When worse is somehow better
Today we had another appointment with our new neurodevelopmental pediatrician. Yeah, that one.
I'm still struggling to wrap my head around the things she told me, but since I put off writing my once-a-day post until now, I have to write about it because it's all I can think about.
First, the good news: Malachi has gained a pound and grown 3/4 of an inch in two months. Yay!
Then, the sort-of bad news. I asked her for more information on why she thought Malachi's expression of CP was unusual. She said that she would guess that 999 out of a thousand preemies with PVL (Malachi's type of brain injury) have spastic diplegia — tight legs, pretty well-functioning trunk and hands, like this awesome kid. Malachi instead shows a lack of control that would be seen from damage in the basal ganglia. Our old neurodevelopmental pediatrician told us this, too, although he called it extrapyramidal cerebral palsy. What he neglected to tell us is that in order for the bleed to have reached the basal ganglia, it most likely means that the damage is a lot more severe than we thought.
Awesome.
If I would have heard this a year ago, I would have dissolved into uncontrollable tears.
But today, strangely, I was actually kind of glad to hear this. Malachi is nearly 20 months old. He can't roll, sit, crawl or really do any independent gross motor movement, despite lots and lots of work and hope. To hear that the damage is worse than we thought sort of lowers the bar. Now I can pretend all our hard work has paid off in some way and that he is doing better than expected instead of worse.
Because despite how much I research and pay attention to new therapies and methods, I know exactly what is proven to be far and away the most effective in preventing motor control problems:
Not getting brain damage.
I know lots and lots of parents who love their kids with CP and work really hard for them. Some of their kids are doing really well, like this one, others, not so much. I sincerely don't believe it's because some parents love their kids more, or tried more things, or stuck to the best thing, or whatever. I think of it like the 80/20 rule. Maybe with all of the awesomest therapy and the best-trained folks, you could improve your kid's functionality 20 percent. And that's awesome and totally worth trying for. But 80 percent is just the way it is.
That brain done got damaged and that's that.
I'm still struggling to wrap my head around the things she told me, but since I put off writing my once-a-day post until now, I have to write about it because it's all I can think about.
First, the good news: Malachi has gained a pound and grown 3/4 of an inch in two months. Yay!
Then, the sort-of bad news. I asked her for more information on why she thought Malachi's expression of CP was unusual. She said that she would guess that 999 out of a thousand preemies with PVL (Malachi's type of brain injury) have spastic diplegia — tight legs, pretty well-functioning trunk and hands, like this awesome kid. Malachi instead shows a lack of control that would be seen from damage in the basal ganglia. Our old neurodevelopmental pediatrician told us this, too, although he called it extrapyramidal cerebral palsy. What he neglected to tell us is that in order for the bleed to have reached the basal ganglia, it most likely means that the damage is a lot more severe than we thought.
Awesome.
If I would have heard this a year ago, I would have dissolved into uncontrollable tears.
But today, strangely, I was actually kind of glad to hear this. Malachi is nearly 20 months old. He can't roll, sit, crawl or really do any independent gross motor movement, despite lots and lots of work and hope. To hear that the damage is worse than we thought sort of lowers the bar. Now I can pretend all our hard work has paid off in some way and that he is doing better than expected instead of worse.
Because despite how much I research and pay attention to new therapies and methods, I know exactly what is proven to be far and away the most effective in preventing motor control problems:
Not getting brain damage.
I know lots and lots of parents who love their kids with CP and work really hard for them. Some of their kids are doing really well, like this one, others, not so much. I sincerely don't believe it's because some parents love their kids more, or tried more things, or stuck to the best thing, or whatever. I think of it like the 80/20 rule. Maybe with all of the awesomest therapy and the best-trained folks, you could improve your kid's functionality 20 percent. And that's awesome and totally worth trying for. But 80 percent is just the way it is.
That brain done got damaged and that's that.
Hmm. Julia has PVL, and when she was Malachi's age she was at about the same level, gross motor wise. She has some stiffness in her legs, but it's nothing like what a true spastic diplegia kid would have. She more gets stiff when she's trying to do something else - like, she can't concentrate on so many things at once, so whatever she doesn't need to control gets lost in the shuffle.
ReplyDeleteShe has poor trunk control, and doesn't use her right arm much, but is pretty dang good with her left - I even think she's grasping a crayon the way a typical 3-year-old would. But we were never told extrapyramidal, just dystonia (this was after an MRI also).
