meds versus homeopathic? (for my child please help)

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anna paradise
New Member


Date Joined Sep 2007
Total Posts : 9
   Posted 9/21/2007 5:16 PM (GMT -7)   
I have a 10 year old recently diagnosed with crohn's colitis. His doc states that apart from keeping him on a low fiber diet, depriving him of other food groups would not make a difference and he will have to be on medication all his life. I have since spoken to a guy who swears that you can get by without meds if you have a diet that is free of dairy, wheat and complex carbs...have any of you tried to find alternatives to taking medication? does it work or is he stuck with meds getting stronger and stronger as he gets older? If you have any info please share. I am confused and scared for him. hugs, A

JudyK89
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Date Joined Dec 2006
Total Posts : 1986
   Posted 9/21/2007 5:35 PM (GMT -7)   
I think you need to listen to your doctor, if you think he's way off base, get a second opinion. You may try cutting things from his diet, but withholding meds could be pretty serious.

You are really going to need to educate yourself. You can start with the CCFA. Don't make any decisions that could affect your childs life on the say so of "a guy," do the research, make informed decisions.
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 9/21/2007 6:06 PM (GMT -7)   
Hi I agree with Judy about making decisions based on someone's opinion his GI knows his history and what is going on .Lo w roughage diet does help me but I take meds for my CD I have it in both large and small intestines. I will not eat seeds ,nuts, pickles or roughage foods but try to eat foods that are easy to digest.Low roughage is white bread some people cannot take wheat there are test for that ,some people cannot tolerte dairy so everyone is different. There are many complications of CD and that is why it is important to have a good GI that can help with controlling the inflamation .Nowadays there are more meds then years ago so hopefully that will continue and grow as your son ages.Hopefully you will get some help here talking and learning from those with expercience.The thing that helped me get past the fear was learning as much as I could so I could better cope.You are the one that has to make his decisions for him so it is a lot of responsibility for you but you also have his GI to help and that is one of the most important people you will have in his life. Some people go into remission with this disease for many years so don't give up hope. We learn to deal with things as they come about. lol gail

yogaprof
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Date Joined Apr 2006
Total Posts : 1665
   Posted 9/21/2007 6:37 PM (GMT -7)   
you will get advice from people all the time. If I hear "have you thought about..." one more time I will scream! of course I have thought about everything. I think about this DD all the time! ok, enough rant. I have chosen to believe in medical science, educate myself, and do things like yoga, accupuncture, massage that are proven to add to my life without ignoring my doc and meds.
I am so sorry your son has to go through this, you have my very best hope for his wellness. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and preparing to begin Humira.


Eryn
New Member


Date Joined Sep 2007
Total Posts : 16
   Posted 9/21/2007 8:21 PM (GMT -7)   
I have wondered the same things for a while now because the medicines can be so scary. Some people say that eating the right diet, supplements, etc. keeps them in remission, but what I wonder is whether they would be one of those people in remission without meds anyways... You never know... In my case, as much as I would LOVE to be off of meds, it's kind of an unknown territory and while the meds are scary, so is the disease and surgery.
20 yr old female, diagnosed with Crohn's May 2007, but by the looks of it, probably had it for many many years.  Surgery for bowel resection, fistula repair, and abscess removal in July 2007.  Currently on 150 mg. Imuran, probably starting Humira instead.  Have taken: Ciprofloxacin, Metronidazole, Prednisone, Zofran, Ambien, Imodium


CrazyHarry
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Date Joined Mar 2006
Total Posts : 1034
   Posted 9/21/2007 10:29 PM (GMT -7)   
i started the maker's diet a year ago when i was looking at ostomy surgery. saved my ass - literally! i totally believe in diet. the guy who did the maker's diet also has crohn's and he's got the disease in remission. i've met him - he's the pinnacle of good health. check it out. you may also want to look into the specific carbohydrate diet. there are others. research it and find out which one is right for you. it is hard at first though. you have to relearn how to eat and break old life long habits and build new ones. if do go the diet route with your son, i suggest having your whole family do it with him. it will help him not feel different and you'll have a better of idea of what he is going through and it will be easier for you to cook one meal for the whole family instead of becoming a short order chef (assuming you arent already). and besides, the diet could be good for your family too - you dont need to have crohn's or some other disease to eat this way. it is tough to do, especially at first cos you need to create the habit. education should help. that really opens your eyes to what you just didnt know. it truly is amazing. but it truly calls for determination and some will power at first cos probably all your comfort foods and stuff you like will become forbidden (it was for me). but that is good cos that means by now eating properly you are giving your body a chance to heal and get better. as your taste buds change you'll lose your cravings from sweets and the such and desire more nutritious foods like fresh fruit and yes, vegetables. i'd much rather eat a fresh organic salad than a bowl of ice cream or a piece of chocolate cake. sounds odd but it is the honest truth.

