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964Re: [Parenting Children with Moyamoya] seattle area needinf info please

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  • Laurie Park
    Dec 28, 2008
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      Dear Wyndi,
      Your daughter sounds like she is a very strong little girl!
      My daughter was 7 when she was diagnosed with Moyamoya 3 yrs ago. We are a military family and were stationed in South Korea at the time. It is more common in Asia so I feel fortunate that we were there to have her diagnosed early. Even though the surgeons there were excellent, we opted to come to the States for surgery to make follow up easier. In Korea the pediatric neurosurgeon recommened Dr. Scott at Children's Hospital in Boston. He responded to my email the very day I sent it and made many adjustments to his schedule to fit us in and perform surgery in the time we had available to be there. He is one of the leading doctors in this area and everyone who meets/works with him loves him. He has 20 yrs of experience in this area. I would definitely seek his opinion. If you cannot go in person, I would contact him by email for recommendations. If you go to www.childrenshospital.org and search for Dr. R. Michael Scott, you will get his bio and a link to
      email him.
      Good luck to you and your family. I'm sure there are many others on this site that will have good advice to share with you. May your daughter stay strong and may you find all the answers you are looking for.
      Best wishes,
      Annapolis, MD

      --- On Sun, 12/28/08, Wyndi Lee <wyndilee@...> wrote:

      From: Wyndi Lee <wyndilee@...>
      Subject: [Parenting Children with Moyamoya] seattle area needinf info please
      To: parentingchildrenwithmoyamoya@yahoogroups.com
      Date: Sunday, December 28, 2008, 4:39 AM

      my daughter has moyamoya like vessels. (progressive narrowing followed
      by Doppler imaging) she is 2.5 in the seattle area.

      She has PHACE syndrome and has a pacemaker making MRI/MRA impossible.
      She has a complicated health history. She had Doppler every 3 mths and
      now her Drs have told me to start consolations with pediatric
      neurosurgeons. Due to my daughter complicated health history I am
      hoping to consult with more than one surgeon and would greatly
      appreciate some names of doctors who have worked with specialized cases.

      What is PHACE Syndrome? An acronym for birth defects related to the

      Posteria Fossa malformation.
      Izabell does not have this part of PHACE

      The external hemangiomas responded well to steroids and laser
      treatments. The hemangiomas on her ear drum have caused some hearing
      loss. She has hemangiomas throughout her neck, nose airway and saliva
      glands. She was on a N-G feeding tube for two months before she was
      strong enough to drink from a bottle. Izabell was not able to swallow
      thin liquids and required all liquids to be thickened with special
      gels to protect her from aspirating the fluids into her lungs. This
      was needed for about 2 years. She has had three surgeries to remove
      the hemangiomas from her airway. She also had surgery to remove some
      of the internal hemangiomas in her nose because they separated and
      closed off her nasal septum making it difficult to breath. Not all of
      the internal hemangiomas could be removed and the scar tissue from the
      surgeries also narrow her small airway. Her airway is very narrow and
      will be monitored. She might need reconstructive surgeries to help
      rebuild her airway in the future but we are hoping that as she grows
      her airway with will also grow and heal. She has had three laser
      treatments on her superficial hemangiomas and has healed well after
      each one. She had sleep apnea and slept with a pulse ox monitor on for
      about a year. She has unilateral hearing loss duw to hemangiomas on
      her eardrum.

      Arterial Defects
      Izabell has many arterial and venous defects. She has very narrow and
      twisted arteries which increase her risk for stroke and aneurysm . She
      is being followed by neurology and is on aspirin daily to help lower
      her risk. She is followed with Doppler imaging at this time she is
      going every 3 months because she had some recent changes in her
      vessels .She is followed by neurology because of her arterial defects
      and venous pooling. We are now starting to consult with surgeons at
      our Drs suggestion. the are presenting her case next week to decide
      what the next step in her care should be.

      Cardiac Defects
      Izaebll was born with an interrupted aortic arch, and a large
      ventricle septic defect. When she was six weeks old she was admitted
      to the hospital with severe congestive heart failure and underwent
      open heart surgery to repair these defects. She was in the ICU for 6
      weeks. She had an open chest for a week to take the pressure of her
      heart and heal her body heal before her chest could be closed after
      surgery. She got complete heart block from the surgery and now has a
      pacemaker. She has also had two heart catheter surgeries. She has a
      narrow ventricular outflow track and mitral valve prolapse and Aortic
      valve regurgitation that is being closely monitored by her care team.
      She will need surgery every 4-5 years to replace her pacemaker. She is
      likely to need another OHS in her adult years to either repair or
      replace the valves. She will also need a stent placed when she is
      older to open her arch more. She has a damaged vocal cord from the
      breathing tubes used during surgery but has regained most of her voice.
      Eye Anomalies
      Izabell is far sighted has strambisis and has hemangiomas around her

      Izabell also has Hip Dysplasia and neuromuscular scoliosis.
      seattle, wa USA

      [Non-text portions of this message have been removed]
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