Hi All. I just discovered this forum today. It's crazy in this day and age that it is so hard finding support, but it is, so I am glad to have found this.
As fast as I can:
My son was diagnosed with Crohn's Disease when he was about 7 or 8 years old. He is now 13. My gut tells me he was suffering as a three year old. Long story short, he had started eliminating foods from his diet when he was about 3. He simply started refusing food that he had eaten the previous day! We ended up whittling down to Cheerios, eggs, yogurt, plain chicken if I was lucky and not much else. The pediatrician didn't seem to think my concerns were real b/c he continued to grow and develop (although he was being seen weekly for therapy at the early intervention sites for language delay). Later for reasons I now forget, I started him on acidophilus - I think he had a recurring yeasty rash and a friend recommended it. He took it for some time until he suddenly decided he couldn't eat them anymore. i tried different varieties at no avail. Then, the vomiting started. It was random, so random that I did not connect the dots. We'd be walking through the zoo &, bam, he'd throw up. Then there was a period of time I thought he had a low grade fever; he just felt a bit warm to the touch - every day. I started testing his temp & low & behold , I was right, he had a very low grade fever. It lasted for weeks. He also had a rash inside his elbows and knees and a spot of the rash on his back. I thought he was worn out looking, his energy level was low, he cried every day about going to school, he begged to stay home or get picked up early, he didn't seek out play dates and, in retrospect, he had lost a lot of weight which I took for growing up and the pediatrician didn't seem to notice. (It wasn't until long after when I came across some photos that I realized just how much thinner he had become). I took him to the pediatrician who had no answers but referred us to a gastroenterologist for the vomiting. The gastro blew us off, and not very nicely, telling us there was nothing wrong. Then the vomiting and lethargy became worse. His pediatrician called the gastro to ask for testing. Skipping ahead, he had an endoscopy & colonoscopy. Immediately from the procedure, the doctor approached me and asked if my son was particularly "stoic". He said he was ulcerated and had I ever heard of Crohn's. And there we are.
My feeling is he had this for years and it went unnoticed. He is doing well, very well after hearing so many stories over the years. Pentasa and Nexium seem to be enough to keep this controlled within reason.
But this is where it gets hairy. He isn't terribly sick. He must take iron & Vitamin D b/c he is deficient in both without the supplements. He is a big kid with meat on him for sure. But he is tired all of the time, he suffers for a day or so after a lot of activity from complete exhaustion. If we go on a vacation where we are active, he honestly needs a break a couple of days in to just sit around b/c he can't keep up. His stomach hurts him all of the time. Not horribly, just constantly. He has what I have started to call "bouts" where he will have intensified pain for a day or up to three days. Sometimes they are paired with diarrhea, sometimes not. Sometimes with a slight fever, sometimes without. Before xmas he was home for 3 days with pain. He would wiggle and shift position constantly and fuss about not being able to get comfortable. He would try to "keep his mind off it" as he says and then gets overcome with discomfort. This casues him constant stress. To make matters worse, his eating habits are horrible. I honestly believe he is afraid to eat and try new foods. What he is going to eat/ what I can offer him/what new thing might I get him to nibble is always on my mind. He does crave spicy foods which I thought was weird but his pediatrician said can act as an analgesic (I hadn't thought of that!) Nothing is consistent and nothing makes sense. He has lost more days from school this year than last year yet his gastro doesn't seem at all interested or worried. He is not getting better, he has actually gotten worse over the past few months. We are trying to get a second opinion but that has been a waiting game.
I am hoping I can learn more about Crohn's from this Forum and get fresh ideas and become more educated. It is clear this isn't going away & I fear for the day that it gets worse. His doctor said something that stuck with me. He said that my son "doesn't know what it feels like to be truly well." His constant stomach pain/issues and lack of energy is his norm. I just want to do everything I can to make him as healthy and happy as possible so that if this does escalate, he will be best prepared to deal with it physically & mentally.
