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Thread: A little update

  1. #1
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    Default A little update

    Kathleen saw her GI Dr. this week and we talked about her butt pain and she's had some burps that are very forceful. Butt pain could be the crohn's but not likely since I haven't seen any blood. She has a skin tag which could have been a fissure that is healing, or could be gas, this can cause some very sharp pains. I'm thinking maybe gas since she also has the terrible burps. He suggested trying a probiotic. We'll try this before he does any scopes to check into it further. I'm all for avoiding putting her under anesthesia for any scopes if we don't have to. He also did some blood work, checking her celiac numbers since they were high that last time he checked. I'm praying that they have normalized because I just don't know how much more careful I can be about the gluten.
    We went back to the orthotist for her brace, and they made some adjustments again as per the physiatrist. She wore it for a little while(we're just working on the right one till she gets botox in her left ankle) and would not wear it again. She had lots of excuses that didn't make sense to me but in the end it didn't feel good on her leg. I had the pT at school look it over ahnd watch her walk in it and she wrote a very detailed not that I can bring to the orthotist. It states all the problems with it and says it really needs to be recasted and start fresh. So we do that this week hopefully but means at least 2 weeks before she can wear it again. Botox will be on Nov. 21st so I'm hoping that will help the left brace feel better.
    In general she's feel pretty good most days. Some days she comes home a little early but Thursday and Friday she made it all day. We had a party for Kelly to celebrate passing the Bar and Kathleen had a ball!! She is a real party girl. She got people up dancing to Just Dance on the Wii.
    Mary Grace

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    Kathleen's celiac numbers are still a little elevated. This means she's getting small amounts of gluten still. It an be frustrating since products can label gluten free even if there is cross contamination in their factory. It can also be my preperation of food but I try so hard to be careful about that. They will test again in 4 months hopefully I can get those numbers down.
    Mary Grace

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    Wow, you are juggling a lot of complex issues. I am so glad that everyone had a great time at the party for Kelly! Congratulations to Kelly and the whole family - passing the bar is HUGE!!!!!! I think about you so often and I sure hope and pray that these latest challenges get fixed with the minimum of disruption and pain for Kathleen. Hopefully the botox will help with the AFO comfort. Nick had both feet done and serial casting, but his tone is so high, it didn't do anything. I've heard it works wonders for lower tone kids though! Donna x
    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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    Thanks Donna, She has a pretty complicated health history, starting with the moyamoya at 5. She has a list of specialists. But she's feeling so much better than she was last year at this time I truly thankful for that. She has some great dr's too are very proactive and help get to the bottom of any of her issues. They know her well enough to know she doesn't complain unless it gets really tough to handle.
    We are so proud of Kelly!! Thank you...
    Mary Grace

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

    Is there any correlation between a gluten free diet and gas? Does Kathleen eat gas-producing foods? Would something as simple as Beano help her? A probiotic might be a good way to go. Can Kathleen eat yogurt, or cottage cheese with live cultures?

    I hope you can get the AFO sorted out soon and that the botox helps.

    Congratulations again to Kelly ~ so glad that you all enjoyed celebrating her major accomplishment.

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Rose, Kathleen's diet I suppose could produce gas, she eats a lot of fruits and veggies. She is also a mouth breather and may be taking on a lot of air when she eats. She loves yogurt and eats Greek yogurt everyday. She's been getting the probiotic everyday now also. She's only mentioned butt pain a couple times and it was very brief. She has some burps still I can't tell yet if they've lessened. We don't have an appointment till the 25th for Kathleen's brace. She gets her botox on the 21st so maybe we can even have the left brace rechecked too. The botox doesn't work immediately so I don't if we will be able to get her heel into it that soon. Walking without her braces really tires her quickly. Tuesday she had a neurology appointment and we walked around the hospital and the parking lot quite a bit, I took her into school afterwards and she had to come home about an hour later she was exhausted and could barely sit up. She ahd gotten her period too that morning so it could have contributed. She took a nap for almost 2 hours. I can't remember when she last slept in the middle of the day. Getting gluten makes her exhausted too. The most difficult thing is not knowing which of her issues is causing her problems. They all have such similar symptoms.
    Thanks for all your support and input.
    Mary Grace

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

    It is so difficult to isolate the cause of symptoms with multiple diagnoses. I do understand that frustration. And when I try to narrow it down with Jon, I realize that it might not be just one thing. It might be a combination of things.

    I noticed that you are receiving great support on our Gluten Free forum. I'm so happy they are there as a resource for you.

    Praying you can figure it all out, and that Kathleen feels better and less fatigued (don't forget hypothyroid contributes to fatigue too!).

    Love & Light,

    Rose
    Mom to Jon, 47, (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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