Finding Doctors who care

preggersINschool25

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.

ToastieSimons

Ugh, that must be so hard.  I felt that way about our old neuro.  Every time we went through everything all over again.

But our physiatrists have been amazing.  Our first one (we moved out of state 2 years ago) had gone to school with our PT and knew each other so I felt like we had a connection.  He always remembered us.  Also, my boys have hypertonia since birth which is really rare so I think it triggers a memory.

Our physiatrist now is AMAZING!.  She is truly, genuinely concerned for her patients.  She wants to 100% help them succeed and get as far as possible.  She always remembers the boys.  I'm not even sure if she doesn't just reread their file before we get there but she always makes us feel important.

What about your regular pedi?  Do you feel like they are there for your son? If not, I may start there and find one who wants to go to the ends of the earth for your son also.

hopecounts

I'm with Auntie, my pediatric endocrinologist (hypothyroidism + Turner's Syndrome) was a great Doctor but his bedside manner was iffy. But he was definitely coming from more of a research perspective.

Still love him and in some ways it ended up being great for me because he was so on top of the research/treatment/care that I needed and he also was great about shifting my medical decisions to me when I was ready and helping me learn to self advocate for my 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.

MaxandRuby

Eh, I wouldn't necessarily remember a broken foot unless I saw you multiple times in a fairly short time frame.  He could have been simply asking each time to make small talk/break the ice as well.  Doctors see a lot of different people in a week and some they don't see for months at a time so I never expect them to remember anything...other then what they read in my son's file.  :-)  I also agree with Auntie.  I know the doctor I felt was the most assholey was the neuro who diagnosed my son, but he was also higher up in authority and I think did some research as well.

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.

bumpuser511563

MaxandRuby said:

Eh, I wouldn't necessarily remember a broken foot unless I saw you multiple times in a fairly short time frame.  He could have been simply asking each time to make small talk/break the ice as well.  Doctors see a lot of different people in a week and some they don't see for months at a time so I never expect them to remember anything...other then what they read in my son's file.  :-)  I also agree with Auntie.  I know the doctor I felt was the most assholey was the neuro who diagnosed my son, but he was also higher up in authority and I think did some research as well.

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.

preggersINschool25

I forgot to mention the geneticist as one of our specialists. Probably because I struggle to spell it every time. We have had a microarray and whole exome sequencing along with specific syndromes tests done.

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.