In 2018, we already went to Utrecht for an operation. Unfortunately, we were then told that the possible operation could not take place, because the spot to be operated on was in the motor area. Consequence: paralysis. We chose not to have the operation and gave science some more time. We hoped that medication could provide stability and that new breakthroughs would follow in the fight against epilepsy. 4 years later, we had to take the step.... .
What has already happened?
People in contact with epilepsy patients will certainly know. There is a cartload of medication in stock. And yes, we have tried almost all of them. Dr. Jansen came up with a very clear saying, "We can take the epilepsy out of the child, but then the child's personality is gone too." And we can assure you that this is absolutely true. Once the seizures were so severe that we really had to give an overdose of medication. At that time, Ella-Marie could no longer walk 5 meters on her own and was completely out of it.
The non-exhaustive list of medications already tried:
- Depakine
- Keppra
- Tegretol
- Vimpat
- Fycompa
- Lamictal
- Rivotril
- Frisium
- Trileptal
- Bucolam (noodmedicatie)
- ...
What is the situation now?
Despite fairly heavy medication, Ella-Marie is currently averaging about 3 seizures per night and will also exhibit epileptic activity during the day. The difference between the two is that at night she does seizures that break out completely: heavy trembling, muscles tensed, eyes turned away, saliva or blood coming from the mouth, losing consciousness and this for about 10 minutes. During the day it is then "quieter," where the left arm will jerk and she may have to sit up. After a minute this will be over and she can get on with her day. Of course, there will be tears and some shock, but after a few minutes she will be her happy self again.
What is important to know: Ella-Marie's left arm motor skills are already deteriorating tremendously. The fine motor skills in the fingers are disappearing and the arm in general is much stiffer. Because of the number of seizures she has, control of that arm is actually disappearing as well.
In other words, the medication is no longer helping and Ella-Marie is already deteriorating physically. And with that thought, we (= Ella-Marie, the parents and the doctors in Leuven and Utrecht) have now made a decision.
So what's next?
A brain surgery is scheduled for December 9. Ella-Marie has a huge abnormality in her right hemisphere. An examination in 2018 revealed that all seizures come from this abnormality. The "good" news is that the seizures are not coming from all over the abnormality, but from one point in that abnormality. And just that point is cut away.
The result? Unfortunately, no one knows for sure, we live between hope and fear.
The hope
By removing the bad part of the brain, there are no more seizures. No more need for medication, no more bad nights, no fear of having a seizure at any time of day. There will be some restriction in the left arm, though. And there too we are stuck with a very variable fact. From numb fingers (leaving you with no fine motor skills) to an arm that is completely paralyzed. To put it in doctor's terms: Should there be total failure of propriocepsis (the sensation by which you know where your body parts are), then it is difficult to perform movements nicely. Should this fail, you still have feedback through the eyes, but that is only a partial substitute. All in all, failure of sensation also always gives a form of clumsiness.
Anyway, we have to give this operation a chance and some time, because it could be that the brain is going to act a little harder at first (read: more seizures). In addition, there is a possibility that the seizures will come back "someday," if the bad part decides to send out seizures again.
So if we may express our hope: No seizures at least until after puberty and as little arm failure as possible!
The fear
It may also be that the surgery doesn't help. That the piece of brain we take away is not enough or just activates the big part. This could result in other/uncontrollable seizures and we have to make the difficult decision to remove the large part. Then we are off for at least several years to rehabilitate as much as possible. Again, some "good" news, we are sure that there will be no more epilepsy then. The bad news is that her left side will be paralyzed. After a lot of effort, Ella-Marie will be able to walk again (with a trailing leg), but the left arm will no longer be of much use.