Understanding&Managing Your Child's IBD
Online Health Chat with Dr. Kadakkal Radhakrishnan
March 24, 2011
Did you know Crohn’s disease and ulcerative colitis are the two most common forms of IBD, affecting nearly 2 million Americans? The disease can appear at any age, although it is rare in babies and very young children. The majority of patients are diagnosed with IBD at age 10 or older. Cleveland Clinic Children's has one of the largest pediatric GI centers in the country, treating nearly 10,000 patient visits annually. Dr. Radhakrishnan will answer your questions on a variety of topics regarding the symptoms, diagnosis and treatment of IBD in children and teens.
To make an appointment with Dr. Radhakrishnan or any of the other specialists at Cleveland Clinic Children's Hospital, please call 216.444.KIDS (5437) or call toll-free 800.223.2273, ext. 5437. You can also visit us online at www.clevelandclinicchildrens.org.
Cleveland_Clinic_Host: Welcome to our Online Health Chat with Dr. Kadakkal Radhakrishnan. We are thrilled to have him here today for this chat. Let's begin with one of your questions!
NEOHdiver: My daughter was diagnosed at age 4 with UC, and at age 18 with primary sclerosing cholangitis. She had significant non-specific symptoms of a liver disease starting around age 13 (e.g. extreme pruritis, irregular menses, and intermittent extreme fatigue). The periodic hepatic and renal function tests we requested because of the medication she was on (mesalamine), and were declined. Although I did not have PSC in mind when I requested the liver function tests, had they been run regularly, PSC would have been diagnosed significantly earlier. Are there other companion diseases we should watch out for – and what battery of tests (and/or interview topics) should be covered on a regular basis to monitor both IBD progress, complications, and medications - as well as to screen for companion diseases?
Dr__K__Radhakrishnan: I see that your daughter has UC and PSC. Regarding companion diseases for UC and PSC there is a higher risk of colorectal cancer when associated with PSC. Generally the advice is screening every 5 years for colorectal cancer. An annual eye exam to watch iritis. I also advise a baseline bone density to repeat every 2-3 yrs.
Your daughter also needs to stay well hydrated during the warmer weather (summer) due to clot formation (thromboembolism.) She should also have routine screenings to f/u on her PSC.
NEOHdiver: My daughter with UC has been in remission since shortly after her diagnosis 16 years ago, once we discovered her breakthrough diarrhea was triggered by poultry (which she was eating daily until we discovered she had a chicken allergy). Unfortunately, remission has ended. Her two most recent colonoscopies had visible inflammation and she is having symptoms as well. We were lucky to find the trigger the first time – but identifying a food trigger that produces delayed symptoms using an elimination diet or standard allergy tests is about as effective as looking for a needle in a haystack. I understand that the ELISA IgG test might be able to help cut the haystack down to size (high false positives, and poor reproducibility from lab to lab suggest it is no more than a starting point). Ideas as to how to get college kid to track down a food trigger – including thoughts on using the ELISA IgG to start (where I might have it done, and what lab might be the most reliable)?
Dr__K__Radhakrishnan: I agree that the diagnosis of food allergies may be very difficult. The allergy that you are alluding to is typically a cell mediated allergy and there are no reliable tests for that.
I would advice you to refrain from self testing as these tests may be very confusing and hard to interpret. In case of suspected food allergy, the best way to prove is to eliminate and re-introduce the given food. However, when the panel shows multiple allergies, you may end up eliminating almost the entire diet.
ELISA IgG test looks for antibody mediated allergies. (ELISA stands for Enzyme-Linked Immunosorbent Assay.) A high response on the ELISA may predict a higher risk of cell mediated allergy when the GI track is exposed to certain foods. In the setting of high positive ELISA, an input from an allergist is the best route to go.
Michael_s_Mom: My 3 and 1/2 year old son has been diagnosed with Crohn’s (he also has high functioning autism). I always knew something wasn't right. He barely eats and has never in 3 and 1/2 years had a solid BM. Right now we are in the process of trying either Humira® (adalimumab) or Remicade® (infliximab). None of the typical treatments have worked. Our biggest challenge right now is trying to potty train him and get him to eat more. His weight has stayed the same for over a year. Any insight you can share would be helpful as we navigate this disease.
Dr__K__Radhakrishnan: Autistic children are generally very sensitive to changes in bowel movement pattern. I assume from the information you have provided, that your son likely has proctitis (inflammation of the rectum.) This makes it very difficult to control bowel movements when he gets the urge. He probably 'let's is go' when he starts to get pain given his underlying autistic disorder.
