Drs Visits Flu Shots and Cranky Baby oh my

We had a good visit with our neuro yesterday. He said we can start weaning the clonazepam again but to wait one week since Oliver is having his flu shot booster. Want to make sure any seizures activity can be attributed to the flu shot rather than the drug wean. He did offer us the option to wean the Sabril first but then after we all talked about it more we figured we'd get him off the clonazepam now, and then we can still use it as a rescue med and then later on, while weaning Sabril , if Oliver has some rough seizure-y patches we can do a 3 days small course of clonazepam to get him over the hump. We all feel comfortable with this plan. We'll give his flu shot a week to settle in and then next Friday drop him down to a quarter pill am/ half pill pm and do that for three weeks. clonazepam is highly addictive so this last bit of the wean needs to go verrry slowly. He doesn't think we will see a huge development boost when Oliver is off all the drugs but thinks it's important to take him off of both seizure meds and see what we can do with just the diet alone. Then, if we need another med we're only adding one med to the diet instead of one med on top of two others plus the diet. Hopefully the diet will be enough, but we're realistic in understanding that it might not.

We saw our pediatrician afterwards and Oliver's ears are looking better, we just need to continue the last 5 days of the amoxicillin and then he should be good to go. We mentioned our gastric emptying/delayed and infrequent peeing issues and how they seem to be slowly improving. He agrees with our plan to take him to GI doc and then just keep an eye on it. From talking to other CDG parents it seems like cyclical vomiting/GI issues are a side effect of CDG and it's probably made worse by the high fat diet and in times of illness.

His flu shot booster went fine , he drank a bottle during the shot and jumped a bit but didn't even cry.

He had 2 of his hour long cranky episodes yesterday which was disappointing because he was doing really great the past few days. He's having another one this morning. We're never sure what the problem is so we're trying mylicon and then after 45 minutes we try tylenol. I think it might just be gas or digestive issues but it's so hard to tell. Poor little buddy.

So we're going to hope for a calm week and then try our clonazepam decrease, hopefully things will go as planned!