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Thread: What Is Next For Jonathan?

  1. #111

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    Maybe it's CBD time.

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  3. #112
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    callyflower ~

    I began researching CBD oil and Dilantin and Depakote, and the results were discouraging. CBD oil can interact with various AEDs (and other medications). With Depakote it enhances the risk of liver damage. With Dilantin, it can cause a serum elevation.

    I'm simultaneously surprised and not surprised. These two drugs interact with many medications, including antibiotics, diuretics, Synthroid, other AEDs, and on and on and on. I figured that CBD, being plant-based, would have less impact on pharmaceuticals. But, it is medication after all, so it makes sense that it interacts with other meds.

    If it had been available, when my boys were young, I would have tried it in a heartbeat. Now, Jon has been on these meds for far too long to even contemplate weaning him. I'm sure he'd have a tonic clonic, and we'd likely lose him to a horrific seizure. This is something we think about every time we pour his meds into his G Tube. We are stuck.

    No seizures last night. Jon fell asleep at 1 a.m. Jim got up at 2:30 to relieve me. We are hovering, and this is quite stressful.

    I just remember 2012, when Jon was in ER after a 3 hour tonic clonic, filled with Ativan (administered by us) and Versed (administered by paramedics). His entire body turned blue. He has to have a different trache placed for ventilation, and the RT was all thumbs. He was dying, and I was hysterical. She finally got the trache in, and he was hooked up to the vent. Slowly, he came back. That he didn't suffer any brain damage, to our awareness anyway, is astonishing.

    Although Jon is a big, strapping man, who many physicians would refer to as "young," he is quite fragile, and he is contending with a wide variety of ailments. What might work for thousands of others, may cause him a problem. Like a blenderized diet of whole, organic food via his G Tube. It made him very ill.

    So, we are not going to introduce CBD oil, as much as we long to do so. We know everything about him, as we're with him 24 hours every day, and we provide his complete care. We realize the risk is too great. If his Dilantin levels go up, he becomes toxic. Then, he stops breathing.

    The expression on Dr. C's (GI) face, when I told him that Jon doesn't have a neuro, spoke volumes. He didn't have to say a word, and he didn't. He was disappointed in his colleagues for abandoning Jon, and astonished that we have to make these decisions without professional advice.

    I told him that Dr. H (our pulmo, who we love) gave us carte blanche with Jon's meds in 2011. I insisted on blood levels taken every day with the morning blood draw. When the results came in, I went over them with his ICU nurse. Then I called Jim at home (it was my shift at the hospital), and we discussed the dosage adjustments to his meds for that day. It changed every day. And he didn't have any seizures in 47 days, while being pumped full of antibiotics. Dr. H was impressed.

    It's disappointing that we can't try CBD with Jon, but we accept this as part of the journey with Jon. We have to make the best and right decisions for him. He trusts us to do that, and we made a promise to protect him.

    Nothing about our lives is easy. Never has been. Never will be. But we persevere.

    Thank you for your suggestion, as always. Did you take your vay cay? I'd love to hear all about it, and see photos if you have them (bet you do!).

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 07-18-2018 at 04:36 PM.
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  5. #113
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    callyflower ~

    I began researching CBD oil and Dilantin and Depakote, and the results were discouraging. CBD oil can interact with various AEDs (and other medications). With Depakote it enhances the risk of liver damage. With Dilantin, it can cause a serum elevation.

    I'm simultaneously surprised and not surprised. These two drugs interact with many medications, including antibiotics, diuretics, Synthroid, other AEDs, and on and on and on. I figured that CBD, being plant-based, would have less impact on pharmaceuticals. But, it is medication after all, so it makes sense that it interacts with other meds.

    If it had been available, when my boys were young, I would have tried it in a heartbeat. Now, Jon has been on these meds for far too long to even contemplate weaning him. I'm sure he'd have a tonic clonic, and we'd likely lose him to a horrific seizure. This is something we think about every time we pour his meds into his G Tube. We are stuck.

