Does anyone have a child with Crohns or colitis or some other digestive issues.

[misty]

My 5yr old DS has had issues with his digestive system since he was a baby. He has been tested for numerous things over the years with no answers. My SIL brought up the possibility of Crohns disease, and it is something I feel is definitely worth investigating. Unfortunately, given we are in the public system and been going to different doctors for years already, I'm not expecting things to move quickly towards investigating.

I was just hoping some people here might share their experiences of the kinds of symptoms and behaviors of their kids who have Crohns or other digestive problems.

My DS has always had issues with milk (although not nessecarily lactose) causing severe tummy pain and vommiting. he is very anemic (something that is reoccurring). Refuses to eat much other then bread, rice, pasta or meat (chicken or beef) - will literally starve himself rather then eat anything else, although I can usually get him to eat an apple a day (the only fruit he will tolerate, he won't /cann't tolerate any vege other then potato - it can be hard to tell when he is rejecting a food because it causes pain or because he doesn't like the taste though). Has excessive thirst. He gets severe tummy pains a lot - sometimes made worse if he eats too much rice or pasta. He's tummy will get a little bloated and hard when he is in pain, and certain areas are painful to him odd you touch. ((yes, the doctor knows all those, but still seems clueless)).

Any suggestions I can take back to my dr would be great.

He's had ultrasounds (with a 'marginally' larger then normal liver, but apparently nothing to worry about?!). Been tested for diabeties (when he was 1.5yrs old). Been tested for intestinal worms / and other parasites (although I'm going to double check about Guardia). Has been tested for lactose intolerance. And a few other things I cann't remember.

[nickle730]

Hi Misty, Sounds terrible for your little bloke, I hope you can find some answers. Has he been tested for Coeliac disease? It's an intolerance to gluten and results in many of the symptoms you have described. Are his bowel motions normal? The test for CD is a blood test to check for antibodies to gluten and if the results are positive the condition is confirmed with a bowel biopsy. Good luck.

[Olive]

I think you need to look into the private system, if he has crohns then it needs sorting ASAP.
Have you looked into milk protein allergy?

[Khaleesi]

I agree with Olive, i would look into seeing a private G.I doctor.
Mine bulk bills & he works in the public & private systems.

I'd google a Dr, then make an appointment & then get the referral from the GP

[Yael]

my child doesn't, but my DD had severe FTT and we had a gastro-enterologist do exploitative surgery & take biopsy's. If you are over the medicare threshold it doesn't end up costing that much to see them.

My 2 close friends have Crohns & Ulcerative colitis. I know the one with colitis can't have any diary or it makes it worse. I can ask them what is was like when they were kids.

[misty]

It's the waiting list to see the specialist which is long. My other DS is looking at a 12mth wait to see the immunologist, and I'm pretty sure the gastrointestologist is a similar wait. Private health care is not an option, and doesn't nealssecarily reduce the wait time here in Canberra. The issue is not enough specialists in the area. But if we can narrow down likely suspects with the GP while we wait, we can at least start looking a various treatment options and ruling out those the GP can test for.

I'll add Coeliac to my list. His bowel movements are always loose and yuck.

Yael - what is FTT?

[Livinthedream]

Yael - what is FTT?

I believe it is Failure To Thrive.

I hope you get some answers soon

[Olive]

It's the waiting list to see the specialist which is long. My other DS is looking at a 12mth wait to see the immunologist, and I'm pretty sure the gastrointestologist is a similar wait. Private health care is not an option, and doesn't nealssecarily reduce the wait time here in Canberra. The issue is not enough specialists in the area. But if we can narrow down likely suspects with the GP while we wait, we can at least start looking a various treatment options and ruling out those the GP can test for.

I'll add Coeliac to my list. His bowel movements are always loose and yuck.

Yael - what is FTT?

I'd ring and ask regarding wait times, I'd also ask for estimates on fees etc.... Seeing someone privately often bumps you up on public lists for hospital etc...
Honestly something's just can't wait years, crohns is serious untreated

[sepata]

Have a look into gaps diet misty. Dh has been suffering from suspected crohns for about 6 months and following the gaps diet has really helped eliminate pain and other issues. My sil has been diagnosed with crohns for about 10 years now. She was heavily medicated for 9 years but now controls it with a crohns specific raw vegan diet. She is completely medication free now.

[misty]

The problem is we cann't control his diet as such. This is a child who will literally starve himself rather then eat certain foods (most food). Number one priority at the moment is trying to get him to eat anything to gain a little weight. :/

[Yael]

With DD (and yes, I meant failure to thrive.. she looked like a starving African child with the big belly and the gaunt face), we also had a paediatric dietician, who had us on the Homeward HENS (google it) program, which is what they tube feed kids, but we gave it orally to avoid needing a nasal gastric tube. You can add it to food (there is powder, or a great liquid one (name has escaped me)) that you can mix into any food they will eat, and it is great for weight gain. I think its 100 cal per 100 ml, so you get their calorie intake up.

A paed dietician might be able to come up with some ideas to try.

Have you done a stool test to look at anything that might be coming up? Ours came up blank but it was good to eliminate everything.

[misty]

Thanks Yael. Yes, numerous stool tests. He is not absorbing the nutrients from the food as well as he should be (malabsorption) but haven't had a definitive answer for anything else. I will ask the GP about the powder when we go in next.
At the moment we are just treating all the symptoms though, it would be nice to address the underlying issue.