The best way to help him potty train better would be to control his inflammation. Humera or Remicade would be the treatment option provided that he has tried other treatments like Imuran® (azathioprine) or Methotrexate.
A trial of a topical rectal steroid foam may be worthwhile in controlling his immediate symptoms.
rachel234: I have an 8 year old daughter that has Crohn's Disease. I am wondering, is there any link to being exposed to asbestos and Crohn's Disease? My daughter was attending a public school for about a year that was doing asbestos removal (unknown to the parents). She began having problems and was then diagnosed with Crohn's Disease about 2 years later. I have since pulled her out of that school and now home school her, but I always still wonder in the back of my mind if her being in that school during asbestos removal is what caused the onset of the disease for her. Do you have any information about this? Or is it really only a coincidence?
Dr__K__Radhakrishnan: As far as I know there is no association between asbestos exposure and Crohn's disease.
chkennedy3: My daughter is 7 diagnosed with IBD Crohn's and can't control her bowels what can I do? She has accidents almost everyday and hides it from me. I find it in her laundry. Should I be concerned about this? Is it normal? What can I do to help her from embarrassment at school? She is also experiencing a loss of urinary control.
Dr__K__Radhakrishnan: Your daughter likely has active inflammation of the rectum. When she has the urge to go to the bathroom, she cannot hold back or she would have had an accident before she has the opportunity to control her sphincter muscle before she hits the toilet.
The other possibility is that she has developed a fistula (an tract from the intestine to the perineum) which may be leaking stool.
Typically this is not normal and she should be evaluated for proctitis and fistula. Consulting a GI doctor and discussing this over would be the best approach. She may need a repeat colonoscopy and may have to change the treatment approach accordingly.
MED5: Is someone with Ulcerative Colitis at greater risk for other autoimmune diseases?
Dr__K__Radhakrishnan: Yes. There is a higher incidence of rheumatologic disorders; high risk for liver disease especially primary sclerosing cholangitis (PSC)and there may be a slightly higher risk of eye disorders such as iritis (uveitis).
MED5: If a child is diagnosed at an early age (5 years old) with Early Ulcerative Colitis/Proctitis, what is the likelihood that the disease will get worse as the child ages? What is the prognosis? How likely is it that the disease could remain confined to the rectum?
Dr__K__Radhakrishnan: There is a 60% chance of disease progression to involve the rest of the colon. Hence the disease would stay in the rectum 25-40% of the time.
MED5: If someone has Ulcerative Colitis, are they likely to also get Crohn's disease?
Dr__K__Radhakrishnan: Probably not. However, up to 20% of patients with Crohn's disease have isolated colon involvement. This means that it can masquerade as UC. This situation can be confusing to the practitioner and the clinical course will only be known as the disease progresses.
Is a patient with colonic disease has involvement of the stomach or duodenum (upper small bowel) we assume that they may be Crohn's variant than UC. In this setting we use the term indeterminate colitis.
MED5: Are there long term side effects of using Canasa?
Dr__K__Radhakrishnan: No. It is the inconvenience that is the problem.
graciesu: My child has been diagnosed with ulcerative colitis and is on Prednisone and Imuran. She can not tolerate the Apriso class of drugs. Are there other options?
Dr__K__Radhakrishnan: Depending on her age and the area of the bowel involved, she could try Asacol or Pentesa or Colazol.
graciesu: Also, child with ulcerative colitis is G-tube fed Peptamen Jr, is that an appropriate formula for her? are there dietary changes that might help?
Dr__K__Radhakrishnan: There is no role for hydrolysate formula like Peptamen® in IBD. The only dietary regimen that may work is elemental diet. The one that has been tried is Modulin. The efficacy goes away once the normal diet is re-introduced. She should be on a age appropriate formula for the medical reason to start Peptamen®. The help of a dietician would be worthwhile.
graciesu: My child, age 12, with UC, has abnormal liver function tests. They looked for PSC, but it was not found on initial MRCP. They now want to do ERCP and possible liver biopsy. While I know PCS is common with UC, what other possible causes should be ruled out regarding liver labs?
Dr__K__Radhakrishnan: The physician has to help the family make the decision whether the risk of the ERCP outweighs the benefit of diagnosing PSC. If your daughter has elevated liver enzymes and GGT (another liver enzyme that comes form the bile duct) then PSC would be in my thought process. However, inflammatory bowel disease patients can have abnormal liver tests when they have active GI inflammation secondary to medications and infections.
All of these are ruled out or addressed and the liver numbers are still high then ERCP may be worthwhile if the physician suspects PSC even in the setting of a normal MRCP.
If you are worried about the risk of ERCP, a liver biopsy may be the first step. I would advice you to have an open conversation about this with your doctor.
