Many people don't know this, but China now only adopts children with special needs. So when we made the decision to adopt from China about two years ago, we were asked to complete a Medical Checklist. This checklist is a list of all possible diseases, syndromes or ailments a child may have when adopted from China. We met with our pediatrician and learned as much as we could about each item on the list and checked "yes" or "no" next to each item. On one hand, this felt so wrong because with birth children, you don't get to say "no" if they happen to be born with a chronic illness or disease. It also felt wrong because some of the children overseas may be so ill, they won't live long enough to be adopted unless someone says "yes" to them. But on the other hand, adoptive parents have to know their limits. And in our case, we had other children in the home to consider. Adopting children from hard places has a lot of trials and tribulations without taking on more than you feel equipped to handle. All agencies make this very clear as you go through the long adoption journey. They also make it very clear that while you will not get matched with a child unless they meet the criteria you've outlined on the medical checklist, it is impossible to completely know an orphan's medical history. Additionally, China does not have access to the same level of medical testing we have in the States. Therefore, it is possible and very likely that you will adopt a child with an undiagnosed or undisclosed illness...for us with Cheyenne, this was Epilepsy.
When reviewing the medical checklist, we marked "no" to Epilepsy. We were only aware of the Grand mal seizures that Epilepsy can cause. We were not aware of other types of seizures. Our pediatrician explained that children with Epilepsy tend to have cognitive delays and cannot grow up to drive a car or live independently unless they are seizure free for at least six months. We were accepting to many ailments but ultimately we wanted something "correctible" with therapy or surgery or something "minor" enough to still allow the child to grow up to live independently some day. As much as we love and absolutely adore Cheyenne, if we're being honest, we would tell you that if her file had listed Epilepsy, we would not have proceeded with her adoption. So believe me when I say that it was a true blessing that the file was inaccurate.
When we saw Cheyenne's file, the special needs listed were, "developmental delay" and "Cerebral Palsy". Her file also mentioned that she was allergic to chocolate (but my girl can eat her weight in chocolate with no issues). Upon reading her file and reviewing the multiple pictures and videos they included with the file, we determined (with the help of an International Adoption Physician), that if there really was CP, it was incredibly minor and based on the video, she didn't seem that developmentally delayed compared to her institionalized peers. There was no mention of Epilepsy and no indication of seizures, except for a "Febrile" seizure coupled with a high fever which was dicovered to be a UTI that occurred when she was three years old. When discussing this with Dr. Staat, we learned that many children have a Febrile seizure when they experience high fever. And since the file specifically said there was no seizure activity since then, we all believed it was benign. Everything we examined assured us she would grow to be a healthy and happy young woman.
We met Cheyenne in March of 2017. In late June of 2017 I watched her first seizure. It was so bizarre. I was dropping her off at daycare. She walked away from me without saying good-bye (which was very unusual for her). She started staring up towards the ceiling and rotating in a slow circle while pulling her legs up like a newborn colt learning to walk. When I walked over to her, I made eye contact with her but could tell she was not really making true eye contact with me. She was not responding to anything I was saying or doing. This went on for about two minutes or so and then she finally reconnected with me and yawned and said "Bye Mommy" and hugged me as if nothing happened. Since I had only been aware of Grand mal seizures, it didn't even dawn on me that she was having a seizure. Turns out this was the first of many "absence" seizures she would have.
The second time was much worse. About a month later, we got a call from daycare that no parent wants to get. Cheyenne had what they believed to be a seizure and was being transported by ambulance to Children's hospital. Apparently she appeared to be sleeping at the table but when they went to wake her, she was foaming at the mouth and non-responsive. They cleared the room and started their seizure protocol which included checking for vitals. They said she was breathing so shallowly that they weren't sure if she was even breathing and the director sent another teacher to get the defibrillator paddles. Fortunately, by time she returned with the paddles, Cheyenne was responding enough to avoid having to use them. The ER referred us to neurology. Neurology diagnosed her with Epilepsy and changed our lives.
