Daddies aren’t generally recognized much for intuition, but I believe Kaleb has improved in the last day or two on the higher dose ACTH. There was nothing two days ago that I would have declared to be clearly problematic, but there were little details in terms of how and for how long he interacted with objects that left the impression upon me that he might still be hypsarrythmic, even though he’s not having spasms.
I don’t know that anybody actually has an intuitive feel for correlating non-spasm behavior with hypsarrythmia, but if those chaotic, out-of-phase brain signals lead to interference in a manner similar to other physical phenomenon, then learning interruptions and small involuntary quirks (which previously bothered me in aggregate) could be manifestations of the hypsarrythmia.
There are things he’s still doing which concern us a little bit, like nodding his head or gently smacking himself in the mouth. But those things are all conscious actions. If we call to him or otherwise distract him, he simply stops. He maintains focus the whole time and doesn’t break eye contact (even when we move around to make sure he’s actually keeping eye contact with us). We are pretty convinced those actions are side effects of ACTH.
‘Cautiously optimistic’ is the term that every doctor who’s seen him thus far has used to describe his prognosis.
We received our insurance statement today for our first vial of ACTH and all I have to say is that Questcor is really making big bucks off of IS kids, their families, and insurance companies, especially when they were able to offer it for a couple hundred dollars per vial in the past. They don’t even have to synthetically produce it. It’s extracted from cows and pigs. Why so expensive? Now, we’re on our second vial and we will be needing a third vial next week, which means a whopping $90,000 total! That’s enough for a down payment on a house! At least our insurance covers most of it–although at this rate, I can imagine they probably wish they hadn’t offered us health insurance at all. Whereas I’m thankful for this drug for Kaleb and other IS patients, I’m upset at how much they charge for it. It’s also what makes it so inaccessible and difficult to obtain.
Charging an arm and a leg…and a car while you’re at it.
If you recall from last week, we had some concerns with our current neurologist. We really appreciate him for all that he did for us in the beginning, but he doesn’t communicate well with us or share the same sense of urgency or type of approach that we have when it comes to treatment. So God answered some prayers and moved one of our appointments from mid-October to today! We were really happy with our second opinion, although it did mean increasing the dosage a bit more. But the way this neurologist sees it: Kaleb’s prognosis actually looks better than the usual statistics would imply, and because of the hope that he sees in Kaleb, he would like to tackle it more aggressively to make sure we nip it in the bud and not risk delaying if the spasms come back again. Even then, increasing it to 40 units is still not even close to the manufacturer’s suggested dosage of 64 units for Kaleb’s size/weight. In the meantime, lots more prayers all around!
Treating IS is all about the lesser of two evils. It’s either the seizures that atrophies your brain for life or the medication that atrophies your brain for as long as you’re on it. So of course you go for the least amount of cumulative brain atrophy. You’re on ACTH for a limited time only anyway…unless your seizures come back. Then your dosage gets increased. And then all of the sudden…
Kaleb couldn’t roll over again today. Having a hard time propping his head up again. Back to square one. We pedaled as hard as we could but the hill was just too steep. But no worries. Our legs aren’t tired yet. Our faith has not wavered. We will make it, regardless of how long or how steep it gets.
Look at all the progress he had been making this past week.
Look Ma, no hands!
Kaleb was sitting all on his own!
Well, he’s still working on it…
Must. Hold. Self. Up.
He’s such a little trooper. After this, we helped him back up and he was happily trying again. Now, with the new setbacks, we’ll just keep trying once again. This is the face of faith and determination. How can we not continue to have hope?
Kaleb was scheduled to start weaning from his current dose of ACTH (20 unit/day). This morning I witnessed a two-seizure spasm episode. Unfortunately the coordinated limb motions and eye roll is absolutely unmistakable. As a result, the neurologist has increased Kaleb’s dose to 30 units/day.
The EEG results from Thursday were much improved. They weren’t clear, but there were periods of strictly normal EEG. Such periods were nowhere to be found in his prior EEG results.
We’re still hoping and praying. We had two good weeks with Kaleb, and I’m sure we’ll have many more. Most likely there will be another spasm before the new dosage takes effect.
