Friday Update

Oliver is a bit under the weather, doesn't have much of an appetite and has been having some vomiting and diarrhea. We are trying to keep him hydrated as much as possible and hoping this passes soon. He had another seizure today, so that makes 5 for the month and while they are less intense I am a bit sad that he's had 5 in 17 days and worried December will close out with more seizures than November. I had resolved to believe that we would never get seizure free but I was hoping that each month would be about the same or better...it's hard when we feel like we're taking steps backwards.

Hopefully as the month continues on he will feel better and the seizures will come less frequently. It could also be because we're weaning his Clonazepam but I don't know how much that drug is actually doing for him. Going to keep weaning it anyway and see if he settles down eventually.

It's been nearly 10 months that we've been battling seizures, hypsarrthmia and developmental delays. Some days I wonder if this is just always going to be how it is. I can't believe he has had this chaotic pattern in his brain for 10 months, if not more. that's a lot of time to lose in terms of development...and that's only the epilepsy side. We have no idea how much of this is from the CDG and one of my biggest fears is that the CDG is causing so many of his delays and they'll remain even if we do get rid of the hypsarrthmia. The uncertainty is a bit paralyzing and when I stop to think about the very real possibility that his brain will never get a break it makes me so sad for his future.

I keep thinking so many kids push through this and come out on the other side and start making progress...and I keep waiting for it to happen in our house.

Tobin has his big Christmas show tonight. Oliver's class is doing a song as well, but since Oliver cannot hold or shake the jingle bells and is a bit under the weather he will not be participating. We are hoping he feels well enough to come with us to watch Tobin.

Very much looking forward to him feeling better and hoping this bug passes quickly (without involving everyone else in the house!)

Tis the Season of Weaning

We're on to the next phase of our Clonazepam wean as of Friday night. Oliver is now only taking a half a pill per day (1/4 pill am, 1/4 pill pm). 3 weeks and we drop the morning dose completely. 6 weeks and we'll be completely weaned. Then on to the Sabril. We can't wait!

Oliver is handling the decrease fairly well, which reinforces the idea that his body was used to the drug and it was no longer as effective for him. He is done with his 4th round of antibiotics since starting the diet, hurray! Even though they claim there are no carbs/starches in the pill, we always see decreased ketones and increased seizures when he's on them. Since being off the abx we have seen good ketones so we are hoping to keep him healthy for awhile.

Today he had his 4th seizure of the month, which is a bit disappointing as we are hoping to see fewer seizures as the months go by. But we're still glad they are less intense than before and generally end before the 5 minute mark which is huge for him.

Winter has hit us hard and fast this year and it's a bit of a challenge getting 3 people bundled up and warm to head out onto the icy back walk way to our frigid garage. I am very much looking forward to spring even though it's so far away!!

long time no blog

We've had a busy couple of weeks. The Clonazepam wean is going well. We will drop his evening dose to 1/4 pill on December 10th! Oliver had 2 seizures before the wean even started and 3 since the wean but overall they are shorter and less intense. We closed out the month of November with only 7 seizures (clusters of seizures). 6 of them lasted less than 5 minutes and the 7th was a whopper at 15-20 minutes. BUT, they used to last about an hour...so this is a huge improvement and possibly a sign that the diet is helping.

We increased Oliver's ratio to 3.5:1, so he receives even more fat in each meal. So far he is tolerating it well.



We believe the cause of his fussy/screaming fits is mainly GI related and gas. The GI doc said to try suppositories a few times per week to really keep him cleaned out and gas free. We are also going to be giving him prunes every other day to try and keep things "moving". We split his miralax dose into two parts and have already seen a bit of improvement. I don't think we can get rid of these fits altogether, at least not until he's off the diet and the fat content decreases but that's a long way off. We're going to try and keep him as comfortable as possible and cuddle him as much as we can when he's miserable.

Oliver has been very chatty and smiley lately and we're so thankful and grateful for that.