Hi Everybody, I want to start by thanking everyone on here. I know it's been said but I am truly so grateful to have such a wealth of information literally at my fingertips. I haven't posted our story yet partly because I've been so busy soaking up all the information and I didn't feel like I had anything to add. Now with all the interest in LDN being generated I feel like maybe it's time to say how we are doing.
My 15 year old daughter was diagnosed with moderate to severe Crohn's disease this past September. It was sudden and shocking to us as no one in our family has it and we knew nothing of it. She was admitted to the hospital with a terminal ileum that was nearly perforated, (they told us it was leaking). She was anemic (hemoglobin at 7.3), had an active infection (crp at 11) and a sed rate of 33. Her colonoscopy and IBD 7 serology all came back positive for crohns. They treated her with bowl rest, antibiotics and prednisone. I passed the 14 days beside her hospital bed reading your posts trying to decide what we would do.
I have always treated my kids with natural remedies. When they got sick I called the health food store instead of the doctor. We have always done very well with this approach. This time though we needed more help. I found posts on here from Samilou, Kev, Shannon and others that helped us decide that we would try LDN first along with natural supplements and remedies. We did do a full course of prednisone because the docs said it would really take down the inflammation and let Chloe eat again. After 13 days of ptn she was very anxious to do that!
On our follow up visit 3 weeks after being released from the hospital the GI was ready to talk about meds. He wanted Chloe to start 6mp right away. I brought him the reports on LDN and he said he would think about it. Very reluctantly and to my surprise he let us have it. He had never given it to anyone before and if they don't specifically beg like I did I doubt he will again. We began LDN once Chloe had taperd down to 10 mgs of pred. We are fortunate enough to have a reputable compounding pharmacy in our city that acutally has experience making LDN.
It's been almost 3 months. Chloe has gone from having several episodes of diahrrea a day to having 1-2 NORMAL bowel movements. She has gained 9 pounds and is back up to her pre-sick weight. She eats pretty much whatever she wants. Blood work from last visit showed a hemoglobin of 10.6 and a crp of 1.1. Things aren't perfect but they are improving.
We have paid close attention to other things on this forum as well. Chloe takes b vitamins and just to be sure gets b-12 shots. We got her levels tested and they were actually high (1743). We also began vitamin d3 and had the levels tested (33.4 This needs to improve a little, thank you David, I've been listening) She takes fish oil, Garden of Life soil organism probiotics, colostrum, digestive enzymes, curcumin, boswellia, aloe, 30 mgs of zinc picolinate and 1000 mgs of garlic. I know it sounds like a lot but we just divide it up with meals and she gulps it all right down.
The disease however does not allow her to forget she has it. She does have occassional pain especially around her period. Sometimes she loses her apetite so she will drink Ensure instead of eating. We've discovered that sleep is very important and if she gets to bed late we can almost be sure that her belly will hurt the next day. Her iron levels are still too low so we will be working on that soon as I figure out the very best supplement for it. The longer we are on LDN, or all the other things, the less these symptoms are though.
I know not everyone will have success with LDN. This disease seems nearly as individual as a finger print. Perhaps it has worked quickly for us because it's the first thing we did or because we got a quick diagnosis and didn't have to suffer wondering what we had while damage was being done. I'm sure the nutritional supplementation is helping also.
It's impossible to say what tomorro will bring but right now today we are doing well and I believe I have this forum to thank for that. Best wishes for health to all of you.
My 15 year old daughter was diagnosed with moderate to severe Crohn's disease this past September. It was sudden and shocking to us as no one in our family has it and we knew nothing of it. She was admitted to the hospital with a terminal ileum that was nearly perforated, (they told us it was leaking). She was anemic (hemoglobin at 7.3), had an active infection (crp at 11) and a sed rate of 33. Her colonoscopy and IBD 7 serology all came back positive for crohns. They treated her with bowl rest, antibiotics and prednisone. I passed the 14 days beside her hospital bed reading your posts trying to decide what we would do.
I have always treated my kids with natural remedies. When they got sick I called the health food store instead of the doctor. We have always done very well with this approach. This time though we needed more help. I found posts on here from Samilou, Kev, Shannon and others that helped us decide that we would try LDN first along with natural supplements and remedies. We did do a full course of prednisone because the docs said it would really take down the inflammation and let Chloe eat again. After 13 days of ptn she was very anxious to do that!
On our follow up visit 3 weeks after being released from the hospital the GI was ready to talk about meds. He wanted Chloe to start 6mp right away. I brought him the reports on LDN and he said he would think about it. Very reluctantly and to my surprise he let us have it. He had never given it to anyone before and if they don't specifically beg like I did I doubt he will again. We began LDN once Chloe had taperd down to 10 mgs of pred. We are fortunate enough to have a reputable compounding pharmacy in our city that acutally has experience making LDN.
It's been almost 3 months. Chloe has gone from having several episodes of diahrrea a day to having 1-2 NORMAL bowel movements. She has gained 9 pounds and is back up to her pre-sick weight. She eats pretty much whatever she wants. Blood work from last visit showed a hemoglobin of 10.6 and a crp of 1.1. Things aren't perfect but they are improving.
We have paid close attention to other things on this forum as well. Chloe takes b vitamins and just to be sure gets b-12 shots. We got her levels tested and they were actually high (1743). We also began vitamin d3 and had the levels tested (33.4 This needs to improve a little, thank you David, I've been listening) She takes fish oil, Garden of Life soil organism probiotics, colostrum, digestive enzymes, curcumin, boswellia, aloe, 30 mgs of zinc picolinate and 1000 mgs of garlic. I know it sounds like a lot but we just divide it up with meals and she gulps it all right down.
The disease however does not allow her to forget she has it. She does have occassional pain especially around her period. Sometimes she loses her apetite so she will drink Ensure instead of eating. We've discovered that sleep is very important and if she gets to bed late we can almost be sure that her belly will hurt the next day. Her iron levels are still too low so we will be working on that soon as I figure out the very best supplement for it. The longer we are on LDN, or all the other things, the less these symptoms are though.
I know not everyone will have success with LDN. This disease seems nearly as individual as a finger print. Perhaps it has worked quickly for us because it's the first thing we did or because we got a quick diagnosis and didn't have to suffer wondering what we had while damage was being done. I'm sure the nutritional supplementation is helping also.
It's impossible to say what tomorro will bring but right now today we are doing well and I believe I have this forum to thank for that. Best wishes for health to all of you.
