About CONNIE FOWLER Expertise MAIN QUESTION ARE CHIARI MALFORMATION ,TETHERD CORD SYNDROME WITH RELATED DISORDER.
ADHD, Hidden learning disorder, Autisms, Tethered cord syndrome, Pseudo-Tumor, Spina bifida, Syringomyelia, Hydrocephalus,
Experience I can help with questions on Chiari malformation and related disorders like ADHD, Hidden learning disorder, Autisms, Tethered cord syndrome, Pseudo-Tumor, Spina bifida, Syringomyelia, Hydrocephalus, I went four years with not getting proper help for my son with Education and Medical issues. The Chiari type I malformation is a rare, neuromuscular deformity at which most Neurosurgeons believe it is present at birth. The brain exists in a cavity surrounded by bone. The brainstem normally sits in a funnel-like cavity just above the spinal cord. The problem occurs when the posterior fossa is not developed properly. Instead of the brainstem sitting in its proper space, the brainstem is pushed downward through the skull, causing pressure on the cerebellum and spinal cord Another concerns is the normal flow of CSF through this area because the cerebellum are pushed into the opening of the base of the skull meeting the spine can cause obstruction to its natural flow. (This downward displacement of the cerebellar tonsils is called the Chiari malformation.)
Organizations The Organization that I belong to is Our Chiari kids, Keeping kids healthy, Child care network,
Education/Credentials December 2000 my son went in for brain decompression his Filum released (Tethered cord syndrome) as these are not a done deal surgery and we have years of doctor appointment and possible more surgery's, my heart and soul is in the understanding and research of this condition that the Doctor said my son was born with, as I am finding out this can be a genetic disorder as my self I have been diagnosed with Chiari and my oldest son has Scoliosis which is a sign of Chiari malformation.Because this is a rare disorder not to many people know of it or understand the disability that can come with it if left untreated, this is my goal to bring more awareness and be a support to those who have been told they too may have Chiari Malformation.
Basic child care resource, Child developement, Child Behavior, Reaching to new heights in the research of chiari Malformation.
Question I have a grandson who has suffered seizures when he was around six months old. He has had several EEG's and shows some activity. He was put on Tegratol(?) and has been on this medication for about a year. He is due for another EEG in two days. The doctor says that if his EEG comes out okay they are going to wean him off his medication. They do not know what caused his seizures at six months of age and he has not had one since the medication. Can you please give me some information as to why, what could have caused this otherwise healthy baby to have had these seizures? Any supporting links or any information would be helpful.
Thank you so very much
Concerned Grandma
Nancy Calzada
Answer Hi Nancy thank you for you question.
I have a brother that has seizer problems too, through him I do know that Dr will try to take you of medication if patient have a good response being off medication.
My brother has been on and off medication 3 different times in his life each time he did wonderful. I notice when the seizers are triggered when being very sick and over stressed.
I feel your Dr is accurate in doing this your grandson could respond very well to being weaned of his medication.
At your next appointment you are not comfortable with the decision, which is made my best advice, is seek a second opinion.
Best Regards, C.L.Fowler
