10 yr old son just diagnosed

[FrauH]

We were just told our oldest has Crohns. He is scheduled for scopes and fistula repair on Tuesday. Doctor mentioned starting Remicade after this surgery. This has been such a whirlwind since Memorial Day when I took him to the emergency room with "butt pain." Yadda, yadda, yadda, a few blood tests, fecal test and a MRI later, we have a pretty solid diagnosis. Funny thing is, he never had any symptoms of Crohns- and now a fistula?! We live in Cincinnati and are seeing two of the best docs for Crohns at Children's. According to them, our son has an aggressive case and is beyond any nutrition therapy and needs to head straight to Remicade and maybe soon a partial removal of the lower intestine. Apparently MRI showed significant inflammation. Soooo, friend or foe, to the Internet I went. I am just panicked. I can't believe how awful this disease is and what the future holds for our son. No one in our family has ever had Crohns, let alone ever really knew what it was. They also suggested we get our 8 and 6 yr old tested. I guess I am just like every other parent with a recent diagnosis.

 

[DJW]

Hi and welcome. Sorry to hear of your sons DX. We have great parents here.

A fistula means its pretty aggressive. Remicade is a great drug. Unfortunately inflammation can be silent (no symptoms) yet still cause major damage as in your sons case.

With the internet, you often find only the worse case scenario. Many of us here were diagnosed as kids. We live full lives. Sometimes we need to make adjustments but the disease doesn't rule our lives.

Sending you both my support.

 

[FrauH]

Thx for your reply. It is nice to hear that you can lead a full life. I am worried about that for my son. When he found out he had Crohns, he broke down and wanted to die.... He is not normally dramatic, but he hates that he now is a "diseased kid" (his term) and that he can't have kids because he doesn't want to pass it on to them. (He is a very bright, old soul.) I just listen and remind him about what all he can do and to count his blessings. In my mind though, I am remembering all the horror stories I have read about Crohns. My husband and I are playing Crohns off as something he will just have to take medicine for like I do for my asthma- as said knowing how much more severe this disease is. We just don't want him to know. Apparently he will find out himself as his gets older and the disease progresses.

 

[lbligh]

He might be surprised about how many other kids have some disease or another.

I advise you to be careful about whitewashing the seriousness of this disease, too much. We tried to downplay side effects of medication, and later learned that our daughter (13) had done her own extensive research online. She didn't discuss what she learned with us, because she didn't want to upset us!

 

[my little penguin]

Welcome. There is a parents sub forum where all the cool parents of Ibd kids hang out .
http://www.crohnsforum.com/forumdisplay.php?f=49

My son was dx at age 7 and put on remicade at age 8. He is now 10 and on humira plus Mtx .
Nutritinal therapy does have its limitation but DS and a lot of other kiddos use it to increase growth , weight and prolong remission as an adjunct therapy to immunosuppresants and /or biologics .
DS started on 6-mp plus peptamen jr as EEN ( no foods ) for 9 weeks .
He now drinks 2-3 shakes of peptamen jr a day . This decreases inflammation and has let him have catch up growth /weight .
Most kids with Ibd need a lot of extra calories just to stay within normal limits.

DS loved remicade . My DH and DS made a day out of it. Gift shop cafeteria - movies at the infusion center , candy junk etc... Total guys days plus he got to miss school .
Our infusion center really caters to the kids.

Cchmc is one of the top pediatric Ibd programs in the country .
DS had multiple 2nd opinons there .
Good luck with the scope and join us with questions or concerns in the parents section.
I will tag johnny'smom , jmrogers , tesscorm, clash
Mehita

 

[Tesscorm]

I do remember how scary it was to hear the diagnosis. While I do have an aunt with crohns and a friend with a daughter with crohns, both of them had experienced symptoms much more severe than my son's and that little bit of knowledge, I think, made things even worse in my mind. But, what I've learned is that everyone has their own experience with Crohns - different symptoms, different success/reactions to meds, etc. While the information you'll read here and other sites is certainly valuable in helping you gain knowledge, it no way means that your son will experience the same setbacks or symptoms. Also keep in mind, that most (not all) members of forums are there because they are worried or are having problems. Very often those who are doing well, are not posting about their lives. But, rest assured there are many crohnies out there, living life to the fullest!

