<sigh> Okay, I’m probably going to screw this up, but finally heard from the kids, and as usual with kids who have complex medical issues, it’s a mixed bag.
The results of the MRI were the same as they were a couple of months ago. No increase, and in fact it confirmed the slight decrease, in the CSF in her ventricles. So scratch that worry. Yayyy!!
Oxybutin is not the cause of her seizures. Scratch that one....
He explained that in the early stages of her neural tube formation, when the bundle that is the neural plate take it’s assigned places as the spinal cord and the brain, Kendra’s brain didn’t form correctly. Here’s where I’ll get confused in the retelling, I fear. I think I understood that the brain forms from the inside of it to the outside. In Kendra’s case the opposite happened - the outside of her brain formed first, enveloping the inside out of order. This cortical malformation is almost certainly the cause of Kendra’s seizures and delays. She has two small areas of gray scarring, typical in cortical malformation but not large enough to be removed. Most kids with this malformation have seizures that are medication resistant. Kendra falls into this caragory.
There are a few things that can be done for Kendra. One is a medically supervised Keto diet. He said that within only 3 months we’d most likely see an improvement if there was going to be one, although he4 seizures wouldn’t stop completely on the diet. But Kendra is already a very light eater, and with her being in only the 8% percentile for weight given her height, he feared that even supervised the diet may trick her body into thinking she’s suffering from starvation. Scratch that one....not willing to take that risk.
The other is to do surgery to separate the membrane between the two halves of the brain. The doctor did not feel that the risk at this point was worth the uncertain outcome. Yep, scratch that one too.
The third one confuses me a bit, so I need to research it more. It’s called. Vagus Nerve Stimulator. A small half-dollar sized metal plate would be implanted into her chest, with wires wrapping around the Vagus nerves in her neck. The device pulses for 30 seconds, is off for 2 minutes, then repeats. The doctor seemed to be leaning toward this treatment, but the kids aren’t and ultimately it’s their call. Without more research and information, I tend to agree with them but am keeping my opinion to myself unless they ask for validation. He’s giving them all the time in the world to learn more about it, to understand it, and to make their decision. I applaud him for not pressuring them into something. She’d still need medication because it’s a joint therapy, and it could take 2 years to start working. It’s also more effective in people who have an aura and know a seizure is coming. Then either they or the person they tell runs a special magnet over the implant to activate the stimulator and reduce or stop the seizure. Kendra has no warning - she just drops. And she wouldn’t be able to recognize a seizure aura or tell anybody else anyway.
The plan at this point is to wean her off one of her 3 seizure meds, the Kepra, keep her on Onfi and a lower dose of Lamactil, and transition her to Depakote. The hope is that after the transition, which can be a little rough, we will be able to take her off everything except the Depakote. We know from our personal experience, (Katie with her Valproate Acid Syndrome and Kendra with her Spina Bifida), that Depakote is the worst one a woman can take. However, we also know from Jenny’s experience that it has been the only medication that stops her seizures completely. When (or if ever) Kendra would be able to want a family, she should also be mentally capable of discussing that were her personal physician. Realistically we don’t see that she will ever be able to do that, but hope springs eternal.
She also had a prescription for suppositories to stop prolonged seizing. The doctor changed that to a nasal spray. She doesn’t have enough muscle tone around her rectum to keep the suppository in long enough to do its job. He wrote two scripts, one for home and one for the school to have on hand.
We just want her to get through second grade in school at this point. Her developmentally delays and epilepsy, we have just had confirmed, are permanent. She will be able to learn, but she will never be even close to being able to live an independent life, not even in a specialized setting for people with disabilities. That was heartbreaking to hear but we’ll deal with what God gives us, keep working with her, and keep loving her. Knowing this will make every new word, every new activity or every new milestone she gets even more of a miracle.
So now you know what we know. And I’m going to hit my computer for some research! Thank you again for all the thoughts and prayers. You are all awesome!
The results of the MRI were the same as they were a couple of months ago. No increase, and in fact it confirmed the slight decrease, in the CSF in her ventricles. So scratch that worry. Yayyy!!
Oxybutin is not the cause of her seizures. Scratch that one....
