In the 10 years since I've become a parent, I have not managed to learn how to co-exist with Paige's doctors.
I try.
I try really hard actually.
Meeting new docs/specialists usually causes great amount of stress for me. I go into the appointment with an open mind. I try to remember that my knowledge may come across as arrogant. I don't mean to come across that way. I also realize that my skeptic nature comes out, no matter how hard I try to hide it.
It's not that I think that doctors are not capable of treating my child; there are many intelligent doctors out there. Unfortunately, I haven't come across too many that have experience with preemies and the long term issues that plague them. Most all of them have either dismissed our concerns (only to be wrong later) or are surprised when they see how intelligent Paige is and then they decide that "she looks too good to have any issues.".
For the past 2 1/2 years we have been using a GP, for all of us. Without getting into too many details, we are changing docs and the kids will now be seeing a pediatrician. I need to set up an appointment to meet this new doc, before I bring in the children.
I will, once again, try to close my mouth and smile. I'll try hard. I will try not to show how jaded I've become and try to give this new one a chance.
I'm already stressed about it and I haven't even made the appointment.
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A community of people dedicated to the open discussion of the long term effects of prematurity.
Who... Me?
- ThePreemie Experiment
- I am the mother of 2 preemies. My daughter was born at 25.5 weeks and my son was born at 35.4 weeks. I am passionate about helping to educate others on the long term impacts of prematurity.
Prematurity Related Research
- Epicure-Neurologic and Developmental Disability at Six Years of Age after Extremely Preterm Birth
- Glucose Regulation in Adults With Very Low Birth Weight
- Neonatologists' Practices and Experiences in Arranging Retinopathy of Prematurity Screening Services
- Relationship Between White Matter Apparent Diffusion Coefficients in Preterm Infants at Term-Equivalent Age and Developmental Outcome at 2 Years
- Resuscitation in the "Gray Zone" of Viability: Determining Physician Preferences and Predicting Infant Outcomes
- Specific Language Difficulties and School Achievement in Children Born at 25 Weeks of Gestation or Less
- Stateman Article-Part Two
- Statesman Article-Part One
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16 comments:
Maybe this web-site will help you find a new doctor/pedi? Best of luck:
http://www.ratemds.com/social/
The great thing is that, unlike any other kind of doctor, pediatricians are accustomed to "meet and greet" appointments with new parents-to-be. Finding a new pediatrician for older kids shouldn't be too different. Maybe you can arrange to talk with a few docs and hopefully find one with whom you click?
UGH - Doctor shopping! In my son's LONG medical history he has had only 2 physicians that were a perfect match. The Doctors and I worked in nearly seamless partnership, I was so spoiled! Luckily we still have one of these around (his neurologist/CP specialist). The other, (our primary developmental Pediatrician), has given up his general pediatric practice. Even though the outgoing Ped handpicked his replacement, it just isn't working. I have found over the years that the Dr and I must have reciprocal trust and respect. I hate being patted on the head by someone saying "Now, Mom......" Worse yet are the so called "specialists" that dismiss my concerns outright because "Well, he does have CP" - Thanks for pointing that out Doc, but we were discussing his chronic strep???
Stacy,
It is hard when you have half a brain not to alienate professionals. They all believe and say they want an informed, collaborative patient base, but their actual training in medical school teaches them to be decisive and directed in their approach to a problem, first to get "kudos" in their training, and then they are told that this behavior will instill confidence in their patients. I think in previous generations that was probably more true than now (my Dad for instance was a brilliant guy - but he *completely* deferred to "what the doctor said" EVEN when I could show him that the "standard of care" had changed in peer reviewed journal articles ... for him it was black and white Dr. X said it, and therefore it must be so.
There ARE MD's out there who really do want and enjoy a partnering experience. My Ped and I have worked together for 20 years and it's been a great experience. On the other hand, Ali's been to some specialists who made my skin crawl ... when I asked about stats and future possibilities they LITERALLY said, now "Mom, don't get all worried about stuff like that - I'll tell you when to worry". It was hard to smile and say "thank you Doctor" but I did - yet, their actions not only didn't quell any emerging anxiety - it had a paradoxical reaction - I suddenly became overwhelmed with fear and forced myself to spend hours and hours in pubmed. My personal MD is a very sweet woman, who doesn't have a single clue about plasma cell dyscrasia's, MGUS, smoldering myeloma or actual myeloma. BUT, she KNOWS she doesn't know and is a peach about ordering any test I decide from my research would be helpful. The initial oncologist she sent me to was one of the few MD's I had to fire, but the second one is pretty good. I WISH my MD knew more about the issues I face, but I recognize that there are limits to anyones brain. So I was happy to settle for a doctor who didn't know anything, who was keenly aware of that fact and happy to do what I asked.
