Our 11 year old had the endoscopy & colonoscopy today

[nicumom]

So our 11 year old had the endo and colonoscopy today. The endo results were good, but the colonoscopy showed tiny white dots. They explained when he gets cold sores on the inside of his lips - that it's the same thing inside his intestines. Tiny ulcers. They said this was the classic look of Crohns.
They still did the biopsy and we have to wait 3-7 days for results. Of course the biopsy will test for dozens of things to rule out but the Dr. indicated that he is leaning toward a form of IBS - and that Crohns falls under IBS.
We are still dazed and confused.
His protein count in the stool in July had been 166. They told us when most kids/people are diagnosed that their protein counts can be over 1000 and the goal is to get it UNDER 400, so a 166 is good - and considered a "mild" form. Granted, that count hasn't been taken in a couple months - no idea if it has increased or not.
As I said, we are still dazed and confused and not sure what to expect in the days ahead. So sad for our little guy and all the other kids out there having to cope with Crohns and IBS of any kind

 

[my little penguin]

I think you mean Ibd .
Ibd is inflammatory bowel disease - which crohn's and ulcerative colitis are two kinds.
Ibd causes damage to the intestines .
Ibs is irritable bowel syndrome - which does not cause damage .
A large majority of people have Ibs.
A small percentage have Ibd.

Sorry to hear about the diagnosis

 

[nicumom]

Sorry for typo - IBD is correct. As I mentioned - we're still dazed and confused - reading online about so many horrible things and children having some sort of bag on them that they need to change? And nutrition info, etc...it's overwhelming.

 

[Mehita]

Welcome to the club, nicumom. Funny thing, auto correct changes your name to "nice mom". That just made my day!

While I encourage you to study up on Crohn's, even the scarier stuff, don't let it overwhelm you. Every parent here will tell you that each child is different. Your son may never, ever need most of the stuff you read or see. Educate yourself, but don't panic.

Has the doctor talked about meds yet? When is the next appt?

 

[Dexky]

I once read a nice tale on another forum about falling leaves. If you are standing in a forest and leaves are falling all around, only deal with the leaves that are falling on you. Don't overwhelm yourself with leaves you may never have to deal with. May all your leaves be easily brushed aside!! Good luck and welcome!

 

[Jmrogers4]

Welcome Nicumom, sorry you have had to search is out, but it is a wonderful community full of supportive and knowledgeable people. It is a lot to take in, make sure you get copies of everything, tests etc. put together a binder out is hard to remember things in the moment and I have gone to my binder often.
Read up, ask questions, we are here for you

 

[Johnnysmom]

My son was 11 years old at diagnosis too. It is very overwhelming at first but it gets much easier. There is a lot to learn but you will get the hang of things very quickly. As Mehita said, many of the things you read about may never pertain to your son's disease course.

We are in Cincinnati, so if you ever want to get together to chat, let me know. ((((hugs))))

 

[Brian'sMom]

Nicumom, Sorry to hear about your son. You'll find lots of support here. My advice right now is: be careful of the internet. It's easy to submerge yourself there with google searches. It can make a stressful time more stressful.

 

[Sascot]

Sorry to hear about your son's diagnosis! My son was 12 when diagnosed and yes it was an awful feeling. I hope the docs get your son's treatment started soon so he can feel better. Good luck with it all - kids are amazingly resilient and tend to cope alot better than we think they will.

 

[Catherine]

Welcome to the forum.

My daughter's crohn's activity is also considered mild. She was dx at 16, 18 months ago, but she was un-dx for up to four years.

For the most her Crohn's not longer stops her doing everything she wants. She swims a lot, she about to stop but it has very little to do with the illness, more that at 18 she wants to try other things.

She is her last year of high school and doing well.

Crohn's scares me and I ask at lot questions at times.

Remember most parents there and elsewhere on the web have kids with severe Crohn's

 

[Sudsy]

I agree with Jacqui. Best advice I got when my (first) dd was diagnosed: get a binder! Print out blood test results, what the doctor tells you, and questions you/your child have so that you will remember to ask at the next appt.

May your son soon know complete good health.

 

[ChampsMom]

Hugs to you Nicumom... so sorry to hear the news... Lots of prayers coming your way. I pray you have a good team of doctors and nurses you are working with to get your son on the road to remission!!

((((hugs))))

 

[ChampsMom]

I once read a nice tale on another forum about falling leaves. If you are standing in a forest and leaves are falling all around, only deal with the leaves that are falling on you. Don't overwhelm yourself with leaves you may never have to deal with. May all your leaves be easily brushed aside!! Good luck and welcome!

*Brilliant* Mark... Absolutely *brilliant*!!

 

[crohnsinct]

Nicumom: Sorry it is looking like you may have to join our group but if you have to chose one this is a great place for education, support and believe it or not laughs.

I want to echo the be careful of the internet. Yes, educate yourself but don't read all those scary personal stories. Those are just that....PERSONAL stories. You will quickly find out that no two people with Crohns are exactly alike. Also, the people posting are usually the ones having trouble. The ones in remission are off enjoying their healthy happy lives so you are usually looking at a much smaller subset of the population.

There will be a time when you can read those stories but at dx is probably not the time.

As for your "bag" comment, you are catching this disease early and that is great. Our doc emphatically preaches that early discovery and knocking down of inflammation is key to avoiding surgery down the road. Bravo to you for getting on it now!

If you have any questions once the doc has presented all the findings and recommendations ask away. You will always find someone who has btdt and who has excellent advice.

 

[Brian'sMom]

To add a little more to Crohnsinct; On this forum we have parents who stay around even tho their kids are doing better...or in remission. It's a better picture of kids with crohn's in my opinion.