We have some difficult news to share, we have shared this with some of you already, but certainly not all. Unfortunately the struggles Taylor faced in her first couple of weeks are not behind her, they're sadly just beginning.
Shortly after Christmas I was getting concerned that she wasn't yet smiling, which should have happened by about 2 months. As each week passed with not even a subtle smile it worried me more and more. I was so pre-occupied with the absence of a smile that I wasn't noticing that there were so many other things she also wasn't doing. Getting further into January as she passed her 3 month mark and close to 4 months my worries kept growing. Her head wasn't getting stronger, still no smiles or expressions of excitement, no reaching for toys, no holding on to a toy, no playing with her hands and feet, not following objects with her eyes...all the things that she should have been doing by that stage. At our 4 month checkup with the pediatrician I took my list of concerns and he was also very concerned. On his examination of her he said that her visual attention was very poor, she won't focus on something or follow it. He had us do a 4 month questionnaire, and the results showed that she was significantly behind developmentally in all the categories...communication, motor skills, fine motor skills, problem solving, and personal/social. He put in a referral to the Infant Services Program at Children's Hospital, a program that has access to different therapists to assess her needs. He also put in a referral to Early Intervention, a program that sends someone to the home to assist with encouraging her development in different areas. And he also requested vision and hearing testing, and another EEG. She failed the initial screening test for hearing and the Audiologist said to not be concerned yet, as it may just be a result of fluid behind the eardrum, and they scheduled a follow-up diagnostic test. As we got closer and closer to her 5 month mark I got more and more worried and had a gut feeling that something was wrong.
Two weeks ago, on March 6th, she was having her first morning bottle and I noticed something strange with what she was doing with her arms. I stopped feeding her and immediately knew something wasn't right. She would bring her arms up, tighten and roll her eyes to the right. Each time only lasted a couple seconds and she would repeat it every 5-10 seconds. This went on for a few minutes and I thought she was having seizures. I put her down and grabbed the video camera and managed to capture a few of them before the battery died. I called the HealthLink line and it put me on hold so I called my friend Kim to get her sister-in-law's number who is a nurse. She told me to just call 911, so I did. They got there within about 10 minutes. Me not being technologically skilled couldn't figure out how to change the battery on the camera to show the paramedics. I explained what had happened and they couldn't really confirm whether or not they were seizures, but after hearing everything that happened with her when she was born, they said it wouldn't hurt to go to the hospital. So we got her in her carseat and into the ambulance and Francis left work and met us at Children's. She was still stable when we got there so we were sent to the waiting room. I called the pediatrician's office from the waiting room and he was immediately worried, said it sounded like Infantile Spasms and faxed a letter over to Children's with his observations of her. We got in after about an hour.
We showed them the video from home but they didn't confirm one way or another. While we were there at about 2pm she started having another one and it was witnessed by the nurse and the Resident Neurologist and they were confirmed as seizures. They brought down a technician right away and did an EEG on her to record the electrical activity in the brain. They were hoping to capture an episode while she was hooked up but of course she had one not even five minutes after they finished. The results came back and the EEG showed a characteristic pattern with very chaotic and unorganized background brain activity. The Neurologist then told us that the seizures were called Infantile Spasms, a very rare and very severe seizure disorder (epilepsy), and that it is often associated with existing neurological or developmental problems. Infantile spasms often go away by the time the child is three or four years old, but often sooner than that. However, many children with infantile spasms continue to have neurological and developmental problems, or may develop other even more severe forms of epilepsy later in life that are even more difficult to control. What's characteristic of infantile spasms is that they occur in clusters. The seizures repeat every 5 to 30 seconds, sometimes 10 to 40 times in a single attack. Her attacks last about 6 or 7 minutes. The spasms become less intense and farther apart as the cluster progresses. She was admitted to Children's that night and started on anti-convulsant medication called Vigabatrin. A flurry of blood tests, urine tests, spinal tap, and an MRI were all put into action to try and determine the underlying cause. Hearing and vision tests were done and we are still waiting on those results.