NEOHdiver: Follow-up on the first question - is the bone density scan for risks that disease related, or medication related? (Her only medication, for the UC aside from a brief period of prednisolone, is mesalamine)?
Dr__K__Radhakrishnan: That is a good question. It is a combination of both disease and treatment. Treatments like steroids will reduce bone density. Active disease and liver disease may also decrease bone density.
lizard: My 11yr. daughter had the flu influenza B, recovered fine after 1 week, a generally healthy child, then started to have symptoms of low grade fever 99-101.0 for 1 month upset cramping stomach especially after she would eat, she lost 6 pounds in 5 weeks her eyes and joints hurt and she was having loose slimy stools 3-4 a day, we had her stool checked for parasites and other things everything was neg. except pos for occult blood, she then had a lower/upper scope mostly neg. except for chronic mild inflammation of stomach 7 biopsy were taken, then we had a barium x-ray it showed 2 moderate size nodules in the ileum. My daughter has been asymptomatic, feeling good since the test, feeling good eating gained the 6 pounds back. The G.I Dr. recommended a capsule study. Should we do the capsule study or wait and see if she ever will have these symptoms again, should i be concerned about nodules in the ileum?
Dr__K__Radhakrishnan: This most likely is a post viral mild gastritis. The joint symptoms are most likely a post influenza phenomenon. If she is doing well now, I would suggest no further testing.
lizard: Is there a specific test to easily diagnosis Crohn’s or ulcerative colitis?
Dr__K__Radhakrishnan: Diagnosis of inflammatory bowel disease is made by combination of the symptoms of the patient (disease presentation), abnormal examination, abnormal blood tests, radiological tests (barium, CT scans, etc.) and endoscopy.
There is no good single test. A lab in California offers a blood test to predict the risk of Crohn's and UC. The use of this in routine testing is not clear and I would not advice that as the initial testing.
lizard: Dr. Radhakrishnan, should i be concerned about nodules in my 11 yr. olds ileum? Should i wait to do the capsule study?
Dr__K__Radhakrishnan: The nodules are likely enlarged lymph follicles (like lymph glands in your neck.) It is sometimes normal for young children to have enlarged lymph follicles (Peyer's Patches.) Since your daughter is doing well, I would advice you not to pursue it any further.
lizard: What nutritional shake would you recommend for a diverticulitis fistula patient?
Dr__K__Radhakrishnan: There is no specific diet for this setting.
MED5_1: Do you foresee a cure for Ulcerative Colitis?
Dr__K__Radhakrishnan: Inflammatory bowel disease is a disorder of interaction between normal gut bacteria and the GI immune system. About 70 different genes are now associated with IBD. Having an abnormal gene increases your risk to develop IBD however it is not an all or non phenomena. It does not make you certain to develop the disease. There is some hope in the horizon that embryonic stem cell therapy may cure the disease for good.
That said, there is some evolving evidence that stem cell transplant using patient's own stem cells may help control the disease in difficult to treat patients. We need to wait for more studies in this area.
MED5_1: Do you recommend any alternatives such as Probiotics, Fish Oils, Aloe Vera for treating UC?
Dr__K__Radhakrishnan: The may have an adjunctive effect but not an absolute effect. Placebo trials in IBD have worked in 30% of patients. I would advice caution using herbal supplements since there are no good control trials for these therapies. The web sites and pamphlets from these manufacturers only provide anecdotal experiences of individual patients and no comparative trials. And also, we have seen unexpected side effects and toxicities from these agents.
NEOHdiver: Since the topic of PSC has come from other parents, as well, are you familiar with the long term use of oral vancomycin in the treatment of PSC in pediatric patients (Drs Davies & Cox) , which also seems to have some impact on some cases of coexistent IBD? Any thoughts?
Dr__K__Radhakrishnan: We need to wait for long term studies on the role of sclerosing and PSC. I am not sure that once the disease process in PSC is activated it can be reversed. It is possible that vancomycin may slow it down - but this is my pure hypothetical view point. More results should be awaited. Prior trials with other agents have not shown to be beneficial in PSC.
Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Radhakrishnan is now over. Thank you again Dr. Radhakrishnan for taking the time to answer our questions about pediatric IBD.
Dr__K__Radhakrishnan: I would like to thank all the participants for the interest shown today. At Cleveland Clinic we have a Pediatric GI/IBD Clinic with 12 pediatric GI physicians, including liver physicians, pediatric liver doctors and an entire multidisciplinary team. We are well equipped to treat IBD in children using state of the art investigations and therapies in a child-friendly way.
Dr__K__Radhakrishnan: Thank you!
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