Routine medical care for adolescents with severe disabilities
Tomorrow I have an appointment with a local M.D. who has a unique practice that combines alternative and traditional medicine. I am feeling fine, but am in search of a different type of doctor to assist us with Quincy.
Adolescents with severe disabilities fall into a funny place when it comes to routine medical care. We have our specialists, like our pediatric neurologist, who are brilliant in their areas of specialty. And, we have a pediatrician that I find is most suited for well-baby visits, immunizations (which is an issue between us), and ear infections. It has become clear to me that Quincy is a bit more complicated than what most pediatricians deal with and they really aren’t the foremost authority on what she needs. I have spoken to my gynecologist about Quincy and she is willing to take her on as a patient, but again, I think she will mostly be useful with women issues that is stuff I ’m not quite ready to face.
I need a doctor that understands the basic, yet unique, health needs of a child who sits in a wheelchair, is unable to do any unassisted weight-bearing, and requires total care for all her needs. Because children, particularly teens like Quincy, who have these challenges have very different needs for every day health. I need to understand more about her nutritional needs and I am interested in the alternative medicine because it is generally less invasive. Lord knows Quincy takes enough pills and has had enough invasive procedures to last a lifetime, so I don’t need another doctor who wants to poke and prod and prescribe more medication.
I hope my interview disguised as an appointment goes well. Because I, too, need a doctor who understands the issues I face on a day-to-day basis. I need someone who can advise me on my health and who won’t simply tell me to get more rest or find some help. I need someone who understands that my life is what it is and to take that into consideration when treating me. I have done this type of interview before and have not yet found what I am after. I will keep my fingers crossed that maybe this new doctor will fit our needs.
2 Comments to Routine medical care for adolescents with severe disabilities
I haven’t thought about the gynecologist thing yet, but I do worry when Jenna starts her period. I can help her at home, but who will help her at school? It is going to happen soon; she has already developed and it is just a matter of time. I kind of hope is starts over summer vacation. At least Jenna will have a chance to get a little used to the whole experience before school starts in the fall. She is aware of menstruation, but being aware, and it actually happening, are two different things. I hope the school has someone to help her when it does happen.
TawnyMay 18, 2009
Quincy started quite young (11) and it has been something that we still struggle with. It seems she is afflicted with terrible cramping and it causes her a lot of discomfort. Right now we are just handling things naturally, but at some point I suppose we can consider alternatives. This is one reason why I would like to find someone who is willing to work with us on things like this. The school hasn’t been much help, so we’ve been on our own and we just want to be sure we are doing everything we can to keep her healthy and strong. I’ll let you know how it goes….
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National Vaccine Information Center (NVIC)
May 18, 2009