We have Oliver's EEG tomorrow, the followup to the first one that diagnosed his IS. I am hoping and praying that we see some improvement over last time. Oliver had clusters of spasms this morning and then has been having random spasms throughout the morning the past few hours. Prior to that we had 3 seizure free days! He had his first therapy appt on Friday and did pretty well. We are hoping that PT through Pathways will help while we're waiting on our EI eval for PT/OT through the state. Wish they could call and schedule it already, they are so slow!
The weekend was fun, we took Tobin to an Easter Egg hunt and he got his haircut, very exciting. Yesterday we went to the children's museum so he could play for a few hours while Jason and Papa Frank built his big boy bed and switched bedrooms. Oliver now has his very own room, and Tobin is in his new room in his new twin bed. Very exciting.
Our neuro wants to increase Oliver's dose to the full 500mg packet of Vigabatrin starting tonight. Hoping that will keep the seizures away for more than 3 days this time!
Monday, March 29, 2010
Thursday, March 25, 2010
Spring has Sprung
well it's springtime and the weather is starting to get better, which means we will be able to take the little guy out for some walks and he can start to enjoy being outside with his big brother. After several spasms last weekend the drs upped his nightly dose to 8mL(400 mg) to see if they could once again decrease the spasms. He remained seizure free for 3 whole days and they came back this morning with a vengeance, so now we are increasing the morning dose of to 8mL (400 mg) as well. Now he is offically at 100mg per kg of baby. The drs say that 100-200 mg per kg is the best range to be in to see seizure control so we still have a lot of room to increase as far as dosing goes. Hopefully we find the right dose soon. EEG on tuesday should tell us more, fingers crossed we'll see some improvement.
We have our first PT appt at a center tomorrow and I am so excited to start on that road. I will have to call our EI case worker and see if she can light a fire under the state PT/OT so that we can get that process started as well.
We have our first PT appt at a center tomorrow and I am so excited to start on that road. I will have to call our EI case worker and see if she can light a fire under the state PT/OT so that we can get that process started as well.
Friday, March 19, 2010
Too good to be true
We had four glorious seizure free days. Oliver was coming out of his sleepy fog and starting to be more alert and active. Still awful tone and not a ton of development coming back but we had a brief glimpse of a happier time. I felt optimistic and happy for the first time in 2 weeks. We met with the pediatrician yesterday who said to keep up hope and he would be on top of the case along with our neuro and to get Oliver started in therapy right away.
Then this morning I get the dreaded text that Oliver had a seizure this morning. Now I'm holding my breath again waiting to see if he has any more today. I know I shouldn't expect seizure freedom so soon or even at all, but I was so hopeful for the first time since this all started.
Then this morning I get the dreaded text that Oliver had a seizure this morning. Now I'm holding my breath again waiting to see if he has any more today. I know I shouldn't expect seizure freedom so soon or even at all, but I was so hopeful for the first time since this all started.
Wednesday, March 17, 2010
2 days seizure free and counting
It's going to be a long road for us. Because the minute we stop holding our breaths and watching for a spasm at every turn, I know he'll have another one and it'll break our hearts all over again. Along with that, watching him sleeping peacefully is just as painful, because he has regressed back to newborn status. He's been on the medicine for 4 days now and has lost the few skills he had before being diagnosed with IS. He was delayed to begin with, not holding his head up well, not rolling over, etc but when placed on his tummy he would try to get his head up. When sitting on my lap he could look around for a few minutes before his muscles got tired and his head slumped. Now he has zero muscle tone. He's also decreased the amount he eats at each feeding, and seems to need to eat more frequently as a result. We were up every 1-3 hours last night, just like those first weeks home from the hospital back in October. At each feeding he barely nurses and then falls back asleep and I have to blow on his face and change his diaper to wake him to eat more. I'm scared to do this each time though because the spasms tend to come when he's just waking up. I am happy that the days have been seizure free so far, but nervous about the long term lasting effects of this illness and medication. I know even if he gets months or years behind, he'll have a long time to be able to catch up, but the damage done in the meantime sounds like it will hinder him long term. I know we caught it early and I should be grateful for that. The fact that he isn't having spasms again yet is also a good sign. I should be happy for the way things are right at this moment, but instead I am still focusing on the fact that he should be sitting in his exersaucer in the mornings, laughing at his big brother doing silly things. How do you let that go?
