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  1. #1
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    I talked with Kathlee's Dr. yesterday. He changed her dose of Amitiza (for the constipation) and prescribed Periactin for the pain. Of course I've been looking at everything I can about the drug. It's an antihistimine and is commonly used as an apetite stimulant. This could be a big problem for Kathleen since she has so many orthopedic issues that could be worse if she gains weight. She won't understand that she can't eat constantly if this makes her as hungry people have said. It also seems it makes people very sleepy another potential problem since she already becomes exhausted very easily. She's starting with a very small dose (first one last night). She woke up this morning VERY irratable and had 2 hot baths within a couple hours. I've been trying to find information on this in regards to vascular respone since it's an antihistimine. We've avoided antihistimines in the past since they can be vascular constrictors. Not a good thing for someone with moyamoya. Keeping my fingers crossed I jsut hate trying new drugs there are so many things she can't communicate to me that she may feel... i'll lelt you know how this is working out.
    Mary Grace

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

    Oh dear, I am so sorry! It's so difficult to try a new drug, with all of the potential adverse effects staring you in the face. I know. Lisa's going through it too with Caitlin and Felbatol.

    We always pray for the new drug to work without any adverse effects, and we worry and fret about those effects showing up. Don't hesitate to let Kathleen's doctor know about any reactions, which you find concerning. You know Kathleen best, and your instincts are spot on. Trust your gut.

    My prayers are with 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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    Not sure how everything's working and if it's an improvement, different yes. She had a BM today firm but it was an accident and it's been 3 days since her last BM and 4days on the double dose of Amitiza for constipation). Thursday night We went to the mall and when she came home she "fell apart" fustrated, crying uncontrolably, and fianly vomitted a bit took a hot bath and then fell asleep. She woke up OK but stayed in bed for quite a while. She got up for a while and after her second dose of the new pain med Periactin(not sure if it's a coincidence ) she got VERY irratable threw a couple things crying and VERY fustrated. It took a long time to get her calmed down and into bed. This morning she was a little irratable had a small BM. I'll continue the Periactin to see if it's whats making her so irratable and fustrated or if it's coincidence. She's gotten kind of like this before when she's been overtired or not feeling well but this seemed much worse. The dosage is increaed by half a pill every 3 days so tonight she will get a whole pill for the first time, that should tell us if it makes her worse. Wish us luck!
    Mary Grace

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

    What an ordeal for both of you! I wish I knew of something to help you, but I offer my prayers and my shoulder in hope that it does help a bit.

    Given that irritability can be a symptom of the Periactin, it's reasonable for you to suspect it as the cause of Kathleen's behavior. I'm so sorry, and I feel so badly for Kathleen and all that she is enduring.

    Please let us know how she reacts to her next dose increase.

    You both are in my prayers.

    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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    It's been over a week on the meds. She had a pretty "normal" BM on Sunday so that was good. But it's been 3 days and she hasn't had another so far. The Pain med(Periactin) was making her pretty iritated and worse than that extremely hungry. She was looking for food almost as soon as she finished a meal and getting upset when I didn't get it for her. She went to the fridge the other day while I was in the shower and helped herself to a huge bowle of watermelon. I called the office yesterday and we're going to omit the morning dose and see if the aleviates the hunger and irritability yet helps the pain. She woke up and needed a hot bath this morning already but it could be pain form not having a BM in 3 days. I feel like we're running in circles...
    Mary Grace

  6. #6
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    Oh gosh, how absolutely dreadful for you both. This sounds impossible. I'm grasping at straws here, but would it be worth writing to one of the top international gastro docs like Paul Hyman to plead for help? Or the Mayo Clinic? Maybe just maybe they have interest in unusual cases and would treat for free????
    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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