Sheila
We're currently looking for a doctor for Erin, we wont be seeing our neo for much longer so we really need to find someone who knows what the deal is. Unfortunately every time I try to explain what Erin went through and how early she was born eyes bulge and mouths gape. Not exactly the response from a medical professional I'm hoping for.
It's frustrating. I'd really like to find a doctor who knows more than I do. And yes, I do realize how arrogant that sounds.
We had a wonderful Family Practitioner who I went to in tears when the girls were a year old - after I found out my daughter had been "experimented" on in the NICU without our knowledge. (I read every page of her NICU medical records, and went off the deep end.) I HAD to find someone that would take us on, and he did. He then immediately referred us to a neurosurgeon in a distant city - the medical school where he trained at, so he knew the specialists well. . .
Anyway, the FP was an absolute godsend to our family. He too, was the first to admit when he didn't know something, but would find out the answer, and he did. He was always very encouraging, willing to listen, and I'm certain, took more than the scheduled appt time to sit and chat. He even went to court for me during my messy divorce.
This man is who I measure all other Drs. by - and I can say with all certainty - I've never, ever met another MD in all these 23 years of NICU aftermath that measures up to him.
Unfortunately, he had to retire early d/t his own health condition, and I miss him.
I don't have an answer on how to find someone like this, but for the kiddos who have on-going emotional issues, I'm wondering if contacting a pediatric neuropsych in your area and asking who they would suggest for a GP or Ped could be a start?
Luckily, a partner of this GP has taken on the care of the girls - into adulthood. He is very good too. . perhaps because he has his own kid with full blown autism at home. He knows what it takes to be a "special" parent.
Maybe that is another approach - calling a few peds practices and asking if any of the pediatricians have children with disabilities of their own. .
Well, we'll see how it goes. I am meeting with the new doc, by myself, tomorrow afternoon. I'm hoping it's a good fit. She has 5 kids of her own, all with ADHD and they are all homeschooled. I guess my biggest worry is that I'll come across as arrogant from the start. lol
Future of Hope wrote: "I hate being patted on the head by someone saying "Now, Mom......" Worse yet are the so called "specialists" that dismiss my concerns outright because "Well, he does have CP""
I agree! Either patting me on the head or patting Paige on the head is a huge no-no with me. Too many docs have done that to both of us. I actually walked out of a neuro appointment (after letting the neuro know how I felt) because he patted Paige on the head while telling her that her legs don't really hurt.
Sheila wrote: "So I was happy to settle for a doctor who didn't know anything, who was keenly aware of that fact and happy to do what I asked."
You've just described our current doctor. The problem, for me, is that I am in a constant state of worry that *I* am missing something since I am the only one directing her medical care. I am at a place in my life right now that I need a sounding board and someone to discuss the issues with me. Maybe I'm just not as confident in my parent/medical researcher skills anymore. lol I will miss our current doc because I could get anything that I wanted. But, I am looking forward to finding someone who will make sure I'm not missing anything.
Bec wrote: "Unfortunately every time I try to explain what Erin went through and how early she was born eyes bulge and mouths gape. Not exactly the response from a medical professional I'm hoping for."
When we first moved here we had a pediatrician (opposed to our current FP). During the first meeting with Paige, while I was giving her medical history, the doc stopped me when I got to the "25 weeker" part and said, "Wow, I've never seen one of those make it to her age." Yikes! We are talking about a 25 weeker here doc, not a 21 weeker.
It went from bad to worse over the year that we had her. If you asked Paige about her she would instantly get mad and tell you all how the doctor yelled (yes, yelled) at her because she was "too skinny".
terri w/2 wrote: "I don't have an answer on how to find someone like this, but for the kiddos who have on-going emotional issues, I'm wondering if contacting a pediatric neuropsych in your area and asking who they would suggest for a GP or Ped could be a start?"
