When Abby was 9 yrs old she was diagnosed with early onset puberty, her laughing spells had started to turn into panic spells which included repetative swallowing, staring and short term memory loss. She will suffer with these episodes up to 12 times a day. She cries and tells me how this is ruining her life.
I was sure these spells had to be some sort of seizure. I made her an appointment with a pediatric epilepsy specialist in Atlanta, GA. So glad I did, this doctor seemed to know exactly what was wrong. He sent her to Childrens of Atlanta for a MRI and he was right. Within 2 hours of being home we got a call, Abby was diagnosed with Hypothalamic Hamartoma, it is a rare congenital tumer on her hypothalamus. These tumors can cause many problems including the laugh seziures, short term memory loss, early puberty and other debilitating symptoms that thankfully Abby doesn't have now but could possibly develope later. We were told that medication doesn't help these type of seizures and surgery was the only thing that can be done. Because this is rare and only 1 in 200,000 kids are born with it, not a lot of doctors have performed surgery on these types of tumors. Also this is why kids are often misdiagnosed.
This is a dangerous surgery because the hypothalamus is in the center of the brain and it controls everything. We have an appointment at Texas Childrens hospital in Houston, TX in October 2017 with the neurosurgon who specializes in this disease. We have to go for 2 weeks of testing and back, then back again for the surgery. We need help with the travel expenses and medical bills to be able to help our baby girl to have a normal seizure free life.
- Keith Bilbrey
- Ron/Sally Stamper
- Julie Smith
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