He explained that in the early stages of her neural tube formation, when the bundle that is the neural plate take it’s assigned places as the spinal cord and the brain, Kendra’s brain didn’t form correctly. Here’s where I’ll get confused in the retelling, I fear. I think I understood that the brain forms from the inside of it to the outside. In Kendra’s case the opposite happened - the outside of her brain formed first, enveloping the inside out of order. This cortical malformation is almost certainly the cause of Kendra’s seizures and delays. She has two small areas of gray scarring, typical in cortical malformation but not large enough to be removed. Most kids with this malformation have seizures that are medication resistant. Kendra falls into this caragory.
There are a few things that can be done for Kendra. One is a medically supervised Keto diet. He said that within only 3 months we’d most likely see an improvement if there was going to be one, although he4 seizures wouldn’t stop completely on the diet. But Kendra is already a very light eater, and with her being in only the 8% percentile for weight given her height, he feared that even supervised the diet may trick her body into thinking she’s suffering from starvation. Scratch that one....not willing to take that risk.
The other is to do surgery to separate the membrane between the two halves of the brain. The doctor did not feel that the risk at this point was worth the uncertain outcome. Yep, scratch that one too.
The third one confuses me a bit, so I need to research it more. It’s called. Vagus Nerve Stimulator. A small half-dollar sized metal plate would be implanted into her chest, with wires wrapping around the Vagus nerves in her neck. The device pulses for 30 seconds, is off for 2 minutes, then repeats. The doctor seemed to be leaning toward this treatment, but the kids aren’t and ultimately it’s their call. Without more research and information, I tend to agree with them but am keeping my opinion to myself unless they ask for validation. He’s giving them all the time in the world to learn more about it, to understand it, and to make their decision. I applaud him for not pressuring them into something. She’d still need medication because it’s a joint therapy, and it could take 2 years to start working. It’s also more effective in people who have an aura and know a seizure is coming. Then either they or the person they tell runs a special magnet over the implant to activate the stimulator and reduce or stop the seizure. Kendra has no warning - she just drops. And she wouldn’t be able to recognize a seizure aura or tell anybody else anyway.
The plan at this point is to wean her off one of her 3 seizure meds, the Kepra, keep her on Onfi and a lower dose of Lamactil, and transition her to Depakote. The hope is that after the transition, which can be a little rough, we will be able to take her off everything except the Depakote. We know from our personal experience, (Katie with her Valproate Acid Syndrome and Kendra with her Spina Bifida), that Depakote is the worst one a woman can take. However, we also know from Jenny’s experience that it has been the only medication that stops her seizures completely. When (or if ever) Kendra would be able to want a family, she should also be mentally capable of discussing that were her personal physician. Realistically we don’t see that she will ever be able to do that, but hope springs eternal.
She also had a prescription for suppositories to stop prolonged seizing. The doctor changed that to a nasal spray. She doesn’t have enough muscle tone around her rectum to keep the suppository in long enough to do its job. He wrote two scripts, one for home and one for the school to have on hand.
We just want her to get through second grade in school at this point. Her developmentally delays and epilepsy, we have just had confirmed, are permanent. She will be able to learn, but she will never be even close to being able to live an independent life, not even in a specialized setting for people with disabilities. That was heartbreaking to hear but we’ll deal with what God gives us, keep working with her, and keep loving her. Knowing this will make every new word, every new activity or every new milestone she gets even more of a miracle.
So now you know what we know. And I’m going to hit my computer for some research! Thank you again for all the thoughts and prayers. You are all awesome!
and she graduated high school and she just graduated college in May with an associates degree. And she can also read books ridiculously fast and you don’t even think she read them but then she can answer any question about it. Loves Shakespeare. Pretty sure she’s read all the plays. Some multiple times. Loves to read and they read books all the time and even have a family book club haha and she is super into musicals right now too. She is a happy, healthy young adult. She even gives talks on epilepsy at schools and stuff so she’s somewhat of a public speaker now too and she even made a promotional video about epilepsy with Julian Edelman. This is the girl who supposedly was stupid and could never learn and would never walk and talk. Now a college graduate and public speaker. And I also heard another similar story recently of someone’s brother who they also told would never walk or talk and he just graduated college too. So never give up hope. 
