No, it is debilitating.
I know.....
because I've been there.
January was wonderful. Anthony wasn't having any spasms and he was gaining strength. He smiled ALL the time and even chuckled. He loved to be in my arms and I would dip him and he would get a thrill out of it. Early intervention services came to my house four times a week. Those women became my support system and my friends. I didn't take Anthony out so THEY were my social life and I loved it.
It's amazing what they helped him do. Anthony moved his lower extremities but his arms were weak. I would dangle toys in front of him and he would not bat for them. The PT started teasing his hand and eventually he started moving his hands on his own. It is crazy how little things like batting for toys were things that Nicholas could just do, and now they needed to be taught to Anthony.
Anthony was close to sitting up and he even rolled a couple times. At his 6month well visit the doctor was impressed with his progress. Though he was delayed, he was progressing, and that is all I'd ever want from him.
On January 22nd things changed. I was just finished taking the boys pictures. I put them in their matching outfits and set them on the chair in the nursery. It was Anthony's half birthday and he looked SO good!
Anthony took a nap and we left the room. An hour or so later I could tell he was awake and I looked at him from the doorway.
He was doing it.
Very VERY subtle, but he was flinching.
The spasms were back....
and I was crushed.
I took a video and sent it to the doctors. They were not concerned, but every movement Anthony makes from this point on will always be taken seriously she said. So, we scheduled an EEG.
At the appointment following the EEG, they said that it is not the hypsarrhythmia, it was not that nasty chaos going on. It was not a relapse.
PHEW!
I was relieved, but needed an explanation as to what it was. They said it could be reflux. Baby's make all sorts of odd movements. He hadn't been feeling well so maybe that IS what is going on.
After the appointment we went to Wegmans for lunch. As soon as we sat down I look at Anthony and there he was, flinching again. It looked more intense. He was having spasms, I knew it, but Brad reassured me that the EEG didn't detect anything.
I was frustrated.
I went home and cried, I tried so hard to be happy that it wasn't back. But I knew in my heart it was. I did some research and talked to some parents and found out that there could be a delay on the EEG. Clinically he could be showing spasms and it not show up until later.
I kept in touch with the doctors and once a week for the next two weeks Anthony had an EEG. They all came back the same. No Hypps, but still abnormal and flickers in the brain. Not a relapse.
It wasn't until February 17th when we were in for a 24 hour EEG that it was finally detected. I remember being in the room when we first got there and the neurologist came up to Anthony and started clapping in his face. Thinking it was a startle reflex.
I wanted to hurt him.
A few hours later he came back to the room with news....
"The spasms are back" he said.
"No shit, Sherlock" is what I wanted to say. I knew they were back. So I just said. "Annnnnd......"
"It's a relapse" he said.
I was crushed. Anthony would have to go back on ACTH. I would have to inject my baby again and he would go back to being uncomfortable and unhappy :(
That hospital stay was a good week. He needed another MRI (Which came back normal) and again had to cancel our trip to Florida. We were supposed to leave on February 21, so that wasn't going to happen.
I had to carry on. I had two little boys who needed me, and in turn, I really needed them. Originally, I didn't want to see any friends and limited family members. I needed time. I still need time...
And then he started the regression. Putting him on his tummy was heart breaking. If I got one smile a day, it was a good day. Overall, his spasms were not as intense as they were in November and they
decreased overtime.
On March 4th we got the news that his EEG looked better! The hypps was gone-yay! It only took two weeks this time. We also got news that he has an extremely rare epilepsy gene mutation which could be the cause of the infantile spasms (more on that another time...) When we went to CHOP on March 11, the neurologist looked at me and said
"You know more about this (gene mutation) than I do....
And then I got that helpless feeling again....
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