Tuesday, June 28, 2011

Vanderbilt, More Medicine, and a New Diet

 After trying unsuccessfully for a little over a month to get Will's seizures under control, Will's amazing neurologist, Dr. Sharpe, met us at Vanderbilt Friday evening. For the past several days when Will would wake up from his nap he would have clustered seizures for at least an hour but usually longer. When the seizures wouldn't stop despite the increase in medicine, he told us to meet him there and we would try to get the seizures under control. Thankfully Mandy and her family were at our house so we had someone we trusted and Jack trusted to leave him with. That was a huge blessing despite the chaos, and I'm so thankful it worked out that way.

We loaded up the car and headed to Vanderbilt. We walked into the ER entrance right after Dr. Sharpe and were able to be seen almost immediately. We talked about the course we would be pursuing to find the right drug for Will. The hospital had no rooms for Will so we would be staying the night in the observation unit located close to the ER. But first Will had to get an IV so we could check blood levels for drug toxicity and administer ativan, a drug they use sometimes to try and stop seizures-- Think valium. The first time the nurses tried to start the IV they poked through the vein collapsing it. This must have made them only more nervous/flustered considering the heart breaking cries of a 3 1/2 year old who doesn't understand what's happening, because it wasn't till the 4th attempt the nurses were finally able to get the needle in. That was pure torture for Will, Patrick, and me. If we had it to do over again we would have asked for someone else to come in and try. Lesson learned.

Will was given his ativan and vitamin b6 and we were sent to his room. We met the nurse there and while she was very very nice she didn't quit coming in until after 1 a.m. I understand the need to come in and get everything in order but just coming in over and over again because you keep forgetting to do things...that would be frustrating for any child/parent who are at the hospital, when your child's seizures are increased because of a lack of sleep--maddening. Anyway. Because the ativan makes you feel soooo good Will wasn't easy to get to sleep. I eventually had to hold him standing up and rock him. The 36lbs of 3 1/2 year old finally went to sleep. I offered my heartfelt thanks that I didn't have to do that any longer, and how thankful I was to be there so we could get the help he needed.

The next 3 days went about the same; Seizures every 2-3 minutes, and different medicine combinations (euthosuximide, phenobarbital, banzel, clobazem, dilantin, felbamate, zonegran, keppra, depakote, vitamin b6). Nothing seemed to help. Needless to say we were getting pretty discouraged.

On Tuesday morning when Dr. Sharpe came by to make his morning rounds we decided to take a new course of action. We knew that when you try 3 anticonvulsants and they don't work the likelihood goes down dramatically of finding anything that will work to 33% then after the 4th it goes to 11% (if I'm remembering correctly). We discussed VNS surgery. "The procedure goes as follows: an incision is made in the upper left chest and the generator is implanted into a little "pouch" on the left chest under the clavicle. A second incision is made in the neck, so that the surgeon can access the vagus nerve. The surgeon then wraps the leads around the left branch of the vagus nerve, and connects the electrodes to the generator. Once successfully implanted, the generator sends electric impulses to the vagus nerve at regular intervals. The left vagus nerve is stimulated rather than the right because the right plays a role in cardiac function such that stimulating it could have negative cardiac effects" (info from wikipedia). It is an adjunctive treatment for certain types of epilepsy. I don't remember all of the statistics surrounding VNS, I just remember that it might help but it might not and that it is very expensive and insurance would have to "ok" it first. So in the meantime the doctor suggested trying the Ketogenic Diet. We were familiar with the diet and had done a little reading on it because we knew it might likely be something we would have to try. So our prayer became at that point that our insurance would give the "ok" for us to stay in the hospital so the dietitian could teach us how to do it, and we'd have her right there to help and ask questions.

We met with Ms. Mary (love her!) a couple hours before lunch, and she told us to order him a pizza (his last one :(  and we would start a 1:1 ratio (1 fat:1 carb) at dinner. We would then increase over the next few meals up to 3:1. The classic keto diet is 4:1 but they try 3:1 first because it often will be enough.

