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Thread: Getting so fustrated...

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    Default Getting so fustrated...

    I don't want to dump on you all but boy am I getting fustrated. We are STILL working on Kathleen's GI issues. We've been trying to adjust the Amitiza since May without success. The Dr. says sometimes it just takes getting a perfect dose and timing of dosage. In the meantime Kathleen is lucky to get a couple of days of not feeling crappy. Not always pain but just miserable and fustrated. She goes maybe every 5 days by day 3 she's feeling pretty bad. She's missed at elast a day a week of school and comes home early sometimes. I just want her to feel good and be her happy self again. I want this med to work because if it doesn't it will most likely mean surgical intervention. Praying everyday for that little miracle... It just kills me to see her get sooo angry and fustrated and not be able to fix her belly. She actaully said last week her belly isn't working she needs surgery on it. Thanks for listening!
    Mary Grace

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Sorry to hear she isn't having success with the new med. Have you ever tried miralax? We tried everything and that was the one thing that worked for Caitlin....and it still does! It is really easy, a powder that gets mixed with juice. Supposedly it has no taste, but I never tested that out, lol! C doesn't seem to mind it though. It is actually available over the counter too, though we get ours thru the pharmacy just so insurance pays for it.

    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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    ((((((Mary Grace))))))

    You must never apologize for posting here or think that you are "dumping" on us. We're all here to support each other through our children's crises and ongoing issues, and when you need to talk about anything, this is the place to do it. You know that we understand.

    And we certainly understand your frustration and Kathleen's distress, as it seems that some of us are contending with similar situations with our kids. So, vent away, dear friend!

    Does the Amitiza soften the stool? If not, would a stool softener help Kathleen?

    I will pray that the med works for Kathleen and that she can avoid surgery, and I'll pray for hope and strength for you.

    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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    Thank you ladies for letting me vent a bit. Rose your so right I know how you all "get it" and are dealing with similar issues. The Amitiza does soften the stool (at times too much). Lisa, we've done the miralax not even a whole bottle(done for colonoscopy preps) helps Kathleen to empty her bowels. We've done miralax daily with Dulcolax, we've tried Magnesium Citrate which didn't clean her out and gave her tremendouse pain for days. Her problem is motility her intestines just don't work well. They don't move the stool along the way they should. Stimulants cause her a lot of pain. We upped the dose of Amitiza last Wednesday (at the time she hadn't gone in 6 days) she finally went on Friday but has not gone again since then. When she does go she doenst' empty so it kind of builds up. I just called her GI back and i"m waiting to hear what the next step is. I just feel aweful when she doesn't feel well and I STILL can't fix it for her. It's been going on for so long and she misses school and other fun things that we used to do and should still be doing. Tomorrow she has a filed trip and if she doesn't go by then she won't be able to go on the filed trip :( Thanks again ladies for all the support prayers and for just listening and understanding.
    Mary Grace

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    Distinguished Community Member andromeda31's Avatar
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    That sucks! Praying she 'goes' so she can go on the field trip!!

    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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    Thanks Lisa, She still didn't go. Fell asleep pretty early with her tummy hurting and a warm towel on it. Looks like she won't make the field trip unless she goes very early in the AM :( She was pretty excited about it...
    Mary Grace

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    ((((((Mary Grace & Kathleen))))))

    Poor, sweet Kathleen ~ what an ordeal for her. I'm sure that you've tried everything to get her bowels moving, and I do know that frustration so well. You just feel so helpless.

    You've probably thought of this already, but I'll mention it ~ probiotics, or possibly yogurt or Activia. Would something of that nature benefit Kathleen?

    Have motility drugs been mentioned? I'm really not a fan of any of them, especially Reglan, but if the situation is serious and otherwise unmanageable, it's something to ponder.

    Prayers continue ~ may Kathleen wake up tomorrow morning and head straight for the loo!

    Hang in there, Mary ~

    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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    She didn't make the field trip. She had a really bad day. Just leaking poo and feeling aweful. Lots of crying in fact cried herself to sleep at 5:00. Slept really restless. Same thing today. Dr. said to give her Dulcolax last night and up the dose of Amitiza. Then half the adult dose of Dulcolax daily. The Dulcolax hasn't worked in the past but we never did it in combination with Amitiza. I have another call in to the Doc I she feels aweful.
    He has never mentioned Reglan. If it's a stimulant it may be too strong. It seems that the stronger the intestinal stimulant the more pain she has.
    Mary

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    ((((((Mary & Kathleen))))))

    I'm so sorry that Kathleen missed the field trip and that she continues to endure this misery.

    As I said, I'm not a fan of Reglan. It has some serious potential side effects, some of which Jon experienced. I just wondered whether it had been mentioned by Kathleen's doc.

    If you haven't tried probiotics, it might be worth asking Kathleen's doc about that as an option.

    Prayers continuing ~

    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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    Thanks everyone, she had an aweful weekend. She went to bed Friday afternoon and has not gotten up to play since then, only to take a hat bath or sit on the toilet. She ahsn't had a good BM in 10 days now, just some very small loose accidents. She cried most of Friday and Saturday. I had given her the Dulcolax both nights. Since saturday she's had half doses of Dulcolax. Not as much crying but VERY uncomfortable crying on and off and no real BM. The dr. was supposed to call me over the weekend and he did not!!! I beside mylself waiting and watching her feeling so awful I called the office today and the secretary was out so I sent an email. Have not heard back yet.
    Rose her Doc has not mentioed Reglan. I heard form a couple other parents (and then read reviews) that this can have very serious side affects so if eh did I don't think I'de be willing to risk those side affects. They seem to be things she would ahve a ahrd time communicating to me. She eats a lot of yogurt with probiotic but the dr. said its certainly good forher but won't fix the motility issue. Praying he calls tonight!!! She's asleep again already...


    Mary Grace

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