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Thread: A new Blog Post about Advocating for Care Plus update on Nick

  1. #1
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    Default A new Blog Post about Advocating for Care Plus update on Nick

    Hi guys,
    Nick has had two seizures in a row, yesterday and today. What a drag. His seizures make him very nauseated and then very sleepy. Plus he had bad apnea last night and de-satted to 80. Today, I brought him for bloodwork but it was 10:30am and he had had his tegretol at 9:30 so they said to come back later in the afternoon. We went back but Nick seized on the way there. I knew by looked at him and he was frozen - then he was sick. I hope that they can get these things under control SOON - our neuro said that if the levels are low, he'll increase. If not, we'll go back to keppra instead of the valproic. Re the timing issue, I always thought that you could do a blood draw anytime and that they just wrote down the time of the last dose of the med. Nick was stable for so long that I don't remember ever before having to go for the bloods at a certain time.

    Anyhoo, here's a new blog post on how to advocate for care - writing is my respite! lol xoxoDonna

    http://www.donnathomson.com/2013/03/...re-part-1.html
    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 andromeda31's Avatar
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    Hi Donna!

    Sorry to hear about Nick's seizures...(((hugs))). For Caitlin, they always like to get the trough level for bloodwork though in emergencies, they just take it at the time. So it's probably good to have waited a bit if the doctor will be making dose changes based on the results. Will Nick's insurance pay for the keppra if this med fails him? Also, great blog post topic! It's hard to think about what is really needed, we looked into respite care a few yrs ago...filled out all the paperwork and everything and qualified for 300 hrs/yr! I never used it though. It really wasn't what I needed. Caitlin is not really that hard to care for right now, she goes to school all day so I really don't feel the need for a break. What I really need is couple time with Brian. We are good at doing things separately to get breaks from all our kids (that is what is really needed, not just a break from C, lol!). He has hunting & I have scrapbooking. I just would like to get out more as just 'us'. I am actually thinking about hiring the neighbor girl to watch the kids so we can go out to eat for Brian's bday and see how that goes...if it works out well, maybe doing that once a month or so. I figure if I put Caitlin to bed at 7pm and have her come over then, she would just have to corral the boys and I could get them a movie to watch while we're gone for like 2hrs or so....start small! The nice thing is in a few yrs, Brandon will be old enough to babysit the other kids...we have a few restaurants close by that we could be gone, but not far away! I have some events coming up that I would like to have a sitter we like so we can both attend. I just remember talking with the social worker one time when she called to see if I had hired anyone for the respite hrs....she was like well we could have someone come and do C's baths for you but I thought well that only takes about 15-20 min and that would feel weird for me to have someone come in to do just that and it honestly wouldn't really help me any. Anyway, done rambling now, time to shred the turkey for hot turkey sandwiches tomorrow! Hope everyone has a good weekend and hope Nick feels better and can make it to the game!

    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!!

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    Awww, thank you, Lisa!!! I admire you so much for your unbelievable energy and just, I don't know, indefatigable optimism and 'keep going no matter what' attitude! You inspire me all the time. Yep, I think it's important to have couple time, that's for sure. We hardly ever had it, but that was because of Jim and his choices about his job. He's a workaholic and he travelled all the time. We had very little time together, but for us, we survived and now that Jim is retired, he's really really bonding with the kids and they are loving it! It's funny how life goes. Thanks for the prayers and good wishes about Nick's seizures, I hope he gets better soon - this can't go on. Sending love your way! 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


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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna & Nick))))))

    I haven't read your blog post yet, but wanted to weigh in on the seizures and blood work.

    Like Lisa, we always go for trough levels, and that may be what Nick's neuro is after. The trough level gives an indication of how the body is utilizing the drug. Doses are usually scheduled around trough times (like every 8 hours, or every 12 hours), so that's when the body will have used up the drug, needing more. I do think that it makes a difference, and it is always how our boys have been tested for blood levels of their meds.

    I am so very sorry that Nick is having seizures, and I know how worried you are about him.

    Valproic is known for being hard on the gut. I don't know that much about Keppra, but changing back to it might be a good thing, if the Valproic is the source of his gut problems. Something to consider.

    Please keep us posted on the blood levels and the neuro's suggestions, and I'll be praying for the seizures to stop for Nick.

    I'll be back, when I have more time, to discuss you blog post, which I'm sure is outstanding, as usual.

    Take care of yourself and give our love to Nick (keep plenty for yourself too!).

    Love & Light,

    Rose
    Mom to Jon, 49, (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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