This one comes highly recommended by the PA at the neurologists office. I'm hoping she will be understanding since all of her kids have ADHD. Wish me luck!!
Good luck.
I do feel extremely lucky to have the pedi we do. When our insurance switched, we could continue to see any doctor we would like but if they were out of network we would have to pay a co-pay. I didn't even consider switching to a doctor in the network, our pedi to just too good to us. The thing I like about her the best is how when I bring in either of the boys, she will always ask about the other boy. Plus she will call me with test results, not her nurse - she will call.
Those of you who know me know I have spoken about Medical Home before. I probably sound like a broken record. But I feel I must keep crusading for this:
DO ANY OF YOU HAVE ACCESS TO A MEDICAL HOME PRACTICE? Medical Home is not a place--it is a way of practicing medicine that honors the needs of patients and families of Children With Special Healthcare Needs (CSHCNs). It offers enhanced accessibility. It works at building parent-doctor partnerships. It is culturally sensitive; and co-ordinates (with all the specialists and school servics, and therapies/therapists)cares for seamless comprehensive care.
Sounds like Shangri-la? Yes. And it is not widely practiced--even though the American Academy of Pediatrics recommeded it beginning in 1967! You can find info on Medical Home at the AAP web site.
There are practices in MA and VT and NH that post detailed info on how their practices work: see Center for Medical Home Improvement, CMHI. They have a web site. Also, under the U.S. Bureau of Maternal/Child Health.
I understand that even if you find a Medical Home practice, you may still not find the "perfect fit" ped. If that happens, may I suggest that you, the parent, act like a professional. That is, behave as if you can establish a working relationship with the doc even though you may not have warm and fuzzy feelings. AND I think we can teach our kids to be professional in their relationships with their docs, as well. Certainly someone like Paige can learn to do this. Younger kids, or kids with more severe disabilities--maybe not.
The truth is, we have all been the managers and care-coordinators for our kids' health needs, filling in a great many gaps and unmet needs, as Stacy says in her original post (where she is afraid that one day her intense research and watch-dogging will miss something). That management and care-coordination makes us professionals, in my view. And of course it is insulting to be patted on the
head--professionals don't do that to one another.
Chris and Vic
It's not just you. Sometimes I wonder if doctors are threatened by not being the omnipotent, all knowing beings with all the answers.
Yesterday Dan asked me what I was going to do if my doctor said things that contradicted things that I know/have heard online. I told him that I didn't know and hoped it wouldn't happen. But he's certainly aware of the amount of information "out there" and the possibility that the doctor may in fact be wrong. I was surprised at his comment but he definitely has a point.
I really hope you are able to find a good doctor for your children (and that mine will live up to my expectations, I don't see him until the end of March!).
Chris wrote: "That is, behave as if you can establish a working relationship with the doc even though you may not have warm and fuzzy feelings."
I'm taking your advice Chris. No warm and fuzzys with this new doc and one big difference of opinion. I switched the kids over anyway and I'm going to try to behave.
I'm glad to hear that I'm not the only one who feels so strongly about finding/keeping a good doctor. After moving 3 years ago, I couldn't bring myself to find a new ped. I've experienced enough bad doctors over the years to know how important it is to hold onto a good one. I do sometimes feel a little weird telling people that we drive 40 minutes to get to our ped. I still think he's worth it though.
The most important ingredient in a good doctor: being a good listener.
How do you shop around for a peditrician who has familiarity with preemies? My wife and I are now 7+wks into the NICU with our daughter, and it seems almost time to be able to worry about life after the NICU - in a couple more months, knock on wood. Her OB/GYN recommended a doctor with preemie experience... even only 5 minute drive from our house... then we found out he was the OB/GYN's pediatrician when she was a girl... That's all well and good, but how much longer will he be in practice? And, he's very busy, and apparently getting an appointment is a chore in and of itself. I don't want a Dr for a matter of a few years...
You can google or check your insurance Dr book all you want, but they don't have them listed as "preemie knowledgable". Is it a matter of calling around and asking, basically? Fishing with an unbaited lure? How did those who found the "fit" find the fit?
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