for starters i suggest going gluten free and omitting processed foods - that includes all refined sugars and processed grains (ie white bread). some people omit dairy, some dont. crohns makes us lactose intolerant so milk is most likely out, but he should be able to tolerate yogurt, kefir, and cheese since those are fermented. i have found i can tolerate those just fine. but then again, some people swear they cant and avoid diary altogether so your son will have to do some experimenting. to do so start off keeping a food journal so he can discover what his "danger" foods are. some we all seem to share to varying degrees but we are all different so it is an individual thing.

meds all have side effects and who knows if they are working or just masking symptoms. you have to eat anyway so why not try dietary changes, no matter how oddball they may sound. you may be pleasantly surprised....

bottom line it all depends on your pov and mindset. i know if i heard of this 10 years ago i dont know if i'd have done it or have wholly committed myself like i did to see the results i got. but where i was when i heard of it i embraced it all head first and went through the ringer and came through a new person.

best of luck!
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
been on basically every med available, currently on colozal & 6-mp
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 9/22/2007 3:50 AM (GMT -7)   
I agree with CrazyHarry, I was diagnosed in june this year, I use medication, but I also am trying to learn the SCD diet, the one Elaine Gottschall has made well known. But as CrazyHarry says, there is a diet called The Makers Diet. I am trying to find out more about this diet too, as I am researching these days. I also think yoghurt is a real benefit for my health, but I make it myself in a yoghurt maker and add good probiotics as well. This gives a really good result, the yoghurt is without almost all lactose, and it has been more powerful due to the added probiotics.

The resepies is on the scdiet.com and you can also buy a yoghurt maker and yoghurt starters there.

You could also follow the Elemental diet, this one your son will get while in hospital, I think. This diet is given through a tube, therefore it cannot be continued indefinitely, and also when stopping this diet, the disease is back. The nutriotion in the Elemental diet is synthethic, but has the same "structures" as the food diets.

It's wise to do a research now, try to find your way to help your son, in here there is a lot of helpful people with different experiences and different views, I always get help and good advice when needed. So don't stop any medication while starting a diet, but wait and see if your child gets better and if the diet brings him in remission he could reduce his medication if his doctor agrees.



With the best regards
from Ingrid :-)

Post Edited (Skjura) : 9/22/2007 4:54:47 AM (GMT-6)


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 9/22/2007 5:02 AM (GMT -7)   
I completely ditto what CrazyHarry says. Your son is soooo young. Why not make these dietary changes now while it's relatively easy? Will it negate the need for meds? Maybe yes (my sincere hope), maybe no. Only time will tell. I have a 15 yr old son (just diagnosed 3 mo. ago) and we've just started the Maker's Diet as a family. I thought we ate very healthfully before I read the book, but now realize we were barely scratching the surface of possibilities.

A little side note: my son went to a party last night where all the kids were outdoors with a campfire. I made sure he was well fed before he left because he'd told me ahead of time they were roasting hot dogs and making s'mores. Ouch! Those are both old favorites of his. Probably of every American kid. Anyway, he said he had no desire to eat them while he was there. I'm very proud of him!

Oh, and what you said about what his doc said... we ran into the same thing. Unfortunately too often allopathic physicians refuse to acknowledge there could be another way besides what they have to offer...

Skjura: One of these days I will have some yogurt maker questions for you! I don't have one yet, but buying the really good (organic, from grass fed cows, no sugar, etc.), expensive stuff at the store is about to break me at the rate we're going through it!!! (My son drinks a really large smoothie drink w/yogurt each day from the Maker's Diet book.)

