Our Story

We are not exactly sure when Eli started having seizures.  When his seizures started, they were several slight head drops in a row.  He seemed a little out of it during these episodes, but would usually continue to walk around and do whatever it was he was doing.  The episodes usually lasted about 3-5 minutes with about 20 head drops.  I know he was definitely having seizures by his first birthday, but I am not sure exactly how long before that they started.  We thought they might be reflux at first, as his eyes watered and the movement almost looked like retching without any sound.

One morning he had one of these episodes and was shivering with it, and that was the first time I got scared that they were seizures.  We spoke with our pediatrician who agreed that it was probably reflux and we tried treating that without any success.  Then we videoed a few of the episodes and sent them to a neurologist who did not think they were seizures, but we decided to get an EEG just to be sure.

November 8th, 2013 – the day of our EEG.  When we went back to get the EEG, Eli had one of the episodes.  I asked the EEG tech if she thought it might be a seizure, and you could tell by the look on her face that she did.  We had to wait while they performed the EEG and I was a nervous wreck.  When they finally called me back, they said that they were going to page the doctor and have her look at it right away.  I knew it was bad.  After a few minutes we were told to go straight to Neurology clinic that afternoon.  Again, I knew this was bad.  I have never been so terrified in my life.  This is when we met Dr. Ness.  She is a wonderful doctor who spent a lot of time with us that afternoon.  She reviewed the EEG with us and told us that it showed generalized epilepsy.  The good news was that he appeared normal, his development was right on track, and his background rhythm on the EEG when he wasn’t having a seizure was normal.  She informed us that this was a generalized epilepsy of childhood, that we hopefully would be able to control it with medicine, and that he would hopefully grow out of it.  We were given the option of doing nothing, starting medication or getting more information with a 24 hour video EEG.  We decided to get more information to decide what was going on before starting therapy.  This is when my crash course in pediatric epilepsy began.

November 25th, 2013 – Admission to Children’s Hospital of Alabama’s Epilepsy Montoring Unit (EMU) for our first video EEG.  This is where I have to mention how incredibly fortunate we are to be so close to a top notch pediatric epilepsy program.  The new children’s hospital is amazing, and the nurses and techs that we have encountered there have been absolutely wonderful.  We got our little man hooked up for his EEG, with his wires put in a little backpack, and waited for him to have a seizure.  Luckily, he had one of his usual episodes early that afternoon and we were able to catch his seizures on video and EEG.  The pediatric epileptologist (seizure expert), felt he was having atonic seizures and that his EEG and seizures were most consistent with something called Myoclonic-Astatic Epilepsy or Doose Syndrome.  This is often listed under the “Catastrophic Epilepsies of Childhood” when you google it.  It freaked me out.  Further research however, gave better prognosis than what I had previously read.  We were started on Keppra and discharged.  We also did a battery of 50 genetic tests during that stay which still don’t have the results of at the time of starting this blog.

Keppra worked great for 4 days.  We didn’t see any seizures, but then they came back as often and as strong as before.  Just after Christmas we added a second drug, Zonegran.  This did nothing, and might have made the seizures worse, and it gave him a terrible, blistering diaper rash which we could not get better until we stopped the drug.  Then we added a little bit of clonazepam at night since most of his seizures occur at night, but this made no difference and made him pretty wobbly during the day.  At this point we decided to try the ketogenic diet.

January 27, 2014 – admitted to start the ketogenic diet.  The ketogenic diet is a very high fat diet that forces the body to use fat instead of carbohydrates for energy, and to produce ketones.  Ketones can serve as an alternative source of energy for the brain, and can in some cases stop seizures.  This is especially true for Doose Syndrome, which is why we decided to try it.  We were admitted to the hospital, and started the diet.  We had to watch his blood sugar closely and monitor his urine for ketones.  Once he was in large ketosis then we were suppose to go home.  But, this is when the big ice storm hit Birmingham, so we were stuck in the hospital for an extra couple of days.  We were suppose to also get an MRI during this hospital stay.  This is something that all kids with epilepsy should have to make sure there are no abnormalities that could be causing the seizures.  We hadn’t done this yet in him because his seizures appeared to be generalized on EEG, and the longer you wait to do it the better because the white matter part of the brain is still developing in kids his age, so it is better to do it closer to 18 months of age.  Well, to everone’s surprise, Eli’s MRI was abnormal.

January 30, 2014 – abnormal MRI.  When we got back from taking Eli to get his MRI, the neurology team was waiting for us.  They came to tell us that they had found an abnormality on his scan.  There was a lesion in the very front part of the left side of his brain (left pre-frontal cortex).  They said it was most likely a congenital abnormality called cortical dysplasia.  Much more rare it could be a low-grade tumor.  It did not appear at all to be a malignancy.  They explained that this meant that he likely did not have Doose Syndrome and that he might need surgery to resect this area of the brain to stop his seizures.  We were shocked and this sent me into complete freak out mode.  I couldn’t believe someone was telling me that my little baby might need brain surgery.  We spoke to the neurosurgeon during this hospital stay who told us the same thing.  It was decided that we would give the diet a try for at least 4-6 weeks and then discuss surgery if it wasn’t working.

The ketogenic diet was difficult to say the least.  We are lucky that our little man is an eater.  He really will eat anything, and he did eat every last little morsel we gave him on the diet.  His meals usually consisted of a little meat, a little fruit or vegetable swimming in butter and a cup or bottle of whipping cream.  Everything in the meals had to be measured out to an exact ratio and any extra carbohydrate could knock him out of ketosis.  The hardest thing was keeping him from getting his sister’s juice or snacks.  The measuring and planning were not bad at all.  The hard part was that he just seemed hungry, all.the.time.  He would just cry at his high chair for food.  It was also hard to keep him in large ketosis, his body just wasn’t very cooperative, even when we were being very consistent with the diet.  Also it didn’t work.  His seizures were the same to worse no matter if his ketones were low or high.  It was beyond frustrating.  At this point, we talked to Dr. Ness again, and she felt it was really time to explore the surgery option.

March 13th, 2014 – admitted for 2nd video EEG.  We were again admitted to the EMU at Children’s Hospital for another video EEG.  Ever since Eli started the ketogenic diet he has been a fussy mess and this hospital stay was no different.  Luckily it was short and they were able to record his seizures.  The epileptologists now feel that his EEG is not showing generalized seizures, but that there are indications on the EEG that the seizures are focal and are coming from his left side.  They believe that he does need surgery and that it should be sooner rather than later.  During this admission, we met with the surgery coordinator and she is getting us set up for tests that will be used for surgery.  The good news on that admission was that we got to stop the diet, yay!.  Little man is much happier now and overall appears to be in a better mood, even though there has been no change in his seizures.

At the time that we started this blog, we are still waiting to complete the testing needed for surgery and waiting for the final decision that he will be a surgical candidate.  At this point we are terrified of the surgery, but I think even more terrified that he won’t be a candidate and we will be back to square one with nothing working to stop his seizures.  He is currently having 2-3 clusters of seizures a day, and on a bad day will have >100 seizures a day.  His seizures have continued to stay the same with clusters of head drops and luckily we haven’t seen any tonic-clonic or other scary types of seizures yet.

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