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Thread: Rose?

  1. #1
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    Default Rose?

    Hi Rose,
    I'm thinking about you and hoping everything is OK at your house. Love DonnaX
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Smile

    ((((((Donna))))))

    Thank you for thinking of us! Everyone is fine at our house.

    Jon is flowing and going, with excellent vitals. He's stylin'! And when he's fine, we're fine.

    How is everyone in your family? I hope you are all well.

    Maybe we can start a trend here, and others will drop by to check in? That would be nice.

    Keeping you in my prayers and sending positive energy your way ~

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    Hi dear Rose,
    Well, we increased Nick's valproic acid by a little yesterday to try to calm the night seizures. But today he had another one of his reactions which we're pretty sure now is related to the valproic. He's on it 3x per day and he used to be 300, 300 and 400. Now he's on 400 3x per day. Not a huge increase, but he got nauseated, very pale, very lethargic, all vitals dropped, etc. It's a pattern and a nasty one. He fell asleep afterwards. Anyway, I'm going to see him now after I drop Jim at the airport which is nearby where Nick lives. Jim is off to the UK to a conference for a couple of days. Anyway, I'll post again to let you know how Nick does overnight and tomorrow. Love to all my friends here on CN2 and I sure wish more folks would come around. I'll post on the CN facebook page to rattle a few cages over there :) xoxD
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  4. #4
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    ((((((Donna))))))

    I'm so sorry to hear that Nick is seizing and now reacting to the Valproic increase.

    My thoughts:

    1. Is Valproic Acid the right med for the types of seizures Nick is having now?

    I know that it is prescribed for a variety of seizure types, including tonic/clonic (which is news to me today in my researching, as it was not noted for that seizure type previously). Typically, it's given for absence, drop, and complex partial seizures. But it's now being used to treat bi-polar disorder, schizophrenia, migraines, etc. so, I guess it's a catch-all drug these days.

    2. Based on my experience, a 200 mg increase is a fairly good sized increase all at once.

    Unless we get a really low blood level on either Valproic Acid or Dilantin, we don't increase by a large amount at one time. We tend to increase one dose at a time, and at a low rate to work our way up. We do the same when the blood level is high. Unless it's toxic, we don't do a drastic reduction. And we do it one dose at a time over a period of days to ensure tolerance.

    If Nick's episodes are associated with an overload of Valproate, then he's going to react negatively to a large and sudden increase. It sounds like he is very sensitive to this drug, so maybe going at a slower rate of increase would help you discern when he's getting a dose where he is balanced ~ not having the nausea episodes, as well as not seizing.

    3. What about drug interactions?

    Is there a correlation between the time the Valproic is given and the time other meds are given? Is Nick taking Valproic on a full stomach? This drug is harsh on the gut, so food needs to be in the belly when it's given.

    We have a minor problem with that, as we have to hold Jon's food 1 hour before and 1 hour after his Gtube feeding to give his Dilantin. And we give his Pheno and Valproic at the same time. Jon doesn't seem to react. His gut isn't empty, because he's fed 18 hours a day. But if it became a problem, we'd change the times that we give his Valproic, so it would be apart from the Dilantin. We've given them together for 17 years, so I guess he manages okay with it, as did Michael.

    4. Slower bowels and lower urine output affect med levels.

    Have you noticed whether these episodes occur when Nick's bowels aren't moving as well as they could be, or when his urine output is a bit lower than normal?

    5. Have Nick's gallbladder and pancreas been checked out?

    Valproic Acid can affect these organs. A friend of our friend has been in ICU since 1/13, in a coma, on a vent, on dialysis, with acute pancreatitis. His was caused by gallstones. But in researching this disease, I discovered that it is a rare side effect of Valproic Acid also.

    The word "rare" really gets me. When doctors say, "It's a rare side effect," I respond by pointing to my son, "Well, he's rare."

    In fact, my boys are so "rare," we don't even know what caused their overall condition. Not a single clue. That's rare.

    So, just because we don't have enough things to worry about, now I'm thinking about this! But, it is worth keeping tabs on ~ liver function/kidney function, and amylase and lipase. Just a blood test. And we've been doing that for years, and I know that he's had enough scans and x-rays of his abdomen to reveal any abnormalities. The problem is that this kind of thing can also come on suddenly.

    Has Nick been checked to ensure that he doesn't have a small kidney stone that he's trying to pass, or a gallstone?

    Those are my thoughts for now. If I think of anything else, I'll let you know.

    Prayers for safe travels for Jim and a great conference, and for healing for Nick and your mum, and for strength and energy for you as you keep it all together for your family.

    Love & Light,

    Rose


    P.S. Yes, by all means! Rattle cages! We miss everyone! Please check in!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  5. #5
    Distinguished Community Member andromeda31's Avatar
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    I have been sick with the flu
    And it hit Logy and Brian too
    Stuck on the couch, fever 102
    What should I do?
    On Monday saw the NP
    Said, no antibiotics for me
    Your sinus infection is viral
    I wanted to give a big eye roll!
    Now I’m still coughing and hacking
    Still on couch, fever 99
    Face is in pain, sinus inflamed
    Wishing I could jump forward in time
    (and be healthy again!)