Anna, welcome to the board and good luck to you!!

EMom
EMom

Grateful for everyone's help here!

Mother to 15 year old boy just diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, and a good multivitamin.
Just starting the Maker's Diet.


Stef17
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Date Joined Feb 2003
Total Posts : 1811
   Posted 9/22/2007 7:14 AM (GMT -7)   
I would be EXTREMELY cautious about what someone offers up as a "cure" or something to do "instead of" medication. I am totally supportive of alternative things like a change in diet or taking probiotics if they are helpful, but I also recognize the power of modern science. Get as informed as you can, Mom, so you can help your son make the best decisions for his health. If you are not sure about what your GI has said, ask him to explain in detail. If you still don't like what he says, get a 2nd and 3rd opinion. This disease affects us all so individually that what works for one might or might not work for another. I was diagnosed when I was 16 years old and managed my flare ups solely on meds for years. Only in my adult life did I discover natural helps like the SCD diet and probiotics. I have found that my best success has been a healthy combination of medication AND natural stuff. Your son will have to find what works best for him. I know this must all feel scary to you, but knowledge is power. Arm yourself with as much information as you can and you won't be as fearful. God bless.

awatt
Regular Member


Date Joined Mar 2006
Total Posts : 34
   Posted 9/22/2007 12:28 PM (GMT -7)   

I agree with Stef 17.  Listen to your son's doctor, and start the meds to get teh inflammation under control. If you let the inflammation go on the complications can be very serious.

Trying a specific diet at the  same time as the meds  should not hurt, and may help.

Once things are under control, you can evaluate if the diet is helping enough to try to ease off on some or all of the meds.


killerzoey
Regular Member


Date Joined Jul 2007
Total Posts : 161
   Posted 9/22/2007 3:06 PM (GMT -7)   
I agree that medications are there to help us and especially to get us out of bad flares. For sustained health, however, I saw right away that there are many people who have had good luck with dietary changes and supplements of their own choice. Look into the Specific Carbohydrate Diet www.breakingtheviciouscycle.info and also into Low Dose Naltrexone (LDN) www.lowdosenaltrexone.org. This is a safe, cheap drug that your GI will not tell you about as it has not undergone specific FDA approval for all of the illnesses it can be used to treat. But it is FDA approved and is used at a much lesser dose (about 1/10th) for autoimmune diseases than the dose for which it was approved. Those are both things that are, in my humble opinion, worth a try as they cannot hurt and may help quite a bit. Good luck on your research, and I hope that your hard work will result in a much better path for your child. For what it's worth, I will probably continue to take at least Asacol as a maintenance drug.
36 year old mother of a fabulous toddler.

STARTING LOW DOSE NALTREXONE SEPT. 26TH www.lowdosenaltrexone.org. Also see: http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&list_uids=17222320

Diagnosed with Crohn's July 2007. I believe it's in the right side of my colon.
Tapered down off Entocort mid August. Now on Asacol 2400, Protonix 40mg/day.

On Specific Carbohydrate Diet (SCD) since late July and seeing improvement in "output" quality and hopefully therefore absorption. Taking SCD legal supplements: B vitamins, Folonic Acid 800mg, EnZym Complete DPP IV Aid by Kirkman, and Saccaromyces Boulardii (a probiotic yeast).

Current biggest complaints: LRQ fullness and slight burning. Gastritis symptoms are quiet now. What was horrible right hip and low back pain has subsided about 60%.


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 9/22/2007 8:50 PM (GMT -7)   
I agree with the others about trying the Maker's Diet. It is extremely worthwhile. If you can avoid putting your child on heavy meds, or even keeping them at a minimum by modifying his diet, then please look into this diet.

I have been on meds for 10 yrs and have even had surgery for crohn's. I have never acheived remission, not even after a 1 ft resection. I started the maker's diet a few months ago and I have had way less obstruction, and even less diarrhea. This diet is hard to follow for the first 2 phases, the first 30 days. Some people start on phase 3.

