Kristin's Home!

Hello everyone! Kristin and I came home from the hospital yesterday afternoon. It is so good to be home! She is doing well right now, eating cheese and playing with her brother and sister. She started a new seizure medicine at the hospital which seems to be reducing the amount of seizures she has. We will start treatment in 2 weeks called the Ketogenic Diet, so we'll be back in the hospital for 5 days. The doctor believes that Kristin will respond well to the diet which has a 50% chance of preventing all her seizures. That would be amazing! For those of you who have not heard her diagnosis, here goes:

Kristin was diagnosed with cerebral palsy when she was 18 months old and with generalized Epilepsy last August. She experienced "absence" and "myoclonic" type seizures regularly throughout the day. She was on 3 types of anti-seizure meds, and we were still making changes to dosages/combinations to reduce her seizures even more. (Before starting her medication last August, she was having 12-15 seizures a minute.) Her CP is highly functional -- she is able to walk with leg braces, feed herself and speak 2-3 word phrases.

When she got really sick 3 weeks ago with vomiting, dehydration and high fever, something triggered in her brain, and she began experiencing an increased amount of seizures as well as new types of seizures. The brain MRI told us that she has a condition called Polymicrogyria (PMG.) It is a rare congenital brain defect most likely resulting from the twin-to-twin-transfusion syndrome. It can not be fixed, and it will not get worse, although the seizures caused by the PMG may damage her brain further if we can not control them. Further brain damage will worsen her cerebral palsy, making it more difficult to walk and eat and control her movements. She could also go into "status epilepticus" which is a state of being in a constant seizure and will stop her breathing.

That's pretty much what we are working with now. Controlling her seizures is top priority, and I think we have a good plan with a good doctor.

Thank you so much for keeping Kristin in your thoughts and prayers these last 3 weeks. We still have a long way to go, but with God's grace, we will get through this as well. Kristin seems to be the expert at overcoming "rare" conditions! We love you all!

Sarah