Natural Treatments for Crohn's in 12yr old.

[danneka]

Hi. I'm the mother of a 12yr old daughter who has Crohn's. She was diagnosed in March and was immediately started on a three month course of exclusive enteral feeding with Modulen formula. We chose this therapy as we were extremely reluctant to go with any of the meds suggested after we researched them and read blogs which detailed the many terrible side effects.
The ng-tube feeding has worked like a charm in achieving remission for our daughter. In three months she has gained 14lbs, grown almost 3cm, and the inflammatory marker CRP in her bloodwork went from 19 to 0.6!!! She looks healthy and has more energy than she has had in a long time. In addition to the Modulen formula, she also consumed 1 cup of homemade bone broth every day along with a Vitamin D and Multivitamin as well as an iron pill supplement, (Proferrin 11mg).
Now that we are coming to the end of her ng-tube feeds (3months), her team at the hospital is still wanting us to put her Remicade, Humira, or Azathioprine.
We are planning instead...to transition to solid foods very carefully with the help of Crohn's diet/cookbooks, as well as use natural anti-inflammatory supplements along with lifestyle changes (she's starting yoga for teens today).
Based on her recovery using the ng-tube diet therapy, I am hopeful that we can maintain her remission without drugs. Is there ANYONE out there using diet, lifestyle wellness tools and natural supplements to manage their disease successfully??? I want to hear from you!! Please advise and comment with any helpful hints...they would be much appreciated.

 

[Mr chicken]

EEN is proven to work to induce remission but once food is introduced the inflammation will come back period ( you can exercise/supplement to your hearts content ) not going to fix crohns .
It's important you understand that .
Crohn's disease in kids has a very high morbidity and severe disease course .
What works on blogs for mild adult cases is not the same as growing children. .
That said there is SCD diet which has shown some promise but is very strict most kids lose weight or it isn't enough .

You can add diet to meds and that is a tremendous help.
We have all been in your shoes hoping there was a more natural way
It doesn't exist .

There is PEN with a restrictive food diet of 15 foods
But again it is not meant to be long term
DS is currently on it plus humira /Mtx

You talk about risks
Does your child ride in a car or go swimming
Ever take tylneol ?

Let's look at the numbers
Risk of death for kids under 14
1 in 250 by car
1 in 1000 by drowning

Any person on the street without taking any meds or not having Ibd
Of T cell lymphoma 2 in 10000

If you take both humira/Mtx together 6 in 10000

Tylenol which is given to infants causes liver damage or death by SJS ( steven Johnson syndrome ) same risk for antibiotics -amoxicillin any one


My point you are willingly taking these risks everyday with your kid
Why because the risk is low and benefit is high
And you don't have docs telling you these risks everyday

Untreated or under treated crohns can be deadly quickly.
You can get structures/abscesses/fistulas to name a few
And you might end up in the icu without much warning
Crohns is evil and sneaky since it can cause severe damage inside without many symptoms outside .
You can live without a colon but not a small intestine .
So once it's damaged removal gets riskier.

In the old days there was only pred and pred and pred to treat crohns in kids
That left many kids weak /sick/dying /short or without much of a gut by time they got to adulthood

Tagging crohnsinct clash Tesscom jmrogers

 

[Mr chicken]

↓ Full text
Partial enteral nutrition with a Crohn's disease exclusion diet is effective for induction of remission in children and young adults with Crohn's disease.
Sigall-Boneh R, et al. Inflamm Bowel Dis. 2014.
Show full citation
Abstract
BACKGROUND: Exclusive enteral nutrition is effective for inducing remission in active pediatric Crohn's disease. Partial enteral nutrition (PEN) with free diet is ineffective for inducing remission, suggesting that the mechanism depends on exclusion of free diet. We developed an alternative diet based on PEN with exclusion of dietary components hypothesized to affect the microbiome or intestinal permeability.

METHODS: Children and young adults with active disease defined as a pediatric Crohn's disease activity index >7.5 or Harvey-Bradshaw index ≥4 received a 6-week structured Crohn's disease exclusion diet that allowed access to specific foods and restricted exposure to all other foods, and up to 50% of dietary calories from a polymeric formula. remission, C-reactive protien, and erythrocyte sedimentation rate were reevaluated at 6 weeks. The primary endpoint was remission at 6 weeks defined as Harvey-Bradshaw index ≤3 for all patients and pediatric Crohn's disease activity index <7.5 in children.

