My 12 year old son just diagnosed with Crohn's.

[Linda]

Hello,
I am the mother of a wonderful son who has been suffering with Crohn's disease for a couple of years but we didn't know what it was until last week. Looking back we should have paid more attention to the symptoms: the frequent trips to the bathroom, the loose stools, the weight loss but he never really complained of pain and we pay too much attention. Now that I am noticing I realize that he not only has lost 15lbs very gradually over the past 2 years but also he used to be off the top of the growth chart and now he is only at the 50%. He is average height and weight for his age but he used to be tall and chunky. When the doctor asked if anyone in the family had it we said no, but now things are starting to click:
Nine years ago my husband almost died from periotenitis but the surgeon at the time told us it was from a congenital condition called Meckel's Divertivulum which he was born with an extra pouch on the small intestine. The surgeon removed it along with his appendix and declared him ok but he had 2 more incidents the same year where he developed absesses on his small intestine and colon and had to have them surgically drained.
My husband remembered that his father got really sick and lost weight, had stomach aches and bloody diarreha for a time but then it went away.
My husband's grandfather died at the young age of 30 from an unknown illness in which he lost weight, had stomach pain, became very sick and died (in the 1940's). His growth had also been stunted as a kid and he was only 5'2".
So now we need to take my husband in and have him tested for IBD. Could he possibily have Ulcerative Colitis instead of Crohn's? Does having a relative with on make you suspectable to the other? My son is undergoing a colonoscopy and endoscopy next week. I am trying to learn all I can about the disease and what to do to treat it. It is the worst thing in the world to have a sick child! Any advise would be welcomed! Linda

 

[Fourlocos]

I was told there is a strong heriditory link to the disease yes. I am the mother of an adult Crohnie. I can only imagine how hard it is to have a young child with it. My son gave me plenty of other health scares all through his life and this is just one more! I wanted to wish you well with your upcoming testing and hopefully you will get answers quickly. My son was diagnosed right on the table but the biopsy is what they wait for to confirm it.
He is on remicade and imuran for about 3 months now and while he feels good, he is still having blood and mucus. My son is one of 20 grandkids and no one in the family, child or adult has had IBS, or IBD or any cancers of the stomach, colon etc. So in our case this is out of the blue. He was on accutane as a teenager though which points to where our's came from. Keep us updated on how things go for you.

 

[Jennifer]

If left untreated you could die from it. That's unfortunate about your husband's grandfather. Medical science has come so far since then though.

Yes IBD is hereditary. My parents are both carriers and they had 4 children. Two of us have Crohn's. The great thing about this disease is that it can be treated and no one has to die from it anymore. My sister was diagnosed when she was 12 and I was diagnosed when I was 9. It's hard at any age really but I think its worse when you're a kid and have to go through all these tests and your friends ask you questions that you're too embarrassed to answer. Its not fun but when you have a good GI doc, you'll be just fine. Mine was at Stanford Children's Hospital here in California but there are great doctors all over the country.

I hope your husband gets a diagnosis of something soon to be sure that he either does or doesn't have it so he can be treated properly. My sister and I went through the same tests at around the same time and it always helps to have someone to talk to about it who's going through the same thing.

Only advise I can give is make sure you have a good GI doc that you trust and who spends time with you and answers all of your questions and concerns, bring a list of questions and concerns each time you go into the office, have regular check ups and blood work done and take medication to treat it. Diet and exercise are not a cure. They help with symptoms but not flares. Bring up any probiotics, special diets or supplements/miracle cures with your GI doc before trying them out as some have been proven to do more harm than good.

Good luck and welcome to the forum!

 

[DustyKat]

Hi Linda and :welcome:

Boy oh boy, don't we have 20/20 vision in hindsight! Crohns can be such an insidious disease, it creeps up on you and when you are caring for your child day in and day out you very often don't notice those changes happening because they become the new norm. Often it's not until you look at an old photograph or treatment is commenced that you realise just how bad things had become.

You have already received great advice and I will also reiterate that IBD is hereditary, both of my children have it although the closest I can find in the family is my husbands cousin.

As Crabby has said, there are now many treatments available and what path you go down will very much depend on his diagnosis, disease location and symptoms. Please browse the forums............treatment and food & diet may be helpful to you at this point. We also have a parents forum...........................

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

If you have any questions please don't hesitate to ask. Good luck to your son with his upcoming tests and keep us posted on how he goes. Welcome aboard!

All the best, :hug:
Dusty

 

[Dexky]

Hey Linda, I can't add to the advice given. I only want to say don't beat yourself up about missed symptoms. Chances are the docs would not seriously look for crohns until things came to a head anyway. That's the way it was in our case anyway!! I think most parents share those same guilty feelings soon after such a diagnosis. It's not your fault!! Now you're on the right track. All the best to you and your son!!

 

[cuddlepops]

Hi Linda, i have a son who has just turned 16 and was diagnosed with crohns disease four weeks before i was !!, and that was in November 2010 i am so glad that eventually it was investigated and a prognosis was given. I have had years of being told by doctors that he only had a lactose intolerance and laterly a lazy bowel. i had to push for them to investigate properly. it has taken nearly seven years and only due to the fact that he lost massive amounts of weight and had between 10 and 12 trips to the loo in an evening did they eventually do a sygmoidoscopy and told us there and then what they could see. Taking his medication is the next hurdle that we have to climb !!
AS a mum i was relieved and annoyed that this was not found earlier, however i have been treated for ibs for over 10 years and it was never confirmed, and at the same time as my son was having his investigation, my bowel was getting worse and i also had a colonoscopy, which showed ulcers in the illeum and the doctor said i also had Crohns, although my biopsies did not confirm this, they said that when they take the biopsy, if it is slightly to the side of the inflammed area , it may not show up. However they are convinced that it is also crohns as they have pictures of the inflammation. and i have to take the same medication as my son.
I know that although i was relieved we had a prognosis, i also felt tremendous guilt as a mum that it must have been my fault my son had this condition and he wont talk about it to me or to anyone else. He says he knows now what the problem is and he can live with it. I like you still feel very guilty and also very sad.
I have just gone through to his room to tell him about this site, but sadly he is not interested !! maybe one day.

 

[sawdust]

Welcome Linda. I've read of strong links to heredity, but there's alot of unknowns about this disease. I, for instance, have lots of folks in my family with "something." I have a Crohn's dx, but they all have the similar or the same symptoms of varying degrees, but different diagnoses.

While the tests may not rank in your "top ten" at the moment for your son, it's likely the best thing to get things figured out. I went through all kinds of tests and spent years remembering how much I didn't care for them. But, when I relapsed, I forgot how much I wanted the tests to get things figured out again. They're not so bad.

I was in remission for six years until recently. After a long time where I didn't keep up on the disease, treatments, not only has a lot changed, but my outlook on it changed as well. Now, I've decided that I want to know all I can about the treatments, meds, tests, etc, so I never have to make a choice I don't understand when I'm desperate for results. I think it's a good idea to keep abreast of all this for your son and this forum is a great place to find opinions, observations, etc from other patients. It's a nice perspective.