An anticlimax to #thepatientexperience
...thank goodness!
So, it turned out that today's appointment went fairly smoothly. There were no big surprises, the doctors and therapists saw us in a timely fashion and we were out the door by 11 a.m., a full three hours earlier than the scheduler told me to anticipate. (Part of that was that the Occupational Therapist was sick and didn't do her evaluation, but still, pretty good.)
My Twitter project didn't work out as I expected because there weren't large blocks of time in between specialists as before (which is a good thing!) and my cell had very spotty service in the clinic. You can read my full stream here or check out the ones I remembered to tag at #thepatientexperience.
The exchanges with the specialists were amiable and I answered their questions to the best of my ability. It still took me asking them to explain the findings of their evaluation for them to do so, but I was expecting that, so I wasn't angry about it like the last few times.
The speech-language pathologist said Malachi was on-track in his babbling, but that his play and comprehension seemed a little more like a 6 or 9 month old's. We both felt that a big part of this delay is his inability to show us what he can do. (Remember how I said, It's all connected?) For example, I know that Jaden can understand his name and simple commands because when he wanders over to something he's not supposed to touch I say: "Jaden?" He looks at me. "Don't touch." He looks dejected and inches away. Malachi isn't really capable of touching anything he's not supposed to, so I never need to give him a command or get his attention with his name. Of course, I do say pleasant things like "Hi, Malachi!" And he looks at me. And: "Want this?" and he grabs for it. But it's not as clear-cut as my interactions with Jaden. It's possible that he is simply looking at me when I call his name because he looks at me when I say just about anything. It's possible that he's grabbing for the toy because my body language and facial expressions indicate that's what he should do.
The thing I want more than anything is for Malachi to be able to speak normally. I've heard that adults with CP are most frustrated with their inability to speak clearly and/or perform fine motor functions, such as buttoning buttons. But ever since he was diagnosed with a swallowing disorder I've realized that it's extremely likely that he will have trouble speaking. So I was happy to hear the SLP's diagnosis and when I asked her if she thought the feeding problems will interfere with speech she essentially said: "Not yet." Which is better than yes. But not much.
We had a brief break, just enough time to tweet a bit and hand Malachi a Baby Mum-Mum
to snack on, when the developmental pediatrician came in. He did some now-familiar tests, such as feeling the tightness of his muscles, checking his reflexes, standing him up, etc. Just like last time, he finished his evaluation with little to no explanation and asked if I had any questions. While last time I felt enraged, this time I was simply bemused.
I asked if he could explain his tests in more detail and what specifically he found. He said he was even more certain than last time that Malachi has non-spastic or extrapyramidal cerebral palsy and that this is "reassuring." He said that his ankles and hips look fine; that his legs have some tightness but that they can be stretched, which is good; that his head control is better, his hands are more open and functional and he stands better on his feet than before. He said things are "moving in a good direction."
These are all things we already knew.
Whenever I asked a question about treatment — such as courses of therapy or the need for special shoes — he said little, mostly preferring to defer to our physical therapist.
I told him a little about the Anat Baniel Method we're doing, which he recognized as Feldenkrais. He was politely interested but certainly didn't seem like he would check it out and maybe tell his other patients about it. I mentioned that we are doing conventional physical therapy only about three to four time per month now. He didn't seem concerned about that or mention research in the last few years that says that intensive therapy is vastly more effective in brain injury victims.
Overall the take-away advice from both the SLP and the developmental pediatrician was: "Keep doing what you're doing."
For some reason, they don't seem to notice or mind that almost nothing we're doing has come from them, the "experts."
"Keep doing what you're doing."
Yep. We will.
 |
| Malachi tries to fend off Jaden's attempts to steal his cheerios. |
The exchanges with the specialists were amiable and I answered their questions to the best of my ability. It still took me asking them to explain the findings of their evaluation for them to do so, but I was expecting that, so I wasn't angry about it like the last few times.
The speech-language pathologist said Malachi was on-track in his babbling, but that his play and comprehension seemed a little more like a 6 or 9 month old's. We both felt that a big part of this delay is his inability to show us what he can do. (Remember how I said, It's all connected?) For example, I know that Jaden can understand his name and simple commands because when he wanders over to something he's not supposed to touch I say: "Jaden?" He looks at me. "Don't touch." He looks dejected and inches away. Malachi isn't really capable of touching anything he's not supposed to, so I never need to give him a command or get his attention with his name. Of course, I do say pleasant things like "Hi, Malachi!" And he looks at me. And: "Want this?" and he grabs for it. But it's not as clear-cut as my interactions with Jaden. It's possible that he is simply looking at me when I call his name because he looks at me when I say just about anything. It's possible that he's grabbing for the toy because my body language and facial expressions indicate that's what he should do.
