Is there any support for the parents of UC/Crohn's patients?

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MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 1/27/2009 10:12 AM (GMT -7)   
My 10 yr old was diagnosed last month.  She was on 30 mg Pred and tapered off and down to zero as of last week.  She is still taking Asacol and 6-MP. WHEN will she return to "normal" from the effects of the Pred?  She is very depressed and angry that her appearance has changed (she has gained about 15 lbs) and her moods are all over the place.  I am out of emotional energy from fighting with her so much - she thinks I don't care if I make her go to school and every morning is a battle.  I let her stay home today because I just can't take the tears and fighting.  I have taken a leave from my job so that I can really be there for her.  She is not having UC symptoms right now but any little gas bubble makes her panic.  I know this is super hard for a 10 yr old to deal with and I'm doing the best I can. I just feel like it's never enough.  I am thinking of sending her to a counselor so she can talk to someone objective and learn ways to deal with her feelings. Any other suggestions?

cj2mama
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 1/27/2009 10:23 AM (GMT -7)   
It's hard for me at 28 i cant imagine how it must be for a 10yr old. When i first started getting sick i was going to school too. One day i had to go to the bathroom and someone was in there and i couldn't hold it in, i had to go home to change. i didn't want to go much after that. its hard you don't want to leave the house cuz your afraid that you wont make it or you wont be able to find a bathroom fast enough. I have 2 kids of my own and i don't know what i would do but i do know how she feels. i do see a counselor and it helps. Maybe try and find her some support groups in your area to let her know that she is not alone. good luck

MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 1/27/2009 10:30 AM (GMT -7)   
Thanks for your reply. Thankfully she has never had any "accidents" and that hasn't been an issue for her and hopefully never will :) She is upset over her appearance and that is why she doesn't want to go to school.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 1/27/2009 11:15 AM (GMT -7)   
Hi MustLoveDogs! I am so sorry you and your daughter are having to deal with this. When my son was first diagnosed he was on prednisone for 8 weeks and there was a definite personality change--along with the physical. No doubt very painful to deal with in those pre-teen and early teen years. He was lucky to experience this during the summer months when he didn't have to face school. That was a blessing. I believe it was around 3 weeks after the prednisone that all the effects seemed to abate and I had my son back.

After finishing the prednisone, we started the Maker's Diet/Specific Carbohydrate Diet. I know this was a huge relief for him because it gave him some control. He is happy to follow the diet because he never wants to experience prednisone again (not saying it will never happen, but the hope is there! Many have found relief and control this way!). If you haven't read "Breaking the Vicious Cycle" by Elaine Gottschall, I highly recommend it. The SCD has tons of online resources and support groups. There are literally thousands of kids (and adults) world-wide who follow this diet.

As you suggested, counseling might be a good thing for her, and I know my son's youth group at church was a HUGE support system for him. It sounds like you are doing everything possible, and that's all we moms can do--keep throwing things out there and see what sticks. Does she have a passion? (scrapbooking, a sport, dance?) Maybe encourage her to focus on that passion to help her through? But most importantly, you hang in there! It will get better--especially when the effects of the pred wears off!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 1/27/2009 11:39 AM (GMT -7)   
Hugs and hugs...for both of you.

Just a suggestion (was/am a teacher...just can't work right now)...contact the principal or school nurse. Sometimes, depending on the situation, your school district will provide in home teaching/tutoring, they do this a lot for sick children who may need to be out for awhile. I had students who did this who had crohn's, cancer and various acute injuries and illnesses. Anyways, they may have resources for your daughter, you, and your family...

I know myself, I have good hours, sometimes days, but they are so unpredictable, and yes, even at my age (not so old, but not so young anymore), I am embarrassed about having to use the restroom, and have you ever been in a school camode (oh, the horror!)? Sometimes they don't even have doors, enough TP, they can be dirty and usually not heated (think budjet cuts...janitorial services are the first item to go)So I can empathize with your daughter...and the fact that children can be cruel, even over little things...

So come here and vent, It must be so hard to see someone you love suffer...again hugs...you are in my thoughts.

meshice
Veteran Member


Date Joined Jan 2003
Total Posts : 734
   Posted 1/27/2009 11:50 AM (GMT -7)   
I am sure it is hard for her and you. You have to focus on the positive and look forward to the good things.
The CCFA (www.ccfa.org) might be of some help. I am pretty sure they have some brochures specifically for kids and/or school issues. She may feel better about going to school if she knows the teachers/friends understand. They also have a list of support groups (Chapters & Events). If there is one in your area it would give her others to talk to who are going through the same sort of things. They would also a good place for you get resources.

Hope this helps!
"We can't beat this disease, YET, but we can't let it beat us!"
Mandy

"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34


jan2003
Regular Member


Date Joined Jul 2004
Total Posts : 92
   Posted 1/27/2009 12:11 PM (GMT -7)   

There is a message board especially for parents of children with IBD. They frequently discuss some of the issues you are having with your daughter. Maybe you'll get some ideas there as well. 

DragonPack.Com IBD Parents Support Message Board, click here:   http://www.dragonpack.com/ibdsupport/parents/

Good luck to you and your daughter,

Jan


MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 1/27/2009 12:21 PM (GMT -7)   
Thank you SO much Jan! I've done many searches on line but that website has never come up!

:)
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