Inter Ictal

Inter Ictal Spikes...someone please tell me what this means. My mind is swimming with questions.

Logan had a sleep deprived EEG on Tuesday. After about only four hours of sleep the night before, he laid in my arms with electrodes hooked to his head. About an hour later we were sitting in the neurologists office being told that Logan has an abnormal EEG. He is having inter ictal spikes in the right temporal lobe. So from what I understood, he is having abnormal brain activity in the right side of his brain. I am being told it is not a seizure, it is what is seen between seizures. So my next question, is he having seizures. The doctor does not think so and we have not seen any seizure activity since the big one in November. Right now I am so confused!

So apparently Logan may have sustained brain damage from his two hour long seizure in November. At that time he was in what is called status epilepticus. His brain may have been deprived of oxygen during the seizure causing an insult to his brain. The other hypothesis is that his underlying disease process is worsening causing these changes to his brain activity.

How do we find out which may have caused this you ask. Well, an MRI may or may not tell us. It will most likely just give us a new baseline view of his brain, if there are in fact changes that can be seen. What I am saying is, we may never know the culprit.

Where do we go from here? Logan stays on Keppra, the anti seizure medication. We have a rectal medication to give in case he has another seizure so we can stop it in its tracks and avoid it lasting two hours. We have another MRI repeated. And we wait. The hope is that his Keppra will be at a dose that will prevent the onset of a seizure.

I have no idea, but it sure feels like these inter ictal spikes mean he is more susceptible to having a seizure. But what do I know. I have started some research but my brain just can't wrap around this. Does he now have epilepsy? Is he having seizures we don't know about? What is the cause of this change, because the EEG when he was a little under one years old was normal.

I was always worried that his brain would be injured from the November seizure. Is it mothers intuition? We still have no diagnosis. DNA sequencing is still in the works. Results hopefully in May. I was doing so well patiently waiting. Now it feels like the importance of a diagnosis is heightened. At the same time, will it change anything? Most likely not. Logan is who he is and a diagnosis is very unlikely to reverse his symptoms. We are in symptom management and prevention mode.

To top it off we may have a reason for all the tongue biting. The neurologist thinks his chorea, this is a term to describe his abnormal body movements, has moved to his tongue and jaw. We have noticed him rhythmically moving his jaw and tongue but didn't put two and two together. Now it makes sense. We also discussed the possibility that Logan has a decreased sense of pain. This may be why the tongue biting does not bother him and why he grinds his teeth and does not appear to feel pain from this. If Logan has future problems with oral infections we may have to pursue pulling teeth. In the meantime the neurologist is going to start Logan on a medication to lessen the movements. We do not have a prescription yet. He wants to think about what medication he is going to use and let us know. I worry that whatever med it ends up being, will sedate Logan.

We have been working hard to get his strength back and help him continue to learn more skills. I worry that this medication may slow his progress. What a balancing act. How do you treat symptoms, prevent problems, and encourage development when many of the strategies defeat the other. My mind is swimming.

So for now I am going to end this post here. I am still in that phase of raw emotion and searching for answers. Answers may not come so easy so I need to stop this mental roller coaster. At least for now. I will continue to ask questions and research. I am open to information from others who have gone through similar situations. I am also interested in links and articles that would help educate me about the topics of seizures and movement disorders. Email me at rbyrne4@hotmail.com if you have anything.

Another bump in the road...that's okay, we like to drive fast and take chances! So join us along on this crazy ride and see where it continues to take us!