2004 - Crohn’s Disease
January 2008 - LDN
My son developed the first symptoms of Crohn's in 2003 at 9 years of age, and it proved to be severe, resulting in a 60 cm small bowel resection at the young age of 10.
After being on Imuran for almost 4 years, he had a flare from his gastric mucosa to his descending colon, and developed hypovolemic shock. None of the drugs he was prescribed helped him, nor did the surgery. When he got out of the hospital he was still not normal.
When I learned of low dose naltrexone as a treatment option, I researched it further and decided it was worth trying.
I started him on low dose naltrexone (LDN) in January 2008, and within 2 weeks his color had returned and his energy was back to normal. At his follow up examination 5 months later, his lab results were the best they'd been since diagnosis.
He's had NO flare ups since. He still has symptoms of cramping, but only when he does not follow his diet, and it's been 18 months now.
This is how our story started:
In October 2003, I took my ten year old son to the Pediatrician to investigate severe fatigue, and why he'd gained no weight in two years.
I have been a Physician Assistant (PA) for 27 years, so I strongly encouraged the Pediatrician to run some basic blood tests. Due to the blood tests revealing extremely low levels of iron, the Pediatrician recommended iron supplements.
We tried 6 different iron preparations, and my son vomited with each one, so we again consulted the Pediatrician. I suggested finding out why he was anemic, and to perform tests to rule out Celiac disease. The doctor agreed, and his TGG test was slightly high, suggestive of possible celiac.
In November 2003 we saw a Pediatric Gastroenterologist. He scheduled my son for upper and lower endoscopies performed over the following two months, resulting in a diagnosis of Crohn's disease in January 2004, and a prescription for Prednisone at the same appointment.
The same month we had to consult a surgeon due to my son developing an abdominal distention, and incapacity to eat. The surgeon recommended surgery to address my son's obstruction.
During surgery in February 2004, 60 cm of his small bowel was involved with the disease as opposed to the predicted 10 cm on the CT scan. Therefore that segment was resected. The pathology report showed it was nearly perforated.
He was prescribed Prednisone for 6 weeks, and Imuran permanently. My son began to recover and gain weight. Blood tests revealed his Hgb went up to 11.8.
In May 2004 we started supplementing his diet with 300mg of fish oil per day.
Between May 2004 and November 2007, he did well on 150mg Imuran per day, but on 29th October 2007 he developed tremendous diarrhoea and lost 19 pounds, with his weight slipping from 116lbs to 97lbs in 5 days.
Hypovolemic shock followed, and we nearly lost our son.
Repeat CT scans were taken, and upper and lower endoscopies performed. They revealed active Crohn's from my son's stomach to his lower bowel, with abscesses in his stomach and throughout his whole intestinal tract, as well as granulomas.
He was treated with antibiotics, Azacol, and Flagyl, fed IV nutrition. He was still not doing well but was discharged. The Children's Hospital staff couldn't find a cause. Cultures for bacteria, viruses, and fungus were negative. His CRP was 20. He was discharged to go home. All medications, with the exception of Imuran, were discontinued. He seemed to stabilize but was still not doing great.
We increased his Fish oil from 300mg daily to 600mg per day after he was discharged.
In December 2007, his Hgb was still only 12.2. It had hovered around that level since he was 10, and since he'd begun taking Imuran medication nearly 4 years earlier.
In January 2008 we heard of a treatment called low dose naltrexone (LDN), and we consulted with Dr Grossman about the possibility of our son taking LDN.
In January 2008, our son started on 1.5mg naltrexone for 3 weeks, then 3.0mg for 3 weeks, then took 4.5mg every night thereafter.
Within 2 weeks of starting the 1.5mg and tapering down the Imuran, our son's color looked better, he became more active, and was off the Imuran completely by the time he was taking 4.5mg naltrexone.
In May 2008, he was active enough to return to BMX biking, but also due to that activity, ruptured his spleen.
The blood test taken for his Gastroenterologist follow-up was promising. His Hgb was up to 15.5, higher than it had ever been since he grew sick – and his CRP (inflammatory marker) was less than 0.5. When he'd been hospitalisation, his CRP had been 20.
His glutamine and magnesium were low on a spectra-cell blood test, and his B12 was slightly low also. We started him on 5 grams of Glutamine, 300mg of magnesium, and a multivitamin with Iron each day. We also started him on probiotics.
By June 2009 he hadn't had any flare ups since commencing LDN in January 2008, 17 months earlier. He was 15 years old, and had grown to 5'9'' and 142 pounds. He looked healthy and was continuing to have normal bowel movements.
He still gets cramps if he doesn't maintain his dietary restrictions.
He does not eat sugar or milk products, and his bread intake is limited.
In June 2009, his CRP was 1.1 (less than .8 is considered normal), so it is up a little. Hgb was 14.1 (normal range 13.4-18.0). His ferritin was 26 (normal range 20-380), and his Iron was 37 (normal range 40-225).
I had started but stopped giving him a daily multivitamin with 18mg Iron per day due to him experiencing nausea in 2008, so I am now going to start him on a multivitamin with a lower iron component at 9mg. I'm also putting him on B12, and a combined B6/ Folate supplement.
I also have him on Vit D3 50,000iu once every 2 weeks because his Vitamin D test result was 29. Our goal is to get it into the 60-70 range.
We are increasing his D3 to 50,000iu every 10 days, and his fish oil to 900mg per day.
The fish oil was originally started for a different reason back in 2004, because he had symptoms of ADD. A Purdue University study had shown kids with mental disorders often had low Omega 3 Fatty Acids (FA), so I started him on it for that reason.
We're continuing the probiotics, and have added Sacchromyces, which might help minimize yeast, and has reduced his flatus substantially. The probiotics are from Prothera/Klaire as suggested my Dr Jaquelyn McCandless who has treated many autistic children with LDN and probiotics.
The time he takes his naltrexone varies with his teenage lifestyle, but in general he takes it at about 10 pm each night. I asked Belmar pharmacy what filler they use in his capsules, but the pharmacy will not tell me. They said it is proprietary. I think I will have to challenge them on that.
I also have a friend with MS who started on LDN, and 4 months later had more energy than they'd had in the previous 5 years - and they were able to go off Rebif.