We would like to take this time to thank everyone for their thoughts and prayers. We’re so grateful for all the emails, messages, replies on the blog, verses, words of encouragement, food, gifts, errands, help in all sorts of different ways, love, and support. Thank you also for following/checking up on the blog and sharing with others to increase awareness so other parents can learn to recognize IS signs early. Thanks to those who are working on projects for IS/seizures, thanks to those who helped us find ACTH or got us in touch with other neurologists, thanks to all the neurologists who have provided us info, and thanks to those who have wanted to visit and/or see us. We’re still in quarantine mode to protect Kaleb from any infection and we appreciate everyone’s understanding. It means so much to us to see all of you gathered around us in support and we feel so blessed to have you all in our lives during our greatest time of need. We cannot thank you all enough.
With much love, Kaleb’s Family
We got a few answers on Friday but are waiting for more and/or any course of action.
The pediatrician was really impressed with Kaleb’s progress, especially when he went from not being able to prop up to rolling over proficiently in just a few days. She saw the video and said it did not look like reflux to her, but will get the video to the neurologist. The EEG from Thursday was an improvement (not sure by how much b/c we didn’t get to talk to the neurologist) but still abnormal (hypsarrhythmic), according to the pediatrician. And we’re unsure about starting the wean on Monday. As for second opinions, there’s quite a wait so there’s not much we can do there either until the time comes.
Being a person who wants to be in control of the situation, the uncertainty (and worry) was driving me mad. Needless to say, the weekend got to a rough start…but at this point, we just have to remember to have faith, enjoy what blessings we have with these two beautiful boys, and trust that things will be okay. We’ve already overcame a lot of the odds in Kaleb’s situation and it’s important to stay encouraged by all the little battles we’ve won instead of being dragged down by the fear of battles to come. Whatever life has and may throw at us, we have to always remember that we have a mighty God who loves us very much. We’re in good hands.
Or better yet, reflux? I’m really worried now. Looking back at when my suspicions started, I realized from Kaleb’s IS log that my observations from 9/16 are now more intensified and that they’re probably some sort of seizure-type activity. Not only is he looking down, his head goes way down with it, and he smacks his lips EVERY time, until he looks up again for a couple of moments before doing it all over again. It’s too repetitive and I can’t get him to stop doing it until he somehow stops…kind of like a seizure.
We brought it up with the doctor on Monday and he wasn’t worried because I’ve admittedly been sort of jumpy about every other thing that Kaleb’s been doing, like the eye rolling. But yesterday when I noticed the lip smacking, I was almost certain that something is wrong. From my research, I believe they might be complex partial seizures. Or maybe some sort of muted IS. I called and left him a message. He called back and again, he needed a video. It’s hard to get a good video when Kaleb’s little baby body (even sitting up) is so low to the ground/bed because he’s so small and the lighting is bad because of the shadows underneath his head/chin. I had a video last Friday but it wasn’t clear enough. Today, I finally got a decent video of him doing it over and over and over again. We were just about to bring it in. I called the office, but the doctor had already left for the day. We have an appointment tomorrow morning so it doesn’t really make sense to bring it in now as he won’t get it until then anyway. But that also means another night of very little sleep.
We did get another EEG this morning. I hope that will provide additional information to prove or disprove my suspicions. Either way, I will bring the neuro a copy of the video tomorrow. I hope I’m wrong and maybe it’s just really really bad reflux? But it’s hard to shake the scary feeling that it may not be.
The blog is finally online and shared with family & friends! We’ve been working on it for the past week and we hope it will not only help update our family and friends, but to also serve as a resource and raise awareness for IS.
ACTH is supposed to mess up the circadian rhythm. But Kaleb was still STTN, so I thought it wasn’t going to phase him. But I spoke too soon.
He stopped STTN two nights ago. We saw our neuro today and he said the side effects will kick in more next week. I just hope he doesn’t get “roid rage”. So far, he’s still his happy self, which, along with B, are pretty much the only things makes me truly smile. That, and my husband, who tries to cheer me whenever he can, ie. complimenting my short hair. (Our talented friend came over to visit/bring food and chopped off my 12 inches of hair to donate to Locks of Love, but mainly so it’s easier to manage…thanks M!)
Kaleb’s Daily Medications
There are kids who dread shots at their check ups every couple months…and then there are kids who get shots everyday…
We are blessed with two beautiful, loving, happy boys, but they’re also different in many ways…especially when it comes to shots.