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Thread: Thwarting the system!

  1. #1
    Distinguished Community Member andromeda31's Avatar
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    Default Thwarting the system!

    Hello!

    Caitlin is doing much better lately! Eating is still off, however, I notice the 'junk food' seems to go down just fine so I guess I won't worry too much. Still is pooping good too so yay for that! I'm going to stick with 1/2 cap of miralax every other day....more than that is just too much for her. I don't want to fear putting white shorts on her! LOL! Anyway....I always love when I can beat the system, lol. I got an email yesterday that her test results loaded into the online system...these were from July 31, two weeks old data. Well, hadn't heard anything from the doctors about them so I checked them out and her depakote was a bit low. There is a function where you can chart or graph data from that test result...just need to click on the button. So I did that just so I could see all her depakote values over time....and it pulled ALL the data including the newest from one week ago and yesterdays draw!! So COOL!!! This means I don't HAVE to wait 2 weeks or call around to get the info, just log in, look at an older date and click chart/graph and it will pull ALL the data including the newest results even though they are not supposed to load non-system doctors until 2 weeks after the fact. YAY!! Even better, last week she said she felt 'shaky' two different times. Both times she was not observed to be seizuring but in the past when she has said that she typically would have a big one shortly after. Well, after seeing last weeks depakote level, it explains that! It was down to 72 last week! Her happy range is in the 80-90's. I had suspected the depakote was off when she told us that and was debating calling neuro and asking to go up on her evening dose but now seeing that yesterday's depakote level was 81, I am glad I don't have to call. And she has seemed much better this week so that explains it all. I am thinking it was just adjusting yet to going up and down on all the meds. Hopefully it has evened out and will remain in the proper range, and I am so glad that I have a way to easily monitor those ups and downs. She is also now halfway off of the topamax, and have not had ANY psycho rages since getting to the halfway point! I KNEW it was the cause of the behavior issues. It was just like with the keppra rage she had on keppra. She had early PT this morning and did great! PT said this was the hardest C worked in a long time. I was glad to hear it. I am glad things are leveling out and she can start school on a good note this year! Excited to be getting her new AFO's next week, hoping I can find 'off the shelf' shoes to go over them. We had good luck last yr at payless, they have a lot of wide shoes there. Gotta go work on piano with Tyler, that is a whole 'nother struggle....

    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!!

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa & Caitlin))))))

    Well, that's good news! YAY! Yes, I've heard that Topamax can be an unpleasant drug, and I'm so happy that Caitlin is getting off of it and doing well.

    Good for you for figuring out how to thwart the system, which gives you the information, which you should get automatically anyway as soon as it is available, since you are her mom and caregiver. Okay. I'm projecting a bit here, because I can't get information for Jon. Why are our children's test results top secret requiring a security clearance? I just don't get that.

    So glad for you and Caitlin that you sorted out the Depakote levels. These things change daily (I know that since Jon has had daily levels taken in the hospital over 40 to 46 day visits.) So the level we have today may or may not be the one we have tomorrow, or next week.

    I know blood draws are a pain in the tushie, but it is good to know this information as you go along with increasing one drug, while decreasing another.

    Starting school on a positive note sure sounds good. I'll pray that all continues to go well for Caitlin.

    Sometime in the future, I'll hire you as a consultant to help me wade through our medical On Line Portal. Of course, first I need a new computer, and then I need to download the software to even begin that process. I'll check in with you around Christmas.

    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.

  3. #3
    Distinguished Community Member tic chick's Avatar
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    hello everyone !

    i don't post here, but i do read here from time to time. i feel as if everyone at bt is part of my "family" with different members in other forums being cousins who live in another city.

    i am the medical power of attorney for my mother who has been in a nursing home for 4 and a half years and now has advanced dementia. i am a caregiver even though i am not involved in the day to day ebb and flow of my mother's life. she hasn't remembered who i am for about the last year. i always like to read about the different perspectives of caregivers.

    rose, i saw your line above,
    Why are our children's test results top secret requiring a security clearance? I just don't get that.
    i see lisa's little caitlin is only 11y/o. even though jon is your child, he is 42 and an adult in the eye's of the law. the HIPPA laws are very strict as to who can get information about an adult's medical history. when my mom had early dementia and was forgetting recent info rapidly, i would go to the doctor with her and identify myself as my mom's advocate in health issues and the doctor would ask my mom if it was okay for me to be in the room when he discussed her problems. of course she always agreed. i knew further memory probs were inevitable so i had my sister-in-law write up a medical power of attorney form to have my mother sign. it would become active when her primary care physician and psychiatrist signed it and agreed that my mother could no longer understand or make rational decision's about her health care. it gives me the same power she would have over her medical care.