Poor Tobin is having a rough time too. He seems fine throughout the day and evening but every night he's up several times. Crying, calling for us, asking to sleep in our bed. Between the two kids I hardly slept last night. How do you explain to a 3 year old that his little brother isn't normal and might never be? How do you calm him down at midnight enough so that he'll lay back in bed and go to sleep? We had him in his crib until now because we were going to move Oliver into it soon and buy Tobin a twin bed. I think it's time to just do that now even if we're going to keep Oliver in our room. Maybe the "big boy" bed will help him be more comfortable. Just hesitant to spend the money when I know we'll have upcoming dr and therapy bills for Oliver. Tonight we're going to try and take the front of Tobin's crib and turn it into a toddler bed. We'll see if the ability to get up and go to the bathroom on his own will allow him to have more rest during the night. I was so looking forward to the spring, assuming Oliver would start sleeping through the night, in his own room so Jason and I could get more rest. Now it looks like we're right back where we started. Sleep deprivation and sadness do not make a good combination.
Poor Tobin is having a rough time too. He seems fine throughout the day and evening but every night he's up several times. Crying, calling for us, asking to sleep in our bed. Between the two kids I hardly slept last night. How do you explain to a 3 year old that his little brother isn't normal and might never be? How do you calm him down at midnight enough so that he'll lay back in bed and go to sleep? We had him in his crib until now because we were going to move Oliver into it soon and buy Tobin a twin bed. I think it's time to just do that now even if we're going to keep Oliver in our room. Maybe the "big boy" bed will help him be more comfortable. Just hesitant to spend the money when I know we'll have upcoming dr and therapy bills for Oliver. Tonight we're going to try and take the front of Tobin's crib and turn it into a toddler bed. We'll see if the ability to get up and go to the bathroom on his own will allow him to have more rest during the night. I was so looking forward to the spring, assuming Oliver would start sleeping through the night, in his own room so Jason and I could get more rest. Now it looks like we're right back where we started. Sleep deprivation and sadness do not make a good combination.
Tuesday, March 16, 2010
Feeling Lost
Today I'm feeling lost. Waiting for another spasm to strike at any moment.....hating this Sabril because it makes him so drowsy and groggy, but holding my breath when he's sleeping because I don't want him to wake up and spasm. Loving the Sabril if it does , in fact, keep the seizures away. Worrying about his eye condition and possible vision loss. I know this is minor if he can catch up developmentally along the way, and , let's face it, guide dogs are CUTE. But looking at your baby and thinking "my baby is broken" is probably one of the most heartbreaking things a mother has to go through. I am so happy to go to bed each night because it's the only time I don't think about this issue, but when I wake up, I am right back at Oliver's bedside watching him for signs of another spasm. With all our technology today, we're still baffled at the human brain and how it works (or fails to work). Oliver had a clear MRI and his blood and urine tests came back fine. So there isn't a place to pinpoint , no lesion to remove, nothing is responsible for this as far as we know. How do you fix a problem if you can't find the source?
Monday, March 15, 2010
First Post - backstory
When Oliver was first born, the dr told me to look up and see my baby boy. My 2nd baby boy. My first thought was "he looks like my father". My second thought was that he and my other son would have so much fun growing up together, running, skateboarding, swimming at the beach, going to Disney World and always being great friends and brothers. When Oliver was 3 weeks old he came down with viral meningitis. We didn't realize he was even sick until he got a really high fever one Friday morning. He felt too warm to me, so I called a friend to bring me a baby thermometer that worked since mine was almost 3 years old! He had a high enough fever that the dr sent us to the ER. They did a full workup and admitted him to the hospital. Over the 4 day hospital stay Oliver did great. He slept a lot, his fever stayed down, no other symptoms were noticed. The spinal tap returned the results that he had a viral meningitis, which we were told is less scary than it sounds and that he should recover just fine with no lasting effects.
Fast forward a few months, Oliver was about 2-3 months old and I noticed a weird head bobbing thing going on. Shortly after, he started having a rapid eye movement. We showed a video to our pediatrician who decided the head bobbing wasn't troublesome, but the eye movement looked like it might be an opsoclonus, typically found in patients who have a childhood cancer called neuroblastoma. The video was sent to an oncologist who recommended a CT scan from the neck down to rule out a tumor. We were able to do so and relieved that our health scare was over. As a followup to the eye movement that still existed we saw an opthamologist and neurologist who both agreed the eye movement was actually a nystagmus but didn't look serious enough to warrant a brain scan at that time. We made followup appointments for both for a few months out and thought it was probably just some leftover link from the meningitis that would go away with time.
While we went on with our lives I noticed that Oliver didn't seem to be developing like my first son had. by 4 months he wasn't able to hold his head up for very long, could no longer roll front to back, had not found his hands or feet, could not grasp objects etc. Both Neuro and Ped said to give him til 6 months to catch up as he was just on the slow side of average. I decided to call Early Intervention and at least have him evaluated to see if we could qualify for physical and occupational therapy to help him catch up.
