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| Snoozing in the hospital waiting for a discharge! How stinking cute is he?? |
The great news is that we were able to meet today with Luke's new doctor, Dr. Weisenberg. She is very direct and a great listener. We were concerned about increasing one of Luke's medications because the current medications are clearly not working. She agreed and we are immediately going back down to our regular dose. We started his new drug, Onfi, tonight. The scary thing about it (well some of the scary things!) is that some of the side effects were things we typically watch for as pre signs of seizures - clumsiness, extreme drowsiness, drooling...so that makes it even trickier to determine if he is having seizures or about to start having seizures.
One of the reasons that provoked my hate post yesterday was the way his seizure presented Saturday night. My mom was watching the boys while Dan and I ran down the street to grab a drink. I told Grandma 'Ancy (both boys drop the 'n' in Nancy!) that she shouldn't talk to them because they'll both talk as long as she'll let them. Luckily in true Grandma fashion, she ignored me and was having a good old time talking to the boys. Ben - who was NOT tired - fell asleep pretty quickly. Luke was pretty chatty, though, and she and Luke were having a fun little conversation. As she was talking, she realized he had stopped responding. She looked at him and noticed his eyes were deviated and he wasn't returning conversation. She immediately called us and we were home within 5 minutes. As soon as we saw him, we knew he was indeed having a seizure. We were able to administer the emergency drug while calling 911.
On a normal night, it would have been me in bed with the boys. I sleep with Luke every night while Dan watches the monitor. When I put them in bed, I usually read a book on my phone or Kindle and remind them to be quiet so that they will fall asleep. If it would have been me in there - I have no idea how long it would have/could have taken for me to notice he was having a seizure! He never threw up after that seizure which is how we find out a lot of times he is having a seizure. As he is seizing, Luke's blood oxygen starts to deplete. It usually takes a little while but either the seizure or his head position begins to compromise his blood oxygen. We have always counted on him throwing up during his nighttime seizures to alert us to a problem. So we were even more anxious to bring him home because nighttime is a scary time in our household.
He was hooked up to the pulse ox machine during the night because he went into a second round of seizures and his O2 levels were dropping. I mentioned to the nurse that I wished we could have something like that at home and she said a lot of epilepsy families use them. I've looked for nighttime devices before but they are mostly for seizures with movement involved - Luke has ZERO movement. Zero. Anyway - long, long story with discussion back and forth - but Dr. Weisenberg sees how something like that could bring us some peace of mind and is going to have her nurse start looking into how we could get one to use while he's sleeping. Truthfully, if we got one it would only really detect a seizure if he's been in it for awhile because it usually takes awhile for his O2 levels to drop. But at least it would be able to tell us that his breathing was reaching dangerous levels. It's better than what we have now - which is nothing!
So all in an all...Dr. Weisenberg is a hit. AND even better - we're still seeing Dr. Smyser in 6 months to check in, too. Best of both worlds! Yay!
Fingers crossed that the saying '3rd time's a charm' is inaccurate and they really meant '4th time's a charm!' Go Onfi!!
One of the reasons that provoked my hate post yesterday was the way his seizure presented Saturday night. My mom was watching the boys while Dan and I ran down the street to grab a drink. I told Grandma 'Ancy (both boys drop the 'n' in Nancy!) that she shouldn't talk to them because they'll both talk as long as she'll let them. Luckily in true Grandma fashion, she ignored me and was having a good old time talking to the boys. Ben - who was NOT tired - fell asleep pretty quickly. Luke was pretty chatty, though, and she and Luke were having a fun little conversation. As she was talking, she realized he had stopped responding. She looked at him and noticed his eyes were deviated and he wasn't returning conversation. She immediately called us and we were home within 5 minutes. As soon as we saw him, we knew he was indeed having a seizure. We were able to administer the emergency drug while calling 911.
On a normal night, it would have been me in bed with the boys. I sleep with Luke every night while Dan watches the monitor. When I put them in bed, I usually read a book on my phone or Kindle and remind them to be quiet so that they will fall asleep. If it would have been me in there - I have no idea how long it would have/could have taken for me to notice he was having a seizure! He never threw up after that seizure which is how we find out a lot of times he is having a seizure. As he is seizing, Luke's blood oxygen starts to deplete. It usually takes a little while but either the seizure or his head position begins to compromise his blood oxygen. We have always counted on him throwing up during his nighttime seizures to alert us to a problem. So we were even more anxious to bring him home because nighttime is a scary time in our household.
He was hooked up to the pulse ox machine during the night because he went into a second round of seizures and his O2 levels were dropping. I mentioned to the nurse that I wished we could have something like that at home and she said a lot of epilepsy families use them. I've looked for nighttime devices before but they are mostly for seizures with movement involved - Luke has ZERO movement. Zero. Anyway - long, long story with discussion back and forth - but Dr. Weisenberg sees how something like that could bring us some peace of mind and is going to have her nurse start looking into how we could get one to use while he's sleeping. Truthfully, if we got one it would only really detect a seizure if he's been in it for awhile because it usually takes awhile for his O2 levels to drop. But at least it would be able to tell us that his breathing was reaching dangerous levels. It's better than what we have now - which is nothing!
So all in an all...Dr. Weisenberg is a hit. AND even better - we're still seeing Dr. Smyser in 6 months to check in, too. Best of both worlds! Yay!
Fingers crossed that the saying '3rd time's a charm' is inaccurate and they really meant '4th time's a charm!' Go Onfi!!
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| Attempted selfie with my other little monkey who I was excited to see....this is why I don't take selfies. Well, one of the reasons. I took 3...this was the best one! |
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ReplyDeleteI was diagnosed of tonic-clonic grand-mal seizure 30 years ago. It became a life of medication for 15 years. My job was affected; I was no longer permitted to drive. I went through pains of depending on someone to help me up everything the seizure came. To avoid further injury to my spine, and head injury, i started using wheelchair. My legs were perfect, but the frequency of my seizures, made my doctor suggest a wheelchair to save me from further injuries resulting from falls. Seizures were hell, but the medications I was placed on, became a serious battle. Complications, severity of pains, it also affected my Liver. Couldn’t stop because, of what might happen if I do. I lived in fear for years. I was caged, by epilepsy. What I enjoyed doing was taken away from me by seizure. I became desperate for a cure. I believe when one is pushed to the wall, the only option is to fight back. I went everywhere, foundation, made friends, listened to stories, went online searched blogs and read comments. God favored me when I saw a blog that mentioned a Herbal doctor that his medication cured a lot of people. I visited his blog and contacted him.
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HERBAL MEDICINE: OUR BREAKTHROUGH
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