Peyton’s story begins in March of 2010 when we found out I was pregnant with our 3rd child. Very unplanned, but we were so happy to add to our happy crew. I had a completely normal pregnancy and on October 26, 2010, Peyton Grace Reed made her entrance into this world. She was a large 9 1bs 12 oz beautiful baby girl and we were thrilled!! Our wonderful pediatrician pronounced her one big healthy baby! The first 6 weeks of her life were normal….we did discover a milk allergy and had to start her on Alimentum.
On December 6th, I was holding her and noticed her leg jerked, just once, but it was weird. I had already had two babies and you get used to weird infant movements, but something about it just didn’t seem normal to me. We went on about our business of family life and over the next few weeks and thru the holidays, these leg jerks became more frequent and higher in number. We talked to the pediatrician and showed him a video of it and he felt like it was nothing but wanted to refer us to a pediatric neurologist just to be sure. Our appt was scheduled for Friday, January 7th. I was nervous but we have such a healthy family history, I felt like everything was going to be ok.
Things were not ok. I went back to work on January 3rd and my niece was watching the baby for us. I had asked her to count how many times Peyton had the leg jerks and for three days, it increased to the point where she was having anywhere from 30 – 50 leg jerks at a time and these episodes were happening every 5, 10 or 30 minutes. She would not seem distressed by it and would even smile thru the jerking but we noticed that her hands were trembling sometimes during the leg jerks. We contacted her pediatrician and he pretty much immediately had her admitted to Mission Hospital in Asheville, NC. This is about 35 minutes from where we live. I was scared but still felt like things would work out.
They immediately did an MRI, lots and lots of blood work and an EEG and even an abdominal ultrasound. I spent that entire night praying that she was ok and so fearful of what the results of all these test would show. MRI – clean, blood work was normal, u/sound was normal. EEG showed focal point seizures. The Pediatric neurologist started her on Keppra and assured us he was cautiously optimistic they could control the seizures and likely she would eventually outgrow them. The Keppra didn’t work and the seizures changed into another seizure type called Infantile Spasms, these are not as innocent as they sound. These are catastrophic seizures that can cause serious developmental delays and mental retardation. The Keppra was stopped and she was started on Prednisolone. This stopped the Infantile Spasms and we were sent home from the hospital feeling pretty darn “cautiously optimistic”.
Three days after we got home, the seizures came back, not the infantile spasms, but seizures nonetheless. We went in for another EEG and it was clean. Feeling pretty good, we started feeling like things were gonna be ok. Over the next few days the seizures got worse and more intense and we called the neurologist again. He called in Zonogran. Peyton was seizure free for about 24 hours and we were ecstatic, then the seizures started again, worse than before. The neuro upped her dosage and they stopped again. We were happy. The seizures came back within 24 hours along with more of what appeared to be Infantile Spasms. At this point, we knew we had to go to a bigger hospital. We called our pediatrician and within 24 hours, we were headed to Chapel Hill Childrens Hospital (5 hours from where we live).
Peyton was admitted and had another MRI, a 48 hour EEG, massive amounts of blood work and a lumbar puncture. We just knew these great minds would get to the bottom of this. Our wonderful docs at Chapel Hill started aggressively treating the seizures. NOTHING worked. Tegretol, Phenobarbital, Trileptal, Keppra (again), Klonopin…..all the tests came back NORMAL. I didn’t get it and I wanted to call Dr. House. What I didn’t understand is that a vast number of people with seizures never ever find out WHY they have them and Dr. House sure couldn’t help us. Thru February and March, Peyton was in the hospital for a total of 25 days and no seizure control. We started her on the Ketogenic diet in March and this seems to be slowly slowly helping slow her seizures.
She is currently just weaned off Klonopin (nasty drug for her) and is taking Phenobarbital, Keppra, and several supplements. She is still on the Ketogenic Diet. She receives weekly PT, OT and has lots of loving family and friends that help us care for her. She is very developmentally delayed but we see daily signs of improvement and she is such a warrior. This has been the most difficult time in my life, but so many blessings have come our way since this journey began and God’s hand has been in everything. The goodness of others is astounding and we are blessed up one side and down the other (as we say in the south).
