next steps...

Oliver's seizures are increasing. We are holding our breath waiting to see if they will settle back down or if we will have to make a change to his diet or med plan. We finished the Vigabatrin on 4/28 and since then he has had 5 clusters of spasms, numerous random spasms and jerks at night while sleeping, staring spells before going to bed and some convulsing/shaking for 30 seconds or so randomly throughout the day. Aside from the big clusters of spasms, we're not sure if any of the other things are seizures or not but we're assuming they are.

Oliver did so great during his med wean but that last dosage drop seems to have really thrown him for a loop. I don't know if it is his brain protesting the last bit of the drug that we took away or something else. We have our next neuro appt June 15th and will be doing an overnight EEG just before that on June 7th. We will then plan our next step in the fight against seizures.

I got to a comfortable place. I was ok with his 3 clusters per month, happy to be taking steps toward more therapy and feeling confident in everything we could do to make him as happy and comfortable as possible.

Today I feel angry, frustrated and defeated. I feel bitter that I spent the weekend photographing and listing all of the baby gear and toddler gear for sale. Items that Oliver should have used like his exersaucer, bumbo seat and baby carrier that couldn't be used because he lacks head control. Tobin's old push car with a handle that we used to take him out for walks with. Oliver was supposed to be riding around in that this summer. He was also supposed to get Tobin's tricycle now that Tobin has outgrown it. All of those items were sitting in storage, taunting me every time I passed by them. I know it's healthier for me to get them out of the house (and maybe make a few bucks towards Oliver's savings account) but I can't help but think of the life that we imagined we'd live. Instead, we received a parking placard for our rearview mirror, to allow us to park in the handicapped spots when Oliver is in the car with us. It's official, the State of Illinois has granted our son "disabled" status. While the placard will certainly make it easier for us to get him out of the car and into his stroller or wheelchair, it is a concrete reminder that Oliver really isn't developing at all on the physical side. He's over 19 months old now and still can't hold his head up, sit, or roll over. Increased seizures on top of that are just not what we need right now.

We have a few options at this point. We can give his brain more time off the drug to see if it will settle down in the coming weeks, we can go back up to the small nightly dose of Sabril we were on before we lost control or we can increase his diet ratio. There are drawbacks to all of these options and I'm not sure which choice will be the right choice.

Once again I find myself angry that no one has answers for us, not even the experts. Epilepsy is totally unlike any other disorder because the brain is such a mystery. There isn't one solution for every situation. there are dozens, maybe hundreds of options/med combos/diet tweaks etc. It is mentally draining spending your whole day going through every little thing your son has eaten, drank, the time he ate or drank, what time of day he had his supplements, etc etc etc. I am tired. I am over it. There is still a long road ahead of us and some days I just don't have the strength to keep going. It's a lot of pressure as a parent to try and be your child's doctor, nurse, therapist, cheerleader, chef, teacher...when all you want most is to just be his mom.

Keto Appt

We had our 3 month keto appt yesterday. No changes to the diet for right now. Oliver had blood taken (he was not a fan of the process) and we'll know in about a week if he has any levels that are too high or low or of concern. He also received another vaccination and we've been told after his chicken pox vaccine in a month he'll be caught up on all the big stuff (pheww!). He slept through that shot, how nice!

Not much else going on, knock on wood but we're fairly stable with the same level of seizure activity, development, etc. Just trying to live life and enjoy some of the increased sunshine of late. It's wonderful!

May!

We made it through the month of April with only 3 clusters of seizures to record...but we were very nervous we wouldn't be able to do so. Oliver's last cluster was the 19th of April and we thought his clusters were getting closer together again. On 4/25 we saw single spasms throughout the morning so I gave him his first bit of Clonazepam in over 3 months. Just a 1/4 of a pill to see if I could head off any impending cluster. It seemed to work because Oliver did not have any clusters that day or during the rest of April!

He has , however, started May out with a bang. I woke up last night at 1am and I could hear Oliver yelling during intervals up in his bedroom. I finally came out of my sleepy fog enough to realize he was having spasms and woke Jason up to see if he though it sounded like a seizure. I don't know how long he'd been seizing and I feel awful that I may have left him up there seizing for more than a few minutes. The spasms were mild and not as close together when we brought him downstairs so I can only assume he had already been seizing for a good 5-10 minutes. We were nervous it had been going on for awhile so we gave him half a Clonazepam to settle him down and he eventually did , and was able to go right back to sleep immediately. He slept in our bed all night, because we were both so nervous about not hearing him. Luckily, Tobin didn't make his usual trip down to our bed!

I keep hoping this current bit of seizure activity is related to the end of the Vigabatrin wean and that Oliver will settle down in time and continue to see great seizure control in the coming months.

He's had a very rough weekend, lots of fussiness and crying (hopefully wean related) so we are all a bit tired today. The diet continues to be going well and we're even getting a lot of his therapies in now that he's more awake during the day.