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IBD and Children - Helpful Links


Super Moderator
This is an area to post any links or information you think may be of interest to parent's/carer's relating to IBD in general or more specifically to IBD and children.

I have posted links to the following IBD organisations because they frequently contain information that is useful to parent's/carer's.

The Global Network of IBD Organisations

CCFA Crohn's & Colitis Foundation of America

CCFC Crohn's & Colitis Foundation of Canada

EFCCA European Federation of Crohn's & Colitis Associations

NACC UK National Association for Colitis & Crohn's

CCA Crohn's & Colitis Australia

This is a link to Sydney Children's Hospital IBD unit. I have found the information enclosed to be a good overview of IBD and how it presents, diagnostic tools and treatment available for children and adolescents:

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To save time...Ask Dusty!
The fact that women are 1.1-1.8 times more likely to be dxed with Crohns but the incidence in pediatric Crohns is higher in boys raises a few questions doesn't it? Either the triggers are more prevalent now and somehow more likely to be contacted by boys or perhaps there are many cases of men with Crohns who've never sought treatment. I suspect the latter, but that would also indicate some manner of managing Crohns w/o medical treatment. I think women are much more likely to seek multiple opinions and ultimately be dxed (hello Cat, Wendy et al) than men.
Haha I got a work placement at the path lab of my local hospital. I used to LOVE looking at all the body parts that had been cut out of people, including colons etc! So interesting! I did feel sorry for the people they'd been cut out of though.

Crohn's Mom

Thanks Dusty...that is my favorite site to go to for lab results.
I'm glad you found it and posted it...it's a wealth of information.


Super Moderator
Some Statistics and Percentages

Good article that provides some interesting statistic and percentage information regarding CD...


Progression of Crohn's Disease

Crohn's disease occurs due to dysregulation of the immune response of T cells of the gastrointestinal system in genetically predisposed individuals. The complex causes of Crohn's are not well understood. The condition can be severely debilitating, and places great strain on the affected individuals as well as the public health system.

Crohn's disease usually manifests between 15 and 30 years of age, and typically follows a chronic and recurrent course (the disease goes through symptomatic and asymptomatic stages for the remainder of the person's life). An individual with Crohn's disease is likely to be affected for the rest of their life and experience periods of active, symptomatic disease, followed by periods of medical or surgical remission (periods when the disease becomes asymptomatic following surgical or medical treatments) and relapse to active disease. The majority of time with disease is spent in remission.
One study reported that a typical individual with Crohn's disease will spend 24% of their lifetime with the disease in a state of medical remission, and 27% of the time experiencing mild disease. Typically, a small proportion of the time with disease is characterised by severe manifestations, which may either: heal after treatment with medicines (1%), require ongoing treatment with medicine to relieve symptoms (4%), or be untreatable with medicines and require surgical treatment (1%). A typical person spends 41% of their time with Crohn's disease in post-surgical remission (with asymptomatic disease following surgery).

The disease course varies considerably between individuals. A minority of people (~10%) achieve lengthy remission periods. Most (73%) experience chronic recurring disease, and a considerable proportion (13%) experience unremitting disease (continuous symptoms). Existing data are insufficient to determine which people with Crohn's disease are likely to achieve prolonged remission and which are not.

In the first year after a diagnosis of Crohn's, 80% of affected individuals experience high disease activity and only 5% achieve remission, compared to 30% with high activity and 55% in remission more than 1 year after Crohn's diagnosis. 25% of individuals with Crohn's will experience active disease every year. A significant proportion (38%) require surgery within 1 year of starting to take medicine to treat Crohn's disease. The disease course is influenced by smoking, with smokers having more frequent and severe recurrence of the disease.
It is an Australian article so not all medications (biologics) are covered and it did make at least one questionable statement...

Immunosuppressive agents are not used to treat children with Crohn's disease
But overall not a bad read.

Dusty. :)


To save time...Ask Dusty!
I couldn't find a date of publication but apparently, it's old. It doesn't mention Humira. It also says mercap is only suitable for post surgery.

Is it still true that Remi is not covered under Aus. health system?


Super Moderator
It was first published in 2003 but last review was September this year.

No, Remi is covered as is Humira.

Dusty. :)


Super Moderator
Coping with Crohn's Disease: Steps to Take When You’re First Diagnosed

Although the full title of this article is, Reducing Flares in Crohn's Disease - The Role of the Biologics, it contains excellent information and tips about Crohn's disease in general.

For those with children on biologics it does contain a topic about paying for biologics.

Crohn’s Disease: Steps to Take When You’re First Diagnosed
WebMD Medical Reference
Reviewed By Louise Chang, MD

Being diagnosed with Crohn’s disease can be distressing. You may be afraid that you’ll have to quit working or stop traveling. You may wonder how having an inflammatory bowel disease (IBD) will affect your relationships and social life. You may think you’ll never learn to cope with unpleasant symptoms such as persistent diarrhea and stomach cramps.

