Shared story Jazmin Clark-Townsend may help Has your child been diagnosed with Chiari? If you suspect that your child has Chiari or have been recently diagnosed, these pages may be useful in helping you understand the condition. Click on Browse Pediatric in the navigation bar to find patient literature to help you explain to family, friends, medical professionals and teachers that may have a part in the care of your child. You can also meet real pediatric patients, get connected to other parents on Facebook and find some hope from other children who battle Chiari everyday. Faces Of Chiari | Wade My son Wade was born October 16, 2000, weighing in at 7lbs. He was discharged from the hospital, seemingly as a healthy boy. However, as time passed it became quickly apparent that there was something very wrong. Wade would cry constantly in pain, and wasn’t growing. I took Wade to the pediatrician, and he brushed it off as teething. I gave him the prescribed pain medications, but this still didn’t explain why he wasn’t growing. The pediatrician ordered blood tests, which all came back clear. By the age of 2, Wade was still incapable of walking, talking, feeding himself or able to swallow properly, and was still significantly undersized. I went back to the pediatrician and he again suggested that Wade was just intellectually delayed. When Early intervention and a team of psychologists, speech therapists, and occupational therapists were investigating my younger daughter, I begged them to help me with Wades case. They attributed Wade’s lack of speech, walking, toilet training, and eating to the fact that he is the youngest child of 6 other siblings and we did everything for him and he needed to do it for himself. I found this upsetting to say the least as we did not do everything for him, considering his older sister, Frances, has downs syndrome. Wades doctors decided that he was just intellectually delayed and I was a paranoid mother, with an exception to the psychologist who came forward, believing there was a lot more to it. He contacted the pediatrician and asked him to write a referral for an MRI. The next day I saw the pediatrician, he was reluctant and did not want to give Wade an MRI, stating it would prove nothing and wouldn’t be any good for his health. Upset, angry, and confused, I asked if it were his own son, presenting the same delays, and such a significantly small structure would you then give him an MRI? He finally gave in, once again stating, “It won’t show anything.” After, four hours in the MRI, he finally came out. There was no word from doctors or nurses. He was just released. 2 months passed. When the GP called me into his office, he looked at me with sympathy. He looked as if he knew something that I didn’t, I suddenly became very nervous. He told me that Wade required brain surgery urgently, and explained just how sick my little boy was, with Arnold Chiari Malformation 1 and two syrinxes. I asked him to write everything down. I couldn’t concentrate to comprehend what he was telling me. I was in shock. I went home in denial, convincing myself that they got the MRI’s mixed up. This can not be my little boy. The next morning I called the pediatrician, explaining everything that my GP had explained to me. I was told that his condition was “No big deal” and his surgery wasn’t urgent at all. I then received a call from the Royal Childrens Hospital, and they wanted to see Wade urgently. They explained to me that he had a syrinx in his c section and one in his t section and they had to remove part of the bone at the back of his head. At this point Wade was 5 years old, and still not talking. I was told by his surgeon that his condition was “Rare and fascinating, and can be fixed”. Wade had his surgery in January 2005. For me to hand my son over for brain surgery was something I can’t explain. Something inside me died. 5 days later he was discharged. The next day, I noticed his head was swollen, and there was clear fluid leaking from his head. I took him to the pediatrician, scared and desperate. As a mother, I knew this was not right. He told me to “Go home and have a cup of tea” that I worry too much. I put Wade in the car and took him to the Royal Children’s Hospital myself on a two-hour drive, him in the back seat vomiting. Once I finally got him admitted they taped the back of his head. His head was leaking brain fluid (CSF). He then started slipping in and out of consciousness, until he went into a coma. He was put into ICU, and operated on the next day to repair his dura leak. 4 days later, he was discharged. When Wade was 6 or 7 he was able to talk slurred, and unclear words. He was always reporting headaches, migraines, dizziness, numbness in his hands and legs, vertigo, neck pain, and to this day, the doctors are still denying that these symptoms are not in any way related to Chiari when I know for a fact they are. They say there is something else wrong with my boy, but don’t seem to be looking for what it is. Only looking for medications to cover up the symptoms. We’ve trialed a lot of medications, and still can’t find any that do him a lot of good. Also at the age of 6 or 7, Wade attended a mainstream school, he could only do two hours a day. The noise and light was too much for him to handle, he was in too much pain. Two years later, we put him in a special school. To this day, he still attends a special school, with a very low attendance as he if very often to unwell. And 80% of the time he is at school, I have to pick him up early because he can’t take anymore. We are fighting today for doctors to listen to us, to help us, and to believe us. I, as his mother, feel so helpless. In Australia we don’t have any Chiari or Syringomyelia specialists as there is in America and other parts of the world. I’d love for Wade to have access to these brilliant people but it is impossible for him to travel. We need help. For someone to stand up for us and say that these symptoms he suffers are related to Chiari. Taking Chiari To School A positive parent-school relationship is critical when a child has a disability or health condition like Chiari. The four primary laws that affect the education of children with disabilities or health impairments are: Individuals with Disabilities in Education Act commonly known as IDEA The Americans with Disabilities Act known as ADA (ADAA, 2008) Section 504 of the Rehabilitation Act of 1973 referred to with 504-plans State Laws Get Informed!!... Participate in Chiari Research Conquer Chiari is looking for volunteers to participate in an ongoing research project. The Conquer Chiari Patient Registry is a web accessed, secure database application that collects and stores demographic and health related data voluntarily provided by Chiari patients. The information collected will be used by Conquer Chiari and qualified researchers to study various aspects of Chiari malformation and its impact. More Information... Kids Can Conquer Too Are you a child that wants to help Conquer Chiari? A parent of a Chiari child that wants to get involved? Here is your chance. Conquer Chiari would like to open a section in our online store: Kids Can Conquer Too. Submitted designs will be prepared for printing and placed into our online store. If we use your design, we will send you a FREE T-SHIRT with your design on it. More Information... Home | About Us | Email | Donate | Get Involved | Privacy Policy | Community Calendar
Posted on: Sun, 31 Aug 2014 12:37:35 +0000
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