The past few days have been tough. Accepting the reality that there is something "wrong" with my child, has been tough. Talking about it has been tough. Hearing results of tests and it equaling more tests, has been tough. Having a planned and much needed vacation to see my family and have that ripped away is tough. This past year has been filled with so many joyful emotions of bringing Riley into this world, watching him grow, smile and laugh. It’s also been filled with many emotions of struggle, frustration of not having specific answers about why he’s struggling, stress about how he’s behind, fear of how his IS is directly affecting him cognitively, the wonder of bills, and now rather than me returning to work pretty much as soon as possible, having that put on the back burner to be with him as he changes medication.
I've decided I HATE walking into his neurologist’s office and waiting in one of the examination rooms for him to come in, because it is pretty much always news I don't want to hear. Results from the VEEG are good, just not good enough. The medication (Sabril) that he's been on the past 6 weeks or so, has substantially lessened his spasms (seizures), but not stopped them completely. So his EEG was significantly better, but he still had several noticeable spasms and other activity. Since we just can't sit at the top dosage of Sabril with it not completely stopping his spasms, it's on to plan B. We will be weaning him off that and will be starting, on Monday, a hormone injection, ACTH (similar to prednisone but specifically for kids with IS). We tried Sabril first because it is oral, cheaper and less bigger side effects. Since it's not doing the trick, on to injections, where we will have to bring him in every day to have until we learn to give them from home, bigger cost and bigger possible side effects. Those side affects being, weight gain (will increase his appetite), irritability (can range, hopefully he won't be on the extreme end), high blood pressure (will have to be monitored regularly by his pediatrician), and a suppressed immune system, among other things.
The suppressed immune system is by far one of the biggest downfalls to this medication. We have to be EXTREMELY careful while he's on this drug, and hope it does the trick as soon as possible. Means our NC trip in four weeks is cancelled, as we can't be in a tiny space with him 38,000ft in the air with god knows how many sick people. Means the thought of me going back to full time work soon and putting him in day care is now on hold (so we have to figure shit out financially). Means anyone who comes in contact with him, we have to be super careful they aren't sick themselves or been around anyone who has (or had) diseases like chicken pox, measles, etc. His body can still try and fight some viral stuff the common cold and flu, it will just be harder. Viral stuff like the above and bacterial stuff is much harder and he will be prone to, which we don't want on top of everything else. As you can imagine the amount of people that we have coming to his 1st birthday in a few weeks, we still want to celebrate and not let all this ruin it, but have to be very careful.
So, between not knowing the actual source of his IS (which thankfully is still just IS, and not another form of seizures), and not having more definitive answers on his muscle problems, we have soon upcoming further testing....yay? His neurologist wants to do within the next week or two (so before his bday), an MRI, more blood work, and a spinal tap. All of which could help give us more answers for either or both. We’re pushing to have all done at Children’s, which they are still working on scheduling, so we’re looking at sometime the week leading up to his birthday probably. There are so many different things he's looking into; he'd scare the crap out of us going through each individual thing. And as we get into the ACTH injections, eventually he will have another 24hr EEG to see how that's affecting him, like he just had with the Sabril.
As you can bet we are still super overwhelmed and stressed, trying our hardest to take this one day at a time and not look too much into the future freaking out. This smiley happy little boy is our world and that means his health comes first and life later. We are greatly looking forward to celebrating his birthday here in a few weeks, taking the break from all of this to enjoy time with family and friends.
No comments:
Post a Comment