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Post by mg12061 on Mar 16, 2012 8:24:25 GMT -5
I haven't posted in a while but I do read when i get a chance. Kathleen has still been having GI problems. She's had another colonoscopy and the Asacol for the Crohn's seems to be getting rid of the inflamation. BUT she is still constipated and having diarhea. Even though she takes Miralax daily and dulcolax every otehr day. Last Thursday the Dr. suggested she take Magnesium Citrate after and XRay showed her bowles were full of stool and she ahd uncotroable diarhea. She took it and it was awful! she cried for days and didn't get cleaned out. We took her to the ER and they said "give her another bottle". I just fell apart and refused to take her home and do it again, it caused soooo much pain. They admitted her and gave ehr Golytely through a nasal tube . They started it and then found out her sodium levels were way to low so they stopped and rehydrated her. Started it up again and it worked. Worked. Now 4 dyas later she still has diarhea and pain. She made it to school but will probably not make it the day. She's missed so much school. What ehr GI Dr. decided was to send her to Boston Children's Hospital for more testing. She will have a test for Hirschprungs Disease for sure but i"m not sure what else. they have an amazing GI department even a section just for motility dissoreds of the GI tract. I jsut hope it doesn't tkae too long for an appointment she just can't go on like this much longer. So that's our update for now. Praying we get this figured out and there's a way to make her better.
Mary Grace
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Post by wrblack on Mar 16, 2012 11:53:24 GMT -5
Wow, what a bummer! That's got to be hard on both of you. Hope you and Kathleen get some relief. And hope Boston's Children has some good ideas and some answers. -- Bob
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Post by Emilysmom on Mar 16, 2012 22:40:17 GMT -5
Mary Grace, I'm so sorry! Kathleen has been through so much. Praying for some relief for her (and her mom too) soon!
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Post by Jackie on Mar 17, 2012 15:36:43 GMT -5
just in case...here is a good site www.hirschsprungs.info/ but imagine you have checked this out...I need to go ask these people some questions about a tiny problem Emily has been having.... |
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Post by Haleysmom on Mar 19, 2012 13:43:12 GMT -5
Do you know who you'll see at Boston Childrens? Haley's GI is Dr. Walker ~ love him!!So sorry Kathleen is having such problems. Prayers that they will find out what is wrong and help her very soon!
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Post by mg12061 on Mar 20, 2012 7:20:15 GMT -5
She will be seeing Dr. Nurko. They already have her records and he will review them and then call us for an appointment. I just pray we don't have to wait too long. She's missing so much school and feels so crappy most days. Thanks for the website Jackie, I've googles it but didn't come across that site.
Mary Grace
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Post by Chris too on Apr 2, 2012 13:17:31 GMT -5
Have you tried giving her flax oil? I mean lots of flax oil - 3 capsules 5 times a day? Has anyone suggested oil at all for this? It's wonderful for constipation because it softens the stool without causing pain. It doesn't give you gas or bloating. It's easy to take and is good for you too - Omega 3 fatty acid. Also, is she getting in whole grains - not wheat? All grains have both phytic acid and leptins that cause bloating, malabsorption, and inflamation in the gut. Take her off of all grains, including corn - especially whole grains since most of the antinutrients are in the bran. Have a look at this article: wellnessmama.com/575/how-grains-are-killing-you-slowly/ |
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Post by mg12061 on Apr 11, 2012 9:26:30 GMT -5
Thank you for all the input... Chris I read that article pretty interesting... Kathleen doens't get a lot of grain. Pasta once in a while which is rice or corn but not often. She eats a lot of crackers which are usually nut like almond. No bread, the g;uten free just isn't very good and it's very crumbly and hard to eat. The Miralax seems to loosen the stools but her intestines are not stimulated and working to push it out. It gets backed up and then it's jsut diarhea that leaks out mostly. She's done pretty good since the clean out in the hospital (almost 4 weeks ago) but now it seems to be going backward again she's getting pain and looser stools. It seems to be the pattern clean her out, good for a few weeks then gets backed up. I'm getting very anxiouse since we have not gotten an appointment at BCH. It's been a month! This morning (waiting for a call back) was my 4th call into the office. Seems he's backed up because he was covering for another Doc.
Mary Grace
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Post by Chris too on Apr 12, 2012 19:30:42 GMT -5
Poor kid can't catch a break. I'll be praying for her. (((hugs)))
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Post by Googsmom aka Jennifer on Apr 29, 2012 9:30:47 GMT -5
YEAAAAA... Dr Nurko!!!!!! He is THE MAN!!! I'm so happy you got into see him!!! The bestest of the bestest, for sure!!
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Post by mg12061 on Apr 30, 2012 9:23:40 GMT -5
Thanks everyone. We got our appointment with Dr. Nurko. and yes that's what I've heard, he's the best! He's the head of the motility clinic. She will be admitted May 7th, only a week away. So relieved but at the same time extremely nervouse. She will stay through the 9th for testing. I hope this leads us to some kind of treatment as apposed to laxitives and miralax.
Mary Grace
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Post by Emilysmom on Apr 30, 2012 19:25:00 GMT -5
Mary Grace,
Will be thinking about and praying for Kathleen on the 7th. So glad she is seeing a doc who knows his stuff! Keep us posted.
Susan
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Post by Jackie on May 3, 2012 12:35:56 GMT -5
Has Hirschprungs been definitely ruled out?
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Post by mg12061 on May 4, 2012 8:15:47 GMT -5
Thanks Susan... We're very hopeful.
Jackie, No Hirschprungs has not beeen ruled out. I beleive that is one things they will test for. She's had a problem with constipation since she was a baby. I'ts only the past year it became painful and more severe.
Mary Grace
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Post by Jackie on May 14, 2012 10:36:05 GMT -5
Have you heard anything yet?
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Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
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