I am writing this from the comforts of my own home, cuddled up on our couch with my old quilt, writing this while slowly allowing the cookies that my mother in-law brought me, to melt in my mouth. It's good to be home and it's nice to have positive news to share... While I am not fully ready to celebrate I am very happy to have some answers to the questions that have been bothering me for so long now.
Excitement and joy is such an odd feeling to have when it comes to Vada's health. I feel as if I am always waiting for the other shoe to drop-- so to speak. The thought of celebrating is almost frightening. Like, if I allow myself to feel the happiness then it may become a veil of smoke that clears only to reveal something terrible again. There's one word for that... fear.
I have been doing a really good job at giving it all to God. I try not to figure out all of the "why's" and have faith that He has a plan and I am not only a part of it but Vada is as well.
Vada has been having episodes of what we believed to be a re-occurrence of Infantile Spasms/West Syndrome/seizures. She has been having them for over a month now and the whole plan for the latest hospital trip (in Saint Louis) was to do a EEG-Video with hopes of capturing the movements with the EEG going and then to see if she was having any irregularities in her brain waves. If she were having irregularities than it would quite possibly be enough to say that the seizures had in fact returned. They have not however. In fact this is the second EEG that has come back as "normal" with in a months time frame! Yesterday, Vada had two separate occasions of falling asleep while having the movements that we were questioning, both times they were caught on camera and both times the EEG remained "normal". So the doctors have come to the conclusion that Vada is not having seizures again but that she is having what they call Sleep Myoclonus. It's hard for me to grasp that something this simple is the culprit for the cause of our concerns. I think when it comes down to it, its hard to believe that she caught a break. I still hold my breath and my heart feels as if it putters off beat each time I feel or see her body jerk while falling asleep, which I am sure that I will always have some sort of reaction to her alarming movements but it does feel good to know that as of now she is seizure free!
I have been asked already by a few people if it's a possibility that she never actually had the seizure disorder called Infantile Spasms also known as West Syndrome in the first place. It. Is. Not. A. Possibility. When Vada was first diagnosed she was put on an EEG-V that showed a mess of abnormal brain activity, including Hypsarrhythmia, which goes with this particular form of Epilepsy. She did in fact have IS and it is possible that those seizures may come back or even change into another form of Epilepsy down the road. For now, however, she has a pretty clean bill of health.
With all of that being said and regardless of the diagnosis, I wouldn't change a thing about the way I sought out treatment for Vada. Infantile Spasms is not something to mess around with, nor is it something that should go untreated. Its true that Vada's Sleep Myoclonus looks very similar to the seizures she was having with IS but testing needed to be done to guarantee a correct diagnosis. So for all of you who are in the same boat or in one similar to ours I have a few recommendations. Take what you want from the below advice and leave the rest.
If you suspect that your child is having Infantile Spasms or any other seizure I would recommend calling your Pediatrician immediately. If the questionable activity first occurs in the evening and your child is not effected in a physically harmful way, then I would wait until the morning to call. Getting the treatment you need may take a few days and it certainly wont happen over night. If there is ever any sign of respiratory distress (blue lips, rapid or shallow breathing etc..) then I would go straight to the Emergency Department. Also, if its going to be several weeks before you can be seen by an Epitologist or a Neurologist then you may want to consider just going straight through the ED. Every time we have choose this route Vada has been seen by a specialist within hours of admittance but then, that was also after knowing what we were dealing with.
Something else of importance is to start a journal, noting all of the the questionable activities. Make sure to chart the times that the movements start, how long they last, how many movement you saw and what time they end. I would also chart the physical/mental state your child was in before, during and after the possible seizure. Pay attention to details such as leg and arm movements, head movements as well as eye movements and make sure to bring all of your notes with you to all of the doctors appointments.
Most cell phones now have video cameras built into them. Getting detailed videos can be extremely helpful, especially when dealing with doctors who believe they know it all.
I am not claiming to know everything or even a lot about seizures. Most of my advise has come from other parents who have been here before us as well as what has helped us in our own journey. If you or someone you know ever has any question or a concerns, feel free to contact me. I will be willing to help in any way that I can or at the very least, I will find someone who can!
