tag:blogger.com,1999:blog-6432747512136647685.post1952878409235598149..comments2024-03-21T20:44:46.883-06:00Comments on Thriving with Neurofibromatosis: What Now...?NF Mommyhttp://www.blogger.com/profile/13559650798413176925noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-6432747512136647685.post-91484734616315273062020-01-15T03:55:14.697-07:002020-01-15T03:55:14.697-07:00We go to the Judson hawk clinic at choa in Atlanta...We go to the Judson hawk clinic at choa in Atlanta. My son is 16.. he has had 5 surgeries to debulk a plexiform on his spine. After hearing nothing could be done, I researched what are international doctors doing about nf. Bee propolis, tumeric, magnesium, vitamin D every day. He has grown over a foot in those 5 years... Everything is stable.. No growth. Dr Wolff, the neurologist, put him on 500 mg of magnesium for migraines. He rarely has them now. Rachelphttps://www.blogger.com/profile/14484949263098751043noreply@blogger.comtag:blogger.com,1999:blog-6432747512136647685.post-68230075829561097792019-06-22T18:38:02.293-06:002019-06-22T18:38:02.293-06:00There are clinical trials for a drug to shrink NF ...There are clinical trials for a drug to shrink NF related tumors called selumtinib and binimetinib. You have to look this up on the clinicaltrials.gov website and your children may have to travel on their own to the site of the clinical trials. I am glad the NF societies finally funded a sucessfull drug after doing very little for decades. willnoreply@blogger.comtag:blogger.com,1999:blog-6432747512136647685.post-21259455966724225212019-06-22T18:31:32.883-06:002019-06-22T18:31:32.883-06:00First of all, YOU MUST GET YOUR KIDS ON MEDICAID A...First of all, YOU MUST GET YOUR KIDS ON MEDICAID AND SSI NOW. Go to a for profit lawyer if you need to they do not charge unless they win. Second go to disability rights in whatever state you live in and the state developmental disbility board once again sue if denied. There are doctors in the childrens hospital or a regular hospital that see NF petients that are adults.willnoreply@blogger.com