It is mainly about eating lots of fruits, veggies, fermented dairy (cheese, yogurt, etc.), meats (no pork), fish with scales only, whole grain breads made with sourdough, or sprouted breads. These breads are often available at your grocery store. Having unpasteurized honey, instead of sugar and taking probiotics are also important.

Processed foods, preservatives, sugar, and fast foods are to be avoided.


Best wishes.

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 9/23/2007 8:19 AM (GMT -7)   
The difference here is that we're talking about a parent making the decision for a child. Adults may experiment all they want with different alternative therapies, and if the child is on traditional meds you can also alter his diet, but you cannot withhold meds from a child.

If you read the above posts carefully, you'll see the Makers Diet may lessen some of the symptoms, but it does not put you in remission. LDN is not approved for CD. And anyone who feeds a CD patient fresh fruits and veggies without the approval of a doctor may be seen as criminal.

A parent doesn't have much choice accept to go the traditional methods of treatment for their child. If the adult doesn't agree with the doctor, they may get a second opinion, but I don't see any doctor withholding meds to try the above listed alternative treatments.


Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


Mormor Vicky
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Date Joined Mar 2007
Total Posts : 684
   Posted 9/23/2007 10:30 AM (GMT -7)   
Just remember that Crohn's can effect children differently then in adults. My daughter had growth failure. If you don't get the inflammation under control quickly it can effect a 10 year old terribly. Nutritional aspects are different in children. My daughter had to do nightly ng feedings to get the necessary nutrients. Since everyone is giving their opinions I will give mine. By all means try different diets but do not ignore the protential benefits of meds. Asacol, pentesa and other 5ASA are relatively benign meds and can help keep a remission in place. I'm only on pentasa.

Start with a low fiber diet and then slowly add foods to see if he can tolerate him. It would be a shame that his childhood would be unbearable. Kids with chronic illnesses already feel different. It would be awful for them to be set apart because of dietary restrictions. There are options out there. Do your best for what is best for your child.
Vicky / 47 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (26) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/24/2007 5:14 AM (GMT -7)   
Hi Your GI is smart to put him on low fiber. If you need help with that please let us know I find it helps alot .How is he doing on it and does he mind it? I find I like corn twist for a snack they are tasty and melt in the mouth. How is his weight wise? Hope he is feeling better. At this point I would trust in his GI it helps to have faith that someone who knows alot about the insides is helping, someone who specializes in this .I hope all the above post have not confused you I would find it all a bit mind boggling. if it were me.lol gail

JaSanne
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Date Joined Oct 2006
Total Posts : 2041
   Posted 9/24/2007 7:02 AM (GMT -7)   
First of all, let me say that your child may not have to go to stronger and stronger medications as he gets older. Some patients have their symptoms lesson as they grow older. Some gain a long remission; of course, many of us struggle. Mostly the ones here at this forum are the latter, but we aren't necessarily the majority, so don't let that scare you.

There are many opinions, as you can see. Crohn's is quite different for each patient because the intestinal tract is so vast, and the disease varies widely in severity. The person you spoke to may have quite different involvement of the disease in comparison to your child. And one opinion and outcome isn't worth much anyway.

I agree that an adult can make decisions for himself in a different manner than for a child. We have a responsibility that weighs heavily on our shoulders when it comes to our children. My child has asthma and it was always a struggle to know what to do with her disease, so I know what that's like. I never let someone else's opinion of the disease based on their experience weigh in on our decisions concerning treatment for her.

You will find that people will call you up and tell you all manner of "cures", so be prepared and don't fall for any of it. You have to do your research, but be aware that the internet is full of pure junk. Use your logic when seeking information.

I've had many well-meaning people try to give me advice, and I do tire of it. I think one of the most defining moments concerning diet was from a newly diagnosed woman that called me up one day and told me about the most wonderful diet that had turned her life around. It was the SCD diet, which I was already familiar with since I'd had the disease many years. When I told her that I was glad it helped her and was aware of the diet, but I wasn't interested, she became angry at me because I didn't agree that CD could be cured with any diet. I knew this woman's mother pretty well, and would ask her occasionally how her daughter was fairing. From her mother's reports, I knew this diet wasn't helping much, if at all, but she really thought it was. It probably does help some patients, but it's no cure, as she thought.

