Call If Any Seizures, Don't Panic!

First week in school is complete. Monday was a big day. Lauren spent the whole day at school and although she had a wheelchair there to use, she didn't. She relied on her cane. That evening we went to the Phillies game. The tickets were from CHoP. We were part of Lidge's Legion. The kids got hats and went to the field during batting practice to meet Brad Lidge and Charlie Manuel. Pretty cool. The odd part was that since they were from the Children's Hospital, you would think they would have special accommodations for sick or handicapped kids. They didn't. The seats were on the top row. So needless to say, Lauren walked a lot and overdid it. Tuesday she went to school, but we had to pick her up early as she had a headache and leg pain. Wednesday we were at the hospital all day with follow up appointments, Thursday and Friday she was fine. She took the small bus home on Wednesday so she got door to door service, but she was horrified by it and begged to be allowed to take the regular bus. Fine by us.

Our day at the hospital on Wednesday was primarily to follow up with our primary Neurologist, Dr. Dlugos and the nurse practitioner we have been working with for years, Barbara Beck. Barbara examined Lauren and was delighted with her progress. She wrote new prescriptions for Lauren, who is now on Dilantin, Phenobarbital and Vimpat. The first two are old school drugs and the latter is a new age one. Barbara has us weaning Lauren off of the Dilantin over the next 11 weeks. This is how we do it, we slowly wean her off her drugs. We should be completely off the Dilantin by mid-July, then we regroup and consider what to do next. The instructions at the bottom of the drug protocol says to "call if there are any seizures, don't panic!"

We discussed the breakthrough seizures she had in the hospital as well as the small one she had at home when she missed an evening dose of her pills. Both he and Barbara said not to be concerned about them. Dr. Dlugos said that our treatment plan is, and always has been, to balance the treatment of seizures with side effects. We did that with the surgery, taking as much of the dysplasia as possible without permanently crippling Lauren; and we will be doing that with the drugs, weaning her off as many as possible while keeping her seizure free. He confirmed that the biopsy of the resection showed abnormalities. If we could get her down to one drug that didn't have a lot of harmful side effects that would keep her seizure free for the rest of her life, I would take that. Dr. Dlugos said it would be two years before we know exactly where we stand.

After our meeting with them, we went over to Seashore House to visit with the Therapists. It was fun for all. I wasn't there but on her last day, two Fridays ago, there were a lot of tearful goodbyes. The Therapists loved seeing Lauren in her skinny jeans rather than loose sweatpants. We then went to McDonalds at CHoP, which effectively killed the day. Next week we meet with Dr. Storm for a follow up with him.

Last Thursday, Sandra took Lauren to Moss Rehabilitation Hospital in Elkins Park to be evaluated for outpatient therapy. This hospital is about five miles from our house, so Lauren will go twice a week after school. Pretty convenient and Moss has an outstanding reputation. Lauren's new PT is named Matt. He spoke almost exclusively to Lauren (which we prefer), and he noted that he would still work on her leg, but also on total body strength like her thighs, hips and core. He will consult with Ashley at Seashore House to coordinate their treatment plans.