Worried about my son, please advise if you can

[SarahT88]

As the title says I am really worried about my 8 year old son. In around June he started opening his bowels more frequently. He would go around 4 or 5 times a day, usually grouped together in the evening. I asked him if his poo was normal, if he had any pain etc and he told me all was fine, I had a look on NHS website which said it was normal for children to go multiple times a day so I forgot about it. Fast forward to the end of July I find out by accident that he had been having mucous in his bowel movements and he had been to embarrassed to tell me (some had accidentally got on to the bathroom floor)
I took him to the doctor straight away and she wanted a stool sample and blood test to be taken. His results came back showing inflammation from his stool sample and his inflammation markers from his blood tests came back slightly elevated too. White blood cell count came back fine and he was clear for anemia. He is being referred to a pediatric GI specialist, I'm still waiting for an appointment. After getting his results I looked online to see what causes inflammation of the bowels and all I can find is the ibd disorders, crohns and colitis. Is there anything else it could be? I feel devastated that he could have something so life changing, he is only 8. I can't bear the thought of my baby having to spend his whole life going through cycles of pain, different medications and side effects, hospital procedures etc.

Apart from the frequency of bm and mucous his poo is normal, no diarrhea or constipation. He is well in himself. He is eating well. Sometimes he says his tummy feels funny, but no real pain. He is living his everyday life normally. I know many people have it much worse than he does at the moment,im just so worried. If it is ibd I know he is going to have some hard times ahead of him
Any advice would be really appreciated.
Forgot to add there is no family history of ibd.

 

[ronroush7]

Wishing him the best.

 

[DougUte]

I don't know of anything else that would cause inflammation markers to be raised. But IBS is a real disorder, and it has mucous in bowel movements. IBS is a pain, but it is not on the same level of the IBD's (Crohns and Colitis). Let the pediatric GI specialist run the tests. It is a very good sign that your son does not have anemia, as bleeding in the stools is a common problem with IBD. I pray everything goes well and this is not an IBD.

 

[my little penguin]

Sending hugs
My Ds was dx at age 7.
We knew something was wrong but had no idea crohns was even a possibility .
Gi went into the scope thinking it was allergic colitis came out saying it all looked out "ok" just a little red
Biopsies told a different story
Ds is 11 now.

We have a good parents group who can give btdt help with the tests etc...

I can say once you get the right meds things can be really close to normal or at least your new normal but getting there takes a while typically a year to find the right med combo since each kiddo is different


Other reasons for inflammation
Egids ( eosinophilic gastrointestinal disorders )
Celiac
Infections
TB
Spondyloarthraphy

Tagging
Maya142
Jmrogers
Crohnsinct
Clash
Tessincorm

 

[my little penguin]

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

Link to the parents section
Come join in
Ask questions

 

[Maya142]

Hi and welcome. Sorry to hear your kiddo is not doing so well. The parents section has a lot of great info. The inflammation in his stool and his inflammatory markers do sound like IBD. Kids with IBD have all sorts of symptoms: some have diarrhea, others constipation, some just growth failure, some have pain and others are completely asymptomatic. I'd try not to worry too much until you see the GI, easier said than done, I know!

My daughter was diagnosed at 16. The first year was hard but now she is doing well on a combination of meds. We also weren't expecting Crohn's -- we thought we were ruling it out in fact!

Keep us updated, we will be thinking of your little guy.

 

[crohnsinct]

Hi there. I know it is way easier said then done but try not to get ahead of yourself. Celiac can cause stool markers to be elevated. THe GI system is a very complex and complicated creature. Try to take is a day at a time.

If it does end up being IBD, it is not the end of the world. You will likely spend the first 6-12 months figuring out what works for your boy and then you can have many years of remission and normal living.

My older daughter was in ICU when diagnosed but 6 months after dx she was in remission and has stayed there ever since! 3 1/2 years now. She runs on the high school track teams and after her 2 hour practice she gets in the car and goes to another 2 hours of competitive swim practice. She barely misses school and has a 4.0 GPA.

My younger daughter is 9 months out from dx and while not yet in remission she still manages to have vey good school attendance, a good grade point average and plays on a softball team and in jazz band.

As you meet with the GI and approach procedures and such, don't forget we are here for you. Pretty much anything that comes up someone on here has btdt. We are an international and insomniac crew also so anytime you want to reach out someone is bound to be reading.

Hang in there and remember day at a time! :ghug:

 

[SarahT88]

Thank you all so much for your replies ☺
Its nice to hear how your children are doing so well and I feel a bit more optimistic that the inflamation could be something less serious and if he is Diagnosed with ibd he can still have a normal life. Its the not knowing that's getting to me at the moment

 

[SarahT88]

Pressed reply to early!
Thank you all so much again for the reassurance.

 

[Jmrogers4]

Late to the party but my son was diagnosed at 10 and it took a little while to find the right meds but I can say he is living a normal 16 year old life and you would never know he had crohn's.
My husband was diagnosed over 20 years ago and other then the first 5 years, (there has been so much research and new medication), his life has been pretty normal. We have 2 children and he has been there for every school play, every sports event. Has a great job and works 40+ hours a week.
Support forum like these are great but keep in mind that a lot of the times when people are posting they are at their worst for lack of a better phrase. You will probably never find my husband on here because he is out living his life and not thinking about his crohn's

 

[smt]

JMRogers4,

Stories like the one you have posted are what gives us hope. It is very very nice to hear that your husband works >40 hours/week on a great job. May he and your son continue to do well. Regards.

 

[irishgal]

So sorry to hear that your son may have issues, but I'd go wih the others and wait for the full GI workup. I was convinced my daughter had Crohn's like me when she started having belly pain, but it turned out to be easily managed SIBO. I understand your worry and anxiety. The internet is helpful, but it also allows fora lot of worry!

One thing I've come across recently is that Dr. Borody in Australia has a nearly 100% remission rate in treatment naive patients using his methods, which I'm pretty sure of AntiMAP. If my kids ended up with this, that's what I'd try, but that's just me. I know he's big into FMT and also is trialing Dietzia, so just something to consider if you ever get to that point, which I'm praying you don't. Never hurts to consider all options. Here's a website about all of that: TheCrohnsInfection.org.