The first thing Neuro did was order an EEG and an MRI. The EEG was fairly normal but the MRI showed a "lesion" of some kind that the doctor wasn't sure if it was a growing tumor or old scar tissue from a precious injury. The only way to know was to "wait and see". We had to wait three months and then redo the MRI for a comparison. Fortunately the comparison showed no changes (indicating an old injury) but that time was absolutely the longest three months of our lives!
The past year has been spent playing with various medications to attempt to find the right "cocktail". The first med made her crazy mean (like putting a boy in a choke hold on the playground at school for no reason). The next med actually increased her seizures. One couldn't be given until we had genetic testing done (which took months) and one could only be given for a short amount of time because it is very dangerous for girls to start menstruating and eventually get pregnant on it...and the best part, none of these meds (or multiple combinations of them) stopped her seizures.
After a year plus of medication failures, the regular neurology team referred us to the neuro surgery team. We met with neurosurgery about a month ago. The doctor was very thorough and showed us the actual MRI scans and explained what it actually showed was a brain malformation on her left side that was likely caused by a stroke in-utero or at a very early age. He explained that due to the brain injury and medication failures, we only had a 1 - 3% chance of medication ever fully controlling her seizures. Therefore, he recommended being evaluated for brain surgery. He said that if she is a candidate for surgery, there is at least a 50 - 70% chance that she could be completely cured of seizures.
So here we sit at Children's hospital where Cheyenne was admitted this morning for five full days of video/audio EEG monitoring, tests and scans. She's already had multiple other MRIs done including one that told them where all of her cognitive and motor sensors are in her brain. This week they will perform several different tests including one tomorrow where we are actually praying that she has a seizure. If she does have a seizure, they will be able to inject a special dye which will allow them to see all of the brain waves impacted by the seizure. We've removed all of her medication in preparation and they have me keeping her awake until midnight and getting her up at six to purposely deprive her of sleep in hopes to trigger a seizure.
Can you imagine actually wishing for your child to have a seizure? It is so counterintuitive. I mean the last time she had one without medication landed her in the ER and had people believing she was near death. But ultimately, this is what it takes to determine if we will be able to cure her completely. I have to keep telling myself that she is in a safe place. Our children's hospital was just voted #2 in the country which really means they are #2 in the WORLD. At the end of the day, we have to trust that these are the true experts and we all have her very best interest at heart. The goal is to see the seizure in action and determine exactly what happens in her little brain before, during and after a seizure. They will then compare that data with the brain mapping done through the various other tests to ensure that operating would not cause any detriment to her motor or cognitive abilities.
So, as odd as it seems, I'm asking all who are reading this in the next 24-48 hours to please pray for a seizure. Please pray for guidance and clarity for the medical staff involved in evaluating her results and pray for guidance and clarity in the decision we may need to make in the upcoming weeks.
When reviewing the medical checklist, we marked "no" to Epilepsy. We were only aware of the Grand mal seizures that Epilepsy can cause. We were not aware of other types of seizures. Our pediatrician explained that children with Epilepsy tend to have cognitive delays and cannot grow up to drive a car or live independently unless they are seizure free for at least six months. We were accepting to many ailments but ultimately we wanted something "correctible" with therapy or surgery or something "minor" enough to still allow the child to grow up to live independently some day. As much as we love and absolutely adore Cheyenne, if we're being honest, we would tell you that if her file had listed Epilepsy, we would not have proceeded with her adoption. So believe me when I say that it was a true blessing that the file was inaccurate.
When we saw Cheyenne's file, the special needs listed were, "developmental delay" and "Cerebral Palsy". Her file also mentioned that she was allergic to chocolate (but my girl can eat her weight in chocolate with no issues). Upon reading her file and reviewing the multiple pictures and videos they included with the file, we determined (with the help of an International Adoption Physician), that if there really was CP, it was incredibly minor and based on the video, she didn't seem that developmentally delayed compared to her institionalized peers. There was no mention of Epilepsy and no indication of seizures, except for a "Febrile" seizure coupled with a high fever which was dicovered to be a UTI that occurred when she was three years old. When discussing this with Dr. Staat, we learned that many children have a Febrile seizure when they experience high fever. And since the file specifically said there was no seizure activity since then, we all believed it was benign. Everything we examined assured us she would grow to be a healthy and happy young woman.
