Idiopathic Infantile Spasms torment Carson Martin
Carson Martin just turned one year old. He is an amazing precious child who has a personality that is almost too big for his little body! He has a smile that will melt your heart, and a contagious belly laugh. He looks pretty much like any other one year old, but he isn’t. Carson is sick. He has Idiopathic Infantile Spasms (IS), a rare and dangerous form of epilepsy.
Carson had his first seizure at nine months old, since then he has had many more. Carson is on a twelve-week course of steroid injections that we give him at home. He takes medication that makes him clumsy and grumpy and irritable. He goes to the neurologist, to the lab to get his blood drawn, and home health care nurses come to our home twice a week.
The statistics for Infantile Spasms are scary. Seventy percent of kids who have IS have some form of developmental delay, ranging from mild learning disabilities to mental retardation. About half of the kids who have IS continue to have seizures throughout their lives. IS is characterized by seizures that come in clusters, and occur mostly as a child is waking up or falling asleep. Almost all of Carson’s seizures have been at bedtime, naptime, or early in the morning. Sometimes he will wake up in the night and have seizures.
We were desperate to do something for Carson. A friend told me about a not- for-profit organization called 4 Paws for Ability that specializes in training service dogs for children with disabilities, including seizure alert dogs. These dogs can sleep in the bed with your baby and alert you if he’s having a seizure. They can go to medical appointments and procedures and help keep your child calm. They offer companionship to kids who have seizures. These dogs improve the quality of life of sick kids, kids like Carson.
I filled out an application and we were accepted into the program at 4 Paws. I feel so blessed because 4 Paws believes in early intervention. They believe that a seizure alert dog can start helping Carson, who is about to have his first birthday. Now we have the challenge of raising $13,000.00 to qualify to receive this highly trained assistance dog.
Carson’s dog will become his constant companion and will be able to recognize the signs of an oncoming seizure. Carson’s dog, will alert us before/during a seizure, and provide him comfort during medical appointments and uncomfortable procedures.
This dog will give our family peace of mind. We will be able to sleep again without the fear that Carson will have a seizure in the middle of the night and we won’t know. I want to change Carson’s life. This isn’t the kind of life he’s supposed to have: it can’t be. A life of needles, screaming, doctors appointments and seizures is not a life for anyone, let alone a one-year-old beautiful little boy.
I know Carson’s dog cannot cure his illness, but if it makes any of this even a little easier for him, it’s the right thing to do.
A 4 Paws dog would be a life-changing gift for our family, a gift that would bring us some peace, a gift that would improve Carson’s quality of life. Carson needs your help to get this dog. Please consider making a tax-deductible donation to 4 Paws For Ability, Inc. in honor of Carson. Make your check payable to 4 Paws for Ability, including ” In Honor of Carson Martin” on the memo line and mail to 4 Paws For Ability, Inc. 253 Dayton Ave, Xenia, Ohio 45385.
No amount is too small, every little bit will help, and will be SO appreciated! You can also make a donation online by going to www.4pawsforability.org and clicking the make a donation link. Be sure to put “In Honor of Carson Martin” on your donation.
Note: I highly endorse 4 Paws for Ability as a source for extremely well-trained service dogs. The organization is sound and its goals exceptional. Judy Vorfeld.
February 9th, 2011 at 11:06 pm
Our daughter had infantile spasms for 5 weeks around age 7 months. 5-7 clusters daily, 10-30 spasms per cluster, usually associated with sleep and nap times.
We put her on 20 MG of Vitamin B6 after exhaustive research. Her seizures stopped 5 days after that. Please do some research on B6, our daughter is now 3 years old, and has no developmental issues yet. In fact, she is ahead for her age, she started reading at 22 months. Please email me if you need any more information.
Dr. Sydney Gospe at Seattle Childrens looked at her.
February 9th, 2011 at 11:07 pm
P.S. We still give her 50 MG of Pyrodixine, B6, everyday. Our Neuro in Hawaii had not even considered B6!