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Re: [Parenting Children with Moyamoya] daughter with mm

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  • Kevin Cave
    You should contact a social worker at the hospital that s what they are there for. We have a great one at Children s Hospital of Philadelphia My 4 year old
    Message 1 of 4 , May 16, 2006
      You should contact a social worker at the hospital that's what they are there for. We have a great one at Children's Hospital of Philadelphia My 4 year old daughter also has Moyamoya which was caused by her Neruofibrmatosis. There are just as many or more kids with Moyamoya that have NF1, then there are children of Asian descent. Our daughter was diagnosed with NF1 around a year old. We discovered our daughter had Moyamoya because she has to have an MRI very six months to check for optic tumors. During one of scans it was noticed that her left internal cardioid artery was absent. This over time caused the Moyamoya. Not trying to alarm you but the most common problem with NF is tumors which attach to nerves, especially on the optic nerves. I hope the Dr that you are seeing now has the common sense to take this into consideration with your daughter. Last year we went through the same thing with Juliana and the insurance company. The CHOP wanted us to have surgery
      there, even though it is one of the best Children's Hospital in the world they are not qualified to do this kind of surgery. We fought with everyone and got Juliana up to Boston for surgery with Dr Scott. Do not go any wear but to Dr Scott or to Dr Steinburg they have done more surgeries then anyone else in the world. Running out of time hope this helps some. God bless you and your daughter
      jnokes5 <jnokes5@...> wrote: My 4 year old daughter has mm.Dr.Steinberg has looked at her scans and
      wants to see her in California,however,we can't get her insurance to
      approve this since it is out of state.We live in Tennessee.The doctor
      that wants to wait to do surgery has told us that it is silly for us to
      want to take her to California for surgery and that if we hadn't let her
      other doctors do radiation for her optic glioma,then she wouldn't have
      this disease to start with.He has told me that he will not write a
      letter to her insurance recommending that she be sent to California
      therefore her insurance won't pay for it.Without insurance,she can 't
      have this surgery.Paige's dad & I don't want this other doctor treating
      her anymore,esp.since he has told us that it is our fault that she has
      MM.Does anyone have any ideas about finding someone to do the surgery
      without insurance or how to get her insurance to approve this.We are
      running out of options and are very concerned about the health of our
      daughter.Any ideas or suggestions are greatly appreciated.Thank you.






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      Best Regards,

      Kevin M. Cave

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    • jnokes5
      I just read a post on the moyamoya.com website about a person from Tennessee who was diagnosed at the same hospital that my daughter is at now.The doctor that
      Message 2 of 4 , May 16, 2006
        I just read a post on the moyamoya.com website about a person from
        Tennessee who was diagnosed at the same hospital that my daughter is
        at now.The doctor that is refusing to refer my daughter to
        Dr.Steinberg,referred this patient to him for their surgery.Why is he
        giving me so much trouble about this when he has referred other
        patients to Dr.Steinberg?Now I can't get her insurance to pay for this
        & it is starting to look like I don't have a choice but to keep her
        with this doctor.Any ideas.I am hoping that this new info will help my
        daughter's case in some way.I have tried to find other neurosurgeons
        in Tenn.who can deal with MM ,but so far no luck.
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