Taylor's seizures were under control by Sunday afternoon, she responded well to the medication within 2 days which is a positive. The blood, urine and spinal tap results that have come in so far have not shown anything. The MRI was done and revealed a brain malformation. The corpus callosum (the fibres that connect the two hemispheres) is thinner than it is supposed to be. The significance is that the corpus callosum is the communication link for all brain activity. It is most likely the reason for the seizures and that she is so far behind developmentally, however it is possible that there is an underlying metabolic disorder/disease that is a contributing factor. A full metabolic workup is under way, some of the results take weeks to come back.
Because her development was so behind prior to the onset of the spasms, the Neurologist feels confident in saying that she will never develop as a normal child. What they can't predict is what kind of gains she will accomplish. That is the part that is breaking our hearts right now. That is what we want answers for and they can't give them to us. We just have to wait and see and in the meantime be educated on what we need to do to stimulate her development and the rest is up to what she is or isn't going to be able to do. Like I said earlier, I've had a gut feeling that something was very wrong for a while, but I had no idea it could be something so devastating. We are still trying to digest all this and are overwhelmed beyond belief. We're holding up okay, and trying to absorb the fact that our little angel is never going to be normal, and we can only hope and pray that she will be able to make slow steady gains and just always be behind. The possibility of her not being able to develop any further is our biggest fear and we're trying not to go there because it's just too much to bear, but we're so scared right now it's sometimes hard not to let our minds wander. We can just take this one day at a time, be strong for each other, and stay positive and hopeful that her development will slowly progress. We love her with all our hearts, no matter what her future holds, and we're going to do everything we can to help her along this journey.
We got home from Children's on Tuesday night and it has been nice to be home and all together. The seizures are still under control which is a positive sign. She has an appointment in a couple of days with an Opthamalogist to do a thorough examination of her eyes. The anti-convulsant medication has a side effect that can cause loss of peripheral vision so they are going to need to monitor her eyes closely while she is on it. I think the only other outstanding test is that they need to do a muscle biopsy in a few weeks which is part of the metabolic workup. It's just day surgery but she'll have to go under general anaesthetic and they'll make a small cut in her leg and take a sample of the muscle.
We're going to be inundated with appointments for some time between all the different doctors, services and resources available to help us. It's all so overwhelming. Sorry for such a long note, but I wanted to try and explain everything as best as I could.
Shortly after Christmas I was getting concerned that she wasn't yet smiling, which should have happened by about 2 months. As each week passed with not even a subtle smile it worried me more and more. I was so pre-occupied with the absence of a smile that I wasn't noticing that there were so many other things she also wasn't doing. Getting further into January as she passed her 3 month mark and close to 4 months my worries kept growing. Her head wasn't getting stronger, still no smiles or expressions of excitement, no reaching for toys, no holding on to a toy, no playing with her hands and feet, not following objects with her eyes...all the things that she should have been doing by that stage. At our 4 month checkup with the pediatrician I took my list of concerns and he was also very concerned. On his examination of her he said that her visual attention was very poor, she won't focus on something or follow it. He had us do a 4 month questionnaire, and the results showed that she was significantly behind developmentally in all the categories...communication, motor skills, fine motor skills, problem solving, and personal/social. He put in a referral to the Infant Services Program at Children's Hospital, a program that has access to different therapists to assess her needs. He also put in a referral to Early Intervention, a program that sends someone to the home to assist with encouraging her development in different areas. And he also requested vision and hearing testing, and another EEG. She failed the initial screening test for hearing and the Audiologist said to not be concerned yet, as it may just be a result of fluid behind the eardrum, and they scheduled a follow-up diagnostic test. As we got closer and closer to her 5 month mark I got more and more worried and had a gut feeling that something was wrong.
Two weeks ago, on March 6th, she was having her first morning bottle and I noticed something strange with what she was doing with her arms. I stopped feeding her and immediately knew something wasn't right. She would bring her arms up, tighten and roll her eyes to the right. Each time only lasted a couple seconds and she would repeat it every 5-10 seconds. This went on for a few minutes and I thought she was having seizures. I put her down and grabbed the video camera and managed to capture a few of them before the battery died. I called the HealthLink line and it put me on hold so I called my friend Kim to get her sister-in-law's number who is a nurse. She told me to just call 911, so I did. They got there within about 10 minutes. Me not being technologically skilled couldn't figure out how to change the battery on the camera to show the paramedics. I explained what had happened and they couldn't really confirm whether or not they were seizures, but after hearing everything that happened with her when she was born, they said it wouldn't hurt to go to the hospital. So we got her in her carseat and into the ambulance and Francis left work and met us at Children's. She was still stable when we got there so we were sent to the waiting room. I called the pediatrician's office from the waiting room and he was immediately worried, said it sounded like Infantile Spasms and faxed a letter over to Children's with his observations of her. We got in after about an hour.
