This past week has been hard on all of us, especially for little Piper. Last Monday (Labour day) Piper was lying in my arms and I watched as her eyes opened wide and she stared straight ahead. She wasn’t breathing. She started to turn very pink then her face turned grey. Her lips were turning blue. I started to scream and I turned her over and patted her back because I thought she was choking. My husband and son came running into the room and all I could say was “Call 911, call 911!” My husband was frozen so I grabbed the phone and called 911. I was screaming at the 911 operator that my baby wasn’t breathing. As the operator was trying to calm me down she started to breathe again. By this time my husband was holding Piper and she looked better. I told the operator to cancel the ambulance and we would be taking her to Sick Kids right away. We packed our stuff and were on our way.
When we arrived at Sick Kids they took her in right away and hooked her up to monitors. Her heart rate was jumping around, going from a low 70-80 bps to a high 170 bps. They were obviously concerned thinking that she could have been choking on stomach acid since she has known acid reflux. While we were there she stopped breathing again, about 8 doctors and nurses came rushing in. I lost it. I don’t remember much other than falling back into the chair beside the bed and crying. One of the nurses came over and was comforting me. Just as she did at home she started to breathe again but this time the medical professionals saw it. They knew it was more than her choking.
They decided to put her on a feeding tube to drain the acid from her stomach just in case. They also hooked her up to an IV and the respiratory team came in to check her breathing. I was told that she needed to be admitted.
Over the next couple of days Piper was visited by all the specialists that I’d been waiting months to see. She also had all the tests performed that she was waiting for such as her MRI, EEG and other blood tests.
Everything was normal on Piper except for her EEG. She was having spasms constantly in her brain that the neurologist said looked like infantile spasms. Infantile spasms will occur almost constantly in small children and although they aren’t harming the brain they can prevent children from learning properly. There is a specific medication that is very successful in eliminating these spasms but one side affect is that Piper could possibly get permanent tunnel vision. It was good and bad news. We also thought maybe this would help Piper with her development. My husband and I had to weigh the pros and cons of the medication and decide whether we wanted to have her on it or not. In the meantime they were going to hook her up to another EEG that was longer ( a typical EEG is 30 minute) to try and catch her having one of her episodes that brought us into the hospital.
We waited and waited and we finally caught one of the episodes overnight on the EEG. On Thursday morning the neurologist came in and spoke to us about what he saw. He said that the episodes were definitely seizures and they could be controlled with medication. Good news. The bad news? He no longer thought that she was having infantile spasms. Instead he explained that he saw spikes on Pipers EEG that were not very common. What this means is that her brain is in an almost constant state of disorganization. This makes it harder for her to learn. He also told us that there is not a medication that has been shown to fix this. So what does this mean? We would put Piper on an anti-seizure medication for her physical seizures but there was nothing we could do about her disorganized brain. I felt like I was going to throw up. What does this mean for Piper? He said he didn’t know. NICE, more not knowing!
Piper started her medication on Thursday evening and was released from the hospital on Saturday morning. Since she’s been home she's been her normal self and she hasn’t had one of the seizures where she stares and stops breathing. She sometimes has little spasms where her arms will raise up in front of her, go down and then go back up again. We think they look like infantile spasms (because we looked at videos of it on YouTube) so we called the neurologist to let him know. We are going back to Sick Kids tomorrow for a follow up EEG. Hoping we get good news and there is some kind of medication or therapy for Piper.
The sad thing about all this is that Piper is no better than she was before. Yes, she had all the tests performed and saw all the doctors that I have been hounding over the last few months but she now has epilepsy. The thing is this epilepsy is not causing her hypotonia and vice versa. We are no closer to finding out what is causing her hypotonia, we just have epilepsy added to the things my beautiful daughter has to deal with. What went wrong? Why is she going through this? Why her? Why not me?