I'm currently not on any Crohn's meds due to problems with what I was taking and the harsh reality that I can't afford what I need to take at the moment. But I would never recommend this route for you. Your doctor's advice is sound. If you feel you need a second opinion, see another GI, but don't listen to one anecdote and base your child's treatment on that. It could be a life-threatening mistake.
48 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 9/24/2007 8:02 PM (GMT -7)   
i have to argue with you judyk89. the guy who developed the maker's diet did so cos he had CD. he did it like 10 years ago. he seems to be cured. i know from having done the diet i cannot remember ever feeling this well and i've been living with CD since 1993.

the diet does have you eat a lot of "danger" foods. it scared me at first cos of that. but i did it anyway and i now find i can eat virtually all those foods, the ones i avoided for years, except brocolli. my new danger foods are processed foods and fast foods and sugary foods. but the trade off is i have never felt better.

yes, it is easier for an adult to make dietary changes, but as a parent you can make your kid eat a certain way and it helps them if you do it too.

the maker's diet may not be a cure, but heck, i'll take what ever it is it is doing to me cos it is doing what over a decade of medicine could never do. i feel totally symptom free of CD. no D. no abdominal pain. all that stuff is gone. if you dont believe me, try it. do the 40 day experiment and then let me know how you feel freaking fantastic!
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
been on basically every med available, currently on colozal & 6-mp
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 9/25/2007 8:00 AM (GMT -7)   
Crazy Harry,

You had your surgery before you even started the diet. How do you know that the diet is what put you in remission and not the surgery? I can see from your bio that it may be helping your colon inertia, but you have no way of knowing if it's helping your crohns. I'm glad that you are feeling better, but really, you have no proof that the diet is what is making you feel better. By the way, when's the last time you had a colonoscopy to see if the disease is lurking?

I'm sorry, but I need more studies than you and one man who stands to gain a lot by selling his book. Peer reviewed studies would be nice, and so far no studies on any diet has supported the theory that diet can help control CD.

You can try any treatment you like, that's your right, you may even believe anything you wish, that's your right, but I'm sorry, you shouldn't suggest to someone that they should disregard doctors orders for a CHILD, because you believe something with no science to back it up.

I hope this doesn't sound too harsh, sometimes I come across that way especially on paper. I just feel very strongly that anyone, especially a child, should continue treatment with a specialist GI doctor for this disease. I've seen many changes in treatment over the years, I've seen the life expectancy and the quality of life improve more than you can imagine with the new medications, and if my doctors and the science stand behind it, I will try it.

This is not personal, I don't mean to attack you. I'm just against any "cure" without the science to back it up, I don't even want to hear it. I've been battling this disease for more years than you've been alive, and been told by way too many people that they can "cure" me at great expense to me physically and monetarily.

But especially for a child, treatment first, including dietary considerations for health. But to push a diet, especially one with fresh fruits and veggies on a newly diagnosed child, it could really hurt someone. How would the mother feel if her child ends up in the hospital with a blockage? And legally? She doesn't want to go there, against doctors orders and then have her child become more ill, she would become legally responsible for that.


Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 

Post Edited (JudyK89) : 9/25/2007 10:33:49 AM (GMT-6)


RedAdmin
Veteran Member


Date Joined Aug 2003
Total Posts : 1017
   Posted 9/25/2007 10:20 AM (GMT -7)   
Judy - I think you spoke well. Just so you know someone did not take what you said wrong. I agree completely with you. I know there are many out there that the diets work for. I agree there needs to be more science. I have the book and it is interesting to read, and there are a couple of good techinical things I learned, like why everyone gets a belly ache when they are upset.

I think there is still a lot of study to do as you said it is very personal.
Red (Lee Ann)
 Happy Bunny 
      When life gives you lemons, squirt juice in your enemy's eyes.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 9/25/2007 10:34 AM (GMT -7)   
I don't think ANYONE here ever suggested withholding meds from a child. I hope I didn't give that impression. I would simply do both the diet and the meds for now. I firmly believe it is within the realm of possibility that in the future, thanks to an excellent diet, meds may not be necessary. That is our hope. My son is currently eating tons of fruits and veggies. I didn't call his Crohn's specialist for permission, but I'm certain he has no problem with this because he told us "no dietary restrictions or recommendations."

