MRI

I guess getting an appointment for an MRI is nothing like getting an appointment to see the neurologist. The neurologist has a 5 month waiting list! The MRI took only 2 days. So, John had his MRI on Friday. I guess it all went OK, but giving your kid general anesthesia is always tough for some reason. He screamed like never before when they had to put the stuff in his nose. But, everything else went smoothly. We were worried about doing the MRI with his VNS, since there are lots of things that can go wrong if done incorrectly. It made me more worried when they left a message telling us how they knew John was on the keto diet and they were prepared for that. Huh? John has been on the keto diet for over a year. They didn't even mention the VNS, so I called to make sure they had everything straight. They did, thankfully. She even read the MRI "order" to me, as I knew what settings were OK. Still, I brought the FDA warning letter and the VNS physician manual with me to make sure they had it right. It was all unnecessary of course - they knew what they were doing.
The MRI only took 45 minutes, and John was already up when we went back to his room. He had to get an IV just to get him hydrated, then he proved that he could eat and drink so we were allowed to go home. John took a long nap, as is usual after general anesthesia. After waking up, he couldn't stand for awhile and he didn't understand why. He kept trying to get up, but couldn't put any weight on his legs. He regained his strength pretty quickly, but didn't have very good balance for the remainder of the day. It was quite a chore to keep him safe.
I already got the results of his MRI - normal. I think that is good news, though in some ways it would be nice to see something that would give us a clue as to what is going on. Here was the report:

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The myelination pattern is normal. There is good gray white matter differentiation. No intra-axial or extra-axial fluid collections are present. There is no evidence of cortical dysplasia, or migrational abnormality and the medial temporal lobes are symmetric without abnormal signal. There is no mass effect or midline shift. The ventricals are normal size.
Impression: Unremarkable MRI of the brain.
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Today marks 2 weeks that John has been at 480mg of Felbatol. So, we're waiting for the OK to increase his dose again. He can go up to about 675mg day. Since it doesn't appear to be doing anything at this level, I don't really expect it to suddenly start working at a higher level, but you never know.

EEG results

I received the EEG results on Tuesday. We knew the EEG was bad, but we were really hoping the background activity was improved or there was a chance of a focal point or something. Unfortunately, the EEG was very bad again. The report had some inaccuracies in it. For example it talked about his seizure types as "drop attacks" and "generalized shaking spells". I wouldn't describe his seizures like that at all. He hasn't had a drop attack in over a year. I'm not sure where they came up with that, as that is not how we described his seizures. It also talks about what was happening as he was getting drowsy. Since he was asleep when the recording started, I don't know what they are talking about here. Surely he was already asleep during the period that the EEG states "he was getting drowsy". There was a camera on him the whole time, so I'm not sure where they came up with this either.
The final "impression" was:
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Abnormal EEG due to:
1. Diffuse slowing and disorganization of the background.
2. Multifocal spikes and sharp waves.
3. Bursts of irregularly generalized spike and poly spike, and slow-wave discharge with a 1.5 to 2 Hz frequency occurring primarily during sleep.

Clinical Co-relation: These findings suggest moderate to severe bihemispheric dysfunction with a lowered seizure threshold. These findings would be consistent with a multiple or potentially irregularly generalized mechanism of onset for the patient's seizure disorder. The slow-spike wave activity is suggestive of Lennox-Gastaut syndrome, and clinical co-relation is recommended.
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The last sentence was the killer for me. Lennox-Gastaut is really the last thing we wanted to hear. We want to believe he will get better, instead of a slow decline as is usual with LGS.
That being said, this is based on the EEG alone, and I don't think anyone who has seen John over the last 2 years would say he is getting worse. He is definitely better than he was and he is improving. He doesn't have tonic seizures, which are almost always a part of LGS. And, physically, he seems almost fine. Maybe it's just wishful thinking on our part, but I'm still not convinced that John has LGS.

In a lot of ways, I wish we wouldn't have done this EEG. It has scared us, and it doesn't change anything as far as his treatment. They want him to get an MRI, and I know he should since he hasn't had one in over 2 years. But, I haven't made the appt. yet. I hate making him go through that again (general anethesia, etc.) if it won't change anything.

EEG

John had another EEG the other day. This one was a sleep deprived EEG, which means John could only sleep from 11:30pm to 4:30am. Yoshie took the night shift and kept him up until 11:30 by playing outside well after dark. I woke John up at 4:30 and we played all sorts of games to keep him awake. The hardest part was the car ride to the hospital, as he normally would fall asleep in this situation. Once we got in the EEG room, we had to wrap John up so that he couldn't grab the wires. Of course he cried the whole time that the wires were being stuck on his head. We were also incorrectly told that he couldn't eat or drink anything after 7am. I'm sure that added to his frustration.

John actually ended up crying himself to sleep before the test even started which was good. We watched his sleep EEG and it was obvious to everyone that it wasn't good. He was having discharges every 5-15 seconds. We watched for a long time and never did see a 20 second span without a discharge. The discharges were about 1 second long, and we couldn't see any movement in John that correlated to the discharges. It's quite obvious why John has his developmental delays. It's sort of miraculous that he does as well as he does.
We woke him up, and of course he didn't like being all wrapped up so he cried and tried to escape. At this point, I couldn't tell what was happening with the EEG as it just looked all over the place due to his moving. We'll have to wait for the report on that.

We increased John's Felbatol to 3mg/day about a week ago. So far we haven't seen any noticeable change in him at all - either good or bad. I guess we'll have to increase again next week.

Another try with Felbatol

Last time we tried Felbatol, John vomited after most of the doses. So, he was only on it for about 3 weeks total and we never gave it a fair trial. At that time, John was also on the keto diet so we were forced to use the pills. We're going to give it another shot, this time with the liquid, and with a slower titration.
We started it last Tuesday evening. So far, he is taking just .5ml 3 times a day (187mg/day). So far we haven't really seen anything - good or bad. The changes are subtle, so we're not sure of anything, but we think he might be slightly more hyper (just what we need. :) ) Also, his head drops might have slightly decreased in number, but we have seen him have a little longer shaking seizures each of the last couple of mornings. So, we'll just continue onward until we see improvement or side-effects. The next increase is scheduled for tomorrow.