My (Son's) Story

[clnrun]

My 11-year-old son was diagnosed with Crohn's on November 30. He missed 2.5 weeks of school and was in the hospital for 3 nights. By the time he was diagnosed (which wasn't that long but seemed like it was) he had lost 25% of his original weight (75 lbs down to 56.5 lbs at 4'9.5"). He is now on the mend, has gotten his weight and energy level back up. We are following up regularly with a pediatric GI practice. I have tons more details but I'll keep it at that for my initial post .

I need to look around this site to see if there are specific forums for children and/or their parents.

 

[DustyKat]

Hi clnrun and :welcome:

I'm so sorry to hear about your boy...:hug:...but it's good to hear that he is on the mend! Long may it continue Mum!

We do have a parent's forum here so pop by and have a good look around...

http://www.crohnsforum.com/forumdisplay.php?f=49

You'll find loads of support, info and laughs. Also have a look around the rest of the forum, in the treatment forum there will be sections covering all treatments and the diet forum is a good read.

Good luck and welcome aboard!

Dusty. xxx

 

[mikeyarmo]

Welcome clnrun,

I am glad your son is doing better now. That was a big weight loss, so it is good to see he is back to normal.

Hoping to learn more about you and your son so I hope to see you posting again on the forum soon!

 

[xJillx]

Hi clnrun and welcome! I am sorry to hear of your son's diagnosis. However, I am glad there has been an improvement to his health since getting his diagnosis. What is his current treatment plan?

I hope your son continues to feel better and better each day.

 

[mickey]

Welcome! Please please please, attend to his diet. Eliminate the sugars in his food and drink. I was diagnosed over 10 years ago and was able to be diagnosed as no sign of Crohns a few years back. I did much research and experimenting and have discovered your diet is key to disease. Bad food in, disease out. I eliminated dairy, wheat, corn, grains, sugars (as much as possible, although dip into a cookie now and then, but can sometimes pay for it), red meats, and have found life to be completely turned around. Another key is for your son to learn his stress points and learn new ways to deal with his stress, so it is not internalized and causing more stress on his body. If he can make sure he is walking at least 30 min each day (or other exercise), eating right and getting good sleep, he CAN beat this! Make sure he is involved in the process, so he understands it better. Sometimes parents can want to solve the problem for their child, but the child does not "get" why it is being handled a particular way. The best thing my doc did when I was younger was to kick my mother out of the room (after she kept answering for me) and took me one on one to find out problems. Gave me empowerment to take responsibility for my health. As young as he is, health problems make them grow up quicker in some ways. Have a wonderful holiday!

 

[erinever]

Welcome! Glad he's on the mend

 

[clnrun]

Thank you!

Thanks for the welcomes.

My son is currently on ferrous sulf (iron), prednisolone, carafate and pentasa. When the pentasa has had a chance to kick in we will be weaning him off the prednisolone. After that, it's day by day to see if the med cocktail continues to work.

Thanks for the information on diet. I have been reading quite a bit about various diet plans for controlling Crohn's symptoms. Once my son is stable for a period of time I will introduce these ideas to him. Right now we are just concerned that he gain his weight and energy back and get over the initial presentation of the disease.

:ysmile:

 

[clnrun]

DustyKat, you have TWO kids with Crohn's? And both have had hemicoloctomies? Ugh. That must be tough... for them and for you. Hugs!

 

[DustyKat]

Yep! Very different history's and presentations but carbon copies of each other when it to the disease itself and it's outcomes. The last twelve months has been pretty darn tough, lots to deal with in so many ways, but we are on top of things again and I have everything permanently crossed that it stays that way for a very loooooooooooooong time!

Dusty. xxx

 

[kimmidwife]

Hi Cinrun,
Welcome, My daughter was also diagnosed at 11yo and is now 14. She has had a rough time of it but everyone is different and I hope your son responds well to the meds. I see you are in Illinois are you near Chicago? Where are you guys being seen? I am in St. Louis and we have sone really great pediatric GI's here if you need a second opinion on anything.

 

[Dexky]

Welcome Clnrun! It sounds like you guys are on the right track. Don't be surprised if your GI wants your son on something stronger than Pentasa after his pred course is run. Good luck!!

 

[clnrun]

kimmidwife,

We are in the nw suburbs of Chicago. The practice we go to is Children's Center for Digestive Health (www.tummydocs.com).

 

[kimmidwife]

I thought that was Chicago. Are you happy with his doctors so far? I have a friend whose grandson has crohn a and is in Chicago. I an not sure who they see but I could ask

 

[KWalker]

Welcome to the site! If you haven't found it yet there is a subforum for Parents of Children with IBS/IBD, and lots of parents on here. You can find pretty much anything you need to know on here, and best of luck with your sons health!

You could even get your son on here so he can join the "Teens Only" section and he can interact with other kids around his age dealing with the same thing

 

[crazycanuck]

Hi there welcome to the forums.

First off I am so sorry for your son but good thing he is diagnosed and treatment has started. I'm glad to hear he is gaining weight and energy quickly too.

I just wanted to put in my 2¢ about the extreme diet changes proposed earlier. As I'm sure you've figured out Crohn's is an extremely individualized disease. Those with Crohn's in the same areas will differ in what they can and can't eat and it also depends on the medication. I'd be cautious as to what you start cutting out because as a young boy you don't want to stunt growth by limiting the amount of whatever he is eating. I'd recommend speaking with a dietician once he gets settled in and see what is the best nutritional approach. I stopped growing mid growth spurt when I started having symptoms and was diagnosed at 16 so that's why I have these opinions.

Anyway best of luck and happy reading. Have a Merry Christmas!

 

[clnrun]

kimmidwife: Yes, we are happy with the doctor we are seeing. I feel like she really cares and takes time to listen and answer my questions.

crazycanuck: Thanks for sharing your opinion. I think the best thing to do would be to consult a dietician. The more I read the more conflicting advice I see out there.