Last week , at almost 5.5 months old, Oliver had a major spasm fit that looked like a seizure. We videotaped it and took him to the Dr that night. The Dr (not our regular ped), said it wasn't typical seizure behavior and it looked like a pain response. He checked him over head to toe and then looked at his eyes with a blacklight and special drops. He found a small scratch on the cornea and figured that was where the strange spasms came from. He ordered an EEG just to be safe. 2 days later we took Oliver back to a different Dr at the practice to make sure his eye was better. Earlier that morning he had another spasm episode , despite the fact that his eye was all better. The Dr we saw that day listened to me describe his movement and said I should get an EEG asap. We had one the next day.
On March 11, 2010, Oliver went in for his EEG. As soon as all the equipment and leads were attached to his head, he drifted off to sleep after a horrible night and morning (you have to sleep deprive your baby before an EEG). Right then, he started spasming. The EEG recorded a hypsarrhythmia, which is a chaotic brain pattern seen on EEG. Oliver was diagnosed with Infantile Spasms and immediately admitted to the hospital.
Infantile Spasms do not sound terribly scary at first, because they are clusters of spasms or seizures that kids usually outgrow by 24 months. However, because this is such an important time in the development of a child's brain, it is incredibly debilitating. If you read about this condition online (which I did for several hours after the diagnosis) it sounds grim and impossible to face. All of a sudden I flashed forward to a life without my boys playing together but one boy running and playing while the other sits limp and lifeless in a wheelchair. This was not how I envisioned my happy little family. Oliver had one more seizure episode while in the hospital last week. We brought him home and started him on a medication called Sabril. The medication can lead to vision loss and also make him incredibly sedated and groggy, which it does. It seems clear to me that while he's having seizures he won't be able to develop normally but the same outcome seems to be a possibility while he's on this medication. So here we are:
1. Hoping this medication works to prevent seizures until his EEG is clear and he outgrows this condition
2. Hoping that he doesn't develop another seizure condition through his early life or later in life
3. Hoping that the medication doesn't sideline his development so badly that he will never have the chance to catch up
I am writing this blog mainly as an outlet for my own frustration, because I don't want to burden friends or family with the details of our daily struggle against Infantile Spasms. I also want to get as much out there as possible so it doesn't build up in my own mind and make me insane. I've spent the past few days crying more tears than I ever thought possible, raging against this awful disorder, and grieving and mourning the baby I thought I had while trying to accept the baby he is today.
Oliver started the Sabril on Saturday March, 13. On Sunday he had more spasms than ever before and we all lost hope. I know that it can take up to a week to start working or we may need to mess around with his dose to get the seizures to stop. We have a followup EEG in 2 weeks and will know more then. If the seizures do not stop and the EEG doesn't clear we may have to try alternate medication, ACTH. To me, ACTH has worse side effects associated with it, but it is worth the trade off of having him be seizure free. There are a lot of unknowns at this point, mainly we don't know how delayed or disabled Oliver may be after all of this. If he isn't able to develop normally we will have to work really hard to try and get him to catch up, but we also have to accept that he may never catch up and will likely lose mental capacity in this struggle as well.
So we need a miracle. But more than just one grand miracle we need lots of tiny miracles. We need the medication to work and the seizures to stop, we need the EEG to clear, we need to eventually be able to wean him off the medication without the seizures returning. A miracle is needed to allow him to grow and thrive and develop beyond the physical and mental capacity of a 2 month old infant. Watching him frozen in time is almost has hard as watching the spasms rock his body and make him cry. So if you're the praying type, please pray for us. If you're not, just think good thoughts. One day I would like my little boy to be able to sit and actually read this journal and understand how much we love him and how much we will do to help him through this struggle.
04/26/2010: Update - since this original post we've learned that Oliver has a condition called Congenital Disorders of Glycosylation. It's a genetic disorder that he was born with, and the explanation for his nystagmus, infantile spasms, and gastro issues. We are in the process of learning more about the condition, the symptoms, and how it will affect Oliver in the long term.
Fast forward a few months, Oliver was about 2-3 months old and I noticed a weird head bobbing thing going on. Shortly after, he started having a rapid eye movement. We showed a video to our pediatrician who decided the head bobbing wasn't troublesome, but the eye movement looked like it might be an opsoclonus, typically found in patients who have a childhood cancer called neuroblastoma. The video was sent to an oncologist who recommended a CT scan from the neck down to rule out a tumor. We were able to do so and relieved that our health scare was over. As a followup to the eye movement that still existed we saw an opthamologist and neurologist who both agreed the eye movement was actually a nystagmus but didn't look serious enough to warrant a brain scan at that time. We made followup appointments for both for a few months out and thought it was probably just some leftover link from the meningitis that would go away with time.
