3 year old with crohns?

[courtneyv]

Hi all.
I am wondering if anyone here can be of help. Does anyone have a child who was diagnosed very young, or were you diagnosed yourself very young? Here's our story. My son will be 3 in April and has had constant, recurrant diarrhea since he was 18 months old. When he's not having diarrhea 4-5 times a day, his stools are still never formed and are usually mucousy and extremely smelly. He doesn't complain of abdominal pain, but this is a kid who will take a hit to the face from his 5yo brother and just keep running. He also has bouts of limping where he will go for 2-3 days favoring his right leg, which I am wondering could be joint pain. He has been tested for leukemia, celiac desease, allergies, all sorts of parasites and giardia. All of those are negative.
My husband has crohns disease and I have IBS, so we are familiar with the signs and symptoms. Given our family history I expressed concern to his gastroenterologist that he could potentially have crohns. She abruptly told me "that can't be, it never happens this young". At first I took her word for it, but I have found a few discussion forums online where there will be a thread or two indicating that a child was diagnosed at around 2-3 years old. They are all very old threads, and I am trying to find something concrete to go back to her with. Granted, I do not want my 3 year old going through a colonoscopy, but I also don't want him dealing with this for any more time.
Any thoughts you can provide would be greatly appreciated.

 

[xJillx]

Sadly, children this young have been diagnosed. In my local CCFA chapter, there is a 2 year old. I would seek a second opinion, because it certainly is possible to have Crohn's at a very young age. I wish you luck and hope you find answers for your son!

 

[courtneyv]

Thank you, Jill.

 

[BLM]

Hey Courtney, I have a three year old who has had bathroom issues for about a year or so....colonoscopy showed nodular pattern and his mucosal wall is lacking. Our GI said it could be an early sign of CD, or it could be something he is allergic too....and if its CD, and hes allergic to something in his diet...then were just making it worst!! So, its a lot of work to go through to have him tested, so weve been doing the elimination diet...so far, it seems to be helping. Though as a mom with the terrible disease, I know what my triggers are....and through experimentation....I see he has similar triggers. As a child myself, my disease didnt really start to become a problem until I was about 15 yrs old, and it wasnt until last year that I was finally diagnosed!! I highly suggest getting a second opinion...if at all possible.

 

[troydanielbecker]

Isaac is about a month younger than yours and is recovering now from his first big experience with ulcerative colitis. He never had solid poop until a few months ago when we started treatments for the UC. Also, he didn't seem to experience joint pain like that, but just (presumably) cramping and so on when the diarrhea was so bad and bloody.

Father of Isaac, dx UC in 10/2011 at 29 months old
Read details here: http://ibdinourhome.blogspot.com

 

[courtneyv]

Thank you so much everyone for your input on this! We have an appt. on Tuesday, so we will see how that goes this time. I'll push harder and if not go for a second opinion. Troy I read your blog and while a lot of what little Isaac is going through sounds similar to Finn, Isaac seems to be having a much rougher time overall. God bless your little family!

 

[Crohn's 35]

HI Courtney so sorry you are having to deal with this for such a small child. I have no idea what you are going through. From what I have learned, children of IBD from one parent is 5%, but it changes is both parents are inflicted and goes to 50%. I know it isn't nice odds but this disease is hereditary without a doubt and can be in some families. I know you dont want your baby to have a scope but it is the most less invasive test, better than CT scans and barium follow through. Not sure how he would be put "under" but if you get a second opinion, check out your options. Sorry I am of little help but my heart goes out to and your son and family! Welcome to the forum !

 

[silvermander]

When I started walking it was on the insides of my feet, almost on my ankle bones. The doctors did all sorts of strange things to fix them, things my podiatrist was mortified to see when I brought him my old medical records.

After my ankles were able to support me and I was walking 'correctly' - 5 surgeries before I was 7 - I started having other ankle issues. I could step wrong and my ankles would swell to insane sizes. The pain I went through was amazing - back when they didn't believe in pain management.

We continued to try to figure out my ankles as my weight started dropping. Vomiting, d, gut pains came about and I was an easy diagnosis at age 8 as Mom has Crohn's Disease and was diagnosed as a teen.

They treated my gut and my ankles cleared up. I was bleeding so badly internally that I was in at least once a week for a blood transfusion. This lasted about a year and was between 1979-1981. Finally they operated. I had a small bowel resection. My medical records show that I would have died within a couple weeks if they hadn't operated when they did. I don't know as my parents know this and I'm not about to bring it up. That surgery put me into remission for 8 years.

Through all of this the doctors were shocked at my age and how Crohn's had pretty much been effecting my body in one way or another since I was born. I'm 37 now. What I'm basically saying is push for a diagnosis as IBD 'CAN' run in families. I can follow it back a number of generations on my mother's side.

I remember so much of what I went through when I was young and the diagnosing was some of the worst. I urge you to push for a diagnosis early. I know things would have been much different had they caught it in me earlier. Now there's a lot more treatments than there used to be (I was treated at 8 the same way my mother was treated at 12 - 30 years later) and I know how hard it was to be in school dealing with this day in and day out.

Good luck and keep us posted.

 

[courtneyv]

Thank you all for your input! We have a colonoscopy scheduled on Friday morning, I will let you know what we find out.

 

[alexsmom2008]

my son alex is 3 he will be 4 next month. he was diagnosised with crohns 3 days after his 3rd birthday. we were in the hospital for 7 days with tests and unexplained fevers. He goes months with no symptoms then he will start with low fever, or leg pain, hurts to walk or limping, ect. It is horriable to see your kids suffer. no one in our family has any history of cd or uc or anything like that. I am always searching for information and people that can relate to help with questions. Its not easy getting anwers from a 3 yr old they dont know why they dont feel good they just want you to fix it..hugs to you and your family.

 

[my little penguin]

Alexsmom2008
There is a parents of kids Ibd forum

http://www.crohnsforum.com/forumdisplay.php?f=49

If you want to meet others with little ones going through this.
My son is 8 years old dx at age 7.

 

[poppets mum]

I remember reading a book on Crohns at the hospital and there was a mum in it talking about her two year old who was diagnosed with it. I'll try to remember the name. Anyway it proves that of course they can have it from a really young age, and I am surprised your GI would say that.