DawnA Posted May 15, 2005 Report Share Posted May 15, 2005 I hope things go good for Marissa, so she is able to Dance. My thoughts and prayers go out to her. Are you hooked up with the support forum for those with J-tube? I can get you the name of a good one if you are interested let me know. I just have to email a friend.Has your daughter ever been evaluated for Mitochondrial Disorder? I ahve friends with very similiar problems who have it. Maybe the mitochondrial cocktail would be of benifit to her. I am taking Co-Q10 and to my surprise it helped significantly with my dysmotility. Of course don't have her take anything without her Drs permision. Has she ever gone to Cleveland Clinic? I hear it is a wonderful place to go. Sending good thoughts your way.DawnA Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted May 16, 2005 Report Share Posted May 16, 2005 WE'RE BACK!!!!!!!We made it throught the weekend!!! She did wonderfully!!!! We did 2 irrigations a day and she was "ok"!! Her eating has greatly dimished and that will eventually become a huge problem as the pounds start pouring off. But, the GREAT news is that at her 1ST Feis, she placed first in her age group for the Jig and 2ND in her age group for the Reel!! She was elated!! We had no expectations since this was her first time trying!! It was wonderful just seeing her dancing her little heart out!! We got her a "big girl" wig. When she tried them on when her dance school ordered them, they were too big and heavy. Now, they are fine. She is so proud!! Now I don't have to spend an hour curling her hair in soft spikes rollers the night before (it about KILLED me!!)!Thank you SO much for all the prayers!! Yes, she has been on ERY, no response. Not been on ocetreotide, but I thought that was for slowing things down?? Will ask about the CoQ10. Cleveland Clinic does not have anyone who specializes in motility issues in children that's "better" than where I'm at. Our drs trained theirs. So, I still feel stuck. I may take her out of state. I have no idea. She doesn't have a J-tube, she has a cecostomy which is actually a Mik-key button (she calls it a Minnie since she's a girl) in her large intestine at the beginning (cecum) so that we can do antegrade enemas (enemas to gravity). We use a feeding bag and hook it up to her button and put it full of whatever cocktail of laxatives they have her on at the time. Currently, she is on GoLytley and Bisacodyl. She also takes 3 laxatives by mouth. All are at adult dosages. She needs the button to PUSH the stool out because she can't on her own. Her motility in her colon is basically non-existant.I got a HUGE migraine on Sat afternoon, but at least got to enjoy all her glory. Just missed celebrating at dinner. I took 2 shots of Imitrex, and then my hubby had to give me a shot of Toradol. Now, my migraine is coming back in FULL force. Yippee!!Thank you ALL for all your prayers!! Marissa is still soaring on cloud 9!!!! Quote Link to comment Share on other sites More sharing options...
lindaf Posted May 17, 2005 Report Share Posted May 17, 2005 Mary, I was so happy to hear how well Marissa did dancing. It must have been so joyous to see her so happy and win! I hope your migraine goes away asap. You are both in my prayers. Linda Quote Link to comment Share on other sites More sharing options...
blackwolf Posted May 17, 2005 Report Share Posted May 17, 2005 glad things went well, and sorry for the headach.congrats to Marissa for doing so well.blackwolf Quote Link to comment Share on other sites More sharing options...
danelle Posted May 17, 2005 Report Share Posted May 17, 2005 Mary, it's good to hear that things went well for Marissa I am sorry aobut your migraine, I know how bad they can be for you. Hang in there and I will keep you both in my thoughts and prayers, as always.Hugs,Danelle Quote Link to comment Share on other sites More sharing options...
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