It was a very scary experience watching my 10 year old dwindle down to almost nothing. She went from 73 lbs. to 51 lbs. in a matter of a few months. The devastating realization that my child was very ill came to me when we were out doing some shopping for the beginning of the school year.
That image of my child’s thin, frail body still stays with me. I gasped at the sight of her protruding spine and collar bone as she tried on one of the pretty pink dresses we both had chosen. It was the smallest size they had available, and it still looked about three sizes too big. Later that night, she was admitted into Children’s Hospital.
My daughter began the beginning of her 4th grade school year hooked up to an IV. With constant prodding and probing, doctors worked tirelessly as they tried to find the cause of her sudden weight loss. On top of that, she was in pain. Pain as her body tried to digest a simple meal you and I would have taken for granted, and the excruciating pain she experienced passing it all through.
According to website Crohn’s & Me, “When you have Crohn’s disease, your body’s immune system begins attacking healthy cells in your GI tract, causing inflammation. Because it is a disease of the immune system, Crohn’s is classified medically as an autoimmune disorder. This means that your body is producing antibodies that work against itself”.
This Crohn’s diagnosis was all so new to the both of us. Having the flu was the extent of someone having an illness in our house. Now we were hurled into another world filled with terms and statistics.
She was quickly placed on steroids which seemed to manage the disease enough to give us the little bit of breathing room we needed. The next step, we were told, was the drug, Mercaptopurine (6MP), and since I nor my kids rarely took any type of pill for anything, the idea of my child taking a drug like 6MP caused me to worry about my daughter’s future health.
Seeking Alternative Measures
Instead of moving forward, she and I sought out to manage this illness with a more natural approach. We read lots of books and success stories, and followed the guidelines. We changed the way we ate, adding more foods with omega fatty acids (fish oil, fresh/frozen fish) and incorporated more probiotic food supplements into our diet. All of this we were doing while she was being weaned off of the steroids. By the time she was completely off, those horrible symptoms of Crohn’s came creeping back in.
Immediately after our failed attempt, she started her 6MP regimen then later Remicade infusions every six weeks. Today we still keep up with the good eating habits and the probiotic-enriched foods and capsules. Taking vitamin supplements is very important as well.
Welcome Back To The Fold
I am so grateful for the team of such thoughtful and patient doctors my daughter has had throughout the 5 1/2 years she’s had this disease, and 5 of those years of successfully managing it. She will be turning 16 yrs. old in a couple of months and I am very glad to be able to say right now that she is doing very well.
Our doctors took us by the hand every step of the way, as I’m sure yours did, and I am truly happy for that. But what happens when our teens become adults? It’s unfortunate to say that our sons and daughters may not get the same attentive and shielded health care that’s only known in the pediatric world.
By the time your teen is 18, he/she should be very much aware of which foods are best to eat. But here are a few tips that can help your teen become fully knowledgeable and prepared to navigate his/her way through the adult health care system.
- Have a talk with your teen and look up all the information you can regarding Crohn’s to make sure he/she understands what the disease really is.
- Help your teen understand what the indicators are to managing his/her disease. Both parent and teen together should talk with the doctor to understand what number is a healthy Sed rate (indications of inflammation) and a healthy platelet count.
- If your teen hasn’t taken over at doctor visits and asking a zillion questions, encourage him/her to do so. It is very important a patient knows everything that is going on.