Move to WA for Jaddens Medical
Donation protected
We moved back to AK for a few reasons one Randy's dad health wasn't looking good two Christianna our daughter did not want to live in WA so she stayed with Grandparents, finally Jaddens health seemed to have gotten better. His aneurysms were healed. So May 2012 we moved home, Nov we flew back to Seattle via Medicaid to check his aneurysm and there still healing well, Dr. Kim informed us that Jadden now has Moyamoya :(. My world came crashing down.
About Jadden, he was born 11-06-01 12lbs 8oz with pneumonia, and heart murmur. Due to pneumonia we had to stay 10 days at hospital, heart murmur fixed it self within 4 months. About 6months old changed Dr.'s due to him always being sick and he was diagnosed with NF1. He always had ear infections and always was spitting up and having staring spells. 2 1/2 he had ear tubes put in and adenoids and tonsil removed. Still staring and throwing up Dr.'s said he's fine I brought up seizures which they kept saying no. We moved to WA when he was 8 and seeing Drs. There. When he was 9 his behavioral Dr. Had us go to children's and he had an EEG which showed he was having seizures, an optic glioma and a huge aneurysm. Which they fixed with a trapping and bypass, 8 months later they found another one which they did a coiling on.
This move will be permanent, we want to move back to Snohomish due to the kids already having friends there. We want to get a permanent home cause the stress of moving apts etc while up keeping his health is not easy.
Moyamoya disease is a rare blood vessel (vascular) disorder in which a ring of blood vessels at the base of your brain (the circle of Willis) progressively narrows, causing blood flow to your brain to become blocked. The condition may cause a ministroke (transient ischemic attack), stroke or other symptoms.
Moyamoya disease mainly affects children, but adults also may have the condition. Moyamoya disease usually occurs in people from Japan and other Asian countries, but people in the United States, Europe, Australia and Africa also have been diagnosed with Moyamoya disease.
Although there is a 4% risk of stroke soon (30 days) after surgery, there is a 96% probability of remaining stroke-free over the next 5 years.
Prognosis Death from with moyamoya disease is usually from hemorrhage. The outcome of the disease depends on the severity and nature of the hemorrhage; the prognosis depends on recurrent attacks.
Mortality rates from moyamoya disease are approximately 10% in adults and 4.3% in children. About 50-60% of affected individuals experience a gradual deterioration of cognitive function, presumably from recurrent strokes.
Patients with moyamoya disease who present for treatment while symptoms are evolving have a better prognosis than do those who present with static symptoms (which probably indicate a completed stroke).
About Jadden, he was born 11-06-01 12lbs 8oz with pneumonia, and heart murmur. Due to pneumonia we had to stay 10 days at hospital, heart murmur fixed it self within 4 months. About 6months old changed Dr.'s due to him always being sick and he was diagnosed with NF1. He always had ear infections and always was spitting up and having staring spells. 2 1/2 he had ear tubes put in and adenoids and tonsil removed. Still staring and throwing up Dr.'s said he's fine I brought up seizures which they kept saying no. We moved to WA when he was 8 and seeing Drs. There. When he was 9 his behavioral Dr. Had us go to children's and he had an EEG which showed he was having seizures, an optic glioma and a huge aneurysm. Which they fixed with a trapping and bypass, 8 months later they found another one which they did a coiling on.
This move will be permanent, we want to move back to Snohomish due to the kids already having friends there. We want to get a permanent home cause the stress of moving apts etc while up keeping his health is not easy.
Moyamoya disease is a rare blood vessel (vascular) disorder in which a ring of blood vessels at the base of your brain (the circle of Willis) progressively narrows, causing blood flow to your brain to become blocked. The condition may cause a ministroke (transient ischemic attack), stroke or other symptoms.
Moyamoya disease mainly affects children, but adults also may have the condition. Moyamoya disease usually occurs in people from Japan and other Asian countries, but people in the United States, Europe, Australia and Africa also have been diagnosed with Moyamoya disease.
Although there is a 4% risk of stroke soon (30 days) after surgery, there is a 96% probability of remaining stroke-free over the next 5 years.
Prognosis Death from with moyamoya disease is usually from hemorrhage. The outcome of the disease depends on the severity and nature of the hemorrhage; the prognosis depends on recurrent attacks.
Mortality rates from moyamoya disease are approximately 10% in adults and 4.3% in children. About 50-60% of affected individuals experience a gradual deterioration of cognitive function, presumably from recurrent strokes.
Patients with moyamoya disease who present for treatment while symptoms are evolving have a better prognosis than do those who present with static symptoms (which probably indicate a completed stroke).
Organizer
Lisa Lubova Cliver
Organizer
Wasilla, AK
