Desperate to help my diagnosed baby sister

Hello everyone,

I'm seeking information regarding my 8 year old sister. She was diagnosed last year with Crohns disease. She was placed on 6mp and steroids, significantly gained weight only to find that 6 months later, she developed Ulcers and was only getting worse with the medication she was on. The doctors suggested Remicade, which we refused due to the cancer risks it provided and the procedure itself was a bit drastic. It was decided to take her back to Michigan, our hometown, to legally treat her with medical marijuana. She has been doing better than we imagined since, which was 3-4 months ago.

This past week, she has just been diagnosed with asthma, and bronchitis. My poor baby is just going through so much and I'm at a loss. I've assisted in guiding her up until this point, I just don't know what to do. I want to make her better. If anybody has any suggestions or is experienced, please share with me. I'm seeking any and all information possible. I greatly appreciate it in advance.

She has been in dance school, used to love doing gymnastics, she loves to read and play, and nowadays, she can't handle full days in school, she hasn't been able to attend her dance classes consistently, but she stays on top of her reading. I worry for her future despite trying to be the best influence I can be to her. She's just not the same and I can't help but notice and stay worried for her.

She tells me I'm her role model but at this point, I feel so helpless. I appreciate any help.....

Did you try Pentasa? It's a non steroid product. Truthfully I only use it if I'm flaring up otherwise I don't take medicine. I know everyone's different, but once it's in remission the medicine can make u sicker than the disease. So I stop. I've had it Crohns for 10years, but u just need to figure out her flare up foods and don't have her eat it. For me it was corn coffee and pb as long as I avoid them I don't flare. Everyone's different. Just find out and take probiotics to help her system.

JuJuMesleh,

I'm so sorry that your little sister is struggling with crohns. You're a great sister to look out for her this way!

It's very hard to face that your sister has this illness and the treatment options aren't fantastic. But, it is important that the illness is treated. Untreated or undertreated crohns can have risks and consequences, just as the meds do.

Very often, but not always, when crohns is diagnosed in a child, it is severe. In all honesty, I don't know exactly how the 'severe' classification will affect the child, compared to someone with mild or moderate but, it is important to be sure to treat it.

Ongoing inflammation will eventually cause scar tissue, which can cause pain and/or strictures. Once scar tissue is formed, it cannot be treated - only removed by surgery. I really am not trying to scare you but I do want you to be aware of what the issues are and why certain things need to be done.

My used exclusive enteral nutrition (EN) to induce remission and then supplemental EN to maintain remission for almost two years. The exclusive EN took away his symptoms almost immediately and the supplemental EN maintained him at that point but did not eliminate all inflammation. At that point, his GI strongly recommended remicade in order to avoid scarring and surgery. I was NOT happy and it took lots of worry, thought and only grudging acceptance. I am still not happy BUT from all the research I did, and all the shared knowledge here, I do think it was the right route to go.

Inflammation will also cause malabsorption issues and, as important as this is for anyone, it's even more important for a growing child.

Unfortunately, not every medicine is right for every person. And, what's worked for one, may not work for another. To add to the frustration, often what works for a while, will stop working! :ymad: And, none are easy options. :ghug:

Pentasa is a very mild treatment. It often doesn't work with crohns because it's a topical treatment (ie treats the surface of the intestinal wall) but crohns affects deeper into the wall. But, it does help some, so certainly worth trying (again, the risk is allowing the inflammation to continue while you try...).

Low Dose Naltrexone (LDN) is another very mild treatment. However, most GIs will not prescribe it as there aren't enough studies showing it's effectiveness. But, there are a number of members here, including children, who have done well with it.

You'll find subforums for all the treatments in:

http://www.crohnsforum.com/forumdisplay.php?f=16

EN is a great treatment - has success rates at inducing remission in children as steroids. However, the 'exclusive' period is not easy - no food, the EN formula only usually for approx. 6 weeks. But, it provides all necessary nutrition and no side effects. Using it as a supplement (together with a regular diet) does not often induce remission but does aid in boosting nutrition and very much encourage you to try it with your sister. This can be used with medications as well. Here's a link to a thread re kids and EN

http://www.crohnsforum.com/showthread.php?t=36345

I'm certainly not saying remicade or any other med is the right one for your sister, they are all difficult choices to make, treatment or not, this med or that one... and, unfortunately, there is no one right answer for everyone! :ghug:

Thank you both for your responses. I'm happy to say that she is doing much better now. We are still exploring treatment options but doctors said the Crohns is in remission for the time being. Bless you both and good luck to you.