About Connie Fowler Expertise 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.)
Experience 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.
Organizations The Organization that I belong to is Our Chiari kids, Keeping kids healthy, Child care network,
Education/Credentials Basic child care resource, Child developement, Child Behavior,
Reaching to new heights in the research of chiari Malformation.
http://icanlearn.homestead.com/monkeynoseenodo.html
Expert: Connie Fowler Date: 6/1/2005 Subject: Mystery illness going on for years!
Question Hello. I am a mother of 2 children, both with their own set of problems. I am at my wits end with what is going on with both of them. I think I am on the right track with my 13 year old daughter and I have lots of tests set up for "Mixed Language Disorder" and I will be setting her up with a psychologist soon to deal with her abandonment issues with her biological father. She is also on Stratera for ADD. Anyway, my son has something going on with him that has been going on for probably 6 years now. He is an intelligent, well adjusted, 9 year old boy. He gets good grades and has lots of friends.
Medically, though, it's a whole different story. He was a healthy baby with some childhood asthma that would act up now and then, but never really caused any major problems. He does have a sleeping disorder which he inherited from his biological father, and that is rolling of the head when he sleeps. He's been doing that ever since I can remember. Sometimes he can thrash his head back and forth pretty hard. We were told not to worry about it. I think his father has outgrown it; we have been divorced since my son was just a few months old. Anyway, since he was about 4 years old, he has been having dizzy spells combined with light sensitivity, about every 2 months like clockwork. These spells last from 3 to 4 days and then he is fine. Again the doctors told me not to worry about it. Two years ago was the first year it seemed to affect his attendence at school. Our pediatrician had a sinus x-ray done and an CAT scan. Both showed something. The x-ray showed a mass in the sinus cavity and the CAT scan showed a small cyst. I was then sent to a neurologist at the Children's Hospital in Dayton, OH. He had an MRI and an EEG done. After checking out the MRI he said that the cyst was just that, and in a place that should not cause him any problems, but the EEG showed epileptic activity. Now he has been diagnosed with nighttime epilepsy. He is not on medication, because I was told the dizzy spells and light sensitivity was not caused by the epilepsy. The doctor agreed that he probably didn't need medication. We still had no answers to the dizzy spells.
I took him back to the pediatrician and they recommended an ENT to check him out. They did find a small inner ear problem and sent us to another ENT from Cincinatti. He diagnosed him with migraines. He wanted him to get a migraine shot in the ER when it happened again. In the meantime I took my son to another neurologist in the same office; his neurologist left the practice; and I really don't think this one knows anything. I witnessed a seizure the day before Christmas Eve this past year as he was coming out of a nap. He became very rigid and confused. It lasted over 20 minutes. I called 911 and they got there just as it ended. He didn't remember anything. He couldn't understand what all the fuss was about. He was talking to me throughout the whole thing, so that is why I waited so long. I wasn't sure exactly what it was until he came out of it. He had another experience a month or so later when he was sick. He felt like he had no control over his arms. He sat in a chair holding his arms down for a little while, then he just fell asleep. He remembers that experience. He also said when that was happening, the room starting having a digital appearance. He said everything looked liked a computer screen when it starts messing up like little squares. I don't know how else to describe it. I explained all this to his current neurologist and he acted like we were crazy. He even told me he was undiagnosing him with the epilepsy. Even after I told him I witnessed a real seizure, he said that just because his EEG says he has seizure activity, doesn't mean he has epilepsy. I didn't diagnose him! He agrees that the dizzy spells are probably migraines, but says that the medications will do more harm than good and we should just deal with them. I told him he is missing too many days of school and he seemed unconcerned. He also seems to think that I am encouraging them by saying they happen every two months. I told him that I don't check the calendar until he has one and it is like clockwork; every two months for 3 to 4 days. He gave me a paper of trigger foods and said to cut them out of his diet. I can't believe it is trigger foods, because he eats these foods all the time and not just every two months.
I am writing today because I had to send my son off to school today and yesterday with sunglasses and severe dizziness. I got him up at 4:30am yesterday hoping that it would wear off by the time he had to go to school. On a normal dizzy day, it wears off by early afternoon. Lately though it seems like the spells have been lasting longer through the day. My problem is getting someone to see him while he is having them. For him to get around during the spells, he has to look up. If he looks down he feels like he is going to be sick and fall over. I know you can't diagnose him, but I was hoping you could tell me what course of action I should take next. I hate watching my son suffer. I was thinking about contacting the Cleveland hospital. My sister has Hydrocephalus and was treated there. Do you think that would be a good idea? My other sister has a son with autism and epilepsy and is going to a neurologist in Cincinatti so I was also thinking about trying there. She left the neurologist's office that I am going to, when the other doctor left. I think that was a smart move. I really need some direction with this problem and I would really appreciate your help. Thank you for listening. Valerie
Answer Hi Valerie
First I must commend you as I know all to well how heart wrenching it is to see your child in pain each time a door is open 2 more are slammed in your face.
My son started having severe headaches at age 4 ½ and I too was stated it was migraines problems it is a long story one you can read at this link. http://icanlearn.homestead.com/Anthonystory.html
I know it is hard to keep seeking help when all the professionals are telling you do not worry about it.
My best advice to you is no matter what the DR state to you in your heart you feel it is not correct you are most likely right. Listen to your heart and most important listen to your son.
I support you remember as mothers we will go to the ends of the world to heal our children. You must do what ever it takes to help your child have a pain free life.
Please feel free to email me with any other concerns.
Best regards Mrs.Fowler
