I gave birth to my wonderful and handsome son on May 29, 2013. My pregnancy was not complicated and this was my third pregnancy and only son. He was born a month early and was not able to control his temperature so we had to stay an extra day in the hospital. We were able to go home and everything was fine. When he turned two months old, we noticed that his body would go limp and we informed our pediatrician about this, but no clear reasoning was given to why it was happening.
During his 6 month checkup, we informed the pediatrician about Cameron not reaching his milestones and the pediatrician contributed this to his premature birth, so I figured that he was delayed somewhat due to being a premature baby. By 9 months, we noticed that Cameron was not giving good eye contact and dropping his head more often and still going limp. He was just a very quiet baby. We again informed our pediatrician and she had no concerns and contributed it all his premature birth. This started to frustrate me especially since no one would ever visually experience the episode that I would describe and I did not know to associate the symptoms to a seizure.
Cameron had his 12 month checkup and we were assigned a new provider. Cameron was not crawling, walking, teething nor making any noise so the pediatrician gave us a referral to be seen by a physical therapist. On our first visit at PT, the therapist witnessed one of these episodes and was able to verify that it was a silent seizure that he was having. Our wonderful PT notified the pediatrician and a genetic blood testing was scheduled. The pediatrician also scheduled an EEG and an MRI. I received a referral to be seen by the neurologist as well. During my neurologist visit, they were trying to determine the activity and source of the seizures. The EEG did confirm seizures and the MRI was normal with a small cyst. The blood results finally came back within a month and a half and it was confirmed and received a diagnosis of FOXG1. The blood test revealed that there was duplication on chromosome 14.
The pediatrician was not able to give a lot of information about this because it is very rare. I had an appointment with a genetic counselor and they did a great job of explaining to me what has happened and also letting me know that Cameron is going to show us and teach us more about this duplication. I was very afraid and decided to learn more about this duplication so I researched the web and found the FOXG1 Foundation. I was so happy to know that there is a community of people who are going through the same thing and to know that there are other children with this.
Our neurologist prescribed Keppra for his seizures and when Cameron started taking the medicine we were able to notice the difference. His bottom teeth finally erupted and he started to do a lot of movement; it was like a brand new baby, lol. We have increased his dosage, but it has not completely ceased his seizures, but it has slowed them down tremendously. Cameron is 19 months old has 3 teeth, attempting to stand, he sits up on his own, and trying to reach out and grab things. This is very new to me, but I am adjusting well. Cameron also has a wonderful and big smile which keeps me so happy knowing that he is happy. I am so thankful that I was blessed to have such a wonderful son that my family and I will learn from. I am also so thankful to my wonderful therapist that was able to help get the ball rolling for my baby and she is excited to see the changes that occurred with Cameron. I would not trade him for ANYTHING in the world.
Thank you so much. 🙂 I gave birth to my wonderful and handsome son on May 29, 2013. My pregnancy was not complicated and this was my third pregnancy and only son. He was born a month early and was not able to control his temperature so we had to stay an extra day in the hospital. We were able to go home and everything was fine. When he turned two months old, we noticed that his body would go limp and we informed our pediatrician about this, but no clear reasoning was given to why it was happening.
During his 6 month checkup, we informed the pediatrician about Cameron not reaching his milestones and the pediatrician contributed this to his premature birth, so I figured that he was delayed somewhat due to being a premature baby. By 9 months, we noticed that Cameron was not giving good eye contact and dropping his head more often and still going limp. He was just a very quiet baby. We again informed our pediatrician and she had no concerns and contributed it all his premature birth. This started to frustrate me especially since no one would ever visually experience the episode that I would describe and I did not know to associate the symptoms to a seizure.
Cameron had his 12 month checkup and we were assigned a new provider. Cameron was not crawling, walking, teething nor making any noise so the pediatrician gave us a referral to be seen by a physical therapist. On our first visit at PT, the therapist witnessed one of these episodes and was able to verify that it was a silent seizure that he was having. Our wonderful PT notified the pediatrician and a genetic blood testing was scheduled. The pediatrician also scheduled an EEG and an MRI. I received a referral to be seen by the neurologist as well. During my neurologist visit, they were trying to determine the activity and source of the seizures. The EEG did confirm seizures and the MRI was normal with a small cyst. The blood results finally came back within a month and a half and it was confirmed and received a diagnosis of FOXG1. The blood test revealed that there was duplication on chromosome 14.
The pediatrician was not able to give a lot of information about this because it is very rare. I had an appointment with a genetic counselor and they did a great job of explaining to me what has happened and also letting me know that Cameron is going to show us and teach us more about this duplication. I was very afraid and decided to learn more about this duplication so I researched the web and found the FOXG1 Foundation. I was so happy to know that there is a community of people who are going through the same thing and to know that there are other children with this.
Our neurologist prescribed Keppra for his seizures and when Cameron started taking the medicine we were able to notice the difference. His bottom teeth finally erupted and he started to do a lot of movement; it was like a brand new baby, lol. We have increased his dosage, but it has not completely ceased his seizures, but it has slowed them down tremendously. Cameron is 19 months old has 3 teeth, attempting to stand, he sits up on his own, and trying to reach out and grab things. This is very new to me, but I am adjusting well. Cameron also has a wonderful and big smile which keeps me so happy knowing that he is happy. I am so thankful that I was blessed to have such a wonderful son that my family and I will learn from. I am also so thankful to my wonderful therapist that was able to help get the ball rolling for my baby and she is excited to see the changes that occurred with Cameron. I would not trade him for ANYTHING in the world.
Thank you so much. 🙂