Wednesday, May 11, 2011

Really Pointless

The appointment was really frustratingly frustrating. I'd use other F words, but... I don't swear. ;) Um. Yeah.

So we basically were treated like bad parents who don't have good eating habits. We've been through the feeding clinic before, and had food therapy, and we have already implemented the "plan" that was presented to us - minus the "flush out" we are going to do. Yes, apparently the scan does show some not good blockage, and so we'll do the flush out. But everything seemed to go in one ear and out the other with the doc. He gave us a pre-printed plan (the protocol - one-size-fits-all model) and every time I tell him we already have gone through this, he interrupts and tells me this is the plan.

Then after all this is laid out, he then says, "because of the metabolic or mitochondrial background, I'd feel more comfortable doing this one step at a time instead of all at once, as is typically done." So not only are we going to go through the same circles we've gone in before, we're going to go through it more slowly? I'm not sure what to think.

My husband pointed out just after we left that there was no mention of the white stools. So we called the nurse, and she is checking with him to make sure we should just keep doing the same plan that every patient goes through. Considering he had not had more white stools for over two weeks now, I assume all is okay in that category - especially since his coloring is still his typical pale/mottled and not yellow (I keep watching the whites of his eyes, and he seems fine).

His growth is the same as the last time we checked (about a month ago) - 41" and 37lbs. His head is 1/2 cm bigger - so his head circumference is 54.5cm! That is bigger than my head! The doc talked about how this is something you might see in autism, but they don't know why. I'm already familiar with that -Head Size, Autism and (?) Savant Syndrome (and, by the way, also how autism is being tied more and more to mitochondrial diseases -- see this and this, for example). He does have many autistic characteristics, but would be "atypical" if we did have him diagnosed (which we are not pursuing any testing currently). But nothing was mentioned about how this could be a factor in his current struggles.

They don't bother with head size after age 3 to determine if growth is sufficient, and since his height and weight both fit exactly on the average for a 4.5yr old, he is considered a "healthy" weight. He is going to be six next week. He wears 3T pants (that are still loose around his waist though almost getting short at the ankle). We buy 4T shirts, sometimes 5T to get around his big head, but they hang on him in a way that would be cool if we're going for the rapper look. Kids at school are teasing him about being a 3 or 4 year old. How much of his weight is from his head!? And how much would he weigh if he was eating appropriate amounts and not throwing up!? I'm just supposed to accept that he's "just small" when, though our other kids haven't ever been big, they haven't been this small? And using my height and my husband's height to suggest maybe he'll fall in-between based on the current growth curve (while mumbling something about he'll have a catch-up phase later?)-- well why not compare his weight to our weights? It isn't adding up.

Honestly, I feel like back in the NICU with Bridget, just after birth and she's struggling with her sats and breathing. They immediately turn to "protocol" - the "one-size-fits-all" based on gestational age model, and put her on CPAP. Completely ignoring that the amnio done just hours before clearly showed lung maturity. When she starts getting worse and they finally get around to doing an Xray, they see the cause of her trouble is not caused from prematurity, as presumed in their protocol, but because of a pnemothorax (plus a broken collarbone on the same side - likely as a result of trauma coming through the birth canal). CPAP was putting air into her chest cavity, making things worse because of the pressure on her heart.

Protocol has a way of pissing me off, because they assume that everyone fits into a little flow-sheet of "if this, then that" and forget that every person is different. Especially in a family that has had enough medical history that there is a legitimate question of an underlying genetic concern. Choosing protocol may actually put us on a negative path, rather than the anticipated positive, especially when you're in my family. (And we've had enough experience to have gone down too many negative paths already, thank you very much.)

I am not at all glad we went to this visit. I don't feel we gained anything. I feel we have absolutely no real support from the medical community. Our kids, whatever their genetic ups or downs are, will just have to suffer whatever comes their way. This is the kind of appointment that makes me just want to stop doing any more in a medical sense to try to help our kids. Because our kids don't have clear alarms going off for the doctors, they stack our kids into the "one size fits all" category. I don't know why they don't just redbox medical care... Yes, I'm feeling quite cynical.

Look. Our kids aren't just an average Joe. When there is a small risk of something, it tends to be my kids who are the ones who make up the small percent (note: infant botulism, post-tonsil-ectomy bleeds, infant mortality, c.diff, etc.) I don't look at it as 1 or 2 or 5 % anymore, but as either it will happen or it won't - 50/50. We have all sorts of quirks that result in us hearing a lot of "that's rare" or "I haven't seen this before" from doctors. But they can't put the pieces together, so they just overlook it instead!? Since they don't have any better ideas, just go with the pre-printed plan and hope for the best...

My gut (punny, eh!) has been on high-alert recently about this son, in particular. I don't know why. I haven't gone to medical school. I haven't had a great revelation telling me what to watch for or why I need to be more concerned. But I am. And it bothers me. It's not an anxiety feeling. It's not a paranoid feeling. It's just a mama-bear kind of sense that something isn't right. But I have no way of figuring it out. God isn't sending answers. Doctors aren't giving answers. And then our son really is okay in many ways, and I wonder why this instinct is troubling me so much.

Well, I lost that round. I'm not sure if there's any fight left in me. We'll do the flush out, and carry on with our scheduled/routine meals (this kid is basically autistic, and routine is already part of the schedule with him). We'll have to eliminate the times he does get out some gold fish or other snack cracker outside of the routine, and the milk or V8Fusion he's gotten between the scheduled eating. But otherwise, this "new" plan is already in place. I just hesitate with modifying things as they are-- like increasing miralax that pulls water from your system, and reducing the liquids he's drinking when he has demonstrated a tendency to dehydrate rapidly and much faster than a typical child does makes me wonder if this doctor is really paying attention...

So wrapping up. On a frustratingly frustrated note today. Grrr.

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