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Thread: Caitlin update!

  1. #1
    Distinguished Community Member andromeda31's Avatar
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    Default Caitlin update!

    Hi!

    Just thought I would post something! :) Caitlin is currently on depakote & topamax. It has been working well for her...except, we keep increasing the topamax and we will get 4-6 wks of good times, then her body adapts or whatever and seizures return. Right now, we think she is due for another increase...I just emailed her neuro so we'll see tomorrow what she thinks. C has been paler than normal, not using her left hand as much and it looks curled up when seizure meds aren't working, falling asleep on the bus in the afternoon and is difficult to rouse and is more ornery than she usually is (other people commented that they noticed it). I guess she was unusually sassy in sunday school and also in pt this week. While it was still working good, I did get her into sears to get a new picture finally! I copied this from their viewer (that is why there is the sears watermark on it)...didn't pick up our real copy yet. It turned out awesome! :) It is crazy busy here with running kids to classes & appointments...C is still going 1x/wk for pt. I am still angry about it, but have a plan! The state's argument was that she should get some at school....WELL....there is no school in summer (yes, ESY, but that isn't PT)...so we are going to ask for 2x/wk for the summer. Wish me luck! I am still going to get letters of medical necessity from her drs and from the principal that the school doesn't provide it in summer. (I am of the opinion that school is for academic, I prefer her to get her PT privately so I am glad school doesn't do much PT...we have a great time slot currently, I bring her at 7am and then drop her off at school so she doesn't miss anything-it works great for us!). For me, I am looking forward to this weekend....I have my annual scrapbooking weekend away! I am more than ready for a break! But that is a topic for a whole 'nother post (respite?)....

    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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    Distinguished Community Member andromeda31's Avatar
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    Forgot to add....I actually haven't put much about this on fb...trying to not put as much on there about Caitlin's medical stuff....the day to day ups & downs. Need to get back in the habit of putting that stuff here! :)

    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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    Her picture is great. She is so cute.
    Carrie mom to Amanda my new angel 12-29-07.NO LONGER DXD Multicystic Encephalomalcia, Acryptic CAH, Loved to watch mtv hits, wrestling, 3 stooges, Andy Griffith and Spongebob Square pants.

    And Josh 21 year old brain.

  4. #4
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    More update! Yay! When I got home from my retreat, checked my email and the neuro nurse had sent a reply....we are to increase her topamax (evening dose) and get levels drawn in a week. I am also to schedule an EEG for 2-3 wks out so they can double check how she is doing. I kindof wish they would do one before (like now before increasing the meds) and then after the increase to make it all 'scientific'. But I am glad they okayed the increase as she still looked like she did on friday before I left and I thought there are 1-2 instances of a drop seizure during suppertime. Well, off to the treadmill to walk off all the yummy food I ate at the scrapbooking retreat! (It is my one weekend I have away every year without kids!) :) I feel refreshed and ready to deal with real life again!

    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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    Hey Lisa.


    Miss Caitlin looks so pretty in the photo. She is such a sweetie.

    Hmm, sometimes she gets ornery. Can't be. You must be thinking of someone else Of course on a more serious note her change of mood could be caused by a drug.

    We hope that the increase in meds will get rid of the nasty seizure activity.

    Best wishes as always of course and please post here, which is the place to be, so there!

    Paul, Alison and Grant the champ.
    Grant's story in pictures and music. A must see :)
    http://www.youtube.com/watch?v=fiZGlwj6VCQ
    Seeya there :)

  6. #6
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    Caitlin is adorable! Growing up so fast!

    I'm so glad that you had a good time on your scrapbooking weekend. That's a great idea to get away from it all, and remember that you are YOU as well as Mom.

    Some thoughts on the meds ...

    Topamax and Depakote are known to affect moods.

    High levels of these drugs can cause the same kind of symptoms as levels, which are too low. Toxicity can promote seizures, drowsiness, lethargy, mood swings, etc.