Excitement and joy is such an odd feeling to have when it comes to Vada's health. I feel as if I am always waiting for the other shoe to drop-- so to speak. The thought of celebrating is almost frightening. Like, if I allow myself to feel the happiness then it may become a veil of smoke that clears only to reveal something terrible again. There's one word for that... fear.
I have been doing a really good job at giving it all to God. I try not to figure out all of the "why's" and have faith that He has a plan and I am not only a part of it but Vada is as well.
Vada has been having episodes of what we believed to be a re-occurrence of Infantile Spasms/West Syndrome/seizures. She has been having them for over a month now and the whole plan for the latest hospital trip (in Saint Louis) was to do a EEG-Video with hopes of capturing the movements with the EEG going and then to see if she was having any irregularities in her brain waves. If she were having irregularities than it would quite possibly be enough to say that the seizures had in fact returned. They have not however. In fact this is the second EEG that has come back as "normal" with in a months time frame! Yesterday, Vada had two separate occasions of falling asleep while having the movements that we were questioning, both times they were caught on camera and both times the EEG remained "normal". So the doctors have come to the conclusion that Vada is not having seizures again but that she is having what they call Sleep Myoclonus. It's hard for me to grasp that something this simple is the culprit for the cause of our concerns. I think when it comes down to it, its hard to believe that she caught a break. I still hold my breath and my heart feels as if it putters off beat each time I feel or see her body jerk while falling asleep, which I am sure that I will always have some sort of reaction to her alarming movements but it does feel good to know that as of now she is seizure free!
I have been asked already by a few people if it's a possibility that she never actually had the seizure disorder called Infantile Spasms also known as West Syndrome in the first place. It. Is. Not. A. Possibility. When Vada was first diagnosed she was put on an EEG-V that showed a mess of abnormal brain activity, including Hypsarrhythmia, which goes with this particular form of Epilepsy. She did in fact have IS and it is possible that those seizures may come back or even change into another form of Epilepsy down the road. For now, however, she has a pretty clean bill of health.
With all of that being said and regardless of the diagnosis, I wouldn't change a thing about the way I sought out treatment for Vada. Infantile Spasms is not something to mess around with, nor is it something that should go untreated. Its true that Vada's Sleep Myoclonus looks very similar to the seizures she was having with IS but testing needed to be done to guarantee a correct diagnosis. So for all of you who are in the same boat or in one similar to ours I have a few recommendations. Take what you want from the below advice and leave the rest.
If you suspect that your child is having Infantile Spasms or any other seizure I would recommend calling your Pediatrician immediately. If the questionable activity first occurs in the evening and your child is not effected in a physically harmful way, then I would wait until the morning to call. Getting the treatment you need may take a few days and it certainly wont happen over night. If there is ever any sign of respiratory distress (blue lips, rapid or shallow breathing etc..) then I would go straight to the Emergency Department. Also, if its going to be several weeks before you can be seen by an Epitologist or a Neurologist then you may want to consider just going straight through the ED. Every time we have choose this route Vada has been seen by a specialist within hours of admittance but then, that was also after knowing what we were dealing with.
Something else of importance is to start a journal, noting all of the the questionable activities. Make sure to chart the times that the movements start, how long they last, how many movement you saw and what time they end. I would also chart the physical/mental state your child was in before, during and after the possible seizure. Pay attention to details such as leg and arm movements, head movements as well as eye movements and make sure to bring all of your notes with you to all of the doctors appointments.
Most cell phones now have video cameras built into them. Getting detailed videos can be extremely helpful, especially when dealing with doctors who believe they know it all.
I am not claiming to know everything or even a lot about seizures. Most of my advise has come from other parents who have been here before us as well as what has helped us in our own journey. If you or someone you know ever has any question or a concerns, feel free to contact me. I will be willing to help in any way that I can or at the very least, I will find someone who can!
2 comments:
Glad you are home. Thanks for the informative post.
So HAPPY for YOU AND VADA!!! This is AMAZING NEWS!!!!
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