We met Cheyenne in March of 2017. In late June of 2017 I watched her first seizure. It was so bizarre. I was dropping her off at daycare. She walked away from me without saying good-bye (which was very unusual for her). She started staring up towards the ceiling and rotating in a slow circle while pulling her legs up like a newborn colt learning to walk. When I walked over to her, I made eye contact with her but could tell she was not really making true eye contact with me. She was not responding to anything I was saying or doing. This went on for about two minutes or so and then she finally reconnected with me and yawned and said "Bye Mommy" and hugged me as if nothing happened. Since I had only been aware of Grand mal seizures, it didn't even dawn on me that she was having a seizure. Turns out this was the first of many "absence" seizures she would have.
The second time was much worse. About a month later, we got a call from daycare that no parent wants to get. Cheyenne had what they believed to be a seizure and was being transported by ambulance to Children's hospital. Apparently she appeared to be sleeping at the table but when they went to wake her, she was foaming at the mouth and non-responsive. They cleared the room and started their seizure protocol which included checking for vitals. They said she was breathing so shallowly that they weren't sure if she was even breathing and the director sent another teacher to get the defibrillator paddles. Fortunately, by time she returned with the paddles, Cheyenne was responding enough to avoid having to use them. The ER referred us to neurology. Neurology diagnosed her with Epilepsy and changed our lives.
The first thing Neuro did was order an EEG and an MRI. The EEG was fairly normal but the MRI showed a "lesion" of some kind that the doctor wasn't sure if it was a growing tumor or old scar tissue from a precious injury. The only way to know was to "wait and see". We had to wait three months and then redo the MRI for a comparison. Fortunately the comparison showed no changes (indicating an old injury) but that time was absolutely the longest three months of our lives!
The past year has been spent playing with various medications to attempt to find the right "cocktail". The first med made her crazy mean (like putting a boy in a choke hold on the playground at school for no reason). The next med actually increased her seizures. One couldn't be given until we had genetic testing done (which took months) and one could only be given for a short amount of time because it is very dangerous for girls to start menstruating and eventually get pregnant on it...and the best part, none of these meds (or multiple combinations of them) stopped her seizures.
After a year plus of medication failures, the regular neurology team referred us to the neuro surgery team. We met with neurosurgery about a month ago. The doctor was very thorough and showed us the actual MRI scans and explained what it actually showed was a brain malformation on her left side that was likely caused by a stroke in-utero or at a very early age. He explained that due to the brain injury and medication failures, we only had a 1 - 3% chance of medication ever fully controlling her seizures. Therefore, he recommended being evaluated for brain surgery. He said that if she is a candidate for surgery, there is at least a 50 - 70% chance that she could be completely cured of seizures.
So here we sit at Children's hospital where Cheyenne was admitted this morning for five full days of video/audio EEG monitoring, tests and scans. She's already had multiple other MRIs done including one that told them where all of her cognitive and motor sensors are in her brain. This week they will perform several different tests including one tomorrow where we are actually praying that she has a seizure. If she does have a seizure, they will be able to inject a special dye which will allow them to see all of the brain waves impacted by the seizure. We've removed all of her medication in preparation and they have me keeping her awake until midnight and getting her up at six to purposely deprive her of sleep in hopes to trigger a seizure.
Can you imagine actually wishing for your child to have a seizure? It is so counterintuitive. I mean the last time she had one without medication landed her in the ER and had people believing she was near death. But ultimately, this is what it takes to determine if we will be able to cure her completely. I have to keep telling myself that she is in a safe place. Our children's hospital was just voted #2 in the country which really means they are #2 in the WORLD. At the end of the day, we have to trust that these are the true experts and we all have her very best interest at heart. The goal is to see the seizure in action and determine exactly what happens in her little brain before, during and after a seizure. They will then compare that data with the brain mapping done through the various other tests to ensure that operating would not cause any detriment to her motor or cognitive abilities.
So, as odd as it seems, I'm asking all who are reading this in the next 24-48 hours to please pray for a seizure. Please pray for guidance and clarity for the medical staff involved in evaluating her results and pray for guidance and clarity in the decision we may need to make in the upcoming weeks.
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