I know that sounds bad coming from us, but today's appointment with Hunter's doctor after we left that is just the way that we felt. We started off the appointment talking about Hunter's seizures and how he has been having more & more and it just seems that the new med has not been doing the job on controlling them along with all the other meds. In the midst of all of us talking Hunter fell fast asleep, then we went onto some other options to control his seizures.
(Here's the list)
1.Go up on the Febotal (new med) again.
2.Surgery to put a med into his body that calms the nerves (to be totally honest can't remember the name because all I heard was "surgery" and it made me freak out! Because of what happened the last time he had surgery. Well the odds on this working for him are not very good & it could take up to a year or more for us to see any results from it "if any"!
3.Keto diet - that we have already decided not to do because all the risk with it & from what we have heard from other families & some other good sources of ours.
4.More meds! His doctor also said that the more meds we add the lesser his chances of seizure control.
So can I say we are feeling a little hopeless on getting his seizure fully under control.
Okay so you know how we told you that Hunter fell fast asleep while we were all talking about are limited options on seizure control. The doctor wanted to take a peek at him & and make sure that everything else on the little guy looked good. Well....Hunter woke straight into a pretty rough seizure in front of her and it went on for a good 3 - 3 1/2 minutes and we ended up having to give him his ER drug (doctors orders) because she explained to us that what he was having was a cluster of seizures it started with his lock up type then onto mouth the movements then into him throwing himself forward better known as infantile spasms. We are glad that he had the seizure in front of her so she could explain that this was not just one seizure but this was multiple.
We also had no new news on all the research that they have been doing but she said that she was going to contact them this week to see if they have anything more to tell us.
All we can do now is love him and do all that we can for him to make sure that he is comfortable and happy! No matter what he is the best thing that has ever happened to us and he is such a blessing we are also still very blessed to have him still here with us.