Newbie. 13 yr old daughter diagnosed today

Hi All- I posted some questions a couple weeks ago and you all were so kind to reply with helpful answers. My daughter had her colonoscopy and endoscopy today, and it looks like she has crohn's. We are waiting for the biopsy results, and she needs to get an MRI of her small intestine as they couldn't see everything, but all symptoms are pointing that way.

We will meet with the GI in 1.5 weeks to discuss biopsy results and treatment options. It looks like she has crohn's ulcers in the duodenum. Her stomach was also fizzy, but the GI is not sure yet what that is from. We will probably do a short course of steroids, then mexotrexate or something similar. I am still learning a lot about the med options and vernacular, so please let me know if I state anything wrong.

Her symptoms were: failure to thrive (she is short and very skinny), stomach pains, high calprotectin (380), anal fissures, constipation and foot pains (probably from vascular inflammation)

My daughter was a real trooper today! She did way better than me. You'll be seeing me more here now.

Hi Bareket1,

My Daughter was diagnosed at 13 as well. I really do know exactly how you feel.

I want to assure you that there's plenty to be hopeful for. The medications have improved. The diagnostics are better. Once properly diagnosed and treated, she has a very good chance at living with this disease, while managing it very well.

Be very sure to rule out other possibilities. Celiac mimics alot of Crohn's symptoms. The termianl Ilium is a particular area that needs to be checked. Surprised they're not doing an SBFT, but an MRE is also excellent. This is the most common area of the small intestine to be affected by Crohn's.

Good luck, prayers coming your way. Stay positive, things will definitely get better soon.

Tom.

And I am not 100% sure of the foot pain correlation. I will also post more on that once we meet with doctor again. I think it is because her extremity blood vessels are also inflamed.

It makes me sad whenever another young person is diagnosed with Crohn's. Maybe you want to check out the Website of the Crohn's/Colitis Foundation. There may be a support group for young people in your area. It would be so helpful to your daughter if she had other teens to talk to. How long has she been ill?

 

Sorry to hear your daughter was diagnosed, but the good news is that you caught it when you did. Being diagnosed at the age of 13 is critical, because she should be starting - or about to start - her growth phase. As you know, growth failure can be a sign that something is wrong.

I'm sure you'll find good pediatric GIs who know what they're doing, but I want to emphasize one important point: A person only has one chance to grow. Once your window is closed, it's closed. So it's great that you know what she's dealing with now, so hopefully you can get it under control and allow her body to grow as it should these next few years.

An adult can go for a few years with active disease and not miss out on any growing, but an early teen? If they have active disease the next few years, that could significantly impact growth (ie impart growth failure), and once that phase of life is past, it's too late to do anything. She could end up short and underweight permanently. Of course, that's not the end of the world, but if it can be avoided, by all means it should be.

I got Crohn's when I was about 16. I had been growing like a weed up until that point, and then I never grew any more. My two brothers are 6'1" and 180 pounds. I'm 5'10" and 140 pounds. Now, I can't say for sure that I stopped growing because of Crohn's, but it's definitely a suspicion. And if I'd gotten Crohn's a couple years earlier, I might have grown much less (especially since in the 1980s there weren't many treatments available like there are now).

So this is one age where I would lean more toward aggressive treatment than step-up treatment. Methotrexate may work, but honestly it's probably the least well-studied of the immunomodulators. Imuran/6mp have both been studied more and can be given with a somewhat higher degree of confidence. That's not to say methotrexate won't work at all, just that it's usually given if the person can't tolerate imuran or 6mp first.

Also, since it's critical to get it under control for the next few years, something like Remicade is not out of the question at all.

Find a good pediatric GI who also has plenty of experience with pediatric IBD. Not all pediatric GIs do.

I'm so sorry to read of your daughter's illness. My daughter has a debilitating illness so I understand how hard it is. It's far harder for me than dealing with my own illness.

Bareket, I too am very concerned with my daughter's growth. She was just at the 4th percentile for weight, and that is part of why we went to the exclusive enteral nutrition (EEN). She can't keep food in her body so we opted for this approach. Most kids thrive on it. EEN has no harmful effects (like the meds can) and can only give your kid the nutrients she needs. She can also do EN to supplement her current food. There are lots of options out there. Because of the severity of my daughter, we have had to do NG tube feeds but most kids can just drink it out of a straw like a juice box (sorry doesn't taste as good as juice though!)

Take a look in this forum or online for info on it, or if you'd like I can send you a few links. Most doctors in the states don't use EN or EEN as a 1st line of treatment, or unless there are major issues. Some of the products I know people have used is Modulen, EO28 SPLASH made by noecate, and we use Peptamen Jr. 1.5. The Peptamen is only available at select pharmacies, and normally needs a prescription. Modulen might too, I am not sure.

Feel free to ask away as questions come about. Everyone here is very helpful.

Just an update, I started my daughter on EEN. As she was hardly eating anything anyway I put her on Ensure Plus last night, and told her to only drink this for now. This has 350 calories a bottle, she had 3 last night, 1 this morning and I gave her 3 for school. I should receive the Peptamen Jr 1.5 tomorrow, and I have an appointment with the GI next week. I will keep you posted.

Hi Fighter- I am so sorry that you have had such a hard time. The kids and school did not seem to be nice to you. I appreciate your input and I will watch for this. I haven't seen any issues yet. Her friends and school are being supportive, but I will be aware.