Epilepsy Families: Liam's Journey

Continuing our look at what Epilepsy is for other families, we have Holly. She is the grandmother to Liam, who is the cutest little 4 year-old ever. We had the pleasure of meeting them in person at a Purple Day event we went to, earlier this year.

Three happy Epilepsy boys! Renn, Christopher, and Liam

Liam's journey is also one of frustration and confusion... But you'd never know it, because his smile is so darn infectious!

Take it away, Holly!

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February 4, 2013

I was awakened by my daughter about 7:00am telling me that my grandson, Liam, had just had a seizure.

What?

She took him to the pediatrician that afternoon and she suggested an EEG. That was done about a month later. We never heard any results so we figured we’d just wait and see if he ever had another one. Well, 3 months later he DID have another one. I heard a strange yelp and ran looking for him around the house and there he was, seizing on the living room floor. So now we suspected Epilepsy. We started checking around to see what had happened with the EEG results. After finally tracking them down, we had to go meet the Dr. if we wanted to know the results. 

She told us... Liam has Epilepsy. 

She referred us to a neurologist at Children’s Hospital Central California (CHCC).  It took about a month to see him. In the meantime, we had a seizure at Disneyland in his stroller, and then several more… culminating to 2 seizures in one day, which, at that point, we called paramedics. They took him to the hospital and he was put on 1.5 ml of Keppra 2x per day and we were given a few Ativan pills only for emergency.  This was 10 days before his first neuro appt.  He had a couple more seizures and then the day of the appt. he had a seizure just before getting on the elevator to see the doctor. The Dr. increased his Keppra to 1.6 ml and ordered an MRI. The MRI showed nothing unusual. He told us the EEG showed frontal discharge, meaning he had complex partial seizures. (My guess was secondary generalization due to his convulsions).

Finally, after a few more seizures here and there we finally got him stabilized at 3.5 ml Keppra.  At around the 1^st of October (two months later) we started noticing his head was dropping (atonic seizure).  He didn’t seem to notice, it was so quick. So Dr. upped Keppra to 4.5, made no difference. Dr. decideed to switch to Depakote and wean off of Keppra. Big mistake! A few weeks into the wean he started having convulsive seizures. 3 in one day on Thanksgiving. So we immediately, upped the Keppra again, he had two more seizures a few days later, we upped it again and then he stabilized at 3.5ml Keppra and the 2.5 Depakote he had recently been put on. We were still not noticing significant improvement in the head drops, but no more big seizures!

We finally met with our new neurologist. The first one had moved on. He upped Depakote to 3.5, and a ordered blood test. Said he may have a variant of Doose Syndrome (from what I’ve read this does not sound correct to me) and that he may need to go on the Ketogenic diet soon. Everything seemed to be going well for a full month (except he was still having head drops), then he had a bizarre seizure on January 2, 2014 that we had not seen before. He let out a big scream and stood up and seemed to be hallucinating for 30 secs to 1 min. Then he snapped out of it and promptly fell asleep. That ended up being a fluke and didn’t happen again.

Depakote was taken out of the equation and we are only on Keppra, now. We were told to go on the Ketogenic diet for his head drops, after a 48 hr VEEG. But….about 2 wks after his testing his head drops seemed to have disappeared! So, at that point, we would not have to do the Ketogenic diet.  Yay!

Well, one night in March (after going 8 mos seizure free, except the Thanksgiving incident), Liam’s Mom forgot to give him his Keppra and at 5:00am we had a myoclonic, tonic-clonic type seizure. No big deal, right? It had to be the meds. However, a few days later they started up again. Only now they are just while he is sleeping. Dr. has decided to put him on Onfi also. This was a very gradual process as he was still having seizures until we finally reached the right dosage. 

It has been 2 months now, but we know we are not out of the woods. Liam has been diagnosed as moderately autistic and is going to a special educational preschool. The Dr. was not surprised with this diagnosis. Apparently, it’s not uncommon for this to go hand in hand with epilepsy.  If this newest drug fails at some point we will definitely be put on the Ketogenic diet.  I still do not think he has Doose Syndrome, as the hallmark symptom for that ailment is drop seizures. We do not have that! Another thing when I asked the new neuro about the complex partial seizures, he told me “no” he has Generalized Epilepsy. Why would the first neuro say he had pinpointed the seizures coming from the frontal lobe? Don’t these two Dr’s know how to read an EEG?

Hopefully, our road will be short with this awful ailment but you just never know. Anxiety and worry have now filled our lives and it’s not a good feeling. Yay, for Epilepsy awareness programs and our Moms of Epilepsy group! It really helps to talk to people in the same boat as you. Love those ladies!