    Seriously though, glad that Caitlin has escaped this one for now! I think it was (well, still IS) flu B as we had the confirmed flu A 2 wks ago. Logy's teacher said it is going thru their classroom and he was patient 'zero' here this time. She sees current neuro next week, but has done well since the felbatol increase when she had her flu in jan. So I will be vetoing any changes if they recommend any....because we also have an appointment scheduled in April with a new neurologist! Yay! Glad to hear Jon is well and sorry to hear Nick isn't! Hope Nick adjusts fast to the med increase. Caitlin is really sensitive to changes in her depakote too. Well, I think the kids are sleeping now so I can lay on the couch and finish my movie. I sound like a 20 yr pack a day smoker so I am sleeping on the couch again tonight, Brian did the past few nights so it's my turn to let him get some good sleep though he is still miserable too. How many days until spring.....

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  6. #6
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    Thanks guys for the info and for the support :) and Lisa, I have been thinking about you so much. Boy, your house has been like plague central for too long! Gosh, I hope you all get better and stay better SOON!!!! Nick had a bad bad reaction today and tomorrow we'll review the medications. He had one of his nausea episodes and it was accompanied this time with eye rolling, drop in respiration (10), lower blood pressure, 116/60 and sats of 92 awake. Then he fell asleep and was really out of it four hours later - just really quiet and couldn't quite get his voice out. Still pale and sleepy. So odd! Rose, I think it's seizure related, but I think it's related to having too much valproic. Anyway, we'll call the doc tomorrow after I confer with the head nurse. The whole thing started today about 4pm. I'll keep you all posted. Love you and all your treasures. xoDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  7. #7

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    Hey all. Short update: turned 21 on the 6th. Have been using BT since I was 14 so that makes me feel old! Celebrated here in Australia with my family (esp my dear twin brother) and a few close friends who flew over from New Zealand. we celebrated by going to the casino in a limo and having a lovely buffet meal there. Then my best friend James and I went gambling for awhile before the limo brought us home. He flew over specially to celebrate with me which was very special as we have been best friends for 10 years now. I fly back to NZ on Monday to prepare to start my fourth year of a law/arts (sociology) degree. I have been invited to complete my law degree in honours over the next 2 years after retaining an average of 80% last year so i will begin pursuing that. It will be a very busy and stressful year but worth it all in the end hopefully. Other than that I am continuing to learn how to navigate the world with my family living in another country. My twin moved to Australia late last year so it really is just me now. I miss them but get to see them every couple of months and I do enjoy the independence though I must say some responsibilities one bears as an adult SUCK.

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    Wow, I didn't know your family moved, Erin! I knew everything else, but I wasn't aware that you were living on your own. Yes, all that 'groceries, doing your own laundry, cooking, not mention paperwork of LIFE'. Yuck, it is a pain. So it's an extra tribute to you that you achieved such wonderful grades even while living as an adult. Congratulations! I remember when you were posting here as a teenager in high school and James was your friend. I'm glad he's still your BFF. It's great to have old friends who have shared so much, it's great having the history. Nice to hear from you! xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  9. #9
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    ((((((Lisa))))))

    Oh my! Poor You!
    Struck by one flu
    And then by two!

    I think you should sue!
    Ah-choo!
    God Bless You!

    I know you feel crappy, Lisa, but that was quite a clever poem! At least you still have brain cells and a sense of humor.

    I'm so sorry you've all been afflicted unendingly by these blasted bugs! I've started praying for you all to get healthy quickly and stay that way. I recommend increasing your Vitamin D intake by a 1,000 iu. If you take a multi vitamin with D, then you're getting the average daily recommended amount, but during winter and cold/flu season, you need more Vit. D. It boosts the immune system. Vit. D3 cholecalciferol. It works for me and Jim.

    Also increase your fruit and veggie intake, and reduce your meat intake. I'm not preaching vegetarianism. Meat takes a long time to digest and metabolize. That's energy-depriving. During flu season, we need our energy to fight off viruses.

    Do you have a vat of Vick's Vapo Rub?

    Have you ever tried a sinus lavage? Jim has had sinus issues for many years, and he has a little machine he uses to wash out his sinuses when they get clogged. It works for him, and thankfully he hasn't needed it for quite awhile.

    Do you like Indian food? It's full of wonderful, healthful herbs and spices, and even the mild curry will open up your sinuses and help you sweat out the infection.

    Glad to hear that Caitlin escaped this bug and that the Felbatol increase has been working. Hope the new neuro is perfect!

    Feel better very soon, sweetie.

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  10. #10
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    ((((((CPChick))))))



    HAPPY BELATED 21st BIRTHDAY!!!

    Your birthday celebration sounds like a lot of fun! How wonderful that James flew over to celebrate with you! What a great friend James is!

    Congratulations on your honours study for your law degree! Awesome!

    You've sure come a long way in 7 years! It's been wonderful to share in your journey and watch you grow into such an accomplished young woman. Independence is great, but it is a lot of work.

    Safe travels home for you!

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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