Benjamin's Story

Tuesday, August 14, 2011

A day at the lake...we were spending at least 2 days a week at the lake that summer. I was nursing Ben, now 4 months old, in our beach cabana when he stiffened, his eyes deviated left and his left hand began to twitch. I tried to "call" him out of it, but could not...gut instinct, something was very wrong.  I left James with a friend, who would also pack up a ton of gear! Ben's seizure had stopped (which is how my mind was describing what had just happened) and he was completely comatose. Limp and lifeless...I thanked God he was still breathing which helped me to keep some level of calm while we drove to the emergency room.

By the time we were being admitted to ER, Ben had woken and he was his normal self. The nurse and later Dr. were beginning to question whether or not I wasn't overreacting in some way. The ER happened to be full, so we were waiting, and waiting and waiting some more to be discharged, during which time Ben had another seizure, this time the Dr. saw it...next thing we knew there is a call being made to the neurologist on call at our city children's hospital and we were being transported there via ambulance.

We were admitted...immediately began blood draws, vitals, an IV is put in, he was given a bolus of Phenobarbital, then Keppra, an EEG was ordered (which came back normal), then a MRI...what can I say...this was all being done to my baby!

An arachnoid cyst was found in his left ventricle, but initially we were told that it wasn't causing any pressure on the brain, we would have to keep an eye on it though. We were sent home three days later, with Keppra and had been told that this was most likely Benign Rolandic Epilepsy, which he would eventually grown out of. At home, his seizures increased in number and intensity, we were back at the children's hospital...more blood draws, vitals, IVs, another EEG, boluses of medication, one bout of roseola. This time we met with the neurosurgeon who told us that there was in fact some slight pressure on the brain and that Ben would need endoscopic surgery to fenestrate the cyst, this would alleviate pressure and more than likely the seizures would cease. We ended up through a series of personal contacts being transferred to a larger city children's hospital for the surgery. The consensus among all the Dr.s was that the surgery would most likely take care of the seizures, which continued unabated even though we were steadily increasing Ben's meds.

Worst part...is that I had been doing my own internet research and I could find cases of arachnoid cysts causing seizures and once removed the seizures ceased. However, they were all located on the outside of the brain itself...I could not find one case of one located within a ventricle that once removed there was seizure improvement...so while we kept hearing "positive" outlooks I had a very nagging suspicion that this was not going to deliver all that was promised. And indeed, it did not.

Ben had brain surgery, 10 days after the lake incident. The next three weeks, Chet and I lived in the hospital taking turns sleeping on the recliner while the other slept on the floor. More blood draws, a whole lot more vitals, more IV's (I learned to guard that site with my life!), more medication boluses and changes, more MRI's, more EEG's, one horrific lumbar puncture, genetic and metabolic testing all coming back normal...and more, much more, seizures.

Chet and I initially wanted seizure control before we left the hospital...but after spending a total of one month between the two hospitals...we wanted to be home, we wanted Benjamin home. The extended time away from mom and dad, spending time with relatives, was taking its toll on James too.

Life did improve once we were home and we were working with a local neurologist, in some ways...because being introduced to epilepsy really sucked! Epilepsy is very broad...and I heard all kinds of stories of someone knowing someone who had seizures, had them controlled with medication and eventually grew out of them. But that is one end of the spectrum, the one where we did not land. We were in that small percentile that once you fail two medications your chances of getting seizure control diminishes quickly!

Failed medications: Phenobarbital, Keppra, Topiramate, Clonazepam, Ativan, Onfi, Trileptal, Zonisamide...Diastat (does work to stop a seizure).

Ben's development pretty much halted at 4 months. And the side effects! from seizures, from the medications and medication changes (the weaning on and off), from the surgery itself, were difficult adjustments that we as a family all had to make.

We still were not getting seizure control, though we did achieve some improvement...going from 150 seizures a month...to 60-70. Our local neurologist suggested the ketogenic diet in December, and we scheduled a consultation back at the big city hospital. I was not ready to go forward with the diet as I had wanted to wean Ben to solid foods and honestly, I knew it was going to be a lot of work and I was still hoping we could find a medication that would stop the seizures. It was when I finally read "Ketogenic Diets" by  Dr.s Kossoff, Freeman, Turner & Rubenstein, that I changed my mind. Meanwhile, we had two followup MRIs that showed the cyst slowly growing back! We chose to have another endoscopic surgery before starting the diet. To take that player out of the game, so to speak.

Ben's second surgery was performed in March of this year. This surgery was better in that we only stayed one night in the hospital and Ben did not have any increase in seizure activity (at this point he was averaging 2 a day)...however, it took almost 2 months for him to completely recover. He had just begun to roll-over before surgery, and he lost that ability or forgot how. A followup MRI in July showed the cyst still decompressed, Yeah! A fenestration doesn't remove the cyst, it perforates it and allows it to drain. We will have another follow up MRI in January, 2014.

Our Ketogenic initiation, which includes a 4-day hospital stay, was scheduled for June. I had just finished reading a great book," The Gaps Diet" by Dr. Natasha McBride and I was using it as a guide to introduce solid foods with Ben, while weaning him. The diet is naturally high in fat and very similar to the Keto diet and though we did not have improvement in seizure frequency, we did notice improvement with his overall alertness. Subsequent bloodwork done showed Ben was making ketones, and I was questioned about what I was feeding him...one thing repeated over and over again in the book "Ketogenic Diets" is: do not attempt this at home! Ben was also getting constipated on a regular basis...so, I backed way off the fat. Ben's seizures started to grow worse in intensity, coincidence? hard to say, but I was now administering diastat on a regular basis. Initiation was only weeks away! The weekend before we were scheduled for our one week stay to initiate the diet, Ben caught a stomach bug that James had had...he was spiking a huge temp., and wouldn't eat...but he had a couple seizure free days! To make a long story short, we went down for their Keto Clinic, blood work showed Ben was deeper in ketosis, we had a quick consult and we were heading home to start the diet! One hospital stay averted.

That brings his story up to date. My pregnancy and his birth were both without complications. Because of my age we had had two high-powered ultrasounds that had shown nothing unusual. In hindsight, we may have been seeing some early signs...the week prior to the lake, I had noticed him staring off in an odd way while nursing, no alarms going off, but I had wanted to mention it to our pediatrician that Friday at a scheduled well-check.

This excerpt leaves out quite a few details and certainly could not contain the volume of tears shed and prayers uttered. But one thing is for certain...GOD IS WITH US! Our Creator, He who knit Benjamin together in my womb, He who knows the end from the beginning, Our Savior, He whose Grace is without measure, is with us!

"And there are also many other things which Jesus did, the which, if they should be written every one, I suppose that even the world itself could not contain the books that should be written."