My son is 12 and recently diagnosed with crohns

[mreyn]

Hi, After going through what must be hell on earth, we received a diagnosis of Crohns. It is in his ileum. I won't go into what all I feel and am going through. But as a child, they feel very different, very alone and like others don't understand. He has a facebook and it would be great for him to be able to connect with other kids who are going through the same thing so they have peer support. I'm not sure how to go about it, but I would be happy to share his facebook page with other parents whose kids may want to connect.

Thank you

 

[michaelearnest]

Hello there - I am sorry that you received the bad news, but tell your 12 year old life can be fairly normal. First rules, he must listen to his parents and doctors. If he plays any sports, he will be able to continue the sports with some adjustments. I have been involved in soccer the past 25 years and I am a goalkeeper out of all things. I have Crohns and I have people kicking the soccer ball at my gut all the time, and yes, I do wear a brace to protect me. Have him like my facebook page, we cater to athletes on that page and I'm sure more posts will follow with kids he can connect with. Do not be afraid to ask ANY questions or share your emotions with us, been there done that.

 

[Supermom]

My son is 12 also and he was diagnosed 8 months ago. I wish I could take all his pain away. He started 7th grade a few days ago and although only the teachers know of his condition, my biggest fear is other kids may find out and he will be devastated. He does not have a facebook page yet but I sure wish he knew kids personally that are going through the same thing. I wish your son the best and hope that one day they find a cure for this crappy disease...I hate Crohn's!!

 

[Supermom]

@Michael...I always like hearing the encouraging words when it comes to sports..especially soccer. Even though my son has had the diagnosis of Crohn's for 8 months now, he probably had it previous to that. But he has been playing soccer for eight years. His stomach has been having pains lately and he has a soccer skills assessment in a few days and he assures me he will be fine to play soccer. I sure hope so. I will have to check out your FB page. Thanks!

 

[michaelearnest]

Make sure the night before soccer and day of soccer, he eats the right foods. Be safe with mashed potatoes, plain baked potatoes, grilled chicken, etc. Stay away from dairy, spicey foods and deep fried. Prior to soccer, I eat a banana, it works for me, others it doesn't. I don't know your son but I will send best wishes and please both of you update me on his soccer assessment progress. Keep the faith and tell him to Never Give Up on his Gut.

 

[Sascot]

Hi, sorry to hear about your son - my son was 12 when diagnosed last year.
It was really heartbreaking. Onto good days and bad days now but most of the time I am dealing alright with it all. Wishing your son all the best for remission.
Michael - my son is a goalkeeper too. Seems ok so far but I do worry about his peri-anal fistula what with all the diving onto the ground!

 

[DustyKat]

Hi mreyn and :welcome:

I'm so vey sorry to hear about boy, such a difficult and heartbreaking time for you all. :hug:

I hope he is responding to whatever treatment he is on, bless him.

I will put the suggestion here that if any parent's wish to make contact with you regarding fb then they send you a PM so any information provided remains private.

Good luck Mum and welcome aboard. If you have any questions about anything at all please don't hesitate to ask.

Dusty. xxx

 

[Mom2oneboy]

Welcome! Sorry to hear about your little guy. I have an 11 year old that was diagnosed this past February. It came as such a shock and nothing we wish for our kids to deal with. My son does not have facebook...sorry. Hoping for better days ahead for you all!!

 

[farmerswifey]

I'm so sorry to hear about your son, we are waiting on a diagnosis on my son who is 9..it's truly heartbreaking...I kind of feel like I am grieving...can no longer say I have three healthy children......

I wish your little guy all the best x

 

[Farmwife]

How sad to hear about your son.
I hope all will go better for him soon.
Great idea about having him connect with other kids.
Your a very thoughtful mom.
My Grace is only three and she already knows that she spends more time in the rest room them most people. Poor kids.
Thankfully they bounce back faster than we do.
Their amazing on what they can handle.


Farmwife

 

[my little penguin]

hugs an 8 year old here-
He does sports (swimming) and extra stuff at school-
It takes time but you get to a new normal-
WE are still working on ours- but I am told in a year you get back......