Wishing you all well.
As fast as I can:
My son was diagnosed with Crohn's Disease when he was about 7 or 8 years old. He is now 13. My gut tells me he was suffering as a three year old. Long story short, he had started eliminating foods from his diet when he was about 3. He simply started refusing food that he had eaten the previous day! We ended up whittling down to Cheerios, eggs, yogurt, plain chicken if I was lucky and not much else. The pediatrician didn't seem to think my concerns were real b/c he continued to grow and develop (although he was being seen weekly for therapy at the early intervention sites for language delay). Later for reasons I now forget, I started him on acidophilus - I think he had a recurring yeasty rash and a friend recommended it. He took it for some time until he suddenly decided he couldn't eat them anymore. i tried different varieties at no avail. Then, the vomiting started. It was random, so random that I did not connect the dots. We'd be walking through the zoo &, bam, he'd throw up. Then there was a period of time I thought he had a low grade fever; he just felt a bit warm to the touch - every day. I started testing his temp & low & behold , I was right, he had a very low grade fever. It lasted for weeks. He also had a rash inside his elbows and knees and a spot of the rash on his back. I thought he was worn out looking, his energy level was low, he cried every day about going to school, he begged to stay home or get picked up early, he didn't seek out play dates and, in retrospect, he had lost a lot of weight which I took for growing up and the pediatrician didn't seem to notice. (It wasn't until long after when I came across some photos that I realized just how much thinner he had become). I took him to the pediatrician who had no answers but referred us to a gastroenterologist for the vomiting. The gastro blew us off, and not very nicely, telling us there was nothing wrong. Then the vomiting and lethargy became worse. His pediatrician called the gastro to ask for testing. Skipping ahead, he had an endoscopy & colonoscopy. Immediately from the procedure, the doctor approached me and asked if my son was particularly "stoic". He said he was ulcerated and had I ever heard of Crohn's. And there we are.
My feeling is he had this for years and it went unnoticed. He is doing well, very well after hearing so many stories over the years. Pentasa and Nexium seem to be enough to keep this controlled within reason.
But this is where it gets hairy. He isn't terribly sick. He must take iron & Vitamin D b/c he is deficient in both without the supplements. He is a big kid with meat on him for sure. But he is tired all of the time, he suffers for a day or so after a lot of activity from complete exhaustion. If we go on a vacation where we are active, he honestly needs a break a couple of days in to just sit around b/c he can't keep up. His stomach hurts him all of the time. Not horribly, just constantly. He has what I have started to call "bouts" where he will have intensified pain for a day or up to three days. Sometimes they are paired with diarrhea, sometimes not. Sometimes with a slight fever, sometimes without. Before xmas he was home for 3 days with pain. He would wiggle and shift position constantly and fuss about not being able to get comfortable. He would try to "keep his mind off it" as he says and then gets overcome with discomfort. This casues him constant stress. To make matters worse, his eating habits are horrible. I honestly believe he is afraid to eat and try new foods. What he is going to eat/ what I can offer him/what new thing might I get him to nibble is always on my mind. He does crave spicy foods which I thought was weird but his pediatrician said can act as an analgesic (I hadn't thought of that!) Nothing is consistent and nothing makes sense. He has lost more days from school this year than last year yet his gastro doesn't seem at all interested or worried. He is not getting better, he has actually gotten worse over the past few months. We are trying to get a second opinion but that has been a waiting game.
I am hoping I can learn more about Crohn's from this Forum and get fresh ideas and become more educated. It is clear this isn't going away & I fear for the day that it gets worse. His doctor said something that stuck with me. He said that my son "doesn't know what it feels like to be truly well." His constant stomach pain/issues and lack of energy is his norm. I just want to do everything I can to make him as healthy and happy as possible so that if this does escalate, he will be best prepared to deal with it physically & mentally.
Wishing you all well.