The next 2 1/2 days went pretty much the same: Begging Will to eat, Will throwing up, Will refusing his meds (we no longer could give him liquid medicine because those contain sugar. We had to crush the pills add water and syringe), and fewer and fewer seizures! It was amazing. We could actually keep track of how many he was having, and they were significantly down.

Thursday we were discharged and almost as unprepared for what it would be like to continue the keto diet at home, as we were when we brought Will home as a newborn. It was a tad scary.

We were so grateful that Mom and Mandy took such great care of Jack. He loves them both so much, and so do we. We missed him but knew he was having more fun with them then he had probably had in 6 weeks. Will's situation had kept us pretty much home bound and inside. I know there were so many prayers and many people fasting for Will and our family, along with other kind and generous acts of service. Your prayers and ours were answered. Maybe not the way we thought was best, but he laughs! What gratitude we have we could never form into eloquent sentences. But thank you. Thank you. Thank you. Our cup truly "runneth over."

Friday, June 10, 2011

The Month of May

This month seems to bring a lot of weight with it. Before becoming a Mom I always associated it with my half birthday. After it became Will's half birthday. But last year it became the start of a life changing diagnosis: Epilepsy.

May 18th. The day that had lived infamously in my mind over the past year. Will had 3 seizures that day. One at our new home. Two more later that evening at Vanderbilt. The next day was filled with unanswered questions an MRI an EEG and a very exhausted family. I had thought a lot about that day over the past year, and hoped to never have one like it again.

May 10th started out regular enough. Breakfast. Playing. Exercising. Holly had called and we had a good short chat. Around 10:30 I was in the living room with the boys who were being very silly and causing a mess with the water in their sippy cups. I had sat down on the couch and just worked out a babysitter for that Friday night when Will started gagging. He was on the couch by me so I tried to sit him up, but in just a few seconds we were in the middle of a full blown tonic clonic seizure. This wasn't the first one since May 18th 2010. Will had had one March 26th. Patrick had been home though. It was on a Saturday morning. We had had to administer the rescue medicine. That one had lasted about 5 minutes. As I tried to remain calm and quickly noted the time on my watch I prayed and prayed it would end and I wouldn't have to give the medicine. The time quickly or slowly? came when it was necessary to administer the medicine. My hands were shaking so badly it probably took me 30 seconds too long. But once it was given I noted the time on my watch again. Waiting. Praying. Waiting. Praying. It's not ending. Why isn't it ending?! Administer second dose. Call 911. Call Patrick. Call Mom. Ambulance arrives. Jack is terrified of the EMT carrying Will out the door. We buckle up in the ambulance and ride over. We are there for about 3-4 hours then finally released with instructions to increase Will's daily doses of anti convulsants. Two Happy Meals and chocolate shakes later, thanks to Nonna, things seem to be improving.

Patrick worked from home on Wednesday, and Thursday me and the boys ventured out. A trip to the library, then to target. Everything seems "normal" again.

Friday morning I'm awakened to another seizure. It lasts longer than 5 minutes and we must administer the rescue meds. Thankfully the meds work this time and the seizure soon ends. The rest of the weekend passes peacefully but Will starts having moments where he yells out and loses muscle tone in his body and falls to his knees a lot.

In addition to the medication Keppra, the next week we started trileptal and seizures increased in a BIG way. We then moved on to topamax, and depakote The potential side effects of the last 2 were enough to keep me praying near constant. We now are unfortunately familiar with a wide range of different seizure types: Tonic Clonic - the violent shaking seizures, Myoclonic- Neck loosing muscle tone or jerking of arms or hands/fingers, Atonic or "drop" seizures - Losing all muscle tone in the body and instantly dropping to the floor (These are responsible for more busted lips than I can count, bruises all over his face/body, and a chipped tooth), and Absence -staring spells.

Over the next 5 weeks things only intensify to the point where Will stops talking to us, and days go by without him smiling. Naturally his anxiety is through the roof and he wants to be held 80% of the day and needs someone sleeping with him through the night and during naps or he won't sleep. And if you didn't know sleep deprivation = more seizures. Patrick and I are functioning in survival mode. The constant worry with Will about trying to protect him and find something that will help tame the 100-200 seizures a day consumes nearly every thought, prayer, and action. Yes, for the past 2 years now, I hate the month of May.