Parents and Caregivers

How do you find comfort when your child is suffering?



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sarahs

Joined: October 17, 2012

Posted: Oct 17, 2012 5:12 PM
What do you do to ease your mind when you watch your precious child suffer through most days from pain, depression, and insecurities?

My son was diagnosed with UC in 10/11 and then with Crohns in 3/12.  He has not had to undergo long hospital stays or bowel surgery and has only had 2 flares since his diagnosis, but he does suffer from a lot of pain.  I realize that many of you have been through surgeries and hospital stays with your child, and that my sons situation has not been that severe at this point, but it is still more then we have ever had to deal with.  I watch him go through periods with a lot of pain, anger, and depression.  I cheer him on daily and try to provide the most nutritional meals for him, but the pain is still there both physically and mentally for him and it is tearing me up inside.  

Currently, we are keeping food diaries, staying in touch with his Dr., meeting with a therapist, and praying everyday for a cure, but at the end of the day, he is still suffering, and so am I.  There are no local support groups for us to join, but I am glad I found this forum!  
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apuffdaddy

Joined: June 29, 2013

Posted: Jun 29, 2013 1:13 PM
 Reply posted for sarahs.

I'm a first timer at posting.  This will be short since I'm typing on my phone and I am slightly blind.  My son is now 11 yrs old. He had periannual abscess at age 4 that would not heal.  After multiple Dr.s. 22 surgical procedures, including colostomy and damaged finchter muscle from stitched to deep pulling out. We had a nurse ask if we tried an ointment called Protopic to help heal his wound.  Within 2 weeks it was healed.  Amazing this wasn't recommended at the beginning. We surfed financially from these medical expenses and lost our home.  This was stressful for my son to change schools and the teachers were not so understanding of his condition causing a flare up helping the Doctors to diagnose as Crohn's at age 9. He started Remicaid treatment and has had 22 infusions now.  He is feel much better but continues to have leakage from the damaged finchter muscle.  His been a trooper thru all of this and finds comfort with being consistent with routines. We also have  a doctor we trust now that makes it easier.  My wife passed away last month.  So Cleaning his bottom and taking maralax has not been consistent in the last month.  We found out the hard way, literally, with a painful 2 day clean out.  We are figuring it out but it most definitely is work and my son doesn't like it most of the time but he better understands the consequence when we are not consistent.   A read a few comments about make a wish.  We have not checked into it but I think every kid dealing with this disease deserves a break.  Well, this was a little longer than planned but it felt good to share. 
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victoria122075

Joined: January 11, 2012

Posted: Jun 28, 2013 9:20 PM
Today was my son's first Remicade infusion.  He is 9 years old. He was diagnosed on his 8th birthday. He did ok with with just Pentasa for the first year but then he had he started bleeding again and had to go on Prednisone. The Prednisone worked but the side effect are horrible so I reluctantly gave into Remicade. The infusion started out ok. They gave him Benadryl and it made him fall asleep but about a little over 1/2 way through he woke up. Cranky and crying. He wanted to go home. He was  miserable and there was nothing I could do. He is still also on 20 mg of prednisone which didn't help his mood..  I took him out to eat after. That seemed to cheer him up but we have to do this all again in 2 weeks. I remember when he was diagnosed the doctor looked so sad for me and I did not get it. I get it now. It is a relentless disease. I am sorry you daughter did not get to participate in Make a Wish but Camp Oasis is free. My son went last summer.    
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hollyjo

Joined: June 27, 2013

Posted: Jun 27, 2013 1:50 PM
 Reply posted for labfam4.

It's good to read these stories and replies--I'm so glad everyone posted.  My daughter is 12 and was diagnosed with Crohn's in 2011.  She started on Remicade in February and is doing better.
I think she copes with Crohn's better than I do sometimes!  She's a trooper.  She dances, is a cheerleader and has a couple of friends she confides in about her Crohn's. 
I find that it's difficult as the parent to find friends to confide in.  My friends are WONDERFUL, but they aren't in these shoes.  Since my daughter looks healthy, they sometimes wonder why it's always top of my mind.  They forget that keeping her healthy is work and costly!

I was glad to read this today because I was feeling a little bitter.  A child I know of through friends endured a year of cancer treatment.  She is now cancer free and will have no life long complications because of her cancer or treatment. They were granted a Make A Wish and will be heading to Disney in the fall.  I'm happy for them and I'm not discounting what they've been through, but she's "fine."  Crohn's is life long--there will likely be complications, there is ongoing medication and it's costly. 
It hit a little harder too because my daughter's trip to Disney was 2 months before she was diagnosed and the night we got tickets for World of Color, we had to leave the park with her doubled over in pain and crying like I had never heard.  I want to take her back, but can't afford to.  Make A Wish turned her down. 
I know that's petty in the scheme of things, but just one more indicator that people don't understand what these kids have ahead of them. 

Thanks for posting supportive remarks.  Crohn's is hard on caregivers too!
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mom of a

Joined: April 13, 2013

Posted: Apr 13, 2013 1:55 PM
 Reply posted for friendsurvivor.

Has anyone tried fecal therapy while also on Remicaid?  Is it safe?  My son was diagnosed with UC in December 2011 and has been in a continuous flare, worsening in the past six months.  He's scheduled for the 4th dose of Remicaid, having started it earlier this year.  The latest colonoscopy shows that the inflammation has spread from 20 cm up from the anus in January 2013 to 60 cm in March 2013, despite having been on several drugs, including Mesalamine, drug enemas, and prednisone.  Recent blood tests shows some Remicaid in his system and no antibodies to the drug, but it's not working.  He has very elevated white blood cell count, confirming his body's fighting bad bacteria. 

