Five and a half years old.
Three surgeries under her belt.
Today’s clinic went well. We touched base over our bladder and bowel control regimes. We discussed future options. We talked about progress and progression.
She still has a touch of kidney reflux, but nothing worse. So that’s a positive. We are going to test out a higher dosage of Ditropan. First briefly to test her physical reaction. If she gets too flushed, or dehydrated or otherwise reacts negatively, we will reconfigure. Likely going to 5mg twice a day, instead of the 10 all at once. Hopefully that will help her stay dry between cathing, which shall remain at 3-3.5 hr (preferably 4, but we can deal with 3 during the day) more consistently. If the 10 mg still doesn’t do enough, we will add Sudafed. But again, hopefully it won’t come to that. Things aren’t horrible now, just not super consistent. We are hoping to line that out a little more. Also, after next clinic (in a year) we will try backing off the Bactrim to see if she then develops a UTI, to determine if the Bactrim is still necessary. She is on a very small dose of it now, so it *is* possible she would be fine without it. So, next year, we will test that theory.
Bowel control. We will experiment again with frequency. We tried every other night before and it seemed like there just wasn’t ‘enough’ on the nights we did it to have made up for the night of not doing it. And it continued to not be as productive as the nightly ones were. Though even nightly, we would go a couple of nights and then it seem to not be as much. Obviously, we are still figuring out what’s normal for her. We will try omitting a night or two a week, consistently, to see where that gets us. And then maybe move to every other night, watching for bloating, stomach aches, and constipation. Otherwise doc was content with what we were doing, how we were adjusting and figuring things out for ourselves, confident we had this under control.
Neuro says all is well. She is functioning fine, progressing, not regressing. She’s meeting typical goals, no concerns. Again he mentions the statistics regarding a retether surgery. In studies, half the patients needed surgery by age 10. Very few under 5yr. He’s good at keeping it real. Yes, there’s a possibility of retethering. Is it a guarantee? No. Is it a guarantee it won’t? No, can’t say that either. There’s a 50% chance that by the age of 10, she will need a detethering surgery. But in typical Dr. Oakes fashion, he then rephrases “…or a 50% chance she won’t…” Folks on the Spina Bifida page I frequent were talking about a neuro psych evaluation at this age. I asked about it and he wasn’t concerned at all. He said if I was asking him to set one up for her, ok, he could do that. But did he see it as necessary? Not at all. She was not a candidate for concern in his opinion. I also asked his thoughts on chiropractic care. He was not inclined to such. He says it would do nothing at all for cases such as hers. I’ll have to mull that over a while. I believe in chiropractic care and believe it *can* do some amazing things. No I’m not expecting it to cure her. Oh goodness no! But might it help keep things loosened and keep her from having the leg falling asleep as she’s had a couple of times now? That’s all I’m asking for. Keeping things loose. So, I’ll have to think about that some more and continue discussion with our chiropractor. I may still have her receive some treatment. Not anything aggressive at all, and not even very often. But maybe ‘here and there’ ?? We’ll see.
And that pretty well sums up our visit. Our neuro will not be seeing us next time. This is the end for him, his last year. It’s kind of weird to think about that. I mean, we knew it would come. He wasn’t exactly a spring chicken when we met him. We were sure he would leave us before we left him (provided we didn’t leave this state any time soon), but still..it’s…something. This man who diagnosed and operated on our child in such a delicate manner..who has been with us for 5.5 yr now..will no longer be walking with us.
Oh, I guess I forgot something, ortho! As mentioned before, last fall’s surgery *did* help her right foot, but it did not do all that we had hoped it would. Last winter we were already discussing another surgery next fall..that we would discuss that at clinic in June. So, here we are. Surgery is still slated for the fall. Of course the exacts of that will be defined later. Doc will review xrays and notes and devise the best plan of action. That is likely to take a few turns over the course of these few months. But…she *will* be having surgery on her right foot again in the fall. Another tendon release/transfer…thing.
Now, that is all. I believe.