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Ulcerative Colitis
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Posted 1/9/2013 3:43 PM (GMT 0)
Hello All,

I have an 8 year old daughter, Mary-Mak, who was diagnosed with UC in the summer of 2010. She was hospitalized for a short time over that summer and was put on Pentasa, prednisone, azathioprine and Remicade infusions every 8 weeks. After a hard battle she was finally said to be in remission in August 2012. The doctor decided to wean her off the pentasa and azathioprine because the Remi seemed to be working so well. Within a month of being taken off the other meds she had a flare. She was given Asacol and it seemed to lessen her symptoms for a while but not she is having more pain and bleeding and her labs came back again that she is having another flare. It is so hard to watch her cry because her tummy hurts and she has to run to the potty so often. Today is her first day back at school in several days and I am beside myself. Her teacher is eonderful and I know she will be watched after and that she needs to be in school when possible but it was hard to let her go this morning. Have any of you other moms found anything that helped ease the tummy pain for your little ones? I can tell that she doesn't feel well and I hope I am doing the right things to help her. Mommy's heart is breaking for her.

Posted 1/9/2013 3:52 PM (GMT 0)
It's horrible seeing your child in pain and there's nothing you can do about it :( I'm not sure if children can take it or not but you can ask her doctor for an anti-spasmodic such as Bentyl. Also heating pads work good too. Hang in there momma!
Posted 1/9/2013 3:53 PM (GMT 0)
Oh and if she isn't on rectal meds, you might want to start her on one. This can help heal the rectal/sigmoid area.
Posted 1/9/2013 3:54 PM (GMT 0)
Thank you Sherry. I had actually called the doctor this morning to see about an anti-spasmatic med. I am waiting to hear back. They also said that I could give her Tylenol.
Posted 1/9/2013 3:57 PM (GMT 0)
So sorry you are both going through this. I have no idea why any GI would think that tylenol will help an achy spasmodic bowel - that seems like a throw-away answer IMO.

While she's trying to get past this flare you might give her some really easy-to-digest food (low residue) and make sure she's getting enough rest. I agree with rectal meds and also are you giving her any probiotics? Is it time to increase the remi?
Posted 1/9/2013 3:59 PM (GMT 0)
Wagongirl, sorry to hear of your daughters pain. :(

Have you asked her doctor about the benefits of taking probiotics?

VSL#3 (vsl3.com) is a probiotic capsule containing 112 billion live active bacteria. This brand comes in a Junior form, for kids.

Have you starved off sugar, processed foods, dairy and artificial sweeteners? Sometimes these can be an irritant. Chicken broths and homemade soups are a soothing food. Chamomile & peppermint tea may help settle the stomach too.
Posted 1/9/2013 4:01 PM (GMT 0)
Thank you kazbern! I agree on the Tylenol. I didn't understand how that would help much either. I have often thought about the Probiotics. I think I will try that again. The last time that she got Remi they increased it because her Remi levels seemed to be getting too low between her infusions. I was so hoping that would help.
Posted 1/9/2013 4:04 PM (GMT 0)
Eating very small meals can help too. Sorry and hope she feels better.
Posted 1/9/2013 4:48 PM (GMT 0)
I have a little one diagnose three and a half years ago now so I know how hard it is and I'm sorry you and your daughter are going through this. I agree with the suggestions for home made broth, chicken soup, rectal meds if you can, and if it's possible maybe you can look into a diet like the scd? I know that's not right for every family/child though...
Posted 1/9/2013 6:56 PM (GMT 0)
Sorry to hear about your little one. It kind of sounds like you have been just following what the doctors say. There are treatments which actually work that the doctors don't usually mention such as probiotics, natural supplements, and dietary changes. The only problem is something different works in everyone so it is major trial and error. I have an 8 year old and a 6 year old. I really hope this doesn't happen to them. I came down with my UC after they were born so hopefully they didn't inherit genes that were already bad. My six year old is always complaining her tummy hurts but we can't find any evidence of anything at all to even take her to the doctor. She complains about it hurting one minute and then she plays for several hours like nothing is wrong then when she stops she complains again. Her bowel habits and stools seem totally normal. We think she just has gas, hunger, constipation or whatever.
Posted 1/10/2013 5:41 PM (GMT 0)
Just an update from yesterday. Mary-Mak had a terrible night last night. She was up almost every hour having to poo and crying because her tummy hurt. She is having her infusion right now and I am praying that she experiences relief TODAY!
Posted 1/10/2013 6:08 PM (GMT 0)
nothing hurts us as much as having sick kiddo's - sorry -
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