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Newly Diagnosed 16 year old

I am new to the Forum to read, read, read all I can about Crohn's. My 16 year old son was just diagnosed 4 weeks ago with Crohn's. For approx. 4-5 years he has had stomach cramps/pains and bouts of diarrhea. Never had a firm BM. Seemed like it was brought on by dairy products and would last 1-2 days. He would complain of the pain. And I would think....stomach cramps.....who doesn't get them. Suck it up. Well he has played hockey since he has been 5. This year he has moved to a different team that has a vigorous off-ice work-out in addition to the on-ice and they go 12 months. The coaches had them drinking protein as a part of their work-out process. After 2 weeks of drinking the protein with MILK.....he went into a weeklong stretch of cramps and pains and diarrhea. After the 6th day - I took him to the ER because now it was going on for far too long and I was worried. The ran blood work and an xray. The ER dr suggested I take him to see a gastro specialist. Luckily for me, I know one personally and we were in within the week. He doesn't see "children" but he agreed to treat my son. We saw the dr on a Mon., Tues. he had blood work and Fri. he had the colonoscopy. When the Dr. came out from doing the colonoscopy.....he said he can't believe he didn't have any other symptoms that he most definetly has Crohn's. The medicine that he prescribed for him was not covered by 2 health plans so he went on 20mg prednisone for 1 month and a nightly supository. Last week he started to take him off the prednisone to see how his body responds. He also had the barium small bowel xrays which show something and I am waiting for the call back from the dr for that report.

I'm having a hard time not beating myself up over this. One of the first things my son asked me was "Am I going to die, Mom?". Of course I told him absolutely NOT and that he will be just fine with medication and listening to the dr and his body. But I didn't take his pain as serious as it was. I just had him avoid dairy. Maybe I could have prevented some of the damage that has been done if I would have acted sooner.

Any help on questions that I need to ask because all of this information is so overwhelming would help me. Thank you all!
 
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Welcome to the forum although I am sorry you had to find your way here. My son, 15 was also diagnosed with CD this year. There is a great sub forum for parents of kids with IBD that you may want to browse around. You will find loads of information and meet some wonderful people.
It is really great that you were able to get your son in with a GI and diagnosed so quickly. I think all of us feel a certain amount of guilt with CD but I feel it completely unwarranted. I know my son complained for quite awhile with trouble swallowing and nausea and the GP kept dismissing it as a virus so I was in suck it up mode too. Finally, C became anemic and the GP changed his tune and sent him to the GI. C was diagnosed fairly quickly by the GI and was started on Pred while we awaited an appt with a Ped GI and insurance approval of remicade.
I'm sure you will get some great advice from people way more experienced and I hope that your son is feeling better soon! I know this can all be overwhelming but there is loads of wonderful support here. You may want to check out the treatment subforum here too!:welcome:
 

DustyKat

Super Moderator
Hi HockeyMom15 and :welcome:

First up...:hug:...secondly, I know how hard it is not to beat yourself up about this but 20/20 vision in hindsight has to be the worst thing ever! We have all done it hun when we see the pieces of the puzzle come together, just know you aren't alone with that one! If you had had any inkling that it was something more serious you would have had to the ER pronto just as you did a a few short weeks ago. :hug:

Crohn's can and often is such an insidious disease, it creeps up on our kids so very slowly that we don't notice the changes and neither do they. For them it becomes their new normal and they continue to get on with life with neither of us realising the damage being done within. We will forever live with the guilt of our child having this disease and the what if's but you have already taken the next step and you are well on the way to channeling your energies into becoming the best darn advocate you possible can for your boy! Well done Mum! :thumleft:

You may like to look into Enteral Nutrition as a way of assisting to bring your son's symptoms under control. We have another Mum here with a son a little older than yours that has had success with keeping things under control with EN and she is a hockey Mom too! Tess will be in heaven! :lol: Hi Tess...:bigwave:

Also pop on over to the Parent's Forum. There's loads of fab folks hanging out there that are very knowledgeable and ready to lend a helping hand.

Have a look through the Treatment Forum and the Diet Forums and if you have any questions please don't hesitate to ask. As to questions for the docs these are the type of things I would ask...

-What is the diagnosis?

-Where is the disease active?

-What form does the disease take (inflammation, ulcers, fistulas)

-How severe would you say my disease was?

-What symptoms do I need to report immediately to you, which can wait until my
scheduled appointment, and which signify an emergency?

-What treatment options are open to me?

-What does (treatment) do? What side effects should I be aware of?

-How long before I should see an improvement?

-Do I need to take any nutritional supplements such as b12 or iron?

Good luck hun and welcome aboard!

Dusty. xxx
 
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Hi and welcome,
Dusty's right of course (if you stay here long enough you'll find most of us say that about her once or twice).
Beating yourself up is easy to do.
My Grace (still undiagnosed) has suffered so long it just became normal.
Now that were putting pieces to gather it's making more sense by the day.
However, when I start to get upset my hubby just says, at least were here now.
I'm glad you got a Dx right away. I hope he starts feeling better soon.
Remember we have a wonderful parents forum here that has been a load of help for me and others.


