B12? SIBO? Anemia? Short Bowel?

[Soltissj23]

I don’t even know where to start. My 3.5 year old has neuropathy, muscle wasting, he is so incredibly pale and fatigued. We’ve been treating SIBO and symptoms get worse (neuropathy, plmd, restless leg, paleness, energy level. However, bloat and digestive issues seem to have gotten better. B12 is getting higher, now at 1357 and yet his neuropathy is worse. It’s now in his hands and arms. MMA and Homocysteine are normal, higher than before, but still normal. Red and white blood cell count are at the lowest level of normal. Other than our naturopath we can’t find anyone to consider something is wrong. His pancreatic enzymes are the lowest they can be for what’s considered normal. We have so many symptoms but bc nothing is drastically low we aren’t getting help. Naturopath isn’t willing to do B12 injections bc his blood level is still high and we don’t have any other lab work showing deficiency. At a loss. His iron and ferritin were so bad we had to give him an infusion bc his levels were dropping as we continued to supplement orally. I’m worried the xifaxan helped with bloat and distention, but has made neurological issues worse. Thoughts? Every once in awhile his BUN and Creatinine are off and so are his AST and ALT but GI says not to worry unless they’re like double what they should be. We have no one looking into this. We are told he’s pale bc we are European decent and he is small bc my hubby and I aren’t huge ppl. But my son has lost muscle and hasn’t gained a pound in the last 8 months. Also, he is always itchy?

[Nackapan]

Sorry to hear child is so poorly. Have they ever been b12 deficient or had b12 therapy?

It sounds very complex.

On this forum we share experiences of getting treatment and dealing with the symptoms of PA or b12 deficiency or functional b12 deficiency.

I hope you push and get every specialist to see them to first rule things out

He /she should be under a paediatrician leading every investigation.

My child was ill from a very young age and it takes alot of pushing to get heard when you know they are not 'right'

I don't understand the results and high b12 level.

I wish him/her well and you get some answers and appropriate treatment

[Gambit62 Administrator]

Soltissj23, please note that HU including this forum isn't a source of or substitute for professional medical advice.We definitely aren't experts in paediatric medicine and whilst B12 might be a possible part of what is going on there are a large number of other things.

This forum is actually about a condition that leads to B12 absorption problems and to a B12 deficiency which needs to be treated with B12 injections.

There are a number of things (aside from injections) that could cause raised B12 levels but they are outside the scope of this forum and you really need to seek professional medical advice. You could look into genetic testing to see if that throws up anything - but I would suggest that you talk to a genetic counsellor first - they could help you explore whether there are any family histories of things that might be related.

I am afraid that all we can really do is offer you sympathy.