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950RE: [Parenting Children with Moyamoya] Re: Jennifer

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  • Jennifer Elrod
    Feb 19, 2008
      Yes, we have contacted each other a few times via email although it has been a while. I think she first emailed me after I posted a message on the moyamoya.com message board. I believe that her daughter wasn't diagnosed until after her surgeries for MMD. Paige on the other hand was diagnosed at 6 months( long before her MMD diagnosis. I also have become really good friends with another couple whose 13 yr old daughter has both NF and MM. She too is Dr. Steinberg's patient. We were not able to get Paige's insurance to pay for her to travel out of state to see Dr.Steinberg but we were extremely lucky. Paige is a patient at St. Jude Children's Hospital in Memphis,TN for her tumor in her optic nerve and they set us up with a wonderful neurosurgeon in Memphis( Dr. Frederick Boop) who did both of Paige's bypass surgeries. Of course Steinberg was my first choice but I feel like we got the next best thing. Thank you so much for contacting me. This group and the moyamoya.com
      website have both been a huge blessing for me. Once again, I hope all goes well with your daughter. By the way, has she had any more problems since her surgery? Please feel free to contact me anytime.

      Best wishes,

      Hi Jennifer,
      Have you been in touch with Jenny Moyer? Her daughter also has Neurofibromatosis and MMD. I am not sure if she is part of this group or not...but her daughter was on DHC with Dr Steinberg from Stanford. That is where we took Meadow.


      To: parentingchildrenwithmoyamoya@yahoogroups.com
      From: jnokes5@...
      Date: Tue, 19 Feb 2008 03:00:13 +0000
      Subject: [Parenting Children with Moyamoya] Re: Optic malformations assoc w/moyamoya

      --- In parentingchildrenwithmoyamoya@yahoogroups.com, "Lora"

      <lorabeas@...> wrote:


      > Does anyone's child have ocular malformations? My daughter has a


      > defect in each eye. She has optic nerve hypoplasia in her left eye

      > (which I have been told can be associated with MMD). In her right


      > she has either a coloboma or morning glory (optic disc anomaly).

      > She also has other conditions other than just the vision.


      > She is still doing well. It has been one month since her last EDAS


      > bilateral MMD.


      > Thanks,

      > Lora



      My daughter, Paige, who is now almost 6 yrs old was diagnosed with

      MMD in early 2006 after suffering a stroke in December of 2005. She

      doesn't have any malformations however she has an optic pathway

      glioma(tumor in her optic nerve) but it was caused by another

      disorder called Neurofibromatosis which she was diagnosed with at

      age 6 months. I have learned alot about MMD since her diagnosis but

      I did not know that it also caused optic malformations. I wish you

      and your family all the best.Your daughter will be in our thoughts

      and prayers.

      Best of luck,


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