New member needs advice please

[Guest guest]

Hello everyone

I have been diligently studying archives and websites pertaining to LDN and I'm hoping someone may be able to either validate or dispute our present course of action.

My dtr is 19, has Down Syndrome and Autism, previous heart surgeries, residual mitral leak, hypothyroid (treated for 17 yr.), has had one seizure last year, and CROHN'S. She's been on the specific carb diet for 5+ years, acidophilus 3billion, pureed diet, no allergens etc. Despite this she has been going downhill pretty regularly with her Crohn's dxed 2 years ago. She is on Entocort 3mg, Prevacid 30 mg., Clonidine for sleep, and synthroid .1 mg. I have fought putting her on Prednisone for fear of psychotic episodes noted with many autistic kids, and of not being able to get her off of it. She's also getting 3 periods a month now.

I spoke with Skip, our local, and now famous, compounding pharmacist and he told me I wouldn't like what he was going to say, but he felt that she should probably be put on the prednisone and her inflammation brought under control before we actually attempted LDN. (He did also suggest we see our local holistic doc). The GI doc is practically screaming at us to get her on the prednisone lest we end up soon in the hospital on TPN and transfusions.

She is not in pain so far as I can tell; it's difficult as she is nonverbal. She seems fairly happy actually.....tired and weak perhaps but happy. She keeps going anemic (both iron and B12), low protein, low cal, D3, with microscopic bleeding in the stool. I was in the hospital for 6 weeks during which time she was not given her supplements and I was hoping to take a few weeks to see how she does with the iron, B12 etc. etc. again. The GI doc says we don't have a few weeks.

I started her today on half of the 20mg. prednisone dose; I always like to check for reactions with a small dose before proceeding. She almost died from Pentasa (apparently can't take aspirin compunds).

I'm very sorry to take up so much space and I certainly appreciate that noone can medically diagnose what we should do. However I am wondering if anyone has any comments or ideas about the feasilbility of our ever actually getting her on LDN once we get on and off the steroids. I am needless to say extremely worried about her and my ability to think clearly about her treatment.

I can send her lab results if anyone is interested or if anyone even made it this far with this garbled message.

Thank you all so much

This LDN treatment is the first sign of hope we have had. I am on the autism-LDN list and a couple others too.

Sherry

gldcst@...