Ginny, I am sorry you were put through this, but unfortunately in my vast experience of dealing with doctors for rare conditions and an evasive diagnosis, her attitude sounds pretty typical. To me it seems like doctors have been taught to believe they are always right regardless and to go on the offensive with patients who strongly advocate for themselves. That has certainly been my experience, except in a few rare cases (e.g. my endocrinologist who is textbook ADHD-I!).
I have found that the person in our pediatric practice who is most open to discussion about Autism and Ehlers-Danlos syndrome is the NP. I always go to her first for this stuff. After that, I go down the list of the other docs with the male ped at the very bottom...
If you can find another ped in the practice who is willing to work with you, great. If not, maybe the DAN! doc will recommend a general ped who is less closed-minded.
Well over the last 8 years I have had dealt with three peds and two family practitioners and have found all the peds are incredibly stubborn and inflexible, (yes even the current ped who's ds has ASD-although jury is still out as we've only seen him twice; could just be getting to know you reservedness on his part).
The other two peds were awful, uneducated as to ANYTHING alternative or remotely so. However the two family docs we had were pretty good; more understanding about my vaccine questions, I was never berated or bullied by them; in fact we only took the kids from the last family practice as it lost a doc and NP within a year and they were getting overwhelmed so we couldn't get immediate appts- that and their hours are a bit restrictive. The actual lead doctor there is brilliant and hysterical and my only regret is as he is our doctor we can't hang out, lol.
If our current ped seems in the same mold as the others I'll move the kids back once the new hires are in place.
Honestly in my experience a huge practice often has this intolerance. The smaller ones tend to be a bit more flexible with their ideology and are better listeners. And as you get used to the medical field poo pooing many things you try, you start to tell them as much as they need to know, kwim? I briefly mentioned to my own doc today I was taking Liam to a DAN doc on Monday and he asked what a DAN doc is, lol; I played it up as a nutritionist; he liked that;)
I can totally understand your frustration. It sounds like the dr thinks she knows everything and is completely unwilling to listen to anyone else. When Lily was a baby, our ped. belonged to a large practice. It was so frustrating to get referrals or anything else. Also, one of the ped's in the group was a total jerk! Lily had severe reflux as a newborn and was having trouble gaining weight. The ped told us to concentrate her formula. We did and within a couple of days we noticed that when she pooped, it came out like fizz (sorry to be so graphic), she was pooping 8-10 times a day, and the skin on her bottom turned bright red and then literally all peeled off. We could see our reflections on her bottom! It looked like red glass. Well, of course we called for an appt. and ended up having to see the jerk doctor because our reg. dr was unavailable. In a nut-shell, the jerk dr. said we were not cleaning her properly and that it was our fault! My dh was so ticked off and I was crying. I tried to tell him that we had an older child and that we knew how to care for a newborn. He wouldn't listen. We saw our reg. ped a few days later and he decided to change Lily's formula to the kind put in feeding tubes (no milk, corn, etc). The new formula worked great! When Lily was about a year old, we had her tested for food allergies. Lo and behold, she was allergic to milk and corn (among other things)! That would explain why the concentrated formula burned her skin off. One of the main ingredients in regular formula is corn syrup. It seems like some docs are total idiots! They act like they know everything and that parents have no brains. I hope that you're able to find a new doctor soon who will be willing to discuss autism and it's treatments with you in a respectful manner. Our current ped is really great and is very good with my dd's. Good luck with your search for a new ped!
geeze what a piece of work that dr. seems to be! good for u for speaking ur mind, although im sure u could have said soooo much more to her! ;) id definitly write the letter!!!
I have to say, if I don't have a open minded doc, who will listen to me as a mother, as a person that knows her own body, that won't listen to you period, then that doctor will never see me again.
It took me years to realize this.
I grew up in the day that the Doc was always right, and you had no right to argue.
I'm with Lainie. If the Doctor isn't willing to listen to you and shows such disrespect you should dump her in a heartbeat. As many on this board can yell you finding a good Ped. that is also up on the whole ASD thing can be difficult. When I nursed my son he developed thrush so I was put on an antifungal and they said they don't give them out lightly because of serious side effects. The liver I think. Maybe she should have explained that before dismissing your concerns. Good luck in the search.