I think this is why I like our neurologist. When he gave us the dystonia diagnosis, he said it in no way means we'll know what she'll be able to do, we just have to watch. And that regardless of what label we slap on her, our treatment wouldn't differ. So I'm just kind of over the labeling thing now, because as soon as I think I have her pegged, she goes and does something she shouldn't be, or doesn't do something she should be.
Amy, I just read your comment after I posted below about specific labels with a question. You pretty much answered my question and we really seem to have many of the same viewpoints. I am really enjoying and learning from Shasta's and your posts.
DeleteYea, I am so over the labeling, and to be honest, I could care less. Daughter is a spastic quad, significantly affects her daily life, but I know a super, specific label will not affect her treatment plan. I start laying the map of her treatments at least two years in advance, subject to changes, of course...the label sp. quad CP, for me, is now just a insurance billing necessity.
I would seriously question your docs idea that 999 of 1000 PVL present as SD. It totally depends on how significant the insult was (love that term - so fitting). My guy has it bad with the dystonia that Amy describes. In my 7 years of Mom-research i read about the full range of CP presenting in kids with PVL. Never heard anything that predictive or confident.
ReplyDeleteOk. So, I have to ask question. I hope to get some honest answers and I don't want this to seem judgmental AT ALL! I am not singling out ANY person/people; just whoever wants to answer.
ReplyDelete**Why is it so important to know or have a super specific diagnosis?** I mean, you have the CP label, you know if your child is hemi, quad or di. We can all explain how our child is affected in everyday life down to the most intimate details. What are you gaining by trying to break it down even more? (I say "trying" because brain damage is so varied and inconsistent between patients). What am I missing by not doing this with my daughter? Does this constant effort to break down the diagnosis and understanding the location of the damage change your treatment plan? Does it affect your doctor selection(s)? Does it explain how your child moves, and probably more importantly, how he/she DOESN'T move?
I am starting to feel inadequate since I don't break down my daughter's diagnosis down to the smallest details. There is no way I would be able to talk in the specific details of some CP parents which terms such as extrapyramidal cerebral palsy.
I think I would feel stuck if I spent time with her specialist trying to label nuances of her CP, of which, I can not change or fix. But, again, maybe I am the one missing the boat.
I agree with you. When Julia was younger - before she should have even been sitting or crawling - the way she clutched her right arm to her chest, we assumed hemiplegia and that only. Then when she wasn't using her legs much, we were like, Okay, maybe some diplegia, but not really, since we can move her legs easily? Then we got the dystonia diagnosis because of her head posture preference and her retainment of the infantile reflexes, and I was just, Whatever. Every type I'd read about, there was a wide range of what types of abilities the child could have; none of them made me feel any better than the other.
DeleteMaybe there are some specific labels you'd want for certain treatments (I keep hearing people talking about needing a SD diagnosis for SDR surgery), but otherwise I agree, write what you want so I can get treatment covered by insurance. Other than that, I really don't care.
I certainly think the "take it a day at a time" philosophy is better psychologically, so don't feel like you need to develop a complex like me! :)
DeleteThat said there are several reasons I can think of for wanting to know specifics.
1. Sheer curiosity for what exactly it is that has thrown our lives for a loop.
2. If Malachi has an atypical type of CP for his brain injury that could indicate that his symptoms are not actually from the BI at all but from a different problem (Click on the "that one" link at the beginning of the post for more on that story).
3. The knowledge that Malachi is unlike 90 percent of children with CP because he is not spastic. Therefore, I don't need to waste time really deeply exploring those issues.
4. As hard as I try, it seems impossible for me not to have expectations for the future, so I might as well keep them reasonable. If I see a kid who has an extremely similar diagnosis/presentation and they are older, I want to see what they can do. I want to know what the range of possibilities are for him so I don't rule out wheelchairs or whatever and then get devastated when that's on the menu.
5. It's possible that therapy solutions that work really well on kids with different CP won't work on M's CP and vice-versa so I can keep that in mind as I explore those things.
6. It may be important for diseases later in life. For example, the area of Malachi's damage is where Parkinson's is. There may or may not be a correlation, but it's something worth knowing.
7. It's good to be able to relate to people online who may be dealing with similar conditions but you can't see each other's children.
