Community Forum

My son is10 just diagnosed. He is a very active otherwise healthy kid. He has occasional diaraeaha. And pain when he goes but pain subsides immediately after. His growth has been stunted but no weight loss and not sickly. It seems like every board I read and every story everyone is soooo sick and multiple bathroom runs and tons of meds. We are not in that boat. Am I dilusional that this is my future or does he just have a mild case? He's in pentasa now. It has made his stool formed but still painful. Dr wants to start him on methodexatrate once a week. Hoping to not need Remicade. I'd love thoughts and opinions as this is all so overwhelming and we as the parents are scared to death. My son is fine and not phased just yet. Thanks.

 Reply posted for roccosmom.

Thank you so much for your reply, that is very encouraging. And I'm happy to hear your son is doing much better!

 Reply posted for spbsmom.

My son is now on methotrexate as well since September. He has had no side effects and it has worked well. He takes it once a week and has to take extra vitamins with it. He has gained 8 lbs since sept and grew 1 inch. Also his calpro numbers went from 250 to 49. We were concerned about long term effects as well but there really was no other solution to curb the disease but medicine. At least this is a medicine that has been proven to have little dude effects and has been on the market for a while. Good luck.

 Reply posted for roccosmom.

Thank you to everyone who provided their insight. My son who is almost 11 was diagnosed last August with Crohn's disease. The doctor said he believes it is a moderate case, his growth and weight has been effected but other than that not really any symptoms since first diagnoses. His last lab results showed an increase in inflammation, and his doctor wants to put him on methotrexate or other drugs of the sort, but we are very very hesitant to do so because of the risk of the potential side effects. 

He is no longer on pentasa. It didn't work. He's now on methotrexate for about 4 months. He's gained weight and grown. Has no stomach pains and has had mostly solid poop since then. His numbers have dropped from his cal protectin also. It's been a positve experience so far. Fingers crossed it continues positively.

 Reply posted for roccosmom.

Hi, your situation and feelings sounds similar to ours, which was nice to hear. It is difficult to find other parents with such a young child being diagnosed and her case not being super severe...though she has dealt with stomach pains for 1.5 years now.  Has your son's pain gone away from being on Pentasa?

My 7 year old daughter was diagnosed in November 2014 with mild crohns though she has inflammation all the way from her esophagus to her colon. She's never had any growing issues and is an active overall healthy child (thankfully) but has pain with bowel movements.  She is on lansoprazole for her esophogitis and Pentasa 3x/day and azathioprine 1x/day. We are also doing a low fiber diet.  We are not really seeing any great improvements yet, but they say it can take a few months for the medicine to work. 

 Reply posted for kpdoney1.

Every Crohns patient responds differently. You may get by with the milder meds for awhile.  You will know pretty soon if they work or not. The critical issue is your GI doc. Is he skilled in managing IBD? If not, please find one ASAP. Try to destress your child's life. If you are stressed out all the time, it will definitely effect your child. Start a food journal, and note things that bother him/her symptomatically. School was a stressor for my children. Get a 504 plan with your school administrators so that your child can have extra time for assignments, tests, make ups, unrestricted bathroom visits,etc. I have had two daughters with Crohns. One was tight lipped and hid her disease from most peers. The other has plastered her disease all over the internet. As I became more knowledgeable and verbalized about this disease, my girls followed suite. This is lifelong, and the whole family needs to understand there will be highs and lows as in any chronic disease. I am not pushing religion on you, but the only way I have survived as a caregiver and mom is by the Grace of God. He has been my rock for the past 17 years dealing with Crohns disease. Good luck and God Bless.

 Reply posted for roccosmom.

I'm 16 right now and was diagnosed at 12,  in the past years my main issues were weight loss and lack of growth, and mild energy loss (+ a few others). The disease is very different from person to person mainly due to its location in your digestive system. Many friends I know have had much harder times, and some easier times with their disease, so it is very much on a case to case basis. 2 years ago I was very worried about started Remicade, and worried about how it would effect my life. For me it was amazing after less than 3 days I was feeling better, and in the past 2 years I am now above average in height and my weight has increased quite a bit. This may or may not be the case for your son, as I know many people it is not very sucessful for, but I hope it helps to know others have been in this situation. Also you should talk to your son to see if he is interested in Camp Oasis, its a camp for kids all ages with IBD, and it personally changed my life.

Hope this helps,
If you have any questions feel free to let me know.