Judy89, you wrote, "If you read the above posts carefully, you'll see the Makers Diet may lessen some of the symptoms, but it does not put you in remission. LDN is not approved for CD. And anyone who feeds a CD patient fresh fruits and veggies without the approval of a doctor may be seen as criminal." I'm curious, Judy89, have you ever tried the diet? And how do you know it won't put you in remission? (I, like you, am not trying to be harsh. You're right, it is easy to come off that way when you're not speaking in person. I'm just wondering.) And "criminal" for feeding fruits and veggies?

We have not been on the Maker's Diet long enough to know if it will put my son in remission, but something is really working right now. I think there's a chance there is something to this diet and I'm not waiting on peer reviewed studies. If I thought our case warranted trying LDN, again I will not wait for approval. As a parent I want to make the best possible informed choices for my child and that means I might not always agree with allopathic physicians or the FDA or the CCFA. I have to trust my gut.

And what about this possible scenario: Maybe my son will never get off medication, but because he follows the diet, his condition progresses far more slowly and he never has to have surgery. Wouldn't that be more than worth it? Granted, there will probably be no concrete proof, no irrefutable evidence that the diet is responsible for this. I guess I just firmly believe in "we are what we eat", though.

Also, "against doctor's orders" is a powerful phrase. I guess I've disregarded doctor's orders before when I've opted not to give an antibiotic to my child when symptoms magically improve after I've purchased it. I have also violated it with regard to picking and choosing what vaccines my kids are subjected to. Believe me, I'm not a legal expert and I'm also not trying to be obstinate here, but isn't this my right as a parent? Are we not in a free country? Maybe there is a line somewhere, but I know certain religious groups here in the US choose not to use allopathic medicine for themselves or their children. Are they prosecuted for this? I truly don't know, but I don't think so.

Just my thoughts!
EMom

Grateful for everyone's help here!

Mother to 15 year old boy just diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, and a good multivitamin.
Just starting the Maker's Diet.


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 9/25/2007 11:44 AM (GMT -7)   
E Mom,

When this is the question from the origianl poster:

<<I have since spoken to a guy who swears that you can get by without meds if you have a diet that is free of dairy, wheat and complex carbs...have any of you tried to find alternatives to taking medication?>>

And then other posters start talking about specific diets which some claim to "cure" CD, it suggests trying the diet instead of the medications. I was just trying to clarify that point, as that was the original question.

And no, I have never tried the Makers Diet, but have tried other diets (he's not the first person to come up with this type of diet, though he may be the first to put it in a book) at the suggestion of Naturopathics which consisted of adding more wholesome foods (fresh fruits and veggies, no processed foods) and ended up putting me in the hospital with an obstruction. I have also done extensive research on studies for many different kinds of diets, and not one shows that diet can or will help in the treatment of CD except that a low fiber diet may help reduce symptoms/obstructions during acute inflammation/narrowing.

This childs doctor instructed the parent to put the child on a low fiber diet. That is a "proven" treatment for this disease, and for anyone to suggest that the parent disregard that advice and start a diet that pushes fiber, a diet made up by a man with no real credentials, yes, I personally believe that is criminal and so may the doctor.

And as far as the Makers Diet, I have not seen any proof that this diet put anyone in remission. I'm talking proof here. The author makes many claims, but none are substantiated. I'm not saying his book is all wrong, I'm saying he's making claims he shouldn't and his products make claims they shouldn't and there have been legal actions against him regarding this. I agree with the basic premise that a more wholesome diet is probably better for us all, but I don't believe that this diet has or will "cure" anyone, and definitely should not be used instead of medications.

And as far as the legal aspect of an adult not taking medical advice from the doctor for their child, it all depends on how detrimental not following that advice will be to the child. I personally know of parents who were forced to follow doctors orders (not for CD, but for specific baby formula) after the doctor called CPS, they were investigated and then monitored for the treatment period. The only defense against this (and it's questionable) is religious belief.

And there is a big difference between a doctor suggesting certain treatments and letting you pick one that seems to fit, and directly doing the opposite of what a doctor prescribes.