Those are just some I thought of off the top of my head, but like I said, I'm sure you'd be better off just saying "whatever."
Love your answer Shasta as to why it's important (for you) to know all the ins and outs of Malachi's diagnosis. I feel the same way.
DeleteI went through a lot of those at first as well - curiosity, trying to get a handle on what reasonable expectations were, what's out there for certain "types" (like clearly, a kid without spastic legs doesn't need SDR, and a kid who's not hemiplegic wouldn't need constraint induced therapy). But then it was just too stressful reading about it all, since you still couldn't ascertain what would actually apply to Julia, etc., and it is too much to be thinking about all the "what if's" that could come down the line. I'll just deal with that when/if it happens.
DeleteAnd for a lot of it though, you still don't need a diagnosis. Like, you can tell that Malachi isn't spastic regardless of whether you got that diagnosis.
As for the fact that it may not be CP, well that's just something anybody would want - to make sure the diagnosis is actually right.
Shasta,
DeleteThanks for your answer. I do want to be abundantly and crystal clear that even though I don't let the specifics of her diagnosis consume me, I do not, in the slightest, think "whatever".
Where I get 'overly consumed', differently, is regarding my daughter's immediate future medical plan. I often get into friendly (and sometimes hostile) disagreements with therapists and other providers with how aggressive her treatments are. I'm all about aggressive treatments based on our results. So, had I listened to the beginning doctors who treated her from 0-2 years old, she would be in a "vegetative state due to the extent of her brain damage and PVL". I changed doctors. She's not in a vegetative state.
So all I was asking, I guess, is why is the super specific diagnosis important; will it truly change any thing you do/are doing/will do.
But I have never said "whatever". Period.
That's all. I'll leave it alone from here on out.
:)
This is where doing stuff with no face to face interaction causes problems, ha! Because I kind of thought the same thing about Cary's comment regarding "knowing the ins and outs of Malachi's diagnosis." Just because I have moved into not particularly caring about having a precise label for Julia's particular brand of CP, doesn't mean I don't know the ins and outs of her condition, and the types of treatments available to help her with her specific problems, what her current condition can progress to (i.e., contractures, muscle shortening, etc). I just choose not to get bogged down in labels, because I've found it for me to not be as helpful as I initially thought it would.
DeleteBut I'm guessing that neither of them meant to imply that by us not caring what the precise label is, we are somehow shortchanging our kids or not taking their diagnosis seriously.
Yes, Amy!! Of course! Thank you!! I definitely didn't mean to offend or misrepresent either of you. You asked why I would want to know, so I listed some reasons I thought of. I used "whatever" because that's the word Amy used. I'm sure neither of you a laissez faire about your kid, but I do know some people who are (or feel) more enlightened about all this and are able to shrug all this off and I'm extremely jealous of them. Maybe some of that resentment came through in my word choice, but it certainly was not about casting them or you in a negative light for your outlook, whatever it may be. In fact, I was trying to say that I think your way is better.
DeleteWho knows, you may move on to the "label schmabel!" category too. After awhile it just gets too tiring, especially if you keep getting different diagnoses from everybody!
DeleteKind of off topic, I guess compared to other commenters, but I want to affirm when worse is better and hen lowering of expectations actually makes life more deal-able. My husband had a really hard fall, starting when I dropped him during a transfer. (He says "ACCIDENT, it was an ACCIDENT, not your FAULT." I try to hear this. Anyway...). What seemed like the end of Life As We Knew It actually has ended up being really good - we've gotten more/better equipment, more help and J is working less (which is a good thing, believe me). It's been hard-won, but I feel like we're on the other side of a new kind of acceptance and lack of denial about the realities of our life. So, good really really really outweighing the bad here.
ReplyDeleteThanks, Jennifer! That's good to hear. I recently read a post from the mother of a little boy who just got a G-tube in (something I've feared for a long time, she did too) and she's like WOW, this is so much easier! Why did I fear that for so long.
DeleteNice. Glad things worked out for you. And no, it wasn't your FAULT because you didn't drop him maliciously!
Shasta - I love this post (as usual). And I think you're right about the whole 80/20 rule. There really is so much we (and our children) can do to overcome the brain injuries that they have. And thanks again for the shout out on your blog!
ReplyDeleteI hope that more information about Malachi's diagnosis brings you peace.