    Depakote: affects the liver; often causes anemia; affects sodium levels; affects blood pressure (lowering); can increase ammonia levels in the blood.

    I have about a thousand years of experience with this drug, as both of my boys have taken it. Both experienced (Jon still is) these side effects. They are common.

    Before you increase or decrease either drug, I strongly recommend that you have blood levels drawn. What is Caitlin's therapeutic level on these drugs? A baseline drug level to establish that would be helpful for future blood levels.

    Through the years, I've established that Jon's Dilantin therapeutic level is 11-13. If he goes to 15, he has symptoms of toxicity. Below that, he seizes. But his Depakote therapeutic level is 32, which is below the range of 50-100. If he goes up to the 40's, he is drowsy, or he is agitated and has insomnia.

    So, it's good to know a baseline, and it's also good to know what you are dealing with before you alter a dose.

    Trough levels are best ~ blood draw about an hour before the next dose is generally a good trough level time.

    A periodic check of liver function, anemia, ammonia, albumin, and sodium is important.

    Sufficient water intake throughout the day is also needed to flush the liver.

    I hope that this is helpful, and I'm praying that Caitlin's seizures abate altogether.

    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.

  7. #7
    Distinguished Community Member andromeda31's Avatar
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    Thanks Rose! :) I'm taking Caitlin tomorrow morning for her blood draw...have to go thru the ER as it will be on sunday morning and the lab isn't open that early. I am hoping they can get it in her vein right away. Last draw was quite an ordeal (and we ended up going to the peds hospital floor and it still took 2 different nurses!). All depends who is working! I was worried since I didn't have the order yet, but it came in the mail today thank God! We can only go on the weekends for draws as with 4 kids it is too hectic on a school day morning. Her depakote level is typically 70-80ish. I won't allow them to increase that drug as a long time ago when she was only on that and they had her at a higher dose, her hair started falling out. It was bad! And of course I felt like they perceived me as a crazy complaining mom then! Not sure what her typical topamax range is as that is her newer drug (I think it was fall when we started). Depakote, she has been on since 2008. The nice thing is going thru our local hospital for this is I can access the results online, often before the dr in Milwaukee gets them! Nice! :) I automatically get an email when the results are loaded. I wish all her stuff had online access like that! We did increase her topamax on sunday (so it will have been a week tomorrow)...she dramatically improved right away! And I don't tell her that she is getting more, they are sprinkles mixed in applesauce so she can't tell there is more or not..so no placebo effect on her part. Much better at school, not falling asleep on the bus in the afternoon and is way more perky and much better attitude. The nice thing is I booked her EEG in April....they were booking that far out. But it works out well as by the time that comes around, if she follows the same pattern of increase, 4-6 good weeks then decline...that will be right when she is in decline again so we will be able to see what is going on when she becomes tolerant to the increase. So it all worked out in the end so far! If she continues to follow this pattern, we will have about 4-5 months until she reaches the max dose of topamax and we will have to do something else. Trying not to think too much about that. Felbatol is next on the list last time I talked to her dr and there are many many negatives with that that do not thrill me (weekly blood draw, dosing 3x/day, major side effects, etc)....praying it doesn't come to that!!!
    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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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Had the blood draw done this morning, man it was a party in the ER! LOL! All the old folks were swarming in for blood draws...so glad we got there early, we were first in line. Also as we were waiting, my neighbors came in! The wife hurt her hand while they were playing basketball with their grandkids the night before. Didn't get to chat though as they brought her (neighbor) back right away. We got called shortly after. Took 2 pokes, which for Caitlin is pretty good! She has small roll-y veins I've been told. Typically it can take many more tries than that! We were even pretty much on time for church! We got there right after the children's sermon ended and the kids were going off to sunday school so I just wheeled her right back to her classroom. Am curious what the results will show but that will take a few days....

    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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