Our journey started on May 13, 2010. Madison was born on her due date, during her birth she got stuck on my pelvis and had a hard time coming out, when she finally did her right arm didn’t move, 7 doctors flew in the room hovering over her it took her about 1 minute to cry, she has shoulder dystocia, after 20 minutes she started using her arm, The team scored her as a 7 which clearly was wrong. everything was going just as planned until she was 5 1/2 months old when she started having infantile spasms, I called them electric shocks, as her arms flew outwards and she looked as if she was being electrocuted. We took her to her shoulder specialist and while examining her she wouldn’t look at him or track anything. He sent us straight to the emergency room, they did all the tests I showed them a video of her movements and they diagnosed her with infantile spasms and West Syndrome. We were sent home with ACTH steroids to start treatments as well as Topamax and we also tried Keppra and vigabatrin. Her seizures came and went always on the ween they came back. It wasn’t until March 2011 we started the ketogenic diet after one month we weaned her off all medications. She was on the ketogenic diet for one year and has been seizure free since. Although she has had a few episodes we still aren’t sure about. Fast forward she is eight years old and usually very happy she struggles with cyclic vomiting constantly, constipation, and is still nonverbal and does not walk.
She has taught us patience, And a whole different outlook on life. Because of her, our hearts are full of love towards anyone who is handicapped. The hardest thing to deal with is watching other kids grow and pass her up. Finding the KCNQ2 group has made us feel comfortable, we feel like we belong somewhere, with people who understand. I think our biggest challenge is when she stays up all night or the night she stays up throwing up all night. And constant trips to the ER. She is also very tall and it’s challenging to carry and move around. When Madison was doing hyperbaric oxygen treatments, one day we were having lunch and a lady walked up to the table and said she’s going to be fine. I believe she was an angel sent to tell us it’s going to be OK. They gave me some kind of peace knowing that we can get through this. I am so thankful for this group the stories the comparisons, it is so helpful to know others are in the same boat. We really enjoy the Summits and all the information they bring us. Madison brings us joy on another level, in her own way she shows us she loves us so much. We are blessed to be given this challenge.