Infantile Spasms

The months following our Primary’s stay were busy.  First, we met Bryce’s new neurologist. I can’t even begin to describe how AMAZING he is! He fits our family so well and we trust him completely. We are so grateful that we found him.

The second thing to happen was that we decided it was okay if Bryce wasn’t 100% seizure free. We had increased his Keppra twice, but breakthrough seizures were inevitable. It was a hard position to accept (watching my son have seizures and knowing there is NOTHING I can do to take them away is hard on this momma), but after failing to become seizure free with two medications and a bunch of increases we realized that controlling them completely wasn’t likely to happen.

Then, I went back to work. We decided I should return after eight weeks of maternity leave. With everything going on we felt it would be best if I saved some of my FMLA time, just in case. I’m not going to lie, it was extremely difficult for me to do. I was still trying to process everything (my emotions were everywhere) and my heart just wasn’t in it. One piece of mind I did have was knowing that Bryce would be with his daddy (and let me just say what a WONDERFUL daddy Justin is). At the time I didn’t realize it, but looking back I can see what a blessing going back to work was for us.

Shortly after returning to work I made the extremely difficult decision to stop breastfeeding and pump exclusively. Every time I tried breastfeeding, it was like I had to reteach Bryce how to do it. Finally, after one very emotional day for both of us I knew it was time to stick with a bottle (I don’t want to go into too much detail, there will be a post on this in the future).

Finally, about a week before Bryce’s neurology appointment, he started doing this:

We had NO IDEA what was going on, but we knew it wasn’t good. Justin started describing this as “The Intense Hiccups”. When we showed the video to Bryce’s neurologist, he wasn’t surprised. Bryce had an EEG a few weeks prior and a certain pattern, called hypsarrhythmia, showed up which indicated that he was having Infantile Spasms. His doctor then explained to us how devastating spasms can be. Once they begin, the infant usually starts to regress. This was true for Bryce. He used to bring his hands to his face and stick his fingers in his mouth. However, he stopped doing that when the spasms began (even now, he can’t bring his hands to his face).

It was very important that we start treatment for the spasms. The doctor felt the best treatment option for Bryce would be a steroid, Prednisone. We were nervous to start the steroid, the potential side effects were terrifying. As long as Bryce tolerated the treatment okay, he would only be on the steroid for a month, and then we could start weaning him off. Our doctor told us his spasms should be completely gone in three days and if they weren’t we would need to increase the steroid.

Before Prednisone

Once we started Prednisone, it immediately had the opposite effect. In fact, it seemed to make his spasms 100 times WORSE! They became stronger, longer (usually 15 minutes) and more frequent (at least 6 times a day). Bryce would just cry through them, letting out a loud wail with each spasm (and he had one every couple of seconds). I wanted nothing more than to take his spasms (well, all his seizures) away. I felt so helpless knowing there was NOTHING I could do to stop them (I would gladly have his seizures for him if I could). Because his spasms hadn’t stopped after three days, it was time to increase his steroid. Again, it only seemed to make his spasms worse (if you can fathom that).

Other side effects started happening too. He was INCREDIBLY IRRITABLE. Everything we did upset him! We could kiss his cheek, give him a bottle, take away the bottle or even look at him and he would get ticked off. Nights became miserable! He would cry for hours on end (just like he did before we figured out he was having seizures). Most nights we were lucky if we got two hours of sleep. 

After Prednisone

He also got the munchies something fierce! All he wanted to do was eat (it was exciting seeing him finally want to eat). He started eating between 12 and 17 ounces PER FEEDING (and we fed him every three hours)! He ended up eating his way through my ENTIRE MILK SUPPLY (I began pumping shortly after we had him, so I had a large stock of milk)! We had to start limiting him to eight ounces per feeding, then we’d attempt to give him other things to suck on hoping they would help keep him calm. Nope, didn’t work. He was only happy when eating. Needless to say, he gained A TON of weight. In three weeks he went from wearing 0-3 month sized clothing to 6-9 month.

Not all the weight he gained was fat though. Another side effect of the Prednisone was that he retained water. He was so swollen, especially his face! His cheeks were SO BIG, I thought he would EXPLODE if anything poked them.

Look at those cheeks!

The most terrifying side effect Bryce had from the Prednisone was a very high blood pressure, and I mean SCARY HIGH! We had to take him in twice a week to get it checked. After being on the steroid for two weeks, his blood pressure was way too high to continue. So we started weaning him off, which took about a month to do. Once he was completely off Prednisone, ALL HIS SEIZURES STOPPED! Although the steroid was horrible to use, we were ecstatic with the results!

However, Bryce’s freedom from seizures was short lived. After about a month, he started having absence seizures and infantile spasms again. Luckily, these were the only types of seizures he had for a while! After six months, Bryce’s convulsions returned, and he began having tonic seizures as well. Although all his seizures returned, and a new type began, we were still very grateful Bryce was able to have a short break from them.