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Son newly diagnosed



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ambermurphy

Joined: March 07, 2013

Posted: Mar 7, 2013 12:44 PM
My son is 2 years old and has showed signs of problems since 6 months. At his two year check up they drew blood and noticed inflammation and we were sent to a pediatric GI who later scoped him and discovered crohns. They say he is one of the youngest patients and it is very rare to be this young. No one in my family has this so I am completely clueless. He is currently on a round of steriods and Azathioprine. I was wondering if anyone that has taken an immune suppressor has noticed that they get sick more easily? I am just trying to know what to expect. Also it is obviously extremely difficult to explain to a little one why they get stomach pains everytime they eat....he only says like 10 words. So anyone have experience of helping them eat and stay nourished? He has been losing weight for 6 months now....even when on the steriods.
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amyjo

Joined: October 17, 2012

Posted: Mar 25, 2013 2:26 PM
Hello, I just read your story.  It sound very similar to my son.  Evan always had loose stools but Doc said it was probably normal.  At about 18 months his growth really slowed down.  The Doc were still not to concerned.  At age 21/2 I took him in for a check up because I still felt something was not right and I did not want to wait till his 3 year check up.  We did a stool test and blood was found in it.  Diagnosing Evan with Crohn's went from there.  It is very hard to deal with and is different for everyone.  I'm sorry to say that I'm still confused and we are still working through Meds and have not gotten a lot of results.  Evan will be turning 4 the end of this month.  He has had good times and bad times.  This last month has been a bad time, he has had a lot of loose bloody stools.  But he is also a smart and active little boy, we are very thankful to have him.  I'm sorry that your son has this to.  I'm not sure if I would be the most helpful person to talk to.  But if you want to talk more I would love to.  My email is lewisnamyh@live.com
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lizzies mom

Joined: September 09, 2009

Posted: Mar 7, 2013 7:43 PM
 Reply posted for ambermurphy.

My youngest daughter never had solid stool from infancy, nor slept through the night.   You are fortunate he was dx so quickly.   Liz was misdiagnosed and hospitalized a number of times prior to the correct dx of CD at 4.   I thought my world was turning upside down.  I educated myself, reading everything I could get my hands on.   I had never even heard of CD. 
I know it is difficult, especially when they are so young, however,  I sometimes think it may be easier when they are young.   They aren't teens who have already developed eating habits and may not be compliant to treatment.   They eat what we provide them with and don't have an option to veto treatment.  
I found meeting with a nutritionist to be very helpful.  I thought we were living a healthy lifestyle (organic foods, lots of fresh veggies, fruits, whole grains).  I was wrong!  Using a food journal was also useful .....noting everything eaten.   We found that once we pinpointed the safe foods that providing smaller, more frequent meals with snack in-between works better for her.  I could go on and on, but space is limited here.
Though we haven't used immune suppression meds, they do lower your immunity to fight many common ailments.
On a lighter side, I am happy to tell you nine years have passed since dx and Liz is doing great!   She is a good student, gymnast, loving, tough girl.  She has finally gained weight and is now on the charts instead of below.  As a family we participate in CCFA's annual walk, and Liz has gone to their camp for the last four years. 
    

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