And please, I'm really not attacking your choices for your son. I personally can't even imagine how hard it must be to make decisions like this for a child that is ill. It's hard enough for myself. I admire the parents who do, and hope that you're guided in the right direction for your child. I hope this diet works well for your son, and that whatever treatments you choose, he has a long remission and grows up healthy. There is no one size fits all treatment for this disease, and I hope you find the one right for your son.

I just have learned through the years and many trials and mistakes that I won't experiment anymore, that I'll let the people who know how, do the testing. Believe me, I don't believe drugs are the only answer, and I know first hand how horrible some of these drugs are. But I've seen the changes over the years and I've seen the difference these new drugs have made in the lives of people with CD, I see that we now have a future. I do believe that at this point, drugs (and sometimes surgery) are really the only treatments that can put you in true remission.


Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 

Post Edited (JudyK89) : 9/25/2007 12:43:41 PM (GMT-6)


ana_e
Regular Member


Date Joined Feb 2007
Total Posts : 67
   Posted 9/25/2007 12:09 PM (GMT -7)   
My 2 cents..

Our daughter was diagnosed with CD when she was only 2. After failing regular
CD medications( only Remicade/Humira left to be tried ), we decided to take her completely
off these and try alternate. She is currently on Homeopathic medications and
LDN. After about 2 months of tapering off from steroids, she responded to
these 2 and is currently in remission( touch wood ).

I do not intend to advise you on which path to take but for us, it was crystal
clear that the traditional CD medications were not working, they had all sorts
of side effects and we took a high risk going alternate path instead of Remicade
Humira which her GI had recommended. Usage and benefits of homeopathic
medications for most chronic diseases are well known and documented.

Diet wise: we are vegetarians and our daughter eats almost everything except
dairy and wheat(LDN usage prohibits this).
====================================================

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 9/25/2007 12:36 PM (GMT -7)   
about the maker's diet. It doesn't cure our defective genes, but it helps our symptoms, immune system, inflammation.

I had a one ft resection, 6 weeks later, the crohn's was back. I had obstructions almost daily for a year. I was still on years of prednisone and imuran treatment which never put me even to close to remission, and my doc and I considered a second surgery.

Then I started the maker's diet. I weened from the prednisone immediately, I'm still on imuran. I don't even do the diet 100%, and I have way less obstructions and I'm not on the toilet 30 times every single day. That's a first for me.
 
Oh, at the beginning, I cooked and pureed all my veggies because I knew if I didn't, I'd get obstructed. So if you have obstructions and you want to try the maker's diet, i suggest you cook and puree the veggies until the inflammation goes away. the other thing to consider is if you have alot of scar tissue obstructions, then you'll still want to eat pureed veggies and fruits, or you'll get obstructions.

The diet has definitely helped my crohn's symptoms.

Post Edited (Roni) : 9/25/2007 1:40:02 PM (GMT-6)


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 9/25/2007 2:22 PM (GMT -7)   
I hope noone will withhold meds from a child. If this was my child I would listen to the GI, I would educate myself and do a lot of research and I would ask the veterans in here if the medication the doctor decides is the most "normal" due to the symptoms. And I would combine the meds with a diet.

But I would keep a close watch with my child and try to find out if there is anything else I could do to easen my childs pain and learn about what foods he should avoid and what food he could easily digest. I would ask you in here. This is exact what I did when I first understood that I had Crohns. Some months before my diagnose in june this year. Meanwhile I found out that there is a lot of ppl. that is not using this forum or other like this. They are using diets, and they are talking in other forums. Some of them are old members from here and from other eqvivalents. Many of them uses the SCD diet or the Makers diet and have been in remission for years. Some of them also use medications prescribed by their GI's.

One of the forums that I have visited a lot lately is lowdosenaltrexone (a LDN forum) in yahoo.com. I have started up with LDN after tapering my prednisone. In this forum there are also a lot of parents with quite young kids having Crohns. They have decided to use LDN for the kids, they still continue with a maintenance drug prescribed by the kids GI.

