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Adeline's Story

We are new to all of this. Everything came in a whirlwind. Adeline was a few months behind on development since she was born, however everyone chalked it up to her being born 8 weeks early. My little girl didn't walk until 18 mo and didn't laugh for the first time until she was 2 years old. In November 2019 she had her first cluster of seizures and we as parents have never been so terrified. We were told after a 12 hour stay and no EEG during this stay that Adeline had Complex Febrile Seizures. Her temp however did not change once during the hospital stay. We were discharged with an EEG scheduled a month later. We had her ready for the EEG when we found out that the hospital had double booked the EEG and we were the family that was pushed to another date. 15 minutes after leaving the hospital Adeline started seizing. She had a total of 21 Generalized Seizures that no one could get to stop. She continued to seize until finally they stopped with no drug working to help keep them at bay. Adeline was then diagnosed with epilepsy and we were discharged with 2 types of medications that were supposed to help. Her seizures were not controlled by these and continue to not change no matter what medication we give. Adeline is 2 years and 8 months now. She has a G-tube for feeding and is on Keto Diet. Thankfully, we have seen an improvement, from 24-20 seizures a day to 2-3. We are hoping to be able to control the seizures as Adeline is developmentally around 18 mo and struggles with language. Adeline was also recently diagnosed with Autism. 

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