The difficult truth is that having Crohn’s disease won’t be easy. It will affect almost every part of your life. But by learning all you can about the disease and how to manage it, you can keep doing the things you love.

Here are some important steps you can take now that can help you cope with this ongoing health condition.

Find a Doctor and Treatment Center

One of the most important first steps is to find an experienced gastroenterologist. A gastroenterologist is a doctor who specializes in treating the digestive tract. Start by asking your primary doctor who he or she recommends. You can also look up doctors who specialize in treating Crohn’s disease and other inflammatory bowel diseases (IBDs) on the web sites of these organizations:

The American College of Gastroenterology
The American Gastroenterological Association
The Crohn’s and Colitis Foundation of American
When choosing a doctor, consider the following questions:

How many people with IBD does this doctor see each year? If possible, you want to work with a doctor who sees a lot of people with Crohn’s. These doctors have more experience prescribing the medicines to control the disease and understand the nuances involved in treating people with this condition.

Is the doctor covered by your insurance? It’s a good idea to call both your insurance company and the doctor’s office to confirm that your health plan will cover the doctor’s services. Don’t just rely on the health plan’s Web site to determine if the doctor is covered.

Where is the doctor’s office located and what are his or her office hours? When you are having a flare-up of symptoms, you won’t want to be away from a bathroom for very long. Choosing a doctor near your home can give you peace of mind that help is nearby when you need it.

Do you feel that the doctor listens to and respects you? Crohn's can be hard to talk about. And because it affects so many aspects of your life, it is especially important to choose a doctor you can easily talk with openly and honestly.

Which hospital or treatment center is the doctor affiliated with? You may want to choose a hospital at the same time you choose a doctor. While not everyone with Crohn’s disease will need to go to the hospital, many do, especially when they have had the condition for a long time. It’s better to decide on a hospital when you feel well instead of when you are dealing with the discomfort of a flare.

Educate Yourself About Crohn’s

When you have a serious health condition like Crohn’s disease, it’s important to learn all you can about it. Of course, your doctor should be your first resource for learning about your condition and treatment options. It may help to write down your questions to make sure you don’t leave any concerns unanswered. You can also ask a relative or friend to come with you to your appointments to make sure you remember everything your doctor has said.

As you learn more about your condition, you may hear about men and women who have had a hard time coping with their illness. Reading about these stories may make you feel hopeless. It’s very important to realize that no two people experience Crohn’s disease in the same way. Just because some people have a severe form of the disease doesn’t mean that you will. Instead, try to focus on learning what you can do to manage your condition.

Talk With Family and Friends

Not everyone is comfortable sharing the fact that they have a serious health condition. But doing so can ease the extra stress of trying to hide it. Explaining Crohn’s disease in a matter-of-fact way, that it can cause attacks of pain and diarrhea, can help those close to you understand why you often need to use the bathroom or don’t feel up to socializing. Letting family and friends know what you are going through also means that you can turn to them for support and reassurance. They can be there for you during disease flares when you need extra help with grocery shopping or child care, or need a ride to doctor’s appointments.

You may also want to consider talking with your supervisor at work and trusted co-workers about your condition. This will go a long way toward explaining extended absences at work and frequent bathroom breaks. You should also read up on the Family and Medical Leave Act (FMLA) so that you know your rights in the event that you need to take off work for an extended period of time.

Joining a support group can provide you with the kind of help you can only get from people who know what you are going through. Ask your doctor if there are support groups in your area. The CCFA has an online support group where you can get tips and advice from people who have been managing their condition for years.

Pay Attention to Your Body

While no one knows what exactly causes Crohn’s disease, there are certain factors that can make symptoms of pain, cramping, and diarrhea worse. As you begin treatment, take note of what kind of symptoms you have and when. Do you always have diarrhea after eating? Are symptoms usually more active at a specific time of day? By recognizing when you are more likely to have symptoms, you can plan your day around them.

Also note which, if any, foods affect your bowel problems. While food does not cause the inflammation in your intestines, certain foods may make symptoms worse. For example, many people with Crohn’s disease find they need to avoid high-fiber foods such as seeds, nuts, popcorn, and corn, as well as spicy, fried, and greasy foods. Keeping a food and symptom diary can help you track what foods cause problems so that you can avoid them.

You may want to talk with your doctor about working with a registered dietitian (RD). He or she can review your food diary to determine whether you are eating a balanced diet. An RD can help you plan meals so that you get a wide range of nutritious foods.

Also pay attention to how stress affects your symptoms. Many people with Crohn’s find that stress is a trigger for flares. Having Crohn’s can also be stressful. If stress causes added problems for you, look into learning relaxation techniques such as breathing exercises, tai chi, yoga, meditation, or guided imagery.

