What Parents Can do When Their Baby is Diagnosed with Ulcerative Colitis

Ulcerative Colitis struck our middle son when he was seven months old. Interestingly, even though I had a mild case myself, since his symptoms were not stereotypical, I didn’t dream Ulcerative Colitis was what he was suffering from. Of course at that age, a child cannot talk so they are not a lot of help.

Our son’s symptoms consisted of constant diarrhea with mucous and mild fever. Also, he was constantly crying and didn’t seem to be able to get comfortable. Further, there were times when he threw up. His primary care physician initially felt he had a urinary tract infection but later changed his thinking. He decided it was a possible kidney infection. The doctor then referred my son to a nephrologist. He was treated with antibiotics. The medicine would work for about three days and then the symptoms would return. The doctor would then change the antibiotic and attribute the problem to a stubborn infection assuring my wife and me that it was simply a matter of finding the right medication. We went along with this for four months. At that time we got a second opinion that shed no additional light on the issue. It was at that time we decided to go to the Mayo Clinic.

As an aside, it is very difficult to make the decision to go to a clinic. First, there is the cost of travel as well as making the arrangements with the clinic. Perhaps the most difficult thing, however, is to advise the doctor you have made the decision to go because you are essentially saying that you are unhappy with the treatment results. While most doctors are supportive, occasionally, a doctor will be offended, and, that just makes the decision harder; yet, your objective is the health of your family member. By the time we opted to go, our son had gotten worse.

The Mayo Clinic was eight hours from our house and it was a difficult trip because our son was so uncomfortable by that time. The clinic (as with most major clinics) worked closely with us and our budget to get the proper accommodations. We were able to get an inexpensive room which was attached to the clinic so that we never had to brave any weather elements.

Initially, there is an exhaustive intake regarding the patient’s history. They ask you to bring a copy of their treatment history as well. By noon the first day the Mayo Clinic had ruled out the illness as being part of the urinary system. For four months our son had been treated for the wrong illness! The clinic then began a series of tests including blood work and visual evaluation including a colonoscopy. It was found that he had mild ulcerative colitis; even the doctors were floored. They had never seen a case in such a young child.

The treatment was actually fairly simple and the same as mine when I was diagnosed. He was given a 30 day treatment of a prednisone enema called “Cortenema” which we administered at home for the next month. Our son was very comfortable; the results were almost immediate as far as his symptoms. Once our son was diagnosed, he was referred to a juvenile gastroenterologist about 90 miles away from us.

If you ever have a child who suffers from this disease, you will find that specialists in this field are far and few between; most cities don’t have one. It is a highly specialized field. There is still a lot to be learned about Ulcerative Colitis in young children; hence the problem diagnosing our son in the first place.

So why weren’t our doctors able to diagnose our son? Is medicine that much different regionally? The answer is that it can be. However, more accurately, places like the Mayo Clinic are research and teaching centers; cutting edge so to speak. They are up on the latest diagnostic and treatment methods. Further, Ulcerative Colitis can mimic so many simpler illnesses it is not the first thing doctors look for.

The biggest advantage that a place like the Mayo Clinic has is that all the specialists of the different body systems work together and thereby get an overall effective picture of the patient. Locally, you will typically only have one doctor working from the standpoint of their particular specialty; it is always possible they will keep trying to solve the problem from the perspective of their own discipline.

I believe that this just underscores the fact that Ulcerative Colitis is a disease that exhibits symptoms throughout the body.

What I would really want to get across is that Ulcerative Colitis mimics many things at very young ages. It is not going to be the first thing that doctors look for. Certainly our son was lucky in that his case was mild. However, even so, he still has a tender bowel. When a child has mild Ulcerative Colitis the doctors will not know the extent of the illness until they are in their late teens or early twenties; it will always be a concern.

As our son has grown we have paid attention to those things which help him. A lot of fluids; small meals, minimizing stress as well as plenty of rest and regular habits are details we try to pay attention to. Occasionally he takes a mild antacid if he feels any discomfort. As I said, I have the illness so it is not surprising that he does since it is hereditary. We make sure he gets regular checkups although at early ages the doctors seem to be less concerned about follow-up unless there are symptoms than at older ages. As far as activities, he has lived a very normal life with the exception of occasional cramping at school and the fact we must always be on the lookout for symptoms; as I said we are both lucky in that our cases are mild.

Ulcerative Colitis can strike at any age. The earlier it is in existence, the more difficult it is to diagnose. It is easy to continue the same treatment. If I were going to use one key word, it would be “recurrence”. Recurrent symptoms in the face of treatment, for example, may signal a major problem. If your child is on antibiotics and still having problems, especially if it is the second or third go ’round, chances are something is going on.

Ulcerative Colitis is a disease that warrants lifetime vigilance. It can start at infancy and disappear for years only to reoccur. Regular checkups as well as attention to unexplained symptoms are a person’s best defense.