Second EEG

Rayleigh had her second EEG Tuesday, October 12, 2010. She is 6 months old. The goal was to see if the brain activity has changed when not seizing and if she does seize during the test, where it is coming from.

Rayleigh finishing her EEG

We go to a small, cool, dim room with a bed and one chair. I lay on the bed with Rayleigh while Michael sits in the chair next to us. We quickly soothe Rayleigh to sleep and the EEG technician comes in and begins sticking the receptors to Rayleigh's head. She has a note that she needs to do it quickly because the patient (Rayleigh) seizes within the first 20 minutes of sleep.

We were conflicted. We absolutely do not ever want Rayleigh to have a seizure. But if she was going to that day, during the test would be the time to do it so Dr. Coleman could get a better idea of what is going on.

She had a seizure during the test.

Rayleigh slept for the first part of the test, woke up about 10 minutes into the test and had a 37 second seizure. Stayed awake for a little bit after and then went back to sleep. Once she was back asleep the technician came back in and did the strobe light section of the EEG. Rayleigh did not react to the strobe light at all.

The technician said that the test went very well, got all the information they needed from her asleep, seizure and awake sections. After the EEG we went over to Dr. Coleman's office so he could go over the results with us.

Dr. Coleman said that she is not having focal seizures. Focal seizures is when the brain activity is abnormal on one side of the brain. He thought maybe that is why she used to always turn her head and eyes to the right when she had a seizure, something she no longer does on medicine. He said that the seizure activity happened on both sides in the frontal lobes of her brain.

She is now having Tonic seizures as he explained. Before getting on anti-convulsant medicines she was having tonic-clonic generalized seizures. The Tonic part of a seizure is the initial muscle lock up and tense. Clonic is the twitching or jerking of the tensed muscles.

Dr. Coleman told us that tonic seizures are generally harder to control with anti-convulsant medicine. Tonic seizures can still be grown out of but it is not as likely as the tonic-clonic seizure. Dr. Coleman said that the harder the seizures are to control, the less likely they will grow out of them. This was a huge hit to Michael and I.

New course of action is to try a combination of medicines. Her Phenobarbital + Keppra. Yes, we are going back to Keppra to see if maybe it will work when combined with the current prescription. She is taking Keppra twice a day, 1.4ml each time and then 14ml of Phenobarbital at night. If this combination works we will slowly start weaning the Phenobarbital back so that she is at a lower dose of it along with the Keppra. Keppra is much more concentrated than Phenobarb so you don't take as much of it.

We are supposed to give this combination a couple weeks to see results. So far, it worked well for the first couple days. She went from 2 seizures a day to 1 a day. Yesterday she had 2 seizures though. Today, she has taken 2 naps and has not yet had a seizure with either one. This is a good sign, but can't get too hopeful yet.

If we don't start seeing results in a couple weeks we will either see a metabolic specialist to try and find an underlying cause that can be treated OR we'll see a nutritionist about the Ketogenic Diet.

Right now, worse case scenario is that she continues to have a couple seizures a day, with the medicine controlling all but those couple, for the rest of her life. But we can't think about that now, we still have a lot of options to go through before we get to worse-case scenarios.

And So It Continues

Three weeks ago Rayleigh had a major breakthrough from her Phenobarbital medicine and began having seizures again. They started gradually, 1 seizure every 2 days or so and then got to where we are now at 2 a day.

The seizure will generally happen about 15-20 minutes into sleep. She usually has one for naptime and one at bedtime. Today was weird, she had one when waking up in the morning at 7:30a. She did not have one during naptime today but then had one when she went to bed at 9:30p.

A couple weeks ago on Saturday, Oct 2, we did as Dr. Coleman prescribed and started giving Rayleigh 12ml of Phenobarbital a day. We were to do 6ml morning and night. Each time you change the dose of Phenobarb you have to give it 5-7 days to take effect because it has a long half-life. After 5 days there was absolutely no change. We expected to at least see them slow down if not go away on this dose.

