This post will cover several topics, but we have one big piece of news to start us off. You read that title right. We're done with ACTH. That means...NO MORE INJECTIONS!!! Relief. We knew starting off that we would have to do the ACTH injections for 4-6 weeks, and we're done at 4 weeks!
We had a good Neurology appointment for Ryan today. We did the typical 45 minute sleeping EEG and then Dr. Hunnicutt wanted to keep him on the EEG for 30 minutes while he was awake. She just wanted to make sure she didn't see any suspicious activity awake or sleeping. After the EEG was done, we met with her and she said that it looked good. We're still spasm-free even while decreasing our ACTH doses each week. She feels comfortable with the progression and thinks he doesn't need it anymore now that the spasms have stopped. So we're done with it. Yay! She wants us to keep our extra medicine that we didn't use, just in case, but she doesn't foresee us having to use it. We will start to increase our Topamax dose and the Topamax will be a maintenance medicine that he'll have to stay on for a while. It's a "sprinkle" medicine, so I open the capsule and dump it on a spoon with some fruit and feed it to him before bed. Starting tomorrow I will give him 1 capsule in the morning and 1 capsule before bed. We will have another EEG next Wednesday to make sure everything still looks good without any ACTH and if it does, we can start spacing our appointments instead of going each week. Whew!
I got several questions answered today as well. I've been doing some online research about IS and the prognosis and just haven't been able to wrap my head around everything. Basically, the best outcome occurs when the IS is considered cryptogenic, meaning there is no known cause for why the baby is having spasms. Unfortunately, that is not the case for Ryan. We know his is not cryptogenic because he's had abnormal MRIs, so we know that there is something that is not developing correctly in his brain. Since it's not cryptogenic, Dr. Hunnicutt calls it symptomatic. Babies with symptomatic IS typically will be more on the moderate to severe side of the spectrum (vs mild). I wanted to get Dr. Hunnicutt's opinion about Ryan's future since there are no sure bets here in this situation. She said she doesn't think he'll be able to walk or do big things like that at the same time as his brothers, which we knew and expected, but it was nice to hear that she thought he might be able to walk! She was encouraged with how quickly and how well he did with the ACTH and how alert, focused and lively he was today. She said today was the best she'd seen him look ever.
There's a strong connection between IS and something called
Lennox-Gastaut Syndrome. I asked Dr. Hunnicutt if she thinks he might develop it, based on what she knows and has seen about him, and she said she just doesn't know right now. She wants to stay optimistic. It's not really anything we need to worry about at this point, but just to keep in the back of our minds and be aware and mindful about it.
We haven't gotten the genetic testing back yet but we're hoping that those tests will provide some clues as to what is going on and why he's having these symptoms.
In addition to our Neurology updates, Ryan has been coughing this week. I was worried and don't want to take anything too lightly. He sounded a little congested and I could also hear some wheezing. We went to the pediatrician yesterday and had to get a nebulizer and do some breathing treatments for him. He sounded better to the doctor at our follow up pediatrician appointment this morning so we just have to do a few more breathing treatments this week and we'll be done with that, too.
Our little Stokes is having a rough week. He spiked a fever yesterday and was fussy and sleepy all day. I had a pediatrician appointment scheduled for him yesterday (in addition to Ryan's appointment but at a different time...ugh!) but after talking to a nurse I cancelled it. I kept getting the feeling that it was due to teething and voila! We have a new tooth that came through this morning. He's been fussy again today but luckily does not have a fever.
Another update is that I'm experiencing a nagging urge that I need to change our schedule. I'm VERY hesitant because the schedule we have is working, but they're getting older and I know we can't stay on the same schedule forever. I feel like I need to drop a bottle and add another solid feeding. I also think I need to incorporate a morning and an afternoon nap, instead of 1 long nap in the middle of the day. My head was spinning trying to think about 4 bottles, 3 solid feedings, 2 naps and navigating the complex world of many, many appointments. How can I possibly fit everything in???? We have the following standing weekly appointments: Tuesday - early intervention for all 3 at home (currently on Thursday but moving to Tuesday in June), Wednesday - Neurology/EEG for Ryan at the neuro office (hopefully becoming less frequent soon), Thursday - OT for Ryan at home (beginning in June) and Friday - PT for Ryan at home. All the appointments are at different times so they conflict with feedings and naps. At least most of them are at home so I can feed one or two of them while the other is doing their work. Needless to say, I was feeling overwhelmed with the thought of adjusting the schedule. I know it probably sounds ridiculous to be nervous about changing something stupid like a schedule, but it's a scary thought for me right now. I know I'll look back in a couple of years and think, "why was I so uptight and weird about the schedule?!?!" and I realize that, but for right now it's tough on me.
With Ryan's coughing, Stokes' fever and fussiness, our regular appointments with a few "sick" pediatrician appointments added in and the looming schedule change, I was reeling. I don't think the word "overwhelmed" could accurately cover what I was feeling. I had several breakdowns yesterday, complete with tears, and just couldn't get it together. It was a bad day. I had my friend Beth over helping me with the babies yesterday...thank God for her!...and she was able to watch Stokes and William so I could take Ryan to the pediatrician. She had a calming effect on me and we both called her sister, Corey, with my concerns and worries. What do you know?!?! Corey listened to me freak out, got my appointment information and my intentions for the new schedule, called a few other mama friends of hers and got back to me with a complete new schedule within a matter of hours. She's awesome. I plan to implement the new schedule sometime next week when everything (i.e. ME) has calmed down a little.
Yesterday was pretty rough so it made today a little bit sweeter. Today was a better day due to Ryan's good report at the pediatrician and some positive information at the Neurologist. I feel calmer about our schedule, now that I have something to work with, and it doesn't feel like it's hanging over my head as much anymore. Stokes was still fussy today, but no fever, Ryan's coughing less and sounds better and sweet William is just hanging in there being a good baby!
That's all for now! Stay tuned for feedback on the new schedule and Ryan's EEG results next week after not having any ACTH.