Just to mention it; Low dose naltrexone is a medication taken once a day, only 4.5 mg. There is no known sideeffects and the dose is so low it's close to a homeopathic level. The medication is from naltrexone, given to drug users trying to withdraw from heavy drugs. They use app. 50 - 60 mg per day. On levels around 300 mg pr day they find that the liver gets problems. This drug is said holding the inflamed intestines calm, reduces the D, the bloating, the opstipation, the nausea and makes us feel fine. Just like prednisone does.
But without a lot of dangerous sideeffects.

I am not allowed to have any other medication than prednisone. And my GI will not give me more pred. Not now, I have to wait. I am so old that my bones will suffer. So for me personally the desition is easy. I have no other choice. My doctor tells me that I need a surgery. Have a narrowed intestine. I want to wait and see and try LDN and a diet. He agrees. But I would use LDN even if I could choose remicade or humira or pred. But I would find out if I could stay on a maintenance drug prescribed from my GI and at LDN at the same time. There are some combos that are ok.

And so, yes eMom, I would use the delicious SCD yoghurts ;-) with a lot of good probiotics.

By the way, I have some documents on LDN and Children. Interesting to read.

With all the best from
Ingrid's ...(waving from Scandinavia) :-)
 
Diagnosed CD June 2007. Have been on a minor prednisone medication. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. See yahoo.com. A member in the group "lowdosenaltrexone" at yahoo.
 
Use home made scd yoghurt containing a lot of probiotics - a benefit for the intestines. Don't use white sugar. No yeast in homemade breads.

Post Edited (Skjura) : 9/26/2007 6:13:14 AM (GMT-6)


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 9/25/2007 9:04 PM (GMT -7)   
hi judyk89. no offense taken. we are all entitled to our opinions. discussions can be eye opening to both sides if done with an open mind to the other side. you dont need to do the maker's diet or any other diet for that matter. follow the treatment option you feel is best for you. but before you discard this or other diets out of hand, yes, do your research (you'll see there is plenty of science to back this up throughout history, just not perhaps what you are looking for like a double blind study with a placebo). shoot, give it a try. i think you'll become a believer. i know that if i heard of dietary changes improving my health like it has at any other time in my life i'd be highly skeptical just like you. it is only after having done it have i changed my views on this and many other things. but there is a lot of empty promises and snake oil out there which turned me off to alternative ways for a long, long time.

i still had symptoms after my surgery, granted they were more mild. i know the diet is doing something for me. it got the peristaltic action of the colon to work again when meds could not. i no longer have abdominal pain. i have more energy. i can now eat foods i havent eaten since i was diagnosed. am i cured? am i in remission? i dont know. i dont care. i gauge my health on how i feel at any particular day. right now i feel the best ever. i know surgery did help - it removed most of the diseased portions of my bowel. it would be stupid of me not to credit that to my well being. but i do believe in the power of healthy eating and the positive effects it has on the body.

the last time i had a colonoscopy was in january 2006. the doc said my colon looked great. unfortunately the biopsy he took at the asmosis (sp?) point perforated the lining and i ended up back in the hospital for 13 days needed emergency exploratory surgery. ugh!

if i came across advising some one to do this diet in lieu of their doctors orders, be it a child or adult, well then we have a big misunderstanding. now words are being misconstrued and things are being read into them that just arent there. in no way would i ever say to disregard the advice of a medical professional. i am not a doctor nor do i call myself one or pretend to be one. i am not knowledgeable to doll out that kind of advice. my intention is only to let people know that there are other options besides taking handful of medications. the decision of treatment is a personal one. but there are other things one can be doing besides just taking meds. and for kids, meds will cause problems since they are still developing. that has been documented. it is a slippery slope. we are so conditioned to take meds and dont question. i know i was. in hindsight i wish i wasnt. i saw the pain my mom went through. she cried herself to sleep a lot. i saw the hopelessness i her face. i would lie to my parents about how i was feeling to spare them the pain and the guilt. i understand it very well from a "child's" perspective and was old enough to understand the parent perspective.

anyhoo, different experiences, different thoughts on the subject. no problem.

i hope i did not come across as patronizing or condescending. email has a problem with emotions where everything comes across flat making it easy for us to insert our own interpretations of the words being said by the lack of emotion and body language.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
been on basically every med available, currently on colozal & 6-mp
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon

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