new patient 9 years old

My son is nine years old and they aren't sure what is wrong. He was diagnosed with encopresis for three years but they now think he has Crohn's, Celiac, Ulcerative Colitis, or something else that starts with a C. We are traveling to Kansas City next week for a colonoscopy. His SED rate was 40 on Thursday, it was 60 on Monday. I am really scared and not sure what to ask or do. He is down to 55 pounds. Any ideas would be helpful.

Sorry to hear your son is so sick. I am not sure what encopresis is. I'm sure the colonscopy will give you some answers. My daughter was put on Prednisone the same day as her colonoscopy and she felt better immediately..hopefully this will be the situation for your son

Hello,

I am always sad to hear of children suffering with this type of disease.I know how hard it must be for you, as his parent, and on him , as well.Glad to hear he has a scope coming up. That should give you some answers. Take Care.

Pommom

Diagnosed  Crohn's, 1998..Gangrene Small Bowel,1998..Ostomy Take Down,1999..TPN for 5 1/2 months..Adhesion Removal,1999..Abdominal Hernia Repair,2000..Kidney Artery Bypass,2001..Diabetes,,Sleep Apnea,,Silent Heart Attack,,Blocked Kidney Artery after the Bypass..Bulging Disks, Pinched Nerve..MEDS--,Purinethol,Folic Acid, Fish Oil,Remicade,Bentyl,Anamantle Cream,Cortifoam ,Darvocet, Flexeril.and many more. 26 meds..

Sounds like what I went through when I was 9. It took about 3 months before I was finally diagnosed with it in my sigmoid colon at 9 after a colonoscopy. I was immediately hospitalized for a week on a liquid diet, and was able to attain remission from just antibiotics and steroids.

I was told this disease could severely stunt my growth, and my GI doc suggested growth hormones. I was able to remain in remission pretty much until 18 with a minor flare up at 15 which was immediately sent back into remission after one remicade infusion. I never did the growth hormones, and I grew to be 6'4". I lead a normal life until May 2008 when i was 18 and 2 weeks away from graduating high school. To make a long story short, all drug treatments failed, and I spent a month going between regional hospitals, until I was sent to Cedars Sinai in LA, where I spent another month and had two surgeries.

Fast forward 8 months to today, I'm 19 and was able to move away from home for college this past January. Hopefully your son is not diagnosed with Crohn's, but if he does hopefully he is able to live a normal childhood, surgery free like I did. The surgery I had last July dramatically changed my life due to the colostomy bag because I no longer felt like a normal teenager, and I was not able to start college in the Fall.

Luckily I've been in remission since the surgery, and I had a colonoscopy last week that showed the disconnected part of my colon which needed to heal has regained remission, and I am now scheduled for the colostomy reversal surgery at the end of May. I will be able to feel like a normal kid again after this surgery, which should solve my current depression and self-confidence issues.

Sorry to hear your son is going through this. A great resource for you is the Dragonpack IBD board. It is intended for support/communication between parents of children with IBD.

If your son is having trouble maintaining weight, have you tried supplementing meals with a drink like Ensure? Ensure is lactose/gluten free.

Best of luck, I hope they figure this out sooon. You should get an answer from the colonoscopy. Once a diagnosis is made you can start a treatment plan and things will improve.