We called Dr. Coleman and spoke with him on the phone for quite a little while. He is ordering a new EEG to see if her brain activity has changed. If so, this will give him more information on the direction we should go in. The EEG is tomorrow.

Also, he had us up her dose to 14ml (7ml twice a day). This seems like a lot to us. We took Rayleigh to get her blood drawn today so Dr. Coleman can check the Phenobarb levels to make sure they are still within the normal 20-40 range.

Dr. Coleman had a couple of points of information that were a bit unsettling:

1.) The harder the seizures are to control, the more likely we are dealing with a longer prognosis of her having seizures.

2.) He has had patients where the best you can do with medicine will still have them having a few seizures a day. It sometimes comes to the point where the parents have to make the decision to either give her a higher dose of medicine than normal range and risk developmental side effects OR keep the dose normal and prevent most of the seizures but not all.

We had to stop by Dr. Coleman's office today to pick up the paper order for her bloodwork to take to the lab. While in there, Dr. Coleman talked to Michael quickly and said that even though she's still having a couple seizures a day and today is day 5 on this new dose he doesn't want to make any changes on her medicine until after the EEG and then he asked us to come to his office right after her EEG because he will immediately have the results and he'd like to go ahead and squeeze us in so we can go over them as quickly as possible.

We know that she's not conscious when she's seizing. For her it's like sleeping and waking up feeling weird, but it is so upsetting to watch this happen to your child and know that there isn't anything more you can do for them. Sometimes we think it scares her and then she's afraid to go back to sleep which is heartbreaking.

We always tell her, "I promise we are working with the doctor to get rid of these!" And we are. We just love her so much and hate that she's going through this. No child deserves this.

Epilepsy brings out a lot of emotions and very little answers.

The Search for Information

Today started off on a bad note as does this post. Michael woke up feeling under the weather so he went to sleep in the other room so he wouldn't get Bug or I sick. Then when we woke Bug up to get ready for her doctor appointment with Dr. Coleman she had a seizure. Doesn't get much worse.

If you don't already know, our pediatric neurologist is Dr. Coleman, his office is located in the Baptist Medical Building in OKC.

Dr. Coleman said that since she is continuing to have seizures but responding to the Phenobarbital he would like to up her dose to 12ml. He wants us to give her 6ml twice daily rather than the full 12ml at night. So tonight we will give her 12ml to make up for the missing lapse that we'll encounter when switching to 6ml twice a day.

We got an explanation for why she had such a major breakthrough while on Phenobarb if he believes this medicine is the right one for her. He said that Phenobarb is an anti-convulsant medication that goes in to fix the root of the problem, often after a patient has been taking it routinely for a long period of time the body may recognize the Phenobarb as a threat and in a sense, attack itself to compensate for the work the Phenobarb has been doing.

He did his routine check of hearing, tracking and visual interest and she passed all with flying colors! We'll see SoonerCare next week to do a developmental assessment on her. Phenobarb has a nasty side effect of slowing brain development and we have noticed it in a few things like reaching and playing with her mirror image.

Dr. Coleman put in the order for her to get a second EEG done in the next couple of weeks. It is normal for a pediatric neurologist to get multiple EEGs because their brains can change, their seizures can change and the brain activity when not in a seizure can change. Rayleigh's last EEG was completely normal which means that her brain acts as any other infant's does when not having a seizure. As much as we do not want our baby to seize, if she does have a seizure during the EEG it helps Dr. Coleman determine what kind of seizure along with where in the brain it is happening.

He also had us go over to the lab and get some blood drawn to do DNA and chromosomal tests to possibly find a reason for her seizures. We'll get the results on the chromosomal analysis within the next couple of weeks and the DNA test will take longer.

The statistics say that 2 out of 3 children with epilepsy outgrow them in their adolescence, Dr. Coleman believes that Rayleigh is still within that statistic because all of her tests are coming back normal and she is responding well to the Phenobarb even with the need to up the dose.

At this point, all we can do is get those seizures under control and do the tests Dr. Coleman wants done to get more answers. Frankly, we hope these DNA and chromosomal analysis come back normal and don't show anything about why she's having seizures so that we're still dealing with something benign.