Yes, I'd participate. She'll probably get really awesome medical attention from it at little to no cost to you. Assuming it's fairly non-invasive, I think it's a pretty good opportunity.
Is the outcome and the duration of the treatment the same? If so, I would. But my experience with toe walking is my brother, who was born with club foot so had a brace then surgery and finally a cast to fix his toe walking issue and now he is totally normal (OK, he is a bit of an ass but his foot is totally normal )
And with studies like this, the cost of the treatment is usually fully covered. Not sure if that is a concern (the cost) but thought I would throw it out there.
Post by daisyheadmaizie on Jun 5, 2013 11:20:32 GMT -5
I would.
I have a good friend whose son was a tippy toe walker. He did PT and then they used casts to correct the problem. He did really well with the whole process and is doing great with no lingering problems now.
DS #2 was part of a case study comparing the efficacy of derotational casting vs. bracing for infantile scoliosis. I like to think his positive result with casting is going to contribute to the growing phalanx of literature and will convince more doctors that it should be tried first rather than jumping right on the surgery train.
My son was born with clubfoot and was treated with serial casting and now has to wear a brace 12 hours/day until he's 4. Both phases of his treatment just became part of our routine, although the weekly casting was time consuming. Do you have the option to choose which group she would be part of, if you have a strong preference over which treatment you want for her?
Post by EmilieMadison on Jun 5, 2013 12:11:45 GMT -5
I'd do it. It must be hard to think about all of it, but this sounds like a great opportunity. And the hospital near us are all SO good, I'm sure this would be a really beneficial option for her.
I normally hang out on Travel and I lurk over here once in a while, but I work on the regulatory side of clinical research. If you have any questions about something in the consent form or generally about being involved in a research study I'd be happy to answer them for you. To answer your question, yes, I would at least go through the screening. Even if you agree to it and she starts the study you're not obligated to do anything -- you can take her out of the study whenever you want, for whatever reason you want. And research involving kids is really scrutinized and those studies have to meet a lot of standards before they can enroll subjects.
Something to keep in mind, though, is that this sounds like an interventional, not observational, study. That means that it's not treatment -- they don't want your daughter to take part to help her personally, they want her to take part because they want to help other kids like her. If she's helped that's just a bonus for her. Also you might not have access to any evaluations or tests they do until the study is done, which can be a very long time, so that's not a reason to do it.
Travel is fatal to prejudice, bigotry, and narrow-mindedness, and many of our people need it sorely on these accounts. Broad, wholesome, charitable views of men and things cannot be acquired by vegetating in one little corner of the earth all one's lifetime. Mark Twain
We participated in a multi-center study with DS #2 and his casts as well. We were already going ot cast him, so we didn't have to do anything extra. We also were not compensated for any of it, which is fine our insurance covered a lot (not all) of the cost. The brace is another animal entirely. I took the perspective that whatever results they got with DS would help make the case that this kind of early intervention will benefit infants and young children with this disease and potentially save them from a lifetime of painful procedures.
I know it's scary Puddles, you do not have to make any decisions now--talk to your pedi and talk to the PT. It's very scary, but this is something you have to look at long term--does the PT think the casts will cure her?