Dietitian thinks ibd: crohns or colitis

[mummy2gastricboy]

My little boy is 3 years old. Hes been ill for some time now.
Hes had severe reflux amd failure to thrive and lots of different food aversions.
Hes got a gastrostomy to feed him as he doesnt eat.
Hes had meningitis and blood poisoning in the past.
Now for nearly a year now hes been bleeding on the inside (coffee ground, fresh blood and orangey blood) he also has black hard specs of blood from uper gastri bleeding for a while bow ( on and off) he suffers from chronic constipation too hes on meds and he goes nearly every 4 days.

This keeps happening. His gastric dr has done a scope but when the bleeding stopped so obviously they couldn't tell where the bleed was. He has had half a colonoscopy (no bowel prep so they couldn't see anything)
hes had the whole fresh blood mixed with mucus in poo too.
He gets ulcers in his mouth and a lot of pain in there too.
He goes through phases where hes really tired and doesnt do much but no temp or anything. He also gets really bad tummy ache. Hes currently on mevberine for it. His gastric dr keeps dismissing all his problems.

Can anyone shed some light please

 

[mummy2gastricboy]

Woops I was just goimg through the post again and he also gets joint pain (mainly arms and legs) and back pain.

 

[lgpcarter]

Sounds more like Crohn's than Colitis, but lots going on with your little guy, so could be other things as well.

Sounds like it is time to get a second opinion from a paediatric GI.

 

[mummy2gastricboy]

I think all of his problems are most likely centred around this (crohns /colitis) as it all seems to be stomach related if that makes sense?

 

[durwardian]

Please get him to an immunologist if you haven't been there. Hematology can do the tests. It could be similar to other pseudo-crohn's diseases. Without proper nutrition, and bleeding, he will have growth and healing problems. Mainly ask directly to check the immune globulin levels, with nutrition down, this could be making things worse, or the cause. I hope you can find answers and help him. It must be miserable on everyone. Keep trying!

 

[mummy2gastricboy]

Hes on neocate advance via feeding tube. Most days he can tolerate it.its an elemental feed thats pre digested. Durwardian is there anything specific I should ask for apart from ig levels. At 1 point iga was low? But rest normal?
Thanks

 

[durwardian]

Low IgA is enough of a sign to get it boosted. My doctors made the mistake of saying I had Crohn's, and gave me immune supressants, making me sicker. The immunologist reversed that and boosted my immune system, which put me in remission for 2 years. Now it has crashed again and it is difficult to get the treatment approved. IgA therapy is very expensive.

 

[durwardian]

Mother's milk has a little in it, but probably not enough.

 

[mummy2gastricboy]

Hes allergic to bm. I did try him when he was born and I was on meds then so might have been.
I will try and find the full results list.

 

[mummy2gastricboy]

The full resultsFerritin low less than 4 B12 316 whixh is normal Serum folate 18Hb 11.5White cell 10.5Platelets 379Thyroid normalLfts normal*TTG lesd than 0.1 although IgA is low at 0.6, lgG was less than0.1 . Vitamin D was 68.8 which is normal.

 

[durwardian]

Looks like my results. Please ask about the plasma therapy. With his size and weight it won't take much. First time getting the infusion I had some breathing issues, over excited anxiety feelings. After that I felt great pretty quickly.

 

[durwardian]

Perhaps they don't give it to small children that way

 

[durwardian]

If he has my issues, then you have a modern vampire to care for that usually makes the kids feel special and smile

 

[durwardian]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3221851/

 

[durwardian]

That says yes for children. It is like a 4 hour bee sting, so he's not going to like it until he feels better. Then when he starts feeling bad, it will be, let's go Mom.

 

[my little penguin]

Please check out the parents section there are alit if little ones 3 , 4 5 etc who are tube fed formula only including neocate .

Sorry your little one is so sick
Is there a reason they won't do a full colonscopy on him?

I have seen them in kids younger than three .

Here is the link to the. Parents group

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

 

[mummy2gastricboy]

When hes well he doesn't stop!
Thanks for the info will give it a good read
We should hopefully be getting an appointment to see his gastrics soon.
little penguin thank you for the link too!