Plan Ahead

The classic symptoms of Crohn’s disease -- persistent diarrhea, pain, and cramping -- can make you feel hesitant to stray very far from home. That’s understandable early on when you are learning how your condition affects you. But don’t get into the habit of cutting yourself off from the rest of the world. Planning ahead can help give you a sense of security so that you can go about your daily routine as much as possible.

Locate restrooms in public areas such as restaurants, shopping malls, highway rest areas, and anywhere you tend to go in your local area. This can help you keep a mental map of bathroom stops in mind when you are out and about. There is even an application for some handheld devices that can help you locate restrooms in your area.

Pack a travel kit that includes a spare set of underwear, toilet tissue, wipes, a couple of zip-top bags, and deodorizer. You may never need it, but just knowing it’s there if you do have an accident can help give you peace of mind.

Ask a trusted friend to be on-call to come get you should you find yourself in a difficult situation.

Focus on the Future

The fact that you have been diagnosed with Crohn’s disease may be all you can think about now. But it won’t always be that way. As you learn about your condition and grow to accept it, having an IBD will become part of who you are -- but it won’t define you. Keep your focus on your future and remember: Having Crohn’s disease does not have to control your life.

Full article:

The NACC has a new working name Crohn's and Colitis UK, I just got this thing today when I went to see my doc it said that they have a meeting on thurday the 14th June at 6pm at the Royal Cornwall Hospital, Tower Block Surgical Resource room, Level 2, If anyone is interested in going to it.


Super Moderator
When To Call The Doctor

Another snippet found when cleaning out Sarah's cupboard! :lol: It states a lot of the obvious but may be some info in there of use, particularly that about the phone call protocol.

When to call the Doctor:

Once you get to know your Doctor you will have a better understanding of what he/she wants you to phone about. These guidelines should be followed for most situations and it is hoped you will find them useful.

Telephone calls to your Doctor need to be separated into there categories-




It can also be helpful to take time to get to know your Doctor's secretary or any office staff. This can assist when you are trying to reach your Doctor, whether you are telephoning or visiting personally. You should prepare a clear list of questions to ask, be concise, do not make the list of questions too long and decide what is important before you telephone or visit.

Find out your Doctor's timetable, i.e. when he/she is available at the consulting rooms/surgery you attend. Remember they may attend more than one surgery during the week. Endeavour to ascertain:

Telephone numbers (one or more)
Surgery hours
Most convenient time to call
Whether convenient to leave a message asking the Doctor to return your call

Routine Call

You should arrange to call your Doctor's surgery after a visit, to obtain results of blood tests, laboratory tests, or to report any changes in your symptoms or side effects of new medication.

Urgent Call (but not an emergency)

Any symptom, e.g. nausea, headache, a rash on your body, which you think might relate to your disease or its treatment. It may even be a new symptom of your illness, such as painful tender bumps on your legs which often indicate the start of a flare up (erythema nodosum).

Emergency Call

Dramatic change in your illness could include any the following:

Severe abdominal pain which persists for longer than 1 hour
Significant or new rectal bleeding
Persistent vomiting, accompanied by stopping of bowel movements
Drastic changes in bowel movements without passing gas
Sudden weight loss of over 2 and half kgs in a few days

If you are unable to contact your Doctor in an emergency, you can go directly to the nearest Public Hospital Emergency Section, or the hospital you usually attend. Explain your illness, etc. Give your Doctor's name and identify any medications you are presently taking.

Through being able to determine (routine - urgent - emergency) nature of calls, you will greatly enhance the relationship with your Doctor. Also it will give you and your family better judgement about when to call your doctor and many people are hesitant to call their Doctor at times.
Remember, always carry with you your Doctor's/Surgeon's card.

Another good idea is to place your Doctor's timetable and telephone number near the telephone. Note any dates your Doctor will be unavailable, plus details of another backup Doctor your Doctor recommend.
Dusty. :)


Staff member
I'm a strong believer in the physical and mental benefits of exercise but there's also the potential for emotional benefit - when Stephen was diagnosed, he didn't keep it a secret at all from his entire hockey team. These were 16 year old boys and they all supported him, visited him at the hospital or at home (some came specifically to watch the NG tube insertion! :lol:) and backed/encouraged him when he wasn't playing at his best. Whether a team sport or not, sports create camaraderie and shared goals and, I believe, this can translate to a support system for kids.
Thanks 'My Little Penguin" for the link.
My son loves sports. He was so good at soccer...still is, but the boys are so much bigger than him now. I worry he's going to get seriously hurt but I hate to take that away from him (being able to play and be on a team like everyone else).
I did get him to start drinking a Boost a day. Hopefully he'll add a second soon. I'm determined to get this kid to gain weight!! He's 13 and weighs 65lbs and is 4'7"


Staff member
I hope the Boost helps!! I always worried when Stephen was one of the smaller kids on his hockey team!

