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Thread: changes med doses again

  1. #1
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    Default changes med doses again

    Since Kathleen still seems constipated (goes very small amount about every 3-4 days). she still doesn't have control either and it's usually an accidenet. I don't believe she has the sensation of needing to go. Something I need to discuss with her DR. We're increasing the Amitiza to 24 mcg. in the PM. Hopefully it won't cause diarhea. The ciproheptadine (for pain) is still making her very hungry even at half the dose she was taking, so now we'll cut it in half and give half in the AM and half in the PM to see if it helps with the hunger. It has helped with the nerve pain but she still gets some pain by about day 3 of no BM. She starts school next Tuesday so hopefully this will al work well for her. She's so excited to start high school.I
    ve already talked with her TA who's been with her for 2 years, she's pretty excited also. I think we're gettting closer... We've requested an appointment at the Down syndrome clinic at Boston Children's Hospital. They will coordinate appointments with a pediatrician, dietician, hearing test, urologist,and orthopedic dr. Just waiting for the date.
    Mary Grace

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

    I'm praying for these med changes to work effectively to produce good BM's and curb Kathleen's appetite.

    The appointment at Boston Children's sounds like a real thorough assessment. Hope you are able to go there soon.

    Wishing Kathleen all the best in high school!

    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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    Well the larger dose of Amitiza was too much (messy loose BM's) So I went back to the smaller dose, I would rather she start school constipated instead of diarhea(what a choice huh). After the long weekend called back the doc who wants her to take a dose dose that's falls in the middle of what we've done. BUT here's the problem... It needs to be compounded into a liquid in order to get this dosage. Not many pharmacys can do this. I found 2 so far but they will not bill her secondary insurance for the copay which can be quite high, not even sure yet if our primary insurance will approve it.
    On a good note she started school yesterday and loved it. Her TA said she did awesome and talked a lot and showed her pictures from summer to her teachers and tlaked aobut them. Her TA texted me twice durring the day just to say she was doing good. Thank god for a loving and caring TA who makes school fun for her.
    Mary grace

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    Hi Mary Grace, well it's lovely to hear that Kathleen is loving school. Thank goodness! I hope you get there eventually with her gut situation, it's so complicated. Good luck to you both.
    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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    Best of luck with the dosing. Not knowing when you have to go sucks. I had an experience with that once. Yikes!

    So glad to hear she likes school! That's awesome!

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