Thanks!
A's Mom

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mommymantia

Joined: April 03, 2013

Posted: Apr 3, 2013 6:20 AM
 Reply posted for sarahs.

thank you for posting.  my 7 year old daughter has just been diagnosed with crohn's disease.  we are so new to this and frankly the more i learn the more it scares the *** out of me.  earlier this month we had a 5 day stay at mass general hospital just before we got confirmation that it is in fact crohn's.    we are still in the white diet, no lactose, low fiber stage slowly adding things back.    according to the dr's what she has is mild (hence the scared part).  if bleeding rectally every hour on the hour for 5 days, loss of appetite, lethargic, weakness, loss of 6 pounds in 10 days... is mild, god help us if it gets worse.  

so - how do i find comfort?  the jury is still out.  i'm cherishing the good days and looking for good examples of people who are successfully coping.  in fact life itself has taught us something...   my daughters teacher also has crohn's disease.   what a perfect mentor.  i'm sad that she has it but so very relieved to know that she will be more sensitive and practical.  showing mackenna that you can live with it and thrive has been my hope.   finding folks like yourself to vent to and learn from is key.  

i wish us all the best of luck, health, sanity, strength and the courage to face what ever comes our way.  you're right, we have to take care of ourselves and be okay (most of the time).   our little and big ones are depending on us.  

mommy mantia
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friendsurvivor

Joined: March 08, 2013

Posted: Mar 8, 2013 1:22 PM
 Reply posted for sarahs.

Fecal transplants saved my life.  I will very ill with Chrone's for years and finally tried Sky Curtis's protocol for doing fecal transplants at home.  After years of suffering, her treatment saved me!  I have no more symptoms!  I bought her guidebook from http://www.fecalinfusions.com.  No one needs to suffer any longer with this terrible disease.  There's hope!  I wish you all the best.
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crohnstropper09

Joined: November 07, 2012

Posted: Nov 7, 2012 11:27 PM
 Reply posted for Sarahs.

so i am not the only mom who has to helplessly standby and watch as their little one suffers? watching my son suffer through his symptoms is the hardest thing i have had to do. up until the beginning of this year my 10 year old  had only missed one day of school in five years. now we are lucky to keep it under 5 days a month.  as hard as it is i  put a smile on my face and keep the atmosphere positive.  we are very close and he likes to have me near him when he is experiencing the worst. we like to check out funny videos on youtube and try to distract ourselves from the situation.  we found a magnet at the book store that says.... when you are going through ***  just keep going. we have adopted this as our motto. he doesn't need to know how the tears fall on my morning commute to work right? i take comfort by keeping things in perspective. every time we go to children's hospital for an infusion  i am reminded that as bad as it is.....it can be so much worse. 



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wendyking27

Joined: November 18, 2010

Posted: Nov 7, 2012 9:52 PM
 Reply posted for Sarahs.

One thing I try to remember is that I'm a better mom when I take care of myself so when times are tough I still exercise (which helps my mental health as much as my physical health) and try no to spend excessive time reading about or thinking about Crohn's as that just gets me more worried.  I've been lucky enough to meet several adults with Crohn's and Colitis now and one thing that helps me is seeing how well so many of them are doing in the world.  It is helpful to remind myself that my daughter can grow up to have a productive and happy life. 

I saw that you are considering Camp Oasis and I wanted to say what a great idea that is.  When my daughter was diagnosed she felt like the only kid in the world with Crohn's.  Although going to Camp Oasis was scary (she was only 8) it was really beneficial for her to meet kids with similar situations in a really fun environment.  The only downside of camp is they stayed up late (10pm...maybe not so late for an older kid) and she was absolutely exhausted by the time she got home...but I think it was worth it.

Best wishes!
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sarahs

Joined: October 17, 2012

Posted: Oct 18, 2012 4:19 PM
 Reply posted for labfam4.

Thank you for your reply.  

Yes, my son is very active in sports and is able to participate like everyone else.  He is like your daughter in that at times he will be in so much pain, but work through it.  I believe that trying their best to make it through the day, even when it doesn't start out so well, distracts them from the pain as opposed to staying home sick leaving all day to focus on the pain.

I am thankful that he is able to pull through.  I pray everyday that he will just keep plugging along.

We participated in the local Take Steps walk this summer which was very neat.  It was great to witness how much work and funding is being put towards finding a cure and we were happy to help support it as well as walk in the event.

As far as talking to a friend, he really doesn't have that support yet.  He doesn't like to share with anyone about it and is currently dealing with anxieties over the questions the kids ask at school...Why are you sick all of the time? Ect...  Currently, there is not a support group for his age group anywhere near us.  We are his support system.  I am really considering Camp Oasis next year.


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labfam4

Joined: March 01, 2011

Posted: Oct 17, 2012 10:09 PM
Is your son able to participate in activities?  My daughter has had Crohn's for 4 years and is presently 15 years old.  She is a dancer and luckily is still able to dance.  She can be doubled over in pain one minute but will push herself to go to dance class and the pain will subside.  She comes out smiling and feeling much better.  She also takes an art class which seems to be a good outlet for her. 
Is your son able to talk to a friend about it?  My daughter has a select few friends that she is able to confide in which is also a help.
Take time for yourself and realize that it's ok to not think about it for a while.  Even if you just rent a funny movie for yourself.

My family also does the Take Steps Walk to raise money for ccfa.  It makes her feel good that she is doing something towards finding better treatments or even a cure for IBD. And having the support from her family and friends on our team.

Stay strong and know that you are not alone.

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