he needed. I also wanted to keep the GI doctor in the loop since so much had changed.

As I mentioned, I'm still trying to sort some of the conversation out, but these are some of the examples of what the doctor said and my corresponding thoughts:

*I will also be referring to Group A. This group is a renowned therapy group specializing in feeding therapy and tube feeding. Our OT is from Group A, which is not their real name, but due to the nature of some of the comments from the doctor, I don't know if I should mention any names.

Me: "Christian is now on a blended diet."
Dr.: "And why did you decide to do that?"
Me: "I was always interested in whole foods for Christian, but he wasn't holding formula down so I decided to go for it because it was at least staying down."
Dr.: "You know there are other things we can do for that. So besides it helping the vomiting, why else would you choose to give him a blended diet? Are you with Group A*?"
Me: "Our OT is from Group A."
Dr.: "That's what I thought. Nobody in this area or surrounding areas decides to do a blended diet except for people working with Group A."


Dr.: "He looks orange. Does he look orange to you?"
Me: "No." (Confused.)
Dr.: "Are you sure? He looks orange to me. Are you feeding him squash?"
Me: "Not lately. Are you sure it's not me? I wear self tanner and it makes me orange. Are you sure I'm not reflecting off of him?" (I promise I actually said these words.)
Dr.: "No. It's him. He looks orange. Watch, hold your arm up to his. You don't see it?"
(No, I don't see it, weirdo.)


Dr.: "So why else would you decide to give him a blended diet."
(Didn't I just answer this question?)
Me:. "He's always had problems with formula, since he started it right after the accident."
Dr.: "Well, his weight hasn't increased by much since last time I saw him. Real food can not reach the calorie content formula has. Real food at it's highest calorie content is only 2/3 of each calorie in formula."
(This is where it gets weird. When Christian was on formula he was gaining too much weight and dr. said something about him being 33 pounds. Then he said something about him loosing weight. But he said Christian shouldn't have gained so much weight! And we saw him six months ago! Was he supposed to have gain a bunch of weight since then? He weighs 29.75 lbs. now. And is right on the curve, by the way.)
Dr.: "The body craves what it is lacking and since Christian can't tell us what he craves, how will you know what to give him?"
(Lola has never told me what she 'craves.' And, p.s., I crave sugar all the time and I highly doubt I'm deficient in sugar because I eat it all the time.)


Me: "I just want to see him one to two pounds heavier."
Dr.: "Why?"
Me: "Because I'm his mom and I want to see him robust and solid."
Dr.: "But he's not a baby anymore. Four to six year olds are the skinniest they'll ever be in their life. So it's normal for him to look skinny."
(Weren't you just concerned he wasn't gaining enough weight fast enough?")


Me: "I give him kale, apple juice, avocado, olive oil."
Dr.: "Now olive oil can slow things down in the digestive track."
Me: "Actually, he's never been more regular. And it was over night after we started adding blends."
Dr.: "Oh was there a regularity a problem before?"
(No, we just have a prescription of Miralax in his chart for fun. Did you read his chart?)


Dr.: "Well it sounds like you are doing a great job at getting him what he needs. If anything I'd be worried you're giving him too much of something...this isn't taking over your whole life, is it?"
Me: "No! I love cooking for him. It feels like he's more a part of the family. It feels less like a medical procedure, like I'm just plugging him in and walking away."
Dr.: "Yup, that's Group A! Those are their partying words!"
(Swear to God, he said 'partying words.' I think he meant parting words. But he seemed pissed off while he said it.)

And then he walked out of the room and I didn't see him again.

I felt interrogated.

There were a lot more little comments he made. But it was like he was insinuating that Group A was swooping down on poor, innocent, formula feeding families - happy in their ways - and pushing evil whole foods on us. And we had no choice but to give our kids a blended diet, because Group A pushed it on us!

That is not the case!!! I have been interested in it since day 1! I asked my OT about it and she gave me a book to read written by the founder of Group A. And then she left the decision up to me. In fact, I made the decision on my own and made the transition. I've asked for suggestions from the OT, but she has never, ever, ever, EVER pushed a blended diet on us. I've also sought out the bulk of blended diet information from...shocker...OTHER PARENTS!

I swear I have never met so much resistance. Even the doctor's own assistant was intrigued by our choice to go blended. Even his assistant! Christian's pediatrician is in total support and even said it's better for him. So why the attitude? Why the lack of respect for our choices? Why be so condescending?

And just because Christian is tube fed, does that make him unworthy of whole foods? Why is this not possible in this doctor's realm of thinking? Why isn't this a practical choice? And why isn't that choice respected?

I'm not mad about this, if that's how I come off. I feel worried. Worried for myself and worried for other families. What if this guy has a bone to pick with Group A and wants to make an example by taking some kind of action? What if he doesn't think we're nourishing our child? I'm confident we are but what if he's not. Then what?

So talk about an interrogation. First he's gaining too much weight, then he's loosing weight too fast, then he hasn't gained enough in the last six months, then maybe he should be skinny, then he looks orange, then maybe he's not getting enough calories, but then maybe he's getting too much of something, then it's all Group A's fault.

Can you say mindf**k?


Luke's Mom said...

I'm so sorry you had to deal with that arrogant Dr. What Dr.'s like don't realize is that you are the mom, they are not! I've been giving Luke a whole food diet for most of the past 7 years and I've never ran across a Dr. like that, perhaps you should look into changing Dr.'s??

Keep up the hard work of feeding your precious little guy healthy food, it is so worth all the work.


ShaunaQ said...

Thanks, Sue! I'm praying for you and Luke!

Meredith said...

Wow, what a crazy doctor! I would have been so upset by the line of questioning. I bet you could not get out off that examining--no, cross-examining--room fast enough. Group A sounds great, so maybe it's possible he's privately envious that he's not affiliated with them...

Colton's Journey said...

Shauna, Think I might find a more intuned DR.!!! Your an awesome mom who keeps at getting Christian the best so tell him to stuff it!!

Shannon Jacobs said...

I would find another doctor. Braydens Dr. Actually recommended a partially blended diet for him. We mix baby foods and cereals with his formula and she said that it was better for him nutritionally and for his digestive tract. For adding more calories without adding a lot more volume to his feeds we put powdered baby formula for older infants in his food. She let's us adjust the amount we feed and how many times a day we feed....because no one knows better how your child reacts to things but you. Your Dr should be working with you and should be more clear.

lucilovesraspberries said...

I agree, time to change GI docs. That was really unacceptable, insensitive and uninformed of him and you say you're not mad but I am! Grrrrr - peg

Calicomama said...

I feel compelled to comment. All of this crazy talk from the MD is very very familiar to me and I know nothing about MDs. But as a PhD who works with lots of similar ego-obsessed PhDs, this is familiar. And bad. All this talk of the other group's protocol, this MD's lack of attention to the specifics of Christian's diet, condition, etc., and the back-and-forth illogical crap spewing from this guy's mouth all shout "warning! warning!" to me. I work with a lot of people who can be like this, and I'll tell you the sad truth: many highly educated people care more about their ideas and their reputation than the experience and needs of their patients (and in my case, college students). You should be mad and disgusted and I would urge you to drop this guy (if possible) like a hot potato. If you only need to see him to get Rx prescribed, then maybe it's not worth the hassle and drama to switch. But I promise you: his words to you are ALL ABOUT him and nothing about Christian. So don't let them bother you. Let the whole experience bother you (his lack of care towards you) but not his crazy words about Christian's orange-ness!

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