Hello - New to the Group

[Guest guest]

Hello,

My name is and I've been lurking here for a week or so. I'm posting

today (and also on LDNandIBD-not allowed to post on LDDNandAutism where the kids

are!)on behalf of my daughter, Kaitlyn, age 11 who has either CD or UC. I'm so

happy to be a part of this group. We are trying to avoid prednisone again and

also all the immunosuppressant meds that our GI has offered. We have gotten the

50mg naltrexone pills and mixed one tabliet with 50ml water and plan to begin

tonight.

First I'll ask my questions: She is 5 feet tall and weighs 70 lbs., how much

should we begin with?? One doctor recommended 4.5mg and another said to begin

lower at about 3.0mg or less. Other than sleep disturbances, what side effects

are children seeing? How many have had their liver enzymes raised from LDN, if

any? Have there been any long term effects noted by the long-time LDNers?

Her story if you'd like to read, not so briefly, sorry!:

Stomach bug going around and the entire family had it. Ours went away but

Kaitlyn's did not. D continued and ped said " rotavirus " and it will go away in

time, maybe weeks or a month. Well, it didn't and in 6/2007 she was scoped

after it turned nasty with B and many trips to the restroom. They said UC that

day and started her on 40 mg pred. Two weeks later they said " CD " . Took 4

months to wean off pred. Started SCD during this time 9/2007 and Flagyl and

Pentasa and things got better. After a year we weaned off Pentasa. She was

strict SCD for 1 1/2 years. No trad meds, but we did do herbs, acupuncture.

IBD Ser. test said " UC " .

7/2009 many in the family got food poisoning, including Kaitlyn. Ours went away

but hers lingered. Went back to intro SCD and things eventually improved until

school started. Back to intro again. 12/2009 then the stomach viruses began in

school again and Kaitlyn had " something " that seemed to have all the symptoms

every other kid had: D and 4-5 days of high fever, etc. This happened again in

January and it has been downhill since.

The virus lead to a cough which lead to bronchitis (1st time ever) and they put

her on 40mg pred for 4 days, Zithromax for 5 days, and inhaler. She got better

and bms were formed for about 2 weeks. Then this is when we saw B for the first

time since diagnosis and frequency increased to about 4x/day. Back to intro

again! We've noticed lately that each time any doctor pushes on her stomach,

that night or the next day there is B. Apparently this could mean fissures.

This week she also had pink-eye which I understand could be bacterial or viral

from UC. Her lactoferrin, sed rate, CRP rates are all very high.

She is doing fairly well now otherwise but is having a bad time with seasonal

allergies and coughing etc. Bms are 1 or 2x/day now and rarely see B. SCD has

helped very much but we feel it's time to try LDN to see if she can get back to

remission.

If you made it this far, thanks for " listening " . Any words of encouragement

would be great! I truly believe in SCD and don't want to have to use meds but I

know I must at this point. To us, LDN is the only med that seems promising!

We look forward to learning from this group!

-

Kaitlyn's Mom