My 10 year old was just given the news... what do we ask?

Hi Mom,
I also have a young daughter with UC. She was diagnosed when she was 9. She just turned 12.
I just want you to filter a lot of the info you get from others regarding the treatment of your son. I have found that kids with UC and adults are very different...therefore it is important to really trust your GI.
It sounds to me that your GI is really terrific. The fact that he put him on VSL right away is pretty amazing!
My daughter also needed to be on Prednisone for several months at 40mg to get the UC symptoms under control.
I just wanted to say that it does seem like your GI is really on top of it and I would keep on this path.
It is very hard to restrict the diet of a 10 yr. old. You can see what changes you are able to make...I try to limit sugar and dairy but I am not even sure it makes a difference.

Our kids now already feel so different from all that they have to do now with this diagnosis I, it is really hard to restrict them even more.

Sounds like you are doing a great job with your son- life will get better and one of the most important thing for our kids at this age is to get them to grow and get through puberty.
When he starts to get better keep him on the meds, the goal being no uc symptoms and a healthy colon for a long time!

Sorry one other question, he has started getting joint pain again. He had really bad joint pain this summer that we had x-rays, blood work, the works and nothing came up. Now we are thinking that was UC BUT, this joint pain does not seem as bad and it is moving around joints more. Is it a possible side effect of any of the meds? It seems odd because he is on prednisone which should help with that if it is this right??

The joint pain is most likely due to his illness. about 25% of people with inflammatory bowel disease get joint pain. The way you describe it as moving around is typical of the kind of problems I had.

Did you tell this to the GI?

I found it helpful to get a rheumatologist to help me with this. He did a lot of testing to make sure it wasn't rheumatoid arthritis or any other kind of rheumatological condition, and ultimately was the one to push my GI to treat my IBD more effectively. I ended up taking sulfazine, which is an old arthritis med that turns out to be effective at treating inflammation in the colon AND joint pain.

I agree that the taper plan you've been given is correct, but when you start to taper is sometimes hard to figure out. You should consider the guidance to drop 5 mg per week a suggestion, not a rule. If his symptoms return or stop improving you hold at your dose until he feels better. I think you need to consider the joint pain a symptom of the illness and you should wait until he feels better from that, too, before starting your taper. And talk to the GI about sulfazine.

Hi there. I'm new here too. I was diagnosed at nine, almost the same as your son. I'm twenty-two now, and I've spent the last twelve years in remission, after one heavy treatment of asacol and diet modification. To be honest, I didn't even remember being diagnosed with UC until I talked to my mom about the symptoms I've been having recently. Just know that your son will be okay, especially with such a caring mom— that's what helped me.

The medications that your son are on are pretty much standard treatment today. As for diet, the one you described sounds excellent in general, but may not be the best for someone with UC. I would start a food journal, keep track of all food intake and flare-ups, to make note of any correlations between food and symptoms. Going dairy and gluten free can help too. Years ago I was on what was called a 'low residue diet'. I don't know if that's something that is still used as a UC treatment, but it worked very well for me.

I was on 40mgs of pred and I tapered in exactly 2 months. I read too many stories of people growing dependent on it so I wanted to get on and off asap. I went from 40 to 30, 20, 15, 10, 5, 0. I'm sure you know that it is extremely dangerous to get off it cold turkey, but I would try adjusting the taper if your son has improved. My doctor told me to go with my instinct. I initially went from 20 to 10, but I noticed a small amount of blood so I went back up to 20 and then dropped by 5s until I was done. I was on mesalamine and hydrocortisone enemas and Lialda as maintenance in the meantime. Now I'm doing very well and am living a completely normal life again just on the Lialda.

As your son tapers off the prednisone, hopefully his side effects will decrease. I found this to be the case when my son was tapering.

As far as school, I would think you have many options if he isn't well enough to go back. Could you get his work and just have him do it at home? Maybe he could be off of school longer and when he starts back he could do half days until he builds up more strength to handle a full day. Check the Crohns/Colitis website, I know there is information there on your rights and guidance as far as how to talk to the school about his condition. I would definately not just send him back without discussing his issues with the school ahead of time. Seems like that would be setting both sides up for disaster.

My three boys (ages 12, 10 and 9) are homeschooled. Homeschooling is legal in all states. If the school won't work with you, there is always the homeschooling option. You could homeschool him for the rest of the year and put him back in next year.

It never hurts to get a second opinion from another doctor, if only for peace of mind

I hope everything works out. I'm so glad that he is getting better, but it is a long road until he really gets back to normal. It took my son about 3 months to regain his strength and get stabilized on his meds. It took a total of 5 months to taper off the prednisone because it takes awhile for the other drugs to start working. I worried a lot but he did in fact get back to where he was prior to UC as far as energy level and emotional well-being.

No, mesalamine isn't a steroid. I would ask your doctor about them because they have really helped my son. Even though his entire colon is inflamed, it seems the worst problem was lower which is what the enema treats. After he weaned off the prednisone I was still occasionally seeing a small amount of blood in his stool. After getting on the enemas, the blood completely went away. I'm hoping it will keep hiim in remission longer.

I have to say it is frustrating. The school is still not meeting with me. The doctor didn't get the fax to them so they will not meet without the fax. It would seem like they could at least sit down and meet to figure out a solution.