Farmwife
 
Welcome to the forum. You should really look into diet. Diet plays a very large role in Crohn's for so many people. There is alot of information out there, and so many willing to share on this forum. Good luck to you and I hope your son finds relief soon.
 

Tesscorm

Moderator
Staff member
Hi HockeyMom15,

Ah, another hockey mom!! :thumright:

As has been said above, please do not beat yourself up for not 'catching' the crohns earlier! It's so hard to be told that your child's illness cannot be cured, I can't imagine there's a parent out there who wouldn't question if there was something they could've done something differently. :(

My son was also diagnosed at 16, he's just turned 18 last week. His treatment was exclusive EN (formula only) for six weeks and, since then, it has been maintenance EN (the only med he has taken has been Nexium). EN provides bowel rest, nutrition, has anti-inflammatory properties and has a comparable success rate at inducing remission as do steroids. However, it's success rate at maintaining remission is not as high as medications - my son still has some inflammation so we may have to consider methotrexate sometime soon. Having said that, my son has had very few Crohn's related issues since beginning his treatment - it seems he is in clinical remission but not biochemical remission (hope I have the terms right :blush:). He regained the 25+ pounds he had lost (has actually gained almost 40 lbs since last May and grown 1 inch), after diagnosis in May, he was back to both his ball hockey and 3 on 3 ice teams in June (albeit skipping a few shifts here and there), began his rep hockey team training in August and played on both his rep team and school team over the winter. (Don't want to imply ALL has been perfect, he has had some days of feeling 'off' with some GI symptoms but, so far, all have resolved pretty much on their own :))

Diet-wise, his only restrictions have been seeds, nuts, corn and limited veggie/fruit skins. He eats all else (unfortunately, including some junk!). I have no doubt diet can help many people; in my son's case, as he has rarely shown any reaction to a food, it has been near impossible to 'eliminate' anything specific (although I have ensure that some anti-inflammatory or healthy type foods are included - olive and coconut oil, papaya, yoghurt with probiotics). I also give him Krill oil supplements each day. Not sure if any of it helps but it can't hurt. :)

Please do look into EN - it's a treatment that is commonly offered as a first-line treatment for children around the world except the U.S.! Not sure why but, regardless, it is something to ask your GI. It doesn't work as well for all forms of Crohn's but worth asking about. :)

Also as said above, there are a wonderful group of parents in the Parents of kids w/IBD forum - they are always willing to offer advice, support and laughs. Please drop by and don't hesitate to ask any questions.

Good luck!! :)
 
Thank you everyone! I did use Dusty's questions when I talked to the Dr office in regards to Jason's :hockey: test results from the barium x-ray. His crohn's is or started in his cecum. There is some strictures and scarring. His is also inflammatory and uclerative. Originally his dr wanted him on Endocort(?) but 2 health plans wouldn't cover it so he went on 20 mg Prednisone for 4 weeks. Now he is in the process of coming off the Prednisone. His Dr wants to see how his body reacts. The only symptom we are seeing is the fatigue and that's tough on him as he is very active and athletic. As I mentioned - he's a hockey player and they play/train 12 months a year. But his coaches are awesome and the one's wife is a nutritionist. He has no food restrictions and so far he hasn't found anything that bothers him. I have however stayed away from foods that would normally bother the digestive system.

After reading so much on these boards, I didn't realize that there were so many variations of the disease and from where we are at right now....I'd say we are pretty lucky. He still spends a lot of the time in the bathroom but that is something that he has always done.

One thing that I am greatful for is his friends. As Tess may know :yrolleyes: hockey kids are a different/weird bunch of kids!!! A great bunch of brothers!! When Jason told his closer friends/teammates, their reactions were UNBELIEVABLE!!! They have been all researching Crohn's to see what he is going through. They have been such wonderful friends and haven't treated him any differently.

Thanks to everyone for your kind words and helpful responses!!! I truly appreciate it and will need it again I'm sure!!!:biggrin:
 
I was also diagnoesd at age 16 after suffring stomach pains, low in energy and bloody diarreah for about three months before my mum made me go to my GP. I went to GP on the monday, had blood test on tuesday, had a colonoscopy on wednsday and had a speciliast meeting on the following monday. Before being diagnosed I was activelly doing Karate and also working partime at supermarket as a cheekout operator. So at that age I did have alot going on as well as the added school work and social resposiablties.

I am 23 years old now have had a few seatons placed and know currently have an Ileosotmy bag aswell. I am working as a graduate engineer at the moment and getting married next year.

Some advice from my experiance is do not blame your self we dont know why or how these things happen but it is no ones fault. Also let your son be the best he can be and dont let crohns hold him back.

This fourm is also very helpfull.

I now this post is not very helpfull but there are other people in the same positon as you and we are all here to help each other
 
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