My 2 year old son was recently diagnosed with Crohn's

[Chase's Mommy12]

In feburary my son got what I thought was a stomach bug the usually fever, diarrhea, and vomiting but the next day I went to change his diaper and Found it full of blood I was terrified I got him right to the doctor and they did a stool sample to check for bacteria it turned up nothing for days my son was passing blood while the doctors did more test and I grew more worried. Finally he was reffered to a specialist and later that week had a conoloscopy. When the results came back I was in shock but by then his symptoms were gone so the GI decided that they wouldn't put him on any medication because he is so young and he wasn't experiencing symptoms. Less than two weeks later he was throwing up everything and his little belly was bloated and hard I called the GI and she told me to pack a bag because he was most likely going to need a stay in the hospital, and he was there for a week they discovered that the end of his small intestine was almost completely swollen shut and started him on steriods.
I am a single mom and I don't know anyone else that has expierenced this I feel alone and scared I could use any advice out there even the littlest thing maybe could help me out.

 

[valleysangel92]

Hello there,

Welcome to the forum. I'm so sorry to hear your lad has been so poorly, I cant imagine what it's like to watch a child go through this.

I want to reassure you that you and your boy are not alone. We have a great network of parents here who will have lots of advice and support to offer you. I hope your son is feeling more like himself soon and you find this place helpful.

 

[Johnnysmom]

Welcome!!

I am very sorry your son has been through so much already. My son was diagnosed at 11 after a few years of being sick. Crohn's in little ones can present a little differently than in older children. The disease is somewhat individual in that what medicines/tools work for one person don't work for another, so it can take a bit to figure out what will work for your son.

My son was started on steroids too, it made him feel better quickly and he was able to gain weight and eat normally. He was also started on a maintenance medication at the same time. The steroids work immediately but many of the maintenance meds take a few months to kick in. It is important to get him on some other treatment than the prednisone, as it is not meant to be take for really long periods of time. This was all true for my son, but as your son is younger things may be different. There are several parents on here who have little ones, hopefully they will be around to give some advice too.
I would just make sure you are working with a Pediatric GI, someone who has a bit of experience with little ones.

I was so overwhelmed at first after my son's diagnosis, I cried all the time and was very afraid of all the what ifs'. But you will learn more and get an understanding of what works for your son and things get much better. My son is in remission now and growing and living like any other healthy 14 year old. It took a while to get there but he is doing really well now. We are all here for you, just to listen or try to give advice.

Keep updating us on how things are going. You will find someone here who has been there, you are never alone.

I hope your son is feeling better very soon (((hugs)))

 

[Chase's Mommy12]

Thank you both I am really glad I found this forum and finally can talk to other's that are going through the same thing.

 

[Jmrogers4]

Welcome sorry you have to join our club and with such a young guy. We have a few other parents with really young children. My son was dx'd at 10 but looking back had symptoms on and off for much longer than that.
I agree with Johnny's mom find a good pediatric GI that you are comfortable with and trust you will be seeing them at the very minimum at least once a year most likely several times a year and that is just for check ups.
Have they spoken to you about maintenance medicines? As has already been stated many take a while to become fully theraputic but once you find one that works life returns to nearly normal. My son is growing and really only thinks about his crohn's except once every 6 weeks when he goes in for his remicade infusion which is allowing him to just be a normal teenage boy.
Please feel free to ask any questions most likely somebody has already been there and can provide advice or just a supportive shoulder.
Keep us posted on how he's doing. We are almost like a little family here especially one that "gets it" as unless you've been there most don't truly understand.

 

[Bikerboy78]

Hello, sorry to hear your little one is going through a hard time, I remember having tummy ache from a very young age and my doctor telling my mom to change my diet! ( which was never a bad diet anyway ) I lost weight as a child while having these pains and they lasted on and off for over 12 months. Then the pains just went away with out a trace for years until I was late teens.

Now my son has been having tummy ache now and then for 4 years, he is ten now and I have took him to the doctors a number of times and they tried to tell me " there is no way to test children for Crohn's disease " that didn't wash with me as I did a test when in hospital so when children have tummy ache they can test certain things against what they got from me.


Good luck to your little man

Nick

 

[Chase's Mommy12]

He is currently on delzelicol has been on it since march but I feel it isn't working his stomach has been bloating, he has at had low grade fevers peridoically, and when settling down for bed says his belly hurts and "I need to go to the dr." I have kind of brushed it off since its only before bed and he is extremely smart and I thought he was trying to get out of going to bed but Im starting to feel differently. And looking back I think he was showing symptoms way before this at 1 month old he wasn't gaining weight and being a premiee ( 5 pounds 7 oz) he was already tiny so his GP told me that my breast milk didn't have enough calories to start giving him a bottle after breast feeding and eventually had me stop breast feeding all together and everytime he ate he would get sick even on breast milk the doctors explained it all away and as he got a little older he started getting "stomach flus" that would last 5 days or more and they would tell me it was nothing not to feed him for 24 hours and then he would only excret whatever bacteria or virus was making him sick and get better I thought that was strange how do you not let your child eat for a whole day but im greatful now to know whats going on so we can try to make him feel better.

 

[KyleB]

Sorry to hear about your issue. With two young kids that really hits home.