My son was diagnosed at 16 - once he began on his treatment, he has been 'fine' since (only small, quickly resolved issues). He continued to play on a competitive hockey team as well as other sports, got his drivers' license, graduated high school, travelled to Dominican Republic with friends, went away to university, works and has way too many nights of 'fun'! :lol:

His current treatment is remicade and he has had no problems with it. He actually had his infusion this morning and was gone for the night with friends by mid-afternoon. As was mentioned above, he doesn't mind the infusion - usually he sleeps but sometimes watches a movie, listens to music, etc.

He did exclusive enteral nutrition to induce remission and then continued with EN as a supplement. I very much encourage this!! I really do believe that the nutrition he gained from the formula helped keep his body healthy. Even since he started on remicade, he continues with 1-2 Boost shakes per day.

Have a look at the many subforums here and ask lots of questions. And, have a look at the sticky threads (those at the top of the forum page) on the Parents section - the sticky threads have lots of info there for you.

 

[FrauH]

Thank you for all the replies. I will have to search this forum and get acquainted. It is nice to have this Crohns forum, as most people with whom I speak are not familiar with this disease (like I was). They gave us info on support groups here in Cincy, but finding time to attend might be a difficult. I am sure we will attend some, but having this online is really helpful and comforting. Thanks again.

 

[Mehita]

Welcome FrauH! I have a 14 year old with Crohn's (dx'd at age 8). You will learn a LOT in the next year, but for your immediate needs, just spend some time browsing around the Forum here, especially the Parents section and don't hesitate to post your questions and concerns. There will always be someone who has gone through the same thing who can provide advice.

My son developed a fistula (and abscess) last fall and ended up in the hospital for it, so yes, fistula's do mean a more aggressive disease. Remicade is one of the better options for fistulas and my son got his first treatment while inpatient. He's been on it eight months and been in remission for 7 of the 8 months. There are also recent studies indicating that starting with Remicade as a first approach may be a better approach. Since you're at one of the top hospitals with the top doctors, I'd just go with what they're suggesting. I'm not saying to not do any research on your own or question them, but they are the top hospital with this top docs for a reason. One benefit that we've discovered with Remicade, which may apply to your kiddo as well, is that my son has done so well on it that he only has to think about his Crohn's once every eight weeks at this infusion.

One way to deal with the severity of the disease is explaining that there are different "versions" of Crohn's. Yes, some kids have bags, some don't. Some have surgery, some don't. Unfortunately, at his age, Google can be dangerous. I just found out from another mom that my son and her son used to Google "how not to be afraid of needles" on their phones on their morning bus ride. I had no idea he was doing this and I kind of wonder what else he's Googled about the disease.

I often tell my son stories of the kids here, particularly the success stories, so that 1) he hears about other kids with the disease, 2) he understands that the disease presents differently for everyone, and 3) other kids aren't letting their disease tie them down.

As far as support groups go, this one is the best!!

 

[Elisssa13]

Hi i'm 18 and was diagnosed with Crohns at 7. My parents enrolled me in this great, free summer camp for kids with Crohns and ulcerative colitis. It's called Camp Gut Busters and it's held by the Taylor Family Foundation. It is located in California however i know there are many different camps just like it around the country. I've been there for 2 summers as a camper and it was so great getting to know other kids my age that know what it's like to have this disease. I made a lot of friends and I still keep in contact with them. They are great supporters. Now I am a counselor for the camp and I really enjoy working with the children. They have so many fun activities like mini golf, tie dye, sports, swimming, talent shows, camp fires and skits and the food there is amazing! They also provide other food if some campers are on special diets. They're saying is they want to make the children feel like campers first and patients last and I just think it's a great place to be.

 

[araceli]

Hi and welcome to the forum. Sorry about your son's diagnosis. My Daughter was diagnosed at 14 and now she is 17. She started on remicade almost 2 years ago and she is doing good. I hope that whatever treatment you choose for your son works fast and he feels better soon. Sending Hugs and Support your way.