 

[Jenn]

Welcome and sorry about your son! My son is not yet on Facebook, I hope yours can connect and make some friends. First stop, check out ccfa.org, they have a teen site he might be interested in: http://www.ucandcrohns.org/ And be sure to request the comic book, Pete's story: http://www.ccfa.org/resources/pete-learns-about-crohns-uc.html there is a pdf you can download on the right. It greatly helped my son understand his disease so much. Be sure to look into CCFA's Camp Oasis, my son just went and had a blast! Lastly, look for your local Take Steps and join in.

We initially didn't tell people about his Crohn's, and I still let him tell his friends as much as he wants to. We are 2 years in now and all our friends/family know and most of his friends' parents and all his teachers. It is not something to be ashamed of, if sometimes embarassing. You may be surprised at how much people and kids are supportive and nice and not mean. Glad you found the board. Good luck!

 

[Jmrogers4]

Sorry to hear about your son's diagnosis. My son just turned 13 and he does have a facebook page. He would be happy to friend your son, he is also has friends on there from camp who are also fellow crohnies and they do a lot of instant/private messeging especially when one of them happens to be going through a flare or diet change or pretty much anything to do with it. My son doesn't play soccer, however he does play baseball and football and his life pretty much revolves around sports.
He was just chosen as Boise's honored hero for CCFA's Take Steps fundraiser. Have your son watch his video if you want it is about a 1:30 minutes long but he talks about playing sports. It is at http://www.youtube.com/watch?v=NmzJJyVBiwk.

 

[Jmrogers4]

Sent you a PM with his facebook info.

 

[D's Mom]

My son was diagnosed on his 14th birthday. D is now 17. In our situation it was scarier at the beginning, maybe because my son was down to 60 lbs and blood transfusions before we got a diagnosis. Missed 6 weeks of school before he went back. D started on Asocol and pred-face huge when he went back to school and the kids thought he was dying. Switching Pred to Entocort took care of the weight gain and huge face. 3 1/2 years later he shares more freely with his friends, which has helped them understand when he is moody, exhausted, misses school and especially now that he has decided to not play his favorite sports. He started Remicade before christmas and now has had 6 treatments. Less time in bathroom, less joint pain (not all gone), less missed school and off steriods. Remicade treatments exhaust him for days and he is having a strange symptom (heart beat rushes and veins up his neck hurt) but we are being told he is remission, so staying with it for now. I know that is a lot of info and you are worried about the future, hope that this helps you.

 

[Dutch941]

Mreyn, Welcome. So sorry to hear about your son. My son was also 12 last year when we discovered he was ill with what we now know is severe UC. It was and still is a horrible experience. But, you have found the right place to seek information and support. I see you already have often some suggestions that are great....all I can add is to feel free to share. What you feel and what you are going through is experienced by all here...I found it very helpful to share my pain and my fears ..to have others remind me i was not alone.
We signed my son up for Facebook after we were told it was super important to foster Strong social connections to resist any type of social retreat. Which I'm told is common with IBD kids.
Feel free to PM me with his Facebook info and I will pass it along to my son, matt, who is an avid hockey player despite what he went through over the last year.
Keep your head up.......this doesn't stop either of your lives...it simply changes it a bit.
Dutch

 

[Keepingfaith]

I just PM you but welcome to the forum!

I agree with others you all(as a family) should get involved with your local CCFA Chapter. I'm the CCFA honored hero this year for my chapter and have had a fee magazines, newspapers etc contact me for upcoming interviews just for raising loads of money through the CCFA. It will also help him with scholarship opportunities! I do a lot of CCFA events(almost once a week). Ive met so many other people with this DX and some have become good friends!

I do swimming with Crohn's and it has really helEd my joints. Although I tire out quickly it's worth it. I'm a girl & 16 so he probably won't want to talk to me Lol but I'm here if you or him need to vent or just talk to someone who understands! Your a great mommy! I don't know what I'd do without my momma & daddy! Know he appreciates you for supporting him!