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 just don't know where to go now. My 6 1/2 month old has a massive firm bulging anterior fontanel. Its been this way for two months and the two Dr.s have confirmed this. We finally got the Dr to tell us yesterday she has never seen a healthy child with a bulging fontanel. It is new teritoriy for her to see the fontanel bulging but the child doesn't really have other symptoms of an illness. The onset was after she was in the ER with 104 fever. At 4 months they did do an ultrasound and said all the blood vessels ect looked fine and the tech said there was a large amount of fluid but he thought it was within limits. At 4 months she was 25th percent weight and height. 75th for head. Now she is 25th height, 50th weight, and over 90th for head. The spot is always bulging..doesn't change with siting up, calm ect. Should we be worried. Were enough tests done. Does an ultrasound show all problems and rule out everything. Could the ultrasound tech have been wrong. Could our daughter have Hydrocephalus with no symptoms but a large head and bulging soft spot. Do we not worry just because she doesn't have any symptoms right now. We worry that the skull will start trying to close and what happens to the bulge. Does it then put pressure on the brain and cause symptoms which by then there could be damage. We are in military health care and it just seems they are dropping the ball on our daughter. How can a Dr say they have never seen a healthy child with a bulging fontanel but not refer her on. We hope she is ok and nothing is wrong. But I'd feel horrible if I missed something and she ended up with brain damage or something.
Answer Thank you for your email.
YES ,YES ,YES!! You should be worried I do not want to scare you yet your first clue that the DR has no has no idea of your daughter condition is. ( Fact she has NEVER seen a child this healthy before with her concern).
Your daughter could have Hydrocephalus with out symptoms at this time.
Has your daughter had a MRI ?
I can only give you advice yet I honestly believe your daughter needs to see a specialist I have the perfect DR for you and he is wonderful though in Baltimore, MD.
This is the link.
His name is Dr Ben Carson. http://www.hopkinsneuro.org/team_member.cfm/expert/Benjamin_Carson
If you like I do know of a few more Neurosurgeons that may be closer to were you live,
Yet I do highly recommend D Carson.
You are right seeking more advice with your daughter’s medical needs. This is a link to my personal web site and what we went through to my sons medical condition meet.
Please feel free to email,
Best regards, C.L.Fowler