While we went on with our lives I noticed that Oliver didn't seem to be developing like my first son had. by 4 months he wasn't able to hold his head up for very long, could no longer roll front to back, had not found his hands or feet, could not grasp objects etc. Both Neuro and Ped said to give him til 6 months to catch up as he was just on the slow side of average. I decided to call Early Intervention and at least have him evaluated to see if we could qualify for physical and occupational therapy to help him catch up.
Last week , at almost 5.5 months old, Oliver had a major spasm fit that looked like a seizure. We videotaped it and took him to the Dr that night. The Dr (not our regular ped), said it wasn't typical seizure behavior and it looked like a pain response. He checked him over head to toe and then looked at his eyes with a blacklight and special drops. He found a small scratch on the cornea and figured that was where the strange spasms came from. He ordered an EEG just to be safe. 2 days later we took Oliver back to a different Dr at the practice to make sure his eye was better. Earlier that morning he had another spasm episode , despite the fact that his eye was all better. The Dr we saw that day listened to me describe his movement and said I should get an EEG asap. We had one the next day.
On March 11, 2010, Oliver went in for his EEG. As soon as all the equipment and leads were attached to his head, he drifted off to sleep after a horrible night and morning (you have to sleep deprive your baby before an EEG). Right then, he started spasming. The EEG recorded a hypsarrhythmia, which is a chaotic brain pattern seen on EEG. Oliver was diagnosed with Infantile Spasms and immediately admitted to the hospital.
Infantile Spasms do not sound terribly scary at first, because they are clusters of spasms or seizures that kids usually outgrow by 24 months. However, because this is such an important time in the development of a child's brain, it is incredibly debilitating. If you read about this condition online (which I did for several hours after the diagnosis) it sounds grim and impossible to face. All of a sudden I flashed forward to a life without my boys playing together but one boy running and playing while the other sits limp and lifeless in a wheelchair. This was not how I envisioned my happy little family. Oliver had one more seizure episode while in the hospital last week. We brought him home and started him on a medication called Sabril. The medication can lead to vision loss and also make him incredibly sedated and groggy, which it does. It seems clear to me that while he's having seizures he won't be able to develop normally but the same outcome seems to be a possibility while he's on this medication. So here we are:
1. Hoping this medication works to prevent seizures until his EEG is clear and he outgrows this condition
2. Hoping that he doesn't develop another seizure condition through his early life or later in life
3. Hoping that the medication doesn't sideline his development so badly that he will never have the chance to catch up
I am writing this blog mainly as an outlet for my own frustration, because I don't want to burden friends or family with the details of our daily struggle against Infantile Spasms. I also want to get as much out there as possible so it doesn't build up in my own mind and make me insane. I've spent the past few days crying more tears than I ever thought possible, raging against this awful disorder, and grieving and mourning the baby I thought I had while trying to accept the baby he is today.
Oliver started the Sabril on Saturday March, 13. On Sunday he had more spasms than ever before and we all lost hope. I know that it can take up to a week to start working or we may need to mess around with his dose to get the seizures to stop. We have a followup EEG in 2 weeks and will know more then. If the seizures do not stop and the EEG doesn't clear we may have to try alternate medication, ACTH. To me, ACTH has worse side effects associated with it, but it is worth the trade off of having him be seizure free. There are a lot of unknowns at this point, mainly we don't know how delayed or disabled Oliver may be after all of this. If he isn't able to develop normally we will have to work really hard to try and get him to catch up, but we also have to accept that he may never catch up and will likely lose mental capacity in this struggle as well.
So we need a miracle. But more than just one grand miracle we need lots of tiny miracles. We need the medication to work and the seizures to stop, we need the EEG to clear, we need to eventually be able to wean him off the medication without the seizures returning. A miracle is needed to allow him to grow and thrive and develop beyond the physical and mental capacity of a 2 month old infant. Watching him frozen in time is almost has hard as watching the spasms rock his body and make him cry. So if you're the praying type, please pray for us. If you're not, just think good thoughts. One day I would like my little boy to be able to sit and actually read this journal and understand how much we love him and how much we will do to help him through this struggle.
04/26/2010: Update - since this original post we've learned that Oliver has a condition called Congenital Disorders of Glycosylation. It's a genetic disorder that he was born with, and the explanation for his nystagmus, infantile spasms, and gastro issues. We are in the process of learning more about the condition, the symptoms, and how it will affect Oliver in the long term.
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