I know Stephen's a bit older but, in the last year, he's become much more diligent in trying to 'bulk' up and eating foods that will help him achieve that (being a picky eater makes this challenging! :lol:). While he never debated using EN as a treatment, he believes it is what has helped him build muscle in the last year (I imagine he's at least partly right??) - he's even requested to continue with the overnight EN eventhough he's started remicade.

Perhaps if Brian can connect that the benefits of Boost will lead to improved soccer 'performance', it might motivate him to add the additional shake?? :ghug:

my little penguin

Staff member
DS still does partial EN while on remicade.
This has allowed him to grow over three inches this year and gain 20 lbs.
Hope your son can see the benefits soon from the boost.
I will say that although boost worked for DS prior to dx to keep him from losing weight after a while it was not enough and we had to switch him to a peptide based formula.
The one or two boosts that Jack did prior to supplemental EN - peptide formula this past month never seemed to make much of a difference. At 13 he was 5' and 77lbs. Since drinking the Peptide this last month he has gained 12-13 lbs so far and I'm expecting the height to start happening as well.
Based on that height and weight he would be in the very low percentile for BMI. The peptide are easier for him to absorb and he is also drinking 8 of them a day for a big calorie boost per the prescription from GI

my little penguin

Staff member
Height takes a while after weight gain.
At least for ds it took about 3-4 months of sustained weight gain before he grew vertically.
Feet grew first also finger nails grew a ton :)
Thanks MLP, we just had to buy him new shoes as he has out grown this pair instead of them falling apart before he could out grow them.
He chews his fingernails - Drives me nuts! so I don't know if I could use that.
But I'm hoping this spring is a big growth time. Not that we would say anything to him but he has the cutest little belly right now. He put on a pair of jeans this morning that he has worn for the last couple of years and couldn't get them buttoned. When he left my room I did a little happy dance.
Baseball practice starts this week so I hope the increased activity doesn't interfere too much.
We have a family "rule" that everyone (mom and dad too!) must be involved in some sort of sport or activity regularly. It's so important to keep these kids active! I think it also gives them some motivation to get better as quickly as they can when they're not feeling the best because they want to get back to their team or activity. Lukas' only concern about his resection was whether he'd be healed up enough to go out for the tennis team this spring. Take that, Crohn's!!
We use Pediasure Peptide, Pepatem and Pepatem Jr are other ones. I believe there are others. MLP do you know? You can't buy them in the store. They come in 1.0 and 1.5 basically 1 calorie per ml so 1.0 would be 237 and 1.5 is 356. It was explained to me that anything over 3000 daily calories = weight gain. Of course the old standard put in more than you burn and you will gain weight.
Jack thinks the Peptide tastes most like Boost, he didn't like the Pepatem or Pepatem Jr. but I know MLP's son drinks them. We got a whole bunch of samples from the GI and I told Jack find one you can drink because per the prescription this is what is happening.

We are a pretty active family I think the only month we don't really have activities in is November, football is over and skiing has not begun. The boys go skiing every weekend in Jan/Feb. Jack was on the ski/snowboard race team at school for the first time this year and James has been on the extreme ski team the last couple of years. Just finished that up and baseball practice starts Saturday for Jack and lacrosse for James started last week. When that is over in June, in starts the camping/hiking/fishing until football starts in August. Although Jack is not playing this next year as there has been a light weight team and that is not an option next year since it is high school level, there is one team for freshman and I'm afraid he would just get crushed since he is so small. Unless of course all the supplemental EN works really well and he gains 30-40 pounds and grows 5-6 inches :)


Staff member
While this was pre-crohns, Stephen was a light weight until about grade 9 to 10 when he suddenly shot up, I think he grew about a foot! :eek: His high school only had a varsity hockey team (grades 9 to 12) - probably lost 10 years off my life worrying about him playing against grade 12s when he was a small grade 9er (and, unbelievably, the school board allowed full contact/hitting!!) :ymad: We were always threatening to pull him off the teams if he didn't eat more and put on some weight (he always seemed to have something more important to do than eat! :ywow:) Even pre-crohns, I wish it had crossed my mind to give him some of these shakes then... :)


Super Moderator
Crohn's Mom...

Can you please copy this thread to IBD and Children - Helpful Links.

Dusty. :)
Hi everyone did any of your kids try the modulen and how was it successful my 9 year old just started his 6 weeks and I would like to knw more about it . Does it really help ?
EEN was very helpful for my daughter. It helped lower her inflammation, and also helped her gain much-needed weight. I hope it helps your son. Has he also started a maintanence medicine? EEN often works well, but it isn't a long-term solution.