Parents Please Read for answers

[paccio6]

Hi parents. I've been reading so many sad stories about people suffering from Crohn's as well as us parents suffering from our children suffering. Please let me share my story to help inspire you and let you know there's hope out there.

My daughter was diagnosed with Crohn's disease at age 6 and we spent the first 6 months in and out of the hospital, she was on high doses of Predisone for almost 6 months and we were a couple of days away from Remicade before surgery as a last option before we found our answer. Now, over 2.5 years later, our daughter (now 9) misses no school, takes NO medication and lives a very healthy and happy life all because we took her to a Naturopathic Doctor (ND). Our doctors name is Dr. Jon Dunn here in California. His website is DrJonDunn.com His book is [The Family Guide to Naturopathic Medicine]

Dr. Dunn did allergy testing on our daughter and put her on a specific list of all-natural supplements and restricted her diet to a hypo-allergenic diet until we were able to identify all the possible allergins that were causing her immune system to attack her intestines. She now can eat close to anything within moderation, including some dairy but no gluten, absolutely NO gluten if we want to keep our daughter healthy and off medication.

My advice is to visit Dr Dunn's website, email him and/or find a Naturopathic Doctor in your area and try to identify what is causing your child's disease.

All these Auto-immune diseases did not exist 50 years ago, 100 years ago. They are from the crap in the food and drug supply. USA and UK have some of the least healthiest diets in the world and these auto-immune diseases are rampant in these 2 countries.

My daughter has a restricted diet, expensive diet and supplements and NO medication for 2.5 years after being told by numerous MDs that she needed Remicade and possibly part of her colon removed. Our ND said he'd have her off medication in 8-12 weeks, it took 9. Now, she's healthier than most kids. I hope you all find the kind of success we found for our baby. Good luck and I'm sending you all thoughts of light and healing. All my best.

Paccio6

 

[Keepingfaith]

I promise I am not knocking your way of thinking- in fact, when I get in remission & stay there for awhile, I am planning on keeping all my supplements and staying on a mild maintenance med & get off the biologic. But, I have heard of babies as young as 8 months being diagnosed with this terriable disease & I assume they could still be breastfeeding/drinking formula at that age. Diet can play a role, and usually does, but it is not the exact cause of Crohn's Disease. My triggger was genetics, I believe, because I have had bowel issues since I was a toddler & have been seeing a GI since I was 3. Crohn's disease was discovered in the early 1930's so that is well over 50 years ago.

I am very glad your daughter is feeling a lot better! Love reading stories like this. My GI said if I stick with the supplements & get into remission, we can start weaning off the medications. We can always go back to the hard core drugs when the flare comes again.

 

[Tesscorm]

Thanks, paccio6, for posting your daughter's story! We would all love to find a safe treatment for our children and stories like yours give so much hope! I hope your daughter's success and well-being continues for a long, long time!

Just out of curiosity, do you still see a GI for check-ups or follow-ups? Does she have tests that indicate all inflammation is gone, etc.?

Thanks again!! :ghug:

 

[jmckinley]

Paccio6,

Thanks for your post. I am glad that the naturopathic diet/supplements are working for your daughter. We also have been seeing a naturopathic Dr and eating gluten, sugar, corn, and dairy free. Unfortunately, our situation is not going as well and we ended up in the hospital. I don't know why it works for some and not for others. He is on EN now to get his flare under control but we plan to try diet control again. Maybe we can keep it in remission with diet and wean off of meds. Right now, even meds aren't working.



I hope you know how Blessed you are that it is working and I hope it continues to do so. Welcome to the forum!

 

[ohanaoehiku]

Thanks, paccio6, for posting your daughter's story! We would all love to find a safe treatment for our children and stories like yours give so much hope! I hope your daughter's success and well-being continues for a long, long time!

Just out of curiosity, do you still see a GI for check-ups or follow-ups? Does she have tests that indicate all inflammation is gone, etc.?

Thanks again!! :ghug:

Hello, thank you for your post! What kind of tests would we ask for to test for inflammation? My 10yr old was diagnosed with uc when he was two... on pentasa one year with no changes, we went naturopathic when he turned three and he remained symptomless until he turned ten, when he was diagnosed with cd.

I just joined the forum today and wish I could post more but we are at a library with limited time.

 

[Tesscorm]

Hi Ohana... (too long to remember :blush

How was your son diagnosed with CD? There are a number of tests that are routinely done but I'm certainly not an expert

However, some of the basic tests are CRP and Sed Rate (sometimes called ESR) - both can indicate inflammation but not necessarily intestinal inflammation (i.e. when my son separated his shoulder and injured his knee, these test results were elevated but may have been because of his injuries...). Also, some people may have inflammation but won't necessarily show on these tests.

Calprotectin and Lactoferrin are stool samples and are a better indicator of intestinal inflammation.

I'm not sure that ultrasounds and MREs specifically indicate inflammation, however, they do show thickening of intestinal walls which may indicate inflammation (these tests may also reveal other symptoms/signs...)

Endoscopies and colonoscopies will indicate inflammation as well as other signs of disease.

Iron tests may also indicate inflammation - I'm not 100% sure of the relationship but I believe normal iron levels (ferritin) combined with low RBC or hemoglobin indicates inflammation.

If you look on the Forum Wiki (http://www.crohnsforum.com/forumdisplay.php?f=56), you will find lots of info on Tests in general as well as info on specific tests. There is also a subforum for Tests for IBD (http://www.crohnsforum.com/forumdisplay.php?f=220).

Please also look up info on Enteral Nutrition EN - it is a treatment that is commonly offered as a first line treatment to children around the world, however, for some reason, is often not offered in the U.S. It has absolutely no side effects, provides all necessary nutrition, allows bowel rest to heal, has anti-inflammatory properties and has a comparable success rate at inducing remission as do steroids (however, it's success rate at maintaining remission is not as high as with medications and it's most often successful if the CD is in the small intestine).

You might also like to start your own thread in the Parents of kids w/IBD - there are some very knowledgeable and supportive parents on the site, I'm sure you'll receive lots of advice and support! :ghug:

Good luck!

 

[ohanaoehiku]

Thank you, Tesscorm. My son had both an endoscopy and colonoscopy, last November. He is on prednisone, lansoprazole, azathriprine, amd asacol... not sure of the spellings! Thank you for pointing me straight to the links, I'm heading there now.

 

[Tesscorm]

Feel free to ask lots of questions! There are so many members here with so much experience, their advice has been invaluable to me!

Good luck! :ghug:

 

[DustyKat]

Hi paccio6,

It truly is wonderful to hear that your daughter has responded so well to the diet and natural supplement route.

There are those that do indeed find their disease is responsive to this type of treatment but unfortunately there are many that don't and it is not through want of trying.

All these Auto-immune diseases did not exist 50 years ago, 100 years ago. They are from the crap in the food and drug supply. USA and UK have some of the least healthiest diets in the world and these auto-immune diseases are rampant in these 2 countries.

Crohn's disease was first recognised in 1932, who knows how long it existed before this??

Your daughter's story is inspiring Paccio but statements like those quoted above only serve to make parent's feel a failure when their own children don't respond to the more natural route and they find themselves in the unenviable position of having to make the heartbreaking decision of putting their children on medication.

I wish your daughter continued success with her diet! Long may it last!

Dusty. xxx