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Thread: Question???

  1. #1
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    Default Question???

    First a little background. Kathleen started taking Oxybutynn about 10 days ago. Last week her physical therapist noticed that her right leg was bloated, she noticed because she was checking her right foot (which she wears an AFO on) for a blister that has appeared twice in the last 3 weeks(before the med change). I noticed yesterday when she got home from school when I took her brace off that it was swollen again. I asked her PT to check it this morning during therapy, it was swollen again so she had her put it up and the swelling went down. It just seems to be mostly her right leg. She had a checkup with her PC on the 9th and she had gained 6 lbs since her last visit with her ortho about 3 weeks prior,not sure if it has anything to do with the bloating but the weight gain occurred before the med change. Not sure if the med. has anything to do with it, it seems strange that it's one leg.
    Any ideas????
    Mary Grace

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Mary Grace))))))

    I'm guessing it is dependent edema. She may be retaining fluid in both legs, but it more prevalent (or pronounced or apparent) in the leg with the AFO, because the AFO is constricting the leg or causing pressure on the leg. Likely the blister is also related to the water retention in that leg, as the swelling in her foot would create an environment for abrasion.

    Kathleen could be retaining fluid, despite her urine output. Jon has chronic fluid retention, even when his output is more than usual. That could also explain her 6 lb weight gain. It could be water.

    Her med can also cause fluid retention, as you know.

    That's my best guess.

    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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    Hormones can cause fluid retention. It might also be the AFO. Maybe she needs a bigger one?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Saw the urologist yesterday. Good news is her kidneys were clear!! This was the biggest goal for her surgery so hopefully this means they will remain clear when her bladder is empty. We saw her brace guy and he casted her for 2 new AFO's (one of the AFOs connects to make a KAFO that partt is still fine). They were both tight. I haven't seen her leg get bloated over the weekend and her dry mouth hasn't been bad. So the urologist is keeping her on the med. for spasms and hoping her body is adjusting to it. It seems like it's working and has stopped the accidents between cathing. And she has felt great overall. BUT over the weekend(Sunday) she started to cry about butt pain really bad pain and has lasted for a few days(felt a little better today) I mentioned this and the dr.asked if she either had her period or could be ovulating. It is the exact time she would be ovulationg. These are 2 times when you can have this kind of severe pain from your gut right down into your butt. It shouldn't be more severe from bladder spasms on the medication if the meds are controlling the accidents. This really makes sense especially since we know she gets ovarian cysts too. I will log when they happen and when they are severe. Not sure if there's anything we can do about it if it's related to her cycle. We would try Naproxen sodium(aleve) but there are cautions about use with asprin, strokes, and intestinal issues. This pain over the last few days was debilitating and I know she's had it this debilitating before on and off. It's all so hard to sort out there's so much going on in her poor gut and she can't give me many details. She did say her belly was "big" and she was warm. The investigative work continues...
    Mary Grace

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Glad that you got some good news! Hopefully you can figure out if there is a pattern to her pain by logging it. I get migraines "monthly", but it took writing them down to figure that pattern out. Not sure why I never put 2 and 2 together on that sooner, but oh 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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    ((((((Mary Grace))))))

    Hooray for the clear kidneys!

    Interesting that the doctor stated that it could correlate to ovulation. I can't recall experiencing pain in my posterior during ovulation, and I did have ovarian cysts for many years. Perhaps it is "referral" pain, which is pain felt in a location other than the actual site of the pain.

    I know this sounds very basic, but could it be pressure from gas? Gas pain can be horrific sometimes.

    Poor Kathleen ~ if it isn't one thing, it's another.

    Hoping that the log gives you the clues you need to relieve Kathleen's pain.

    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 Lisa and Rose. I'm so glad her kidneys and bladder both looked good. Also that she's in general feeling so much better than last year. I've looked into the butt pain before because she's had it for so long. It defintly went along with having a catheter and bladder spasms after surgery but it wasn't quite as bad it would kind of come and go and be relieved by Advil and the meds she was taking. The past few days though it was almost all day long even woke her up during the night crying. There are so many things going on in her gut and all of them can cause pain that she might feel in her bottom. I've read that it can be from endometriosis and ovarian cysts. Many women described it as being quite a severe pain. Rose it certainly could also be from gas. , know that can be quite painful. It can also be from the crohn's. Another puzzle, maybe logging it will help me to figure it out. She felt way better today only mentioned it a couple times and it wasn't bad pain.
    I'm very thankful for how good she feels now after the 2 surgeries and how well she's adjusted to cathing and the cecostomy. I'm hoping that sometime soon I can teach her to do the catheter herself.
    Mary Grace

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    No butt pain at all today. She's feeling great today.
    Mary Grace

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

    Hope the pain stays gone and Kathleen remains feeling great.

    All of our organs are jammed so close together, it's sometimes difficult to isolate which one is the pain-causer. But you're wearing your Number One Detective Hat, and I have faith that, if a reason can be found, you'll find it.

    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 Rose, That's exactly what the Dr. said, everything is so close it's difficult to isolate the pain. Everything she has going on could cause this pain. I'm hoping logging it will shed some light and it's an easy remedy. My greatest concern is that it has to do with her menstrual cycle. Not too many options as far as treating that. If it doesn't seem to be menstrual related I will probably talk with her GI Dr. We may need to check to be sure her crohn's isn't acting up. She had a fantastic weekend! No pain at all. We had a full weekend too. Saturday she had a football game then we had a family wedding. She was the life of the party. She danced without a break for 3 hours.(I'll try and get a picture up) She danced with anyone and everyone. she was going around taking peoples hands to dance. I was preparing myself for her to crash when we got home. Before her surgeries she would crash after everything she did. It would exhaust her and she would cry and just want to go to bed. What a great surprise when we got home about midnight she was still happy and feeling great. Then the next day we had our annual Buddy Walk, she practically ran the whole mile. life is so much better than the past 2 years have been.
    Mary Grace

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