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Time for a new geneticist?

Rose.9.6.03Rose.9.6.03 member
in Special Needs

We've been with my DD's geneticist for 3.5 years and still have no answers.  I don't think we're necessarily going to get answers from another geneticist, but our current one just seems so disorganized and largely uninterested in my DD's condition unless he can publish an article about her.  

We are lucky enough to to have a very good children's hospital 10 minutes from our house and have access to several specialists that other people will travel from all over the country (and sometimes the world) to see.  If we start using another geneticist, we will need to travel (probably around 2 hours) and won't have the benefit of having the geneticist in the same hospital/system as her other doctors.  In addition, I wonder if the time and hassle of seeing another geneticist will even be worth it.  I have a sinking feeling we'll still not have answers even if we change physicians.  

Anyway, if anyone has any thoughts/suggestions, I'd love to hear them.  Particularly, if you have a geneticist (or other specialist) who is not in the same hospital system/city as your other providers.  Thanks. 

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Re: Time for a new geneticist?

  • JoJoGeeJoJoGee member

    Rose, I see you are Cincinnati.  So am I.  There can't be only one geneticist at Children's.  Can you seek a second opinion within the department?

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  • Rose.9.6.03Rose.9.6.03 member
    imageJoJoGee:

    Rose, I see you are Cincinnati.  So am I.  There can't be only one geneticist at Children's.  Can you seek a second opinion within the department?

    You know, I've thought about that, but I wasn't really sure how to even go about that.  I am worried that a doctor may be less willing to go against the opinion a colleague in the same department or that there will generally be resistance to me seeking a second opinion.  

     

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  • Rose.9.6.03Rose.9.6.03 member
    imageBostonKisses2:
    imageRose.9.6.03:
    imageJoJoGee:

    Rose, I see you are Cincinnati.  So am I.  There can't be only one geneticist at Children's.  Can you seek a second opinion within the department?

    You know, I've thought about that, but I wasn't really sure how to even go about that.  I am worried that a doctor may be less willing to go against the opinion a colleague in the same department or that there will generally be resistance to me seeking a second opinion.  

     

    I totally get your hesitancy.  I was hesitant when we switched pulmos, because I was scared to create waves within the department.  Realistically, everything was fine and they were happy to know that we were satisfied with the care and opinions we got from our current pulmo.  He deals with our family's personality better, and isn't afraid to really examine her instead of acting like she'll break because she was a preemie.  I know I'm talking about a different specialty, but I guess I'm trying to say that if you like the health system where you're at, I would try to get a second opinion from someone else in the department, and take it from there.  If you're still not satisfied, then maybe start looking for another geneticist.

    FWIW, our CF clinic isn't in the same hospital system as her primary, and is over an hour away.  There is a CFF accredited clinic that's closer, but they're not as good as the one we go to.  To me, it's worth the extra travel time to have her in the care of a top notch pulmo who is well known in the CF community.  So if there's a top notch geneticist that you know is somewhat nearby but not in your health system, it's ok to switch to them if you feel like your DD will get better care/they'll be able to give you more answers.

     

    That's good to know.  Maybe I will try a new geneticist in the same department.  DD has an appointment with her derm in February who works closely with genetics - so I might get her opinion on switching geneticists generally and ask for specific recommendations.  

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  • ToastieSimonsToastieSimons member
    I know this probably doesn't help, but we used Rocio Moran at Cleveland Clinic and LOVED her.  She was so thorough, answers emails and phone calls.  She even ordered DS2's blood work without seeing him because we had to pay out of pocket.
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • Rose.9.6.03Rose.9.6.03 member

    imageToastieSimons:
    I know this probably doesn't help, but we used Rocio Moran at Cleveland Clinic and LOVED her.  She was so thorough, answers emails and phone calls.  She even ordered DS2's blood work without seeing him because we had to pay out of pocket.

    No, that does totally help.  Thank you for the recommendation.  The Clinic has been one of the options we've been looking at b/c (1) it has world class doctors and (2) we lived in Cleveland for many years, so we have several friends we can stay with.  My other thought was going to Nationwide Children's in Columbus because it has a good rep and it's 2 hours away.   

     

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  • S-TunaS-Tuna member
    imageRose.9.6.03:

    imageToastieSimons:
    I know this probably doesn't help, but we used Rocio Moran at Cleveland Clinic and LOVED her.  She was so thorough, answers emails and phone calls.  She even ordered DS2's blood work without seeing him because we had to pay out of pocket.

    No, that does totally help.  Thank you for the recommendation.  The Clinic has been one of the options we've been looking at b/c (1) it has world class doctors and (2) we lived in Cleveland for many years, so we have several friends we can stay with.  My other thought was going to Nationwide Children's in Columbus because it has a good rep and it's 2 hours away.   

     

    DS sees Annemarie Sommer at Nationwide Children's in Columbus. She is a great fit with our son. We love Nationwide Children's!

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  • Rose.9.6.03Rose.9.6.03 member
    imageS-Tuna:
    imageRose.9.6.03:

    imageToastieSimons:
    I know this probably doesn't help, but we used Rocio Moran at Cleveland Clinic and LOVED her.  She was so thorough, answers emails and phone calls.  She even ordered DS2's blood work without seeing him because we had to pay out of pocket.

    No, that does totally help.  Thank you for the recommendation.  The Clinic has been one of the options we've been looking at b/c (1) it has world class doctors and (2) we lived in Cleveland for many years, so we have several friends we can stay with.  My other thought was going to Nationwide Children's in Columbus because it has a good rep and it's 2 hours away.   

     

    DS sees Annemarie Sommer at Nationwide Children's in Columbus. She is a great fit with our son. We love Nationwide Children's!

     

    Thank you for the recommendation!  I really do appreciate it.  Yay for Ohio peeps on here!

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  • CaptainSeriousCaptainSerious member
    image-auntie-:

    The overall reputation of a hospital is a whole lot less important than the quality of the department and team you'll be seeing. CHOP Philly is regarded by many as the best pediatric hospital in the US, maybe even North America. But if I were suggesting a developmental pedi for someone in my area, I'd suggest they look elsewhere.

    May I ask why you say this, auntie?   M is using the developmental group in Atlantic County for his FASD diagnosis/follow-ups.  Are you talking about the main hospital, a particular doctor, the department as a whole?  Could you share the reason for your hesitancy?

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  • CaptainSeriousCaptainSerious member

    Thanks for clarifying!  I was wondering if you had reason to doubt the developmental group as a whole.  We've been very happy with CHOP as a whole (we use their cardiology, genetics/neurofibromatosis clinic, FASD clinic in their developmental group, and will be seeing their pulmonary people this summer), but just started with the whole FASD thing, and don't really know how to judge.

    I can understand how it would be difficult to not be able to consistently see the same doctor with a child who has autism.  We are lucky in that way, for the NF and the FASD (and our upcoming pulmonary appointment), we are seeing the department heads.

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