Disabled son with very high fecal calprotectin

[keylc]

My son has very high fecal calprotectin levels, he is 9 and the last three have been 600+, 600+ and 500+, as our hospital only measures up to 600, he is on Neocate LCP as he is tube fed and unable to tolerate anything else, our Gastroenterology consultant has viewed a bowel biopsy from several years back which showed significant inflammation and has placed him on mesalazine granules. She says his blood results do not look like inflammatory bowel disease but the whole team are saying something is going on and he needs treatment, does anyone have any idea about what could be occurring? Anytime we try and change his diet we end up hospitalized with severe diarrhea and weight loss. He is non verbal so all i know is he gets painfully bloated, needs movicol daily to even go to the toilet on the Neocate and when something upsets his gut he has bloody mucousy loose stools. He wears nappies still and when in a flare up can have in excess od 10 bowel motions a day. His fecal calprotectin levels have all been obtained when he is stable and well. Thanks in advance, any advice will be welcome.

[BelindaSteyn]

So sorry to hear. In my opinion, and I am a mom of a crohnie, not a doctor, high fecal calprotecin levels are almost always an indication of IBD. My son's levels have always been high - even if he does not have a flare. His blood test are always normal. I would strongly suggest that you get another opinion or at least insist on a scope. I wish you the best.

[keylc in reply to BelindaSteyn]

Thank you for your input, we are still ongoing with testing and monitoring.

[Pte82]

keylc, has your son's diet been modified for his Crohn's? The stuttersence link raises the subject of thiamine deficiency. This deficiency impacts the brain and the vagus nerve leading to many IBS conditions. The deficiency may be a result of diarrhea caused magnesium loss as magnesium is needed for thiamine activation. Please search on "IBD thiamine" for more info. The TTFD form of thiamine is able to efficiently cross the blood/brain barrier as well as offering good absorption in the body. The B vitamins work better together. Also search on "tocotrienol crohn's disease" for benefits of this vitamin E form. Always consult the health care provider before using any supplement.

ncbi.nlm.nih.gov/pmc/articl...

crohnsandcolitishub.com.au/...

stuttersense.blogspot.com/2...

academic.oup.com/ecco-jcc/a...

[keylc in reply to Pte82]

My sons diet of Neocate has been that way since he was about 3 months old. He could not tolerate anything else and still cannot to this day. He takes a daily dose of a prophylactic antibiotic, and i do wonder if this is not helping, however without this he has multiple respiratory infections so we are kind of between a rock and a hard place. He also takes 20mg of Omeprazole so I will certainly look into the links you have provided and do some more research. Many thanks for your help.

[Pte82 in reply to keylc]

keylc, look at the Neocate LCP nutritional facts showing the amount of calcium and magnesium. It shows a 9 % Mg/Ca ratio. In the attached link, the information under the heading "Why the Mg/Ca ratio is important" the inflammation caused by calcium not balanced by magnesium is found. Another possible consequence of this low magnesium level is under activated thiamine as well as other functions. I encourage you to review this product with a pediatric nutritionist for the ingredients listed, the off label ingredients the manufacturer will need to contacted to provide and the level of each vitamin/mineral provided versus your son's current requirements. You'll note in the stuttersence link Omeprazole is an anti thiamine factor so combined with low magnesium there may be insufficient thiamine for all of your son's needs so a test may be indicated to discuss with the health care provider.

thepaleodiet.com/the-import...

mayocliniclabs.com/test-cat...

[keylc in reply to Pte82]

Thanks for your advice, but it was a pediatric nutritionist or dietetic specialist that prescribed the Neocate, without the neocate we have near constant vomiting with blood, and very watery diarrhea along with bloody mucous. We have tried a blended tube diet, elemental H20, nutramigen, isosource junior and neocate junior, none of which have helped any. At least the neocate allows him to grow and thrive. It is less than ideal as it is not formulated for an older child, but it is infinitely better than TPN which is our other alternative. As it is when he has severe episodes of his gut problems we usually end up with TPN for upto a month or so at a time. The problem with neurologically disabled children is the gut is usually also deficient as well. James has now been changed to Sulfalazine as well so I am hoping to see some positive changes within the next four weeks.

[keylc]

My sons diet of Neocate has been that way since he was about 3 months old. He could not tolerate anything else and still cannot to this day. He takes a daily dose of a prophylactic antibiotic, and i do wonder if this is not helping, however without this he has multiple respiratory infections so we are kind of between a rock and a hard place. He also takes 20mg of Omeprazole so I will certainly look into the links you have provided and do some more research. Many thanks for your help.