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Suggest Treatment For Bronchiectasis And Microcephaly
Hi My Name is Vicki, I have twin boys aged 9, one of who has the following, Bronchiectasis - Which he has half a right lung left to function with, HE has NF1, lost of Cafe Lait, Two Cysts, one on his Brain and one on his mid to lower spine. He has high amounts of protein running through his spinal cord, he has lesions on his brain like MS, but not MS, he has a head circumfrace of 98% above. He has Macrocephaly, He has mild urinary problems now, he has serveer back pain now, he has fractured nerves to the base of his spine, he has a CSF Pressure of 28 under GA, he has short term memory loss as well. He is ok at the moment, but I know he is loaded, and all he wants is to find a cure to live. Sean gets very worn out now, and at times finds it hard to walk long distances. Sean is also drug free at the moment. Does anyone know what this all means for him, and is there any treatment he can have to secure him to have a beter and longer life. Thank you, We live in Auckland NZ, My Name is Vicki Adams
Wed, 21 Sep 2016
hi sry for the condition of ur son.the condition NF I is a congenital anomalies due to defrct tive chromosome 17q11.2 which results in defective gene NF I gene whitch is a tumor suppersor gene which activation produces neurofibromin protien.a s far as tratment is concerned there is no single best cure only symptomatic tretment for rest of the life
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