Reply to Cronh's story

[Guest guest]

Sent from my iPad

>

> My son was diagnosed at 19 with Crohn's. His was pretty bad and he was put on

antibiotics and prednisone 40 mg and pentasa and immuran. Every time he tried to

taper the pred below 20 he flared up. He came home from college and had surgery

last summer...just 3 mos after his diagnosis. They thought he had an abcess. The

only option to surgery we were given was remicade. I spent hours online doing

research and did not like that option...I didn't even want him on immuran but

the doctor bullied him into it and obviously it didn't work for him. We were

told he could have a drug free remission period with the surgery and I just

wanted him to start healing so we opted for that. Unfortunately I did not find

out about LDN soon enough for him to avoid having the illeocecal valve and some

terminal ileum and appendix out and they removed what turned out to be a fistula

not an abcess. But the doctors said the Crohn's WILL come back. When I found out

about LDN and tried to get the surgeon or gastro to write a scrip during follow

up visits they were not willing....need more studies, not approved for his

condition, etc. How bizarre they would put him on remicade but not LDN! I

realized that they have liability exposure for off label use but they are

protected with the approved drugs even if they are really harmful.

> Bottom line is he started 4.5 mg at bedtime (i found a doctor to write a

scrip) before he went back to school and he has been doing fine. It is the only

thing he takes besides some aloe and vitamins and probiotics. A couple of days

Of feeling a little off when he first started the LDN but no problems. We are

hoping it gives him a chance to stay healthy.

> My advice:

> Join the LDN for IBD group...this general LDN group is good but most are

MS people

> Get on the LDN cream or gel for transdermal use since they may not absorb

pills well.

> Try to get off everything but the LDN after a few months. You do not want a

growing child on the pred. Or other drugs.

> Research diets...SCD, The Makers diet, etc. Maybe have an IgG food sensitivity

blood test done. Some IBD people get great relief with a restricted diet. Our

gastro said to my son nothing you eat will change the course of your disease!

Unbelievable to me that he thinks that after reading a lot of personal stories.

> A NEW study on an antibiotic Refaximine for Crohn's was really encouraging.

> Good luck! You are your childs best advocate. It is really hard going against

any doctors recommendations but sometimes you have to.

> Doreen

>

>

> Sent from my iPad