Thursday, March 13, 2014


(I am writing this down also for my records)

So I talked about the fact that Henry has been having seizures HERE.  After the first of the year we got to talk to a Neurologist about the seizures and what steps to take.

Then we waited.

The end of February Henry had an EEG.  (What is an EEG’s HERE

At the appointment Henry did AMAZING!  Which was surprising and awesome!  I was SO proud of our little man.  It is good that he laid still for the hour because it yields more accurate results.

Then we waited more.

Tuesday we went back to the Neurologist for the results.  To say I was anxious was an understatement but I also went in with no expectations.  I didn’t want to think it was one thing and be disappointed if it was another.  I didn’t want my mind going places with him it shouldn’t.  I just wanted to hear what the doctor had to say and then go from there.  So my mind was sort of blank but also a complete jumbled mess…if that makes sense.

(We were there for 2 hours...mostly waiting and keeping a 2 1/2 year old entertained!)

Basically the result is at this point he is diagnosed with epilepsy.  However, the EEG came back normal.

Huh, normal but has epilepsy?  You ask.

Yeah me too.

Basically because Henry has had  9-10 seizures in 4 months with at least one not having a fever associated with it he is considered to have epilepsy instead of just febrile seizures, which is what they were thinking it may be early (normally the seizures were associated with a fever and sickness like in febrile seizures).

It is said that at his age (2 ½) it is hard to fully diagnose the exact cause/s of the seizures.  Only time will tell if this is something he will outgrow (which is a strong possibility) or something that he will live with for the rest of his life.

What is epilepsy:
Epilepsy is defined as: “a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.”

Henry started taking 1.5 mL of seizure meds (Keppra) twice a day on December 31st.  He will continue to take this medicine for the next 2-3 years.  His dose may or may not be adjusted as he grows depending on if he has any more seizures.  If he goes 2 years without a seizure then there is a high possibility of taking him off the medicine to see how he does.

There really isn’t anything else we can do from our end, if a seizure is going to happen it will happen.  We just keep giving him his medicine and watch him for anything that is abnormal in regards to the way he acts.  He will have other appointments at the 3 month mark, 6 month mark and one year mark and then every 6 months for awhile.

What does the medicine do?
They don’t completely know how the medicine works, but what they do know is that it ups his threshold in the brain (which is lower) to tolerate any abnormal brain activity that may occur.  That activity could be a result of a sickness and/or fever (other things) that lowers the threshold.  It basically keeps him level….which is ironic because a side effect of the medicine is mood and aggressive behavior.  So it hard to tell if he is experiencing that as he is TWO!!! :-)

Why was the EEG normal and he still has epilepsy?
“The EEG records the electrical activity of the brain. During a seizure, the electrical activity is abnormal. Once the seizure is over, the brain rapidly returns to normal in most individuals. When an EEG is done several hours or even days later, it misses the changes in electrical activity that occurred during the actual seizure.   The likelihood of recording a seizure during the EEG is small. The EEG generally records brain waves between seizures, called interictal brain waves. These waves may or may not show evidence of seizure activity. The neurologist looks for spikes or sharp waves ("epilepsy waves") to confirm the diagnosis, but the absence of these abnormal brain waves does not eliminate seizures as a possibility.”

Basically, they didn’t find any seizure activity or abnormal activity in his brain that is going on that may have not shown itself to us in the form of a seizure.  That is good.  Had something showed up, further testing would have been required.  However, that doesn’t mean that he couldn’t have another seizure in the future.

So why do an EEG in the first place?
It is the easiest and most non-intrusive way to check the brain’s activity.  If there was a major issue it most likely would have shown up on the test in the form of abnormal brain activity.  HERE

Overall how do you feel about this?
Honestly, I am relieved but also confused and trying to sort out my feelings and thoughts.  This is going to be a process, a long process.  He could have another seizure tomorrow or he could never have another seizure again.  Praying for the latter!  He could grow out of this in a few years or have to live with it the rest of his life.  We don’t know and won’t know right now.  The answers are vague right now in regards to the long-term, hence my confusion and the fact I am still worrying about this.

BUT, the relief is in the fact that nothing abnormal showed up and the medicine is working and he is healthy and the doctor is optimistic and all that is great news.  Wonderful news.

I still have questions.  I started thinking of them shortly after I left the doctor and will compile my list of (possibly) ridiculous questions to ask the doctor in 3 months.  I for sure have worries about this but, unlike before when everything was unknown, we now have some answers.  Granted, they are not complete answers but we have them and I am taking some comfort in that.

 I need to get past the idea of what I thought Epilepsy was and focus on Henry’s specific situation.  I have cried a few times at the thought that he may have to deal with this for the rest of his life.  But I have to stop myself as I know he may or may not be that child and I can’t let the fear of the unknown control me like it has the past six months.  And even if he did have it, there are SO many people who do and there are ways to live with this. But again….won’t think about that, I will only think about what we KNOW.

I am just letting months of worry and uncertainty sort of settle in my brain now that we have a direction to go with him and then move forward and focus on the now.  Terry is the type of person who when he heard this he instantly felt relief.  I tend to need to let it process, think of questions/concerns, release that emotion and fear that has built up inside me, and refocus my thoughts and energies.  I think for me there has been so much fear I have pushed down inside me and so many thoughts I have tried to keep in the far reaches of my brain that I am now letting that go and the release is a bit unsettling.

Like, are you SURE I can stop worrying about this the way I was?!  Is it OK to for me to not be as fearful as I have been?!  What if I stop worrying so much and let down my guard….I bet THEN it will happen.  It is this feeling like if I start to feel comfortable again like I was before his first seizure THAT is when a seizure will happen.

I am trying to let that go, well as much as I can as it is not healthy for any of us.  I will always worry.  Parents ALWAYS worry about their kids, even if they are 100% healthy.  And Henry is like 98% healthy but I just have those visions in my head of him going through his seizure, visions that I never will get out of my head and I get scared.  But with each passing week and month he is seizure free is a blessing and I am focusing on that!

I am focusing on the WONDERFUL and AMAZING and HEALTHY and slightly more agitated little man we have been blessed with to have as a part of our life.  This little guy that brings SO MUCH joy to our lives.  He is truly a blessing and I am thankful EVERY. SINGLE. DAY. that he is ours and we are his and no matter what, it will all be OK in the end.

We just think his brain is so amazing that it fires a little faster than most….

Post appointment with stickers on eyes and sucker in mouth....yep, awesome.

1 comment:

  1. Amazing kid + amazing brain +nervous/anxious mom = ??
    Way to hang int here Jenn! Henry is doing awesome and so are you :)