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Thread: can't wait for monday!

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    Distinguished Community Member andromeda31's Avatar
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    Default can't wait for monday!

    Hi!

    <sigh> I can't wait for monday!! We have been having major behavior problems with Caitlin lately. I have noticed a pattern of when we increase her topamax, she is good for a few weeks, then as it stops working, we see horrible behavior. It annoys me that the doctors do not take the behavior seriously. The last day of school before the 4th of July break, she hit one of her aides at school. We see that stuff at home too. And today at PT, she told her PT (who we've been seeing 'forever'- over 6yrs) that she hated her and tried to hit her. PT actually ended the session 15 min early as C was acting up that bad. On monday we go to children's in milwaukee to have a VEEG for at least 2 days. I am hoping she is a candidate for surgery. If they can locate one spot causing seizures, they will do it. These meds are just not working for her and it is so frustrating that they dismiss the bad behavior. If she were more mobile, it would be a serious problem...when she is saying that stuff she is really meaning it and if she could actually act on her threats I don't know how I would handle it, much less expect school or other people that work with C. In May when we saw her neuro, she said to me when I was telling about the behavior we are seeing, "we don't believe you when you tell this". I don't blame her as C is always perky and happy when we go there for a checkup...but I find it annoying that I am asking for help with this matter and is that what they all are thinking?? It is not only me reporting this. Anyway, I asked her PT to send me an email about changes she has noticed and I hope to have her teacher from school send me a note with their observations. I've been stressing about this, just had to vent. I did get away tonight, took Brandon to see hunger games at the cheap theater...loved it! I have read the first book already, but not #2 & 3 yet. At least my weekend will go by fast, got 12 yards of mulch in the driveway...lots of shoveling for me to work off the stress!

    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 Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    First, Grrrr! at Caitlin's neuro for saying she doesn't believe you about Caitlin's behavior issues! Why would you lie or exaggerate about such a thing? Oh boy, that perturbed me (in lieu of a stronger word)! How dare she say that to you!

    Good idea to get the PT's and teacher's observations of her behavior and changes to give to this neuro. The problem is then documented by others beside you. Although your word should be sufficient. More Grrrr!!!

    Is there any possibility that the Topamax is increasing the anger and behavior issues? It is a side effect of that drug, as I recall from reading about others' experiences with it.

    I will pray that the VEEG targets the location of Caitlin's seizures and that surgery will be a viable option. I will pray for answers.

    I'm glad you had a chance to get away for a movie with Brandon. But shoveling mulch in hot weather sounds rather unappealing to me!

    I'll be thinking of you and Caitlin on Monday and Tuesday, and looking forward to your update, when you return.

    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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    Hang in there. Hoping the veeg gives them some viable answers and new options. I hate to hear the word surgery but sometimes its the only option or the best option.
    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.

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    Oh gee, that is so frustrating! Great idea getting the PT to write an opinion on Cait's changed behaviour. Too bad we have to resort to the opinions of 'professionals' because our observations as parents are not valid. Good luck, my dear friend. And I hear you about getting the stress out shovelling mulch. My garden is my salvation! I love hauling rocks :) xoxox
    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 andromeda31's Avatar
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    Thanks everyone! Yes, I wasn't sure if the doctor was kidding or not when she said that. And I was too surprised at her giving notice. :( Her last day there was the end of May so I am not really sure who we will be seeing yet for neurology. I looked at their website today and saw that there was another doctor missing off the list too. Hopefully they will be hiring some more so they can give the appropriate amount of attention to their patient load. The chief neurologist left last year so I wonder if that has something to do with the other doctors leaving. Oh well, we are stuck going there. Got half of the mulch shoveled...great stress relief! Blisters on my hands, but the backyard is looking great! I bought a lot of new shrubs last year when they were clearance...like $5 a shrub...so it will be a lot easier for Brian to mow the lawn instead of trying to weave between them all. Off to relax a bit...hope you all are doing well!! :)

