10 yr old dx 8/12

[william4]

greeitngs, i'm new here,trying to navigate my way around this forum. my 10 yr old boy was just dx 8/12 with crohns. my wife and i are absolutely sick over it. he was put on pred. and pentasa and improved until being weened of pred. on 9/14 we discovered what a "flare" is, absolutely scared the hell out of us( severe chest pain, fever,dehydrated) 3 trips to er in six days. now he just has diarrhea, he has also missed 2 weeks of school. our whole life has been turned upside down, today is the 3rd day in the last 2 weeks i haven't cried atleast once. I am glad to have found this forum, there seems to be alot of good people here to offer advice and support!

 

[David]

Hi William and welcome to the community!

Oh man, I'm so sorry to hear about your son. That's absolutely heart wrenching and I feel for your entire family

*hugs*

You've found the right place though. The people that make up this community are truly an amazing bunch. My two best pieces of advice are:

1. Connect with the other parents in our Parents of Kids with IBD forum. They're absolutely incredible and very knowledgeable.

2. Research enteral nutrition then discuss it with your doctors. It's a fantastic treatment option for kids with IBD, has pretty much no serious side effects, and much more efficacious than Pentasa.

We're here for you any time you need us.

 

[DustyKat]

Hi william4 and :welcome:

I am so very sorry to hear about your boy, bless him...:hug: and such a difficult and heartbreaking time for you and your wife.

Where is his Crohn's located?

How severe is it?

The very first thing that pops into my head is Enteral Nutrition. Unfortunately this is not a first line treatment for many of you in the US but it is elsewhere. It's not that it isn't available but doctors there seem unwillingly to utilise it. It can be a difficult treatment, compliance wise, but has the same remission rates as prednisone without the side effects plus it has the added advantage of providing complete nutrition. Well worth discussing with your doctor.

Please pop by the Parent's Forum, there are loads of folk there that have or have had their children on EN and they are an absolute wealth of information not only on that but all manner of things.

We understand exactly how you are feeling Dad, we are all travelling that same path, some are just beginning like yourselves and others are much further along in their journey. You will find the support amazing and a godsend, I am one of those that is a long way down the path and have travelled it twice and I still find myself needing support and the knowing you are not alone makes the world of difference. Unless you know someone that is personally facing the same struggles as you it can be very isolating and frightening. Your world has just been turned upside down, your dreams and wishes for your child dashed and you wonder if it will ever get any better. I know it is hard to see any light right now but it does and it will get better, you will get your boy back and life will be better than ever because you realise just how fab normal and boring is! :lol:

Any questions you have please don't hesitate to ask and just remember, there is no such thing as a dumb question!

Good luck and welcome aboard!

Dusty. xxx

 

[DustyKat]

And as you can see I am not the fastest typer in the world! :lol:

 

[william4]

wow, speedy reply, thank you! his crohns is located in the ileum and part of the colon,still having toruble getting a handle on terminology, enteral nutrition, i just read one of your posts from it awhile back. (on a short note, i spent my honeymoon in nsw,victoria,tasmania and queensland, great country and great people!)

 

[DustyKat]

It sounds as if your boy has ileocolitis, this is the most common form of Crohn's. EN is particularly successful on the small bowel so again, well worth discussing with the doc.

David has a very informative thread about Mesalamine (a variation of this is Pentasa) located here. Well worth a read given your son's issues.

Fab to hear you enjoyed your time here! Funny when you live in a place, I don't think of the east coast of Australia as a honeymoon destination for American's! :lol:

Dusty. xxx

 

[DustyKat]

Oh I mean't to add to be sure and have his B12, Iron Studies, Folate and Vitamin D, for starters, regularly monitored for deficiency since he has ileal involvement.

Dusty.