Special Needs
preggersINschool25
member
Finding Doctors who care
preggersINschool25
member
My son is very adorable and lovable. He is the boy who his therapists think about when they lay their head on the pillow at night. They go to extra training classes and do research to try and find ways to help or diagnosis him.
I don't think we have any doctors who care. Once they walk out of that room, they don't give Grant a second thought. In fact the first 3 times I saw our developmental pediatrician my foot was badly broken and he asked what happened all 3 times. You would think that a broken foot would make you somewhat memorable....
I posted below that my son is 2 and unable to crawl, walk, talk, eat, etc. He was born at 40 weeks and had no nicu time. He has had microarrays, and whole exome sequencing done along with tests do other syndromes. He's had an MRI and a million blood tests. We have secondary diagnoses (ones that do not explain the severe delays) of Hypothyrodism, Autism and now Ehlers Danlos. The last two not everyone seems to agree with. We see a Developmental pediatrician, endocrinologist, neurologist, and about to see an orthopedist and urologist.
So my question is - Do you have a doctor who you thinks truly cares about your kid? And where should I go to find one for my son? I live in north east Indiana, but I would travel to the end of the world and back if I could help my son.
I don't think we have any doctors who care. Once they walk out of that room, they don't give Grant a second thought. In fact the first 3 times I saw our developmental pediatrician my foot was badly broken and he asked what happened all 3 times. You would think that a broken foot would make you somewhat memorable....
I posted below that my son is 2 and unable to crawl, walk, talk, eat, etc. He was born at 40 weeks and had no nicu time. He has had microarrays, and whole exome sequencing done along with tests do other syndromes. He's had an MRI and a million blood tests. We have secondary diagnoses (ones that do not explain the severe delays) of Hypothyrodism, Autism and now Ehlers Danlos. The last two not everyone seems to agree with. We see a Developmental pediatrician, endocrinologist, neurologist, and about to see an orthopedist and urologist.
So my question is - Do you have a doctor who you thinks truly cares about your kid? And where should I go to find one for my son? I live in north east Indiana, but I would travel to the end of the world and back if I could help my son.
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Re: Finding Doctors who care
Largely because he was more brusque and was less emotionally involved so he could look at me objectively and accept that at 15/16 it was time for me to learn how to manage my care without my Mom doing all the work.
So keep in mind that sometimes a more pragmatic approach can help a Doctor see what's in the patient's best interest.
In regards to finding doctors that I feel CARE? I do not expect them to care for him personally if that makes sense. Again, they do not see him frequently enough to really make a bond nor am I looking to bond with them if that makes sense. I more want to be able trust them and their knowledge. I feel his therapists care more for him as a person but they also see him weekly vs every 5-12mos. I would say that out of my son's specialists, that I feel his neuro cares for him the most...but he is also the one we see the most frequently. **this is a different neuro then the one that diagnosed him.
I am reading what I have written and I feel as if I am coming off cold and for that I apologize. I swear I am not intending it that way! :-) I have a friend with Ehlers Danlos.
I agree with this.
The doctor has a lot of patients so it will be hard to remember all patients that is why they have files. If a pediatrician is trying to get my ASD DS to take a deep breath and got him to do it by blowing on a piece of paper. They are on my list of favorites. I do not expect them to know anything on ASD.
The ones that I believe care are all the therapists because they see DS every week for an hour or so. I love our SLP masters degree student because she is always on the look out for him.
I work at a college and have 350 students to assist and I don't remember any of them by name or what they have told me at the appointment. I do have files on all of them to see where I helped them though.
It is less of bedside manner or knowing our name that I'm concerned about. It is more that I feel like I have to start over explaining all of his issues everytime. And that they don't really spend anytime thinking more in depth about his symptoms and what may be causing them. I feel like because it isn't obvious and they haven't seen it before, they aren't trying. Or I feel like since we are working with so many specialists that they think someone else will diagnosis him.