    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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    Whew, only one more day to get thru. I do think it has something to do with her meds, most likely the topamax since she's been on the depakote forever (since 2008) without having problems from it. I took Caitlin to the library today to pick out movies to bring along on monday...we made it just in time as the library was closing in 10 minutes! I had a lot of other errands to run after that so I told her I would buy us each a slushee at Tom's (a local burger place). I had a feeling I should go to dairy queen instead but ignored it....kept on driving down the road and went to Tom's. Went thru the drive thru to order....and the guy said their slushee machine broke that morning! So we went on to Hobby Lobby to shop for baby shower stuff and while we were there she went into meltdown mode. It is always around the same time of day which last yr at the VEEG then they said she was clustering in the afternoon. I wonder if that is what is going on now to cause this as it is getting rather predictable for her to tantrum around 2pm every day. She had to suffer though as I went thru the whole store anyway! LOL! I was on a mission to get the stuff I needed and be done. When I got home, I couldn't find the ribbon spools in the bag. :( Haven't had time to check if I was charged for them yet or not. But it is a bummer to think I may have to run way out there again though the lady said they would be on sale next week. After HObby Lobby, we went past the other dairy queen so we did get our slushees eventually! She did not drink very much of hers though, her eating seems to be a bit off this week. It has been 7-8 wks since her last med increase so it will be perfect for capturing data this week...if we didn't have this coming up I would have been calling in complaining about all this to go up again on the topamax already. Ran a few more errands after we were done at the DQ and by the time I got home I had a huge headache. The excedrin is finally kicking in right now...debating if I should go back in myself as I just finished antibiotics for a sinus infection and I am still having quite a bit of sinus pressure anytime I have to bend over. I have to finish the baby shower invites tonight, don't want that hanging over my head while I am gone this week. Trying to think of a cute way (like a poem or something) to create an insert saying where she is registered and that instead of gift cards she would like a book for the baby? Any ideas?? :)

    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 Earth Mother 2 Angels's Avatar
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    ((((((Lisa & Caitlin))))))

    How does 2 p.m. correlate to her med times? Is it peak or trough time?

    I seem to recall that Topamax affects appetite (as in suppresses it).

    Interesting that so many neuros are leaving the practice. I wonder if someone has bought the practice? If it's under new management?

    Perhaps this will be a good thing for Caitlin. New docs mean fresh eyes and minds viewing/studying/diagnosing her. And maybe they will approach you with a different attitude. I do hope that the neuro was being flippant with her remark; otherwise, I shall hiss and boo her some more!

    Hope your sinuses clear up. Did you overdo it with the mulch and yard beautification project?

    No ideas here for your shower invitations. What kind of book does she want for the baby? Does she want every guest to give her a book? Where is she registered? Those questions popped into my rather weary brain, as I was trying to come up with a clever idea to help you.

    Prayers go with you and Caitlin to the hospital.

    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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    Oh Lisa. I don't have any ideas for the baby shower, I'm hopeless for ideas tonight. But I sure do extend a hand from one mother to another to YOU. I just remember being in the same situation so many times...for example, shopping for wedding decorations for Nick's EA at school - the list was so long and I decided to feed the kids at the McDonalds in Walmart and Nick had a seizure and no one helped. Poor little Natalie just stood staring. Jeesh, sometimes it's too damned hard. Good luck my friend with all that you have on your shoulders. Have you finished shovelling all the mulch in the driveway??? xo
    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 andromeda31's Avatar
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    Hi!

    Whew, so glad for the internet so I don't have to think of this stuff myself! LOL! I found this poem on a website:
    Although cards are nice,
    They're only read once or twice.
    A book is a treasure,
    that lasts forever.
    So instead of a card to be put aside,
    Please give the baby a book
    with your name and wishes inside.
    It will be read to baby
    before bed each night,
    who will feel your love
    with endless delight.

    I changed the end of the poem, it was this: it will be read to the little tyke, before bed each night, and he'll think of you, forever and ever! I didn't really like how that rhymed much so I changed those few things...they didn't find out gender so had to take out the 'he' for sure! :) Now I just hope I can fit that on the amount of paper I bought today! LOL!

    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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    Fabulous!!!
    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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