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Ginny,
I am sorry you were put through this, but unfortunately in my vast experience of dealing with doctors for rare conditions and an evasive diagnosis, her attitude sounds pretty typical. To me it seems like doctors have been taught to believe they are always right regardless and to go on the offensive with patients who strongly advocate for themselves. That has certainly been my experience, except in a few rare cases (e.g. my endocrinologist who is textbook ADHD-I!).
I have found that the person in our pediatric practice who is most open to discussion about Autism and Ehlers-Danlos syndrome is the NP. I always go to her first for this stuff. After that, I go down the list of the other docs with the male ped at the very bottom...
If you can find another ped in the practice who is willing to work with you, great. If not, maybe the DAN! doc will recommend a general ped who is less closed-minded.
-Paula
visit my blog at www.onesickmother.com
visit my blog at www.onesickmother.com
Well over the last 8 years I have had dealt with three peds and two family practitioners and have found all the peds are incredibly stubborn and inflexible, (yes even the current ped who's ds has ASD-although jury is still out as we've only seen him twice; could just be getting to know you reservedness on his part).
The other two peds were awful, uneducated as to ANYTHING alternative or remotely so. However the two family docs we had were pretty good; more understanding about my vaccine questions, I was never berated or bullied by them; in fact we only took the kids from the last family practice as it lost a doc and NP within a year and they were getting overwhelmed so we couldn't get immediate appts- that and their hours are a bit restrictive. The actual lead doctor there is brilliant and hysterical and my only regret is as he is our doctor we can't hang out, lol.
If our current ped seems in the same mold as the others I'll move the kids back once the new hires are in place.
Honestly in my experience a huge practice often has this intolerance. The smaller ones tend to be a bit more flexible with their ideology and are better listeners. And as you get used to the medical field poo pooing many things you try, you start to tell them as much as they need to know, kwim? I briefly mentioned to my own doc today I was taking Liam to a DAN doc on Monday and he asked what a DAN doc is, lol; I played it up as a nutritionist; he liked that;)
Dee
I KWYM....every time I have mentioned our DAN doc at our current ped (either to a nurse, doc or appt. maker) I've had to explain what DAN means.
I can totally understand your frustration. It sounds like the dr thinks she knows everything and is completely unwilling to listen to anyone else. When Lily was a baby, our ped. belonged to a large practice. It was so frustrating to get referrals or anything else. Also, one of the ped's in the group was a total jerk! Lily had severe reflux as a newborn and was having trouble gaining weight. The ped told us to concentrate her formula. We did and within a couple of days we noticed that when she pooped, it came out like fizz (sorry to be so graphic), she was pooping 8-10 times a day, and the skin on her bottom turned bright red and then literally all peeled off. We could see our reflections on her bottom! It looked like red glass. Well, of course we called for an appt. and ended up having to see the jerk doctor because our reg. dr was unavailable. In a nut-shell, the jerk dr. said we were not cleaning her properly and that it was our fault! My dh was so ticked off and I was crying. I tried to tell him that we had an older child and that we knew how to care for a newborn. He wouldn't listen. We saw our reg. ped a few days later and he decided to change Lily's formula to the kind put in feeding tubes (no milk, corn, etc). The new formula worked great! When Lily was about a year old, we had her tested for food allergies. Lo and behold, she was allergic to milk and corn (among other things)! That would explain why the concentrated formula burned her skin off. One of the main ingredients in regular formula is corn syrup. It seems like some docs are total idiots! They act like they know everything and that parents have no brains. I hope that you're able to find a new doctor soon who will be willing to discuss autism and it's treatments with you in a respectful manner. Our current ped is really great and is very good with my dd's. Good luck with your search for a new ped!
Amy~Natalie & Lily's mom
I'm so sorry that you had such a bad experience with
I have to say, if I don't have a open minded doc, who will listen to me as a mother, as a person that knows her own body, that won't listen to you period, then that doctor will never see me again.
It took me years to realize this.
I grew up in the day that the Doc was always right, and you had no right to argue.
Ginny, so sorry you went through that.
I know I am jumping in here late...but all I can say is What?
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