    now to my point. rose, since jon could never sign medical power of attorney papers, have you gone through the social service system and had you and your husband declared legal guardians of jon? that would make it so much easier to get jon's test results and have the final say-so in his medical care. i read your thread where you were concerned with jon's 9 vial blood draw and how you had to bargain with the nurse about some future tests. this is the only reason i can think of why you would have probs in certain areas of jon's care. of course, the doctors know your expertise in jon's condition and the little bumps that happen when his drug levels are off and other probs he has. from reading about the doctors trying to find the cause of jon's anemia, it seems like they are following some sort of protocol to diagnose a patient and treat them. if you had guardianship, you could refuse certain tests and get medical info for jon easier.

    if you have guardinship or something similar, (different states, different laws) for jon already, then i don't know why you are having such a hard time getting info in certain areas of jon's care. if you don't have guardianship or something similar, maybe that is something to look into?

    may God bless everyone and all your children that He has entrusted in your care for this earthly journey,
    jeannie
    Last edited by tic chick; 08-17-2012 at 07:05 AM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

  4. #4
    Distinguished Community Member andromeda31's Avatar
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    Interesting about the distribution of information (test results etc). When caitlin turns 12, I will no longer have access online to her data thru my own personal medical account. Right now when I click on the family tab, all my kids names show up and I can click on them and see all their stuff. A nurse reminded me of the age limit a week or 2 ago when I had called the nurseline for the constipation issue. I said, 'well I plan to just get her her own login and (I will) use it to login and see'. lol. Not sure how quite legal that all is, probably not at all, but how would they know it wasn't her logging in when she lives with us? I was thinking about that since that nurse said that...like would I need to get a power of medical decisions already over her if they have a low age limit on online viewing of records, is it that way for other stuff? Anyway, Rose, I would be happy to help with the online medical stuff...before kids I was a computer programmer so it's nice to put it to use once in awhile! :) Disclaimer...I am a sucky teacher though! Here is a laugh for y'all...signed my kids up for sunday school tonight and put myself down as a volunteer to help teach this year! (now that Logy is older). Pray for me! LOL!!! I tried this once before when I was pregnant with caitlin...and it was a first grade class with only boys in it...it was like a free for all, don't know how I survived it! Hope I do better this time now that I have kids of my own I think I have a better chance of keeping control over the class. Time will tell.

    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!!

  5. #5
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Jeannie))))))

    Thank you so much for your thoughts.

    The issue for us does not relate to my authority to know the information about my son, it is that our doctor's office is overloaded with patients and is not communicating properly with me on critical matters relating to Jon.

    I am not Jon's legal guardian, but my authority as his representative has never been questioned by any medical professionals or any agencies providing Jon with services. Of course, the same held true for my son, Michael.

    Many years ago, I consulted our attorney about conservatorship and legal guardianship. His advice was that, as long as I was recognized as the authority in Jon's care and welfare, legal appointment was unnecessary and would add a burden to me of reporting to the court every time something happened with my sons. He said that he would apply for a Guardian Ad Litem, if the need ever arose, where my authority was questioned.

    Our problem is with communication between the doctor and me. He is just overwhelmed with his practice, and his assistants are not keeping up with the slack.

    Thank you again for your advice and observations, for they are very sound for many people, who find themselves in that situation.

    ((((((Lisa))))))

    Our On Line Portal has the same age limit deal, and I don't understand why parents can't be the ones to follow their children's health until the child reaches 18.

    That's another issue for me, in that technically, Jon is supposed to go to his doctor's office, fill out a form giving me permission to serve as his surrogate on the Portal, sign it, and hand it to the doctor, who then forwards it to someone, who then authorizes it, and then, I'm allowed to sign up. It is ridiculous!

    When I spoke to Jon's doctor's nurse about this roadblock, she said, "Just sign up as Jon." Well, if that's what she's advising, why don't they have a special category for folks like Jon, or elderly patients, who have caregivers? We could sign up under THAT category, rather than lying. What a concept!

    Meanwhile, all of this is moot, because I can't even access the Portal, until we fork over a wad of dough to buy a new computer. Don't worry. You have a while, before I test your teaching skills.

    I'm sure that you will be a smashing success as a Sunday School teacher, as you have plenty of experience under your belt now!

    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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