How do I get doctors to take me seriously?

[Spoonful of Sugar]

Hi everyone,

I have posted on here before about my DD, who is a year and a half. She has some motor delays, and we have seen several doctors, but still have no idea what is going on. She is getting OT and PT, but with no diagnosis. I keep thinking she's doing well, but then I see other kids her age and realize just how far behind she is. The problem is, every doctor we have seen has spent about 5 minutes with us and then said there's nothing wrong, or I'm imagining it, or she's basically just a bad kid who is, I guess, pretending not to be able to crawl, stand up, climb, and feed herself????

We do have an appointment with a pediatrician which should be more in depth, but that's not till July. I was going to just wait for that, but then today we were playing in the backyard and she was bent over picking a flower and suddenly just fell on this cement path. There was blood everywhere and her face is really banged up. Nothing caused the fall other than the fact that she's just not very steady on her feet, even though she's been walking for half a year, and she doesn't know how to put out her hands or move her body to break her fall, so she always goes right on her face like that.

Anyway, after that I made a doctor's appointment for next week, but I think the one we are seeing is the one who told me, among other things, to "just sit her in the middle of a room and leave her there. You'll see, she can crawl."

So any advise how to deal with this if she brushes me off again? I'm sure some of you must have been through this in trying to get a diagnosis. I took a picture of DD's bloody face. Do you think I should bring it to help make my point? Or will that just make me look like a crazed mom? Anything else I can do?

 

[WheeledTraveler]

You said she's in PT and OT, have you asked her therapists for recommendations? They often know who is worth seeing, who is a waste of time, and may even have ideas for what you should be persuing in terms of diagnosis (they can't diagnose, but they can certainly say "I think you should get evaluated for x").

Good luck! I'm an adult with physical problems who has been fighting for years to get doctors to take me seriously so I understand where you're coming from.

 

[cm8]

Good Morning! I think PP was correct in recommending that you speak to the OT, other than that, I think you should consult a neurologist and see if your DD has some neurological deficit that may be contributing to her issues as well.

 

[tinytreasures]

I agree with the above people
ask them who they like and who you should see then call them right away don't wait for your ped unless you have to go there first for insurance stuff

 

[bookwormde]

you probably should be looking for a good pediatric developmental neuroligist. Having the OT and PT document their observations and concerns is very helpful.

bookwormde

 

[Spoonful of Sugar]

Thanks everyone! Good idea to ask the therapists what they think we should test for. I don't know why I didn't think of that before, but I do have an appointment with both OT and PT before the doctor appointment, so I will ask them then.

As far as seeing a neurologist or specialist of any kind, that's a problem here in Canada. We have to get referrals from our family doctor to see anyone else, and for some reason they seem really reluctant to ever give a referal. So it took us over a year and about 8 doctors before we managed to get an evaluation from public health, who then referred us to OT and PT, who then wrote our doctor and asked him to refer us to a pediatrician... now I have to convince this next doctor that we would benefit from some sort of testing or screening before our pediatrician appointment in July.

I love that we have universal health care, but I hate that we can't always get the care we need. I hope you guys in the U.S. don't have to deal with this as a result of the health care reform. I guess because we don't pay for our health care, everyone expects us to abuse it, so you have to prove your case to a doctor who is most likely not an expert in whatever health issue you are having. And... end of vent.

 

[WheeledTraveler]

I love that we have universal health care, but I hate that we can't always get the care we need. I hope you guys in the U.S. don't have to deal with this as a result of the health care reform. I guess because we don't pay for our health care, everyone expects us to abuse it, so you have to prove your case to a doctor who is most likely not an expert in whatever health issue you are having. And... end of vent.

You know, I just looked at your location and pretty much all of the bad stories I hear about doctors and referrals and such in the Canadian healthcare stories have been in BC and especially Victoria. I'm starting to wonder if it's where they send all the unhelpful GPs or something.

 

[Spoonful of Sugar]

You know, I just looked at your location and pretty much all of the bad stories I hear about doctors and referrals and such in the Canadian healthcare stories have been in BC and especially Victoria. I'm starting to wonder if it's where they send all the unhelpful GPs or something.

You could be right. This is the only place I have experience with, so I hope for the rest of Canada's sake that it's just something about Victoria healthcare.

 

[Spoonful of Sugar]

So here's the update:

We had the doctor's appointment today, and I am actually pleased with how it went. The doctor was very nice and reviewed DD's file thoroughly. She asked lots of questions, which has not been the norm for us, and seemed very concerned. She didn't order any tests, though, but I see her reasoning on that, and it's not because she doesn't believe anything is wrong: she wants us to wait for our ped appointment so we can address all the possibilities at once. That way she won't need as much blood work and also the ped will have the advantage of knowing first hand what was tested for, what the possible diagnoses might be, etc. One thing this doctor did say was that DD may be double jointed, which is something I had suspected. If so, this may be causing her difficulties with motor skills. So I'm hoping that's all it is. We'll see in a few months, and until then I'm going to try not to worry.

 

[WheeledTraveler]

One thing this doctor did say was that DD may be double jointed, which is something I had suspected. If so, this may be causing her difficulties with motor skills. So I'm hoping that's all it is. We'll see in a few months, and until then I'm going to try not to worry.

I just want to give a bit of warning that "double-jointed" (also known as hypermobility) is not always a "just" situation. I can think of several other posters on the board (along with myself) who are hypermobile (due to various conditions) and as adults it's given us some serious problems. That said, if it turns out that it's a matter of hypermobility if you can get her in therapy now it will help. And do push for therapy now if they pull the "many kids are hypermobile, most grow out of it" crap that doctors like to pull, just in case. And keep an eye on her because there are some conditions that aren't easy to diagnose at her age (because so many kids do in fact grow out of hypermobility so unless there are other signs that show something definitive or a family history they won't diagnose the conditions based on hypermobility alone until they're older) which can cause longer term problems and become quite serious. I'm not saying this to scare you, but so you know that it's worth fighting for the therapy to strengthen muscles to support her joints now if that is what turns out to be the issue.

Good luck!

 

[Spoonful of Sugar]

I just want to give a bit of warning that "double-jointed" (also known as hypermobility) is not always a "just" situation. I can think of several other posters on the board (along with myself) who are hypermobile (due to various conditions) and as adults it's given us some serious problems. That said, if it turns out that it's a matter of hypermobility if you can get her in therapy now it will help. And do push for therapy now if they pull the "many kids are hypermobile, most grow out of it" crap that doctors like to pull, just in case. And keep an eye on her because there are some conditions that aren't easy to diagnose at her age (because so many kids do in fact grow out of hypermobility so unless there are other signs that show something definitive or a family history they won't diagnose the conditions based on hypermobility alone until they're older) which can cause longer term problems and become quite serious. I'm not saying this to scare you, but so you know that it's worth fighting for the therapy to strengthen muscles to support her joints now if that is what turns out to be the issue.

Good luck!

Thanks so much for the info! I had heard that there could be some problems or other conditions that go along with hypermobility, but I don't know much about it. If it does turn out that this is what she had, I would welcome any and all info.