A recurrence

I'm behind on my posts, but wanted to let you know the latest about Ryan. It's not great news. He's having a recurrence of his infantile spasms. I saw a few alarming things over the last several weeks and talked to his therapists and neurologist. When I talked to Dr. Hunnicutt (neurologist), and explained what I was seeing, she said she felt good about the progress she saw in his last EEG in early June and it might not be anything. She said we could come in for an EEG to check it all out if I wanted to. My hesitation and concern was that the EEG has to capture the actual event or episode in order to do any good. Ryan's events that were concerning to me were very infrequent and sporadic. I felt like it would be very difficult to know when to schedule the EEG and be able to actual capture them. As time went on, however, they were becoming a little more frequent and I was finally able to get two of them on video and emailed the video to the neuro. She agreed that they looked somewhat alarming and we needed to get them on the EEG to confirm what was going on. We had a previously scheduled follow up EEG set for Wednesday, July 2, which was just a few days away from when this conversation took place.

I went to the EEG that Wednesday and Ryan slept so well. After he woke up, we kept him hooked up to the EEG to try to get the events recorded (these episodes only happen when he's awake). We had some time before they needed the EEG room for another patient and took advantage of the time we had. Unfortunately and fortunately we were able to get 2 episodes on the EEG. I say unfortunately because they were happening (not just 1 but 2!!!), but fortunately because the timing worked out to get them recorded so the Neurologist could see it and confirm what was going on. We ended up staying there for about 3 hours, which is much longer than a typical EEG would last. I'd like to thank Lisa Frampton for coming over to keep Stokes and William while Ryan and I were at the appointment. You were such a big help, Lisa!

We got a call from Dr. Hunnicutt the next day and she said that she saw the 2 events on the EEG and although they weren't a "slam dunk" to classify them as infantile spasms, they correlated with a slow wave on the EEG. Basically, it was not "nothing" and my concerns were valid. She told me to put him back on the ACTH (a steroid medication for infantile spasms) injections twice daily. You may remember that Ryan responded very well to his first round on ACTH and we were able to wean him off after 4 weeks, which is considered quick in terms of this medicine. Dr. Hunnicutt said she would try a slower wean this time and possibly use an oral steroid during the weaning process in the hopes of resetting his brain so that we don't see the spasms anymore. We also were instructed to continue the Topamax sprinkles twice daily. In addition, she wanted to do some blood work to get a metabolic panel on him.

We stated the injections that evening (Thursday, July 3) and have been following the twice daily instructions ever since and a continuation of the Topamax. I saw 2 spasms on the 4th, 1 spasm on the 5th and 1 on the 6th.  I haven't seen/noticed any more since then. We went back for a follow-up EEG yesterday, which was a week after we started the ACTH. Ryan's EEG looked good and it appears that the ACTH is once again working. Thank God for that.

We had a pretty easy go of it for our first round of ACTH, in terms of negative side effects. Although Ryan's handling it like a total champ, we are seeing more side effects this round. He isn't sleeping as well, he's hungry all the time and wants to eat so much, and is fussier and irritable more than what is typical for him, which also may tie into the fact that he's constantly hungry. I'd rather not have to deal with any side effects (duh), but you know, we're still lucky that he does as well as he does.

We've already begun to see his cheeks getting puffier and I think he's gained some weight in just the last week. I'm not able to give him a bottle of formula whenever he's hungry because he would gain an unhealthy amount of weight, so we've taken the doctor's suggestion of giving him some Pedialyte to help fill his tummy in between feedings if he acts really hungry.

On a positive spin, and you know I like to try to find the positive somewhere, Ryan does not spit up at all when he's on ACTH. It usually makes reflux worse, but it has the opposite effect on Ryan. He keeps everything down and for that, I'm thankful. I'm getting a little break from the daily projectile spit ups and constant laundry for spit up on clothes, bibs, burp cloths, boppy/nap nanny covers, high chair straps, play mats and mattress covers. Another good thing is that we really haven't seen much, if any, developmental regression. He still isn't rolling over, sitting, reaching/grasping on his own, but he's definitely made some progress and is in about the same place he was when the spasms started again. We've gotten some positive feedback from his therapists on what they're seeing from him. His head and neck control has definitely improved.

I do worry about the "zombie-like" state, for lack of a better phrase, that we saw in him last time. He isn't smiling and laughing as much as he was, but I can still get a smile and a little giggle out of him every now and then. I think that his withholding all those beautiful smiles may have something to do with his overall irritability. I do feel confident, however, that we'll see that shining, crinkly nose smile and hear that soft, shy laugh once again when he's done with the ACTH.

I probably sound like a broken record, but please, please continue to pray for Ryan...and throw in some prayers for Stokes and William as well. While you're at it, please pray for Thomas and me! We could all use them! I pray that Ryan's infantile spasms will go away for good and that God will continue to shape and develop his brain to get him on a good developmental track. That He will allow Ryan to lead a healthy, full life. And yes, I know I'm supposed to pray for him to be the perfect version of himself for whatever God has in store for him, but I admit that I pray every single day that he will be able to walk, talk, drive a car, all sorts of things like that and that he'll lead a "normal" life. I pray that He will keep Stokes and William on a good track and that they can continue to develop until they catch up to the milestones for their actual age. I ask God to help them to be supportive and loving brothers to Ryan. I pray that God will bless Thomas and me to be the very best parents to Ryan, Stokes and William that we can be and that we'll know how to take care of them to give them the best chance at health, happiness and a good life. Please join me in my prayers and add in any others you can think of. You are probably a better pray-er than I am. Thank you, family members, sweet friends and blog readers.

A sweet picture of smiley Ryan, taken Sunday, June 29

Here are some links to previous blog posts about Ryan's infantile spasms, in case you want the background or have forgotten what we were dealing with in May.
News about Ryan
Coming to terms and being optimistic
Done with ACTH