The thing I want more than anything is for Malachi to be able to speak normally. I've heard that adults with CP are most frustrated with their inability to speak clearly and/or perform fine motor functions, such as buttoning buttons. But ever since he was diagnosed with a swallowing disorder I've realized that it's extremely likely that he will have trouble speaking. So I was happy to hear the SLP's diagnosis and when I asked her if she thought the feeding problems will interfere with speech she essentially said: "Not yet." Which is better than yes. But not much.
We had a brief break, just enough time to tweet a bit and hand Malachi a Baby Mum-Mum
to snack on, when the developmental pediatrician came in. He did some now-familiar tests, such as feeling the tightness of his muscles, checking his reflexes, standing him up, etc. Just like last time, he finished his evaluation with little to no explanation and asked if I had any questions. While last time I felt enraged, this time I was simply bemused.I asked if he could explain his tests in more detail and what specifically he found. He said he was even more certain than last time that Malachi has non-spastic or extrapyramidal cerebral palsy and that this is "reassuring." He said that his ankles and hips look fine; that his legs have some tightness but that they can be stretched, which is good; that his head control is better, his hands are more open and functional and he stands better on his feet than before. He said things are "moving in a good direction."
These are all things we already knew.
Whenever I asked a question about treatment — such as courses of therapy or the need for special shoes — he said little, mostly preferring to defer to our physical therapist.
I told him a little about the Anat Baniel Method we're doing, which he recognized as Feldenkrais. He was politely interested but certainly didn't seem like he would check it out and maybe tell his other patients about it. I mentioned that we are doing conventional physical therapy only about three to four time per month now. He didn't seem concerned about that or mention research in the last few years that says that intensive therapy is vastly more effective in brain injury victims.
Overall the take-away advice from both the SLP and the developmental pediatrician was: "Keep doing what you're doing."
For some reason, they don't seem to notice or mind that almost nothing we're doing has come from them, the "experts."
"Keep doing what you're doing."
Yep. We will.
 |
| Malachi's nap attack after the appointment. |
Having them not tell you anything you didn't already know I think is good. It's sometimes reassuring, to me anyway, to be able to say "yup, I have already surmised that about my child, so it's good to see we are both correctly assessing her abilities."
ReplyDeleteI wonder if the reason they don't advise any special type of therapy other than traditional PT or OT is because they know, in the end, parents are going to do what they want and that, except for controversial ones - like maybe shock therapy - none of it is going to *hurt* the kids physically. And, maybe they just have an understanding that *you* know your child best, so deciding what alternative therapies to choose from is all on you, since there's no one size fits all approach.
Yes, I agree it's good that we are on the same page. I certainly would have been upset if they said something I was totally unprepared for.
ReplyDeleteI dunno, maybe that's why they don't say anything. But then what's the point of going to them?
Sounds like the very same comments my daughter gets from the neurologist, physical, occupational and speech therapists. We too were expecting a more aggressive planned treatment. Instead therapy 3-4 times a month seems to be the norm. Lucky for the kids they have great moms that go above and beyond what the doctors say ....
ReplyDeleteI am so glad your day turned out better than expected!
ReplyDeleteI'm sure its frustrating to see "specialists" that have gone to extensive schooling and have extensive experience tell you what you already know. Maybe no news is good news, I don't know. I am sending a huge high 5 for finding time to do your own research and therapy with two little guys to care for :) Good job Mom!!
ReplyDeleteI wonder too if they just shut it and recommend just the "basic" b/c they're afraid of being sued. If they say, "you're child will never walk", and then five years later the kid does, the parents will say "if we'd done things sooner he'd have walked sooner, we're suing!" Or if they say "you're child will walk" and then they don't, people will sue for that too.
ReplyDeleteOr perhaps I'm hyper sensitive to the lawsuit equation, since there were apparently nurses in the NICU who did NOT want to work with Julia & Gabrielle because hubby and I are lawyers. We always joked about it, and then one day the nurse coordinating our primary team confirmed it. Our OT said too that there are therapists who don't want to work with attorney's kids for the same reason.
MOH: Yup. Yay, us! But still, it seems like the people with LOADS of training and experience with CP (and to whom we are spending THOUSANDS) should be the ones coming up with a plan instead of me, who barely knew what the words meant a year ago. What about the kids whose parents don't have the time, energy or education level??
ReplyDeleteThanks Jenny and Erin!
Amy: The lawsuit thing drives me nuts. It's probably also why they don't tell you about things like Feldenkrais (which we've found enormously helpful) even when they know what that is. There ought to be a difference between an official Doctor Recommendation and "hey, I haven't checked out the research, but some other patients have found luck with this, maybe you should try it."
So good to hear that the wait wasn't too bad! I know your frustration with the specialists. When I was diagnosed with my disease the specialists were telling me to do everything I was doing on my own! Hang in there and just try to have extreme patience!
ReplyDelete