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My son was recently diaganose with IBD/Crohns. His episodes seem to affect him the most during 3am-6am. He literally wakes out of his sleep, get out of  the bed and stands up to make a Bowel Movement, It is the most heart breaking thing you ever want to see. It's terriable to deal with on top of teething and not to mention  the diaper rash.

He goes through bouts of not eating, and when he does he's a pickie eater. The worse of it is how do I begin potty training. The best part of  it he's so young he doesn't even realize what is happening to him.

 The doctor has started him on Prednisone 2ml twice daily for two weeks. I am still having  difficulty accepting that this its what's wrong with my son.

I would like to know if there is anyone with child the same age as my son who has IBD/Crohn's.  If so I would love tohear from you!

 Reply posted for saddenmom14.

I forgot to also mention that both of my daughters also have the worst pain around that same time - between 2am-6am. 

 Reply posted for saddenmom14.

Hi there,

I think you may have replied to one of my posts - I have an 11 month old with Crohn's, she was diagnosed at 9 months, began showing signs at 4 weeks old.  Last week we began testing our 3 year old who has similar symptoms - this week she goes in for her colonoscopy.  I can tell you I know how hard it is to have a very young child with IBD!!  Not only is it hard to help your child feel better, it is hard to deal with doctors who don't even believe your child's diagnosis and other people judging you for putting your child on steroids (as if we had a choice).

My daughter did so well on predisone that she only had to be on it for 2.5 weeks before moving on to sulfasalazine.  She has already gained 2lbs, sleeping better, almost no signs of pain, and all her inflammatory markers are at zero.  She is still slightly anemic and her vitamin D3 is still a little low, but all in all she is doing SO much better. 

How is your little guy doing?  Are you in the US?  We are in the Seattle area.  Email any time you need to!  jworton@gmail.com

 Reply posted for bonjoe.

Does she have Crohn's or Colitis!

 Reply posted for saddenmom14.

My granddaughter was 7 and now at 8 went through having her entire colon removed. Second part of the operation will be in Feb. It is the best thing my son ever did for her. They took her to Children's Hospital in Boston. The surgeon and the doctors there are the best you will find. There were a team of 3 surgeons working on her and the operation was 13 hours long.

After a week she was feeling GREAT. We can't wait to have the reversal done. They take your colon out and your intestines works in it's place. She tried every medicine there was and just suffered terribly. Many people are afraid of the surgery, but if they only knew how great it is to see someone feeling like themself again and looking like themself, and not taking 14 pills a day. If you live anywhere near Boston, look up these doctors. They are the best!!

 Reply posted for saddenmom14.

Hi - I am not sure where to start but I have been there.  My son is now 4 but symtoms started at 3 months and he also would wake up for BM's all night long - the diaper rashes were unbearable just open sores - the potty training I was so dreading but we did it early simply to releive his bottom...I would be happy to share more or simply be a listening ear and walk with you thorugh some of this my e-mail is mbelehmann@yahoo.com .  God Bless you and have a great Thankgiving

Miranda

 Reply posted for saddenmom14.

I feel your pain. My daughter has struggled since she was a newborn and she is about to turn 8 in December.  We were just told today that it's Crohn's.  I was relieved and saddened at the same time.  I had been crying to the doctors, begging for help, and they took the easy way out every visit...change her diet, buy expensive Nutramigen formula, avoid milk and dairy, use enemas 3x a week, etc.

  Please don't give up.  Things get worse emotionally for you both!  Find a doctor you feel is on your side.  There is light at the end of the tunnel.  

 Reply posted for saddenmom14.

Hello there,

My son was diagnosed with Crohns in October 2008.  He was 7 years old.  I can not imagine what it must be like for an 18 month old.  I think it is hard to accept for all moms and dads no matter how old the child is.  My son's doctor has children in his practice as young as one.  I think as parents we feel helpless because we can not take the crohns or colitis away.  I always wish it were me instead of him.  I do think however that we can help our children by being positive and encouraging.  We have to help them grow up to be strong adults and give them the courage and the strength to live with this illness. We have to advocate for them in their schools, at the doctors office, no matter where they are or go.  We are their voices because they are so young.   I also think we need to help them get close to god and religion so that they have faith and prayer when nothing else seems to be working.  I think being close to god will help the children accept their fate and deal with it.  They can get so much strength from god and faith.  I know what you are going through and it  is hard but I want to let you know you are not alone and you need to be strong for your baby.  We all need to be strong for our children.  I will keep you in my prayers and thoughts.  Feel free to vent to us in the forum anytime.  I have received so much strength and advice from other parents going through the same thing.  Take care and god bless. 

 Reply posted for indianamom.

It is very hard to accept it! At least your son is "potty trained".  Between the hours of 3am-6am we're awake. My son wakes out of his sleep to stand on the side of the bed to make a bowel movement, it the most heartbreaking thing to see. To see your child go through something and you can't help them is terrible.

 Reply posted for saddenmom14.

Hi Just wanted to let you know you aren't alone. My son was just diagnosed in Sept. He just turned 5. I know it isn't the same thing but trust me it is still hard and uncommon.

 Reply posted for saddenmom14.

Hi.... my child wasn't diagnosed that young, but I have seen other people around here with children that young with Crohn's.  I just wanted to say how sorry I am (the Crohn's diagnosis has been hard for me to accept and adjust and my child is 11)... I can only imagine what it's like when your baby is, well, a baby.  Keep checking back (and check the Newly Diagnosed forum too... I've seen parents there posting about thier kids too). {{hug}}