new patient 9 years old

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New Member

Date Joined Mar 2009
Total Posts : 3
   Posted 3/19/2009 8:12 AM (GMT -6)   
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.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 3/19/2009 10:04 AM (GMT -6)   
Hi Hopefully when he has his scope done you will know more about his condition.. you say he is 55 lbs. has he had a large decrease in weight ? I know it is very worrisome but at least you have a good start in finding out what is going on by having the scope done...I suppose he has been on stool softeners for his encopresis ... hang in there and when does he go for his scope? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still gail

Regular Member

Date Joined Jan 2009
Total Posts : 394
   Posted 3/19/2009 10:48 AM (GMT -6)   
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
10 yr old daughter diagnosed with "UC-like Crohn's" 12/08
currently on 2400 mg Asacol 

New Member

Date Joined Mar 2009
Total Posts : 3
   Posted 3/24/2009 8:01 AM (GMT -6)   
Thank you for responding! He is down from 70 lbs. We went yesterday to KC and they scheduled his scope for Thursday. I am very scared because his sed rate is still climbing. THe stool softeners are causing such problems that he is now voluntarily wearing underjams because of the number of accidents he was having where it was just like water.

Regular Member

Date Joined Mar 2008
Total Posts : 155
   Posted 3/24/2009 3:42 PM (GMT -6)   


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.



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..



Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 3/24/2009 3:51 PM (GMT -6)   
I am so sorry your son and you have to go through this. The scope should help the doctors to figure out what is going on, but don't give up hope if it doesn't. Sometimes the disease activity is further up and can't be seen with the scope. There are a lot of tests available. But the colonoscopy is the one that most doctors seem to start with. I was only a few years older than your son when I first showed signs, but I was "lucky" because my mother had CD and she had set a good example for me. I knew what to expect and that she had been able to live a relatively normal life once she was started on the right medications. Hopefully the doctors will be able to see what is wrong and start your son on something to get things under control soon. I will be keeping you both in my thoughts.

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

New Member

Date Joined Feb 2009
Total Posts : 10
   Posted 3/25/2009 2:39 AM (GMT -6)   
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.

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 3/25/2009 6:31 AM (GMT -6)   
I'm sorry to hear about your son. It really angers me to hear about young children who develop diseases and cannot have a normal childhood.

I wish you all the best!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 3/25/2009 1:12 PM (GMT -6)   
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.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying... Enteral Nutrition, Flax Oil, VSL#3, Folic Acid, Vitamin E

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 3/25/2009 7:43 PM (GMT -6)   
Hi That is a considerable amount of weight lost and perhaps you could ask his Dr. about ensure or something to help maintain his weight. Wishing him all the best with his scope... let us know how he is doing ... lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~

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