We showed them the video from home but they didn't confirm one way or another. While we were there at about 2pm she started having another one and it was witnessed by the nurse and the Resident Neurologist and they were confirmed as seizures. They brought down a technician right away and did an EEG on her to record the electrical activity in the brain. They were hoping to capture an episode while she was hooked up but of course she had one not even five minutes after they finished. The results came back and the EEG showed a characteristic pattern with very chaotic and unorganized background brain activity. The Neurologist then told us that the seizures were called Infantile Spasms, a very rare and very severe seizure disorder (epilepsy), and that it is often associated with existing neurological or developmental problems. Infantile spasms often go away by the time the child is three or four years old, but often sooner than that. However, many children with infantile spasms continue to have neurological and developmental problems, or may develop other even more severe forms of epilepsy later in life that are even more difficult to control. What's characteristic of infantile spasms is that they occur in clusters. The seizures repeat every 5 to 30 seconds, sometimes 10 to 40 times in a single attack. Her attacks last about 6 or 7 minutes. The spasms become less intense and farther apart as the cluster progresses. She was admitted to Children's that night and started on anti-convulsant medication called Vigabatrin. A flurry of blood tests, urine tests, spinal tap, and an MRI were all put into action to try and determine the underlying cause. Hearing and vision tests were done and we are still waiting on those results.
Taylor's seizures were under control by Sunday afternoon, she responded well to the medication within 2 days which is a positive. The blood, urine and spinal tap results that have come in so far have not shown anything. The MRI was done and revealed a brain malformation. The corpus callosum (the fibres that connect the two hemispheres) is thinner than it is supposed to be. The significance is that the corpus callosum is the communication link for all brain activity. It is most likely the reason for the seizures and that she is so far behind developmentally, however it is possible that there is an underlying metabolic disorder/disease that is a contributing factor. A full metabolic workup is under way, some of the results take weeks to come back.
Because her development was so behind prior to the onset of the spasms, the Neurologist feels confident in saying that she will never develop as a normal child. What they can't predict is what kind of gains she will accomplish. That is the part that is breaking our hearts right now. That is what we want answers for and they can't give them to us. We just have to wait and see and in the meantime be educated on what we need to do to stimulate her development and the rest is up to what she is or isn't going to be able to do. Like I said earlier, I've had a gut feeling that something was very wrong for a while, but I had no idea it could be something so devastating. We are still trying to digest all this and are overwhelmed beyond belief. We're holding up okay, and trying to absorb the fact that our little angel is never going to be normal, and we can only hope and pray that she will be able to make slow steady gains and just always be behind. The possibility of her not being able to develop any further is our biggest fear and we're trying not to go there because it's just too much to bear, but we're so scared right now it's sometimes hard not to let our minds wander. We can just take this one day at a time, be strong for each other, and stay positive and hopeful that her development will slowly progress. We love her with all our hearts, no matter what her future holds, and we're going to do everything we can to help her along this journey.
We got home from Children's on Tuesday night and it has been nice to be home and all together. The seizures are still under control which is a positive sign. She has an appointment in a couple of days with an Opthamalogist to do a thorough examination of her eyes. The anti-convulsant medication has a side effect that can cause loss of peripheral vision so they are going to need to monitor her eyes closely while she is on it. I think the only other outstanding test is that they need to do a muscle biopsy in a few weeks which is part of the metabolic workup. It's just day surgery but she'll have to go under general anaesthetic and they'll make a small cut in her leg and take a sample of the muscle.
We're going to be inundated with appointments for some time between all the different doctors, services and resources available to help us. It's all so overwhelming. Sorry for such a long note, but I wanted to try and explain everything as best as I could.
