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Ulcerative Colitis
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Posted 9/6/2011 3:22 PM (GMT 0)
Hello All,

I am a mom with a 6 year old that was diagnosed with UC this summer. She spent 3 days in the hospital for IV steroids and flagyl. She is currently being tapered but still on 15mg a day. Not to sound ugly but she does not even look like my sweet little girl anymore. She is so swollen and puffy. I had to go by her some bigger clothes this weekend just to get her though the summer months. Her face is so puffy that he mouth looks like it is too small for her pretty face. cry   My husband and I are struggling with emotions and watching our daughter go through this. She was doing well up until about a week ago. She is now having to run to the potty and the blood has once again returned. Any support or ideas are very much appreciated.

She has been on Sulfasalazine but taken off b/c seemed not to be touching the issue. She also tried Pentasa 500mg x 2 a day. She is now on Prednisone 15mg and Azathioprine 50mg once a day. I also am starting her on VSl#3 when the pharmacy gets her order in today.

Posted 9/6/2011 3:27 PM (GMT 0)
Poor girl and poor you. I find prednisone so hard on me and my family. Hopefully things will get better.
Posted 9/6/2011 4:48 PM (GMT 0)
I was diagnosed with UC when I was 10 and spent a good part of 7 years on prednisone.  My cheeks were really puffy and kids used to tease me and say they wanted to pop my cheeks with a pin.  I hate looking back at pictures from that time.  I was really skinny and had big puffy cheeks. I know it was really hard for my parents seeing me like that also. That being said my advice is that predisone made my life livable at that time and my parents support throughout my life has been the best.  I also know that this flare will pass and she will return to normal so the best thing you can do is support her and help her any way you can.  I remeber once my mom cried in the doctors office because I was so skinny and sick which made me cry. I know its hard not to be emotional but the best thing you can do is be strong for her.  My doctor back then was all about prednisone so hopefully your daughter wont spend as much time on it as I did.  You should try diet modification and medimucil if you already haven't.  I am now 26 and in law school and haven't had puffy cheeks since highschool.  I know it seems like a long road but you will get through it and she won't have puffy cheeks forever.
Posted 9/6/2011 4:54 PM (GMT 0)
Hello and sorry to hear about your daughter. I was recently diagnosed with this at 34 and had a very hard time accepting this and finding a healthy regimine, I can't imagine how she is feeling. Poor thing! I would suggest a natural or homeopathic doctor if you can find one in your area. I started a lot of supplements that helped me greatly and almost instantly but her being so young, you would probably be better having a doctor oversee any and all supplements. Maybe she could even tapper of the pred completely with some supplements and diet modifications. Will pray for her and your family to find some peace...
:)
Posted 9/6/2011 5:15 PM (GMT 0)
Thank you all for your posts. It helps to know there are others that are fighting the same battle.
Posted 9/6/2011 8:55 PM (GMT 0)
Hi Mom-

I am also a Mom with a beautiful daughter who was diagnosed when she was 9- it has been a battle but we are finally on the right medication and she is doing great.

I pray that thi will also happen for you daughter.

You are doing exactly what we did while on Prednisone we started 6-MP- almost the same as Imuran and we weaned the pred. while the 6-MP took over and she is doing great-

Do you like your pediatric GI? That is important- I hope you do.

That is great that you will also start her on VSL#3. I have had my daughter on it the whole time and I think it really helps.

Research and ask questions...the puffiness and extra weight gain will go away- it does take some time. My daughter was in 3rd grade while taking 40 mg a day and she looked awful and I was so lucky that none of the kids teased her or even seemed to notice.

I know how heart wrenching this is to go through as a parent- it is so hard to see your child suffer.

I really hope things turn around and that the Imuran works well for you daughter. turn

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