    No seizures last night. Jon fell asleep at 1 a.m. Jim got up at 2:30 to relieve me. We are hovering, and this is quite stressful.

    I just remember 2012, when Jon was in ER after a 3 hour tonic clonic, filled with Ativan (administered by us) and Versed (administered by paramedics). His entire body turned blue. He has to have a different trache placed for ventilation, and the RT was all thumbs. He was dying, and I was hysterical. She finally got the trache in, and he was hooked up to the vent. Slowly, he came back. That he didn't suffer any brain damage, to our awareness anyway, is astonishing.

    Although Jon is a big, strapping man, who many physicians would refer to as "young," he is quite fragile, and he is contending with a wide variety of ailments. What might work for thousands of others, may cause him a problem. Like a blenderized diet of whole, organic food via his G Tube. It made him very ill.

    So, we are not going to introduce CBD oil, as much as we long to do so. We know everything about him, as we're with him 24 hours every day, and we provide his complete care. We realize the risk is too great. If his Dilantin levels go up, he becomes toxic. Then, he stops breathing.

    The expression on Dr. C's (GI) face, when I told him that Jon doesn't have a neuro, spoke volumes. He didn't have to say a word, and he didn't. He was disappointed in his colleagues for abandoning Jon, and astonished that we have to make these decisions without professional advice.

    I told him that Dr. H (our pulmo, who we love) gave us carte blanche with Jon's meds in 2011. I insisted on blood levels taken every day with the morning blood draw. When the results came in, I went over them with his ICU nurse. Then I called Jim at home (it was my shift at the hospital), and we discussed the dosage adjustments to his meds for that day. It changed every day. And he didn't have any seizures in 47 days, while being pumped full of antibiotics. Dr. H was impressed.

    It's disappointing that we can't try CBD with Jon, but we accept this as part of the journey with Jon. We have to make the best and right decisions for him. He trusts us to do that, and we made a promise to protect him.

    Nothing about our lives is easy. Never has been. Never will be. But we persevere.

    Thank you for your suggestion, as always. Did you take your vay cay? I'd love to hear all about it, and see photos if you have them (bet you do!).

    Love & Light,



    Rose
    Rose, I'm so glad you are super careful about introducing new things to Jon's body. CBD can still change the brains signals so its still worth being careful with it. WOW! 3 hours?! I didn't know a person could have a 3 hour seizure and still be alive. Jon's extremely lucky. Perhaps they can't check fully for brain damage because of Jon's existing neurologic issues? I have heard of seizures that are way shorter stopping the heart. I know your love is why Jon is still alive. Prayers for no seizures!!!
    Last edited by funnylegs4; 07-18-2018 at 06:26 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  7. #114
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Jon had a 6 hour seizure, when he was 13. As an adult, he's had numerous tonic clonic seizures lasting 45 minutes to 4 hours. It takes a lot of drugs to stop the seizures, then he gets pneumonia, is vented, and so on.

    Jon had 3 seizure-free days, until today, when he had a 5 minute seizure at 3 p.m. We decided to return his morning med doses to their original doses. That was a mistake. So, we'll stay at these increased doses for awhile.

    John was here yesterday to turn Jon. We hadn't seen him in about 10 days. Jon was so happy to see John. His next visit will be Sunday morning, because that afternoon, John and his family are taking a week's vacation in Palm Springs. It will be about 115 degrees every day. I couldn't do that. But his whole family (sister, in laws, and friends, etc.) go every year. It will be in the upper 90s here next week, so they might as well be at a Palm Springs resort.

    Jim and I will be on our own, and thankfully, Jim is gaining weight and getting stronger. So, we should be able to turn Jon.

    Jim has an infusion on Wednesday. We have to plan everything around that.

    We pray that the increased meds will keep the seizures at bay. We'd rather he be sleepy than seizing.

    Thank you all for your love, prayers and continuing support. You are in our prayers too ~

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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