RESULTS: We treated 47 patients (mean age, 16.1 ± 5.6 yr; 34 children). Response and remission were obtained in 37 (78.7%) and 33 (70.2%) patients, respectively. Mean pediatric Crohn's disease activity index decreased from 27.7 ± 9.4 to 5.4 ± 8 (P < 0.001), Harvey-Bradshaw index from 6.4 ± 2.7 to 1.8 ± 2.9 (P < 0.001). remission was obtained in 70% of children and 69% of adults. Normalization of previously elevated CRP occurred in 21 of 30 (70%) patients in remission. Seven patients used the diet without PEN; 6 of 7 obtained remission

From

http://www.ncbi.nlm.nih.gov/m/pubmed/24983973/


My kiddo was dx at 7 btw and is now 11
He has been on biologics for 3 years plus with no issues and tried all of the less risky meds first as well as every diet out there

 

[SupportiveMom]

So wonderful to hear the EEN worked! Did you get the Hilary Steinhart book? It has great recipes. The issue with EEN for most is when you go back to regular food, remission doesn't stay. SickKids had a few papers written on it. Symptoms & blood work aren't the only markers to see if the disease is active, and that is probably why the doctor is pushing for meds. My daughter's CRP levels only rise with active inflammation when she is in a flare. Otherwise you don't even know that she has active disease unless she has am MRI or a scope. Medications can be a big decision & I totally appreciate wanting to avoid them but it can be highly risky to do so.

I would take a look at the Diet, Fitness, and Supplements section of the forum for suggestions and asking some adults there. You might get a better diversity of suggestions. Good luck!

 

[kikig]

I really have to agree with Mr chicken on this one - Crohn's is not going away due to 3 months of NG feeding. What you have achieved is remission, not cure.

Crohn's is for life, and it will be much easier to deal with if you can accept that drugs will be a constant feature.

None of us with an IBD want to rely on drugs, but the fact is that it is not a short term inflammation or infection - the digestive system does not work.

Managing Crohn's is not all about drugs, it is about diet and lifestyle absolutely. And when all three are working together, it can be managed.

 

[crohnsinct]

I have been in your shoes and am known around these parts as the diet freak. But given our experience and much, much research that my daughter's doc, her registered dietician and I have done, diet and supplements alone are not enough to control pediatric Crohn's. It can help make the kids feel better, mitigate bad side effects of drugs and may even help keep then on a lower level drug but diet alone does not bring them to full mucosal healing.

I researched the SCD diet and asked and asked about it and neither our GI or our functional medicine doc said they could find any endoscopic evidence that it works. Plenty of clinical evidence but not backed up with clear biopsies.

My older daughter is one of those who had silent disease. Very little evidence that anything was wrong until her first big flare. Two weeks from the start of her flare (which we thought was a bad bug) she was admitted into ICU and was fighting for her life. The docs figured she had some low level inflammation happily doing its damage for about two years until her body finally gave out. We used EEN with her to induce remission but with a maintenance drug to take over when it was done. After we finished EEN we introduced a non inflammatory diet with only whole foods and plant forward. Our doc credits the use of diet along with the drugs to her three years of remission as her disease presented very severely and he was sure she would have flared by now.

My second daughter also has rather silent disease but we caught it much earlier. Our doc was willing to entertain the use of EEN to induce remission and then partial EN and partial food to maintain remission (50/50 ratio). She was also put on Methotrexate at dx and our thought was to get her to remission and then pull mtx. As soon as we got to 50/50 EN/Food, her inflammation markers started increasing. This was even with the use of mtx. So it doesn't look like maintaining with diet and food is in our future.

There are plenty of studies using EN and food combos but they are just studies right now. Some centers in the US, Japan and Israel are using this method pretty routinely but you have to make sure you monitor and image closely to make sure inflammation does not go undetected. This is a risk that not a lot of doctors are willing to take with the pediatric population because of the affect of inflammation on growth and brain development. The window of opportunity is not wide and they don't want to miss it.

If this is your wish, I would encourage you to discuss it with your GI as many factors go into the decision ie: disease severity, age, duration of disease, disease location etc. and they will probably be able to advice you better.

We will be coming to a decision on my younger daughter late June with regard to how we will be proceeding but given our experience thus far I think we will be sticking with Methotrexate and maybe even changing drug therapy.

I am glad you had such success with EEN! It is not easy for the kids to do and your daughter should be commended.

Good luck with your decision.

 

[Mehita]

I know you probably wanted more info and encouragement on diets, but there have been so few kids who've been successful with diet and alternate lifestyles alone. It's so tricky because like others have said, pediatric Crohn's is usually more severe and doesn't always follow the rules like in the adult world. For many of us our goal is just to get our kids healthy enough to make it through puberty.

I fought the meds initially. My son was dx with Celiac also and went gluten free right away. Within days we had a brand new kid so Crohn's fell off the table for a good two years... until it came back with a vengence. I still fought the meds. Because of my fear, my son paid the price and had to have ten inches of his small intestine removed. I live with the guilt and regret every day.

It took a long time to find the right combo of meds that worked for him, meds that gave him his life back, but we finally did. In retrospect, I wish we would have started him on Remicade on day one. Could we have avoid surgery? Probably. Could he have skipped three hospital stays? Most likely.

Unfortunately, many of us here are here because we've seen our kids hit rock bottom and experience some pretty scary and life threatening events. So please don't get angry with us if it seems like we're pushing the meds. Diet, exercise, and other alternatives can help or can maybe even extend remission, but only along with the meds, at least in pediatrics.

One thing that helped my son (aside from going gluten free) was figuring out his trigger foods. Dairy, chocolate, red meat is iffy. The other thing that helped a lot is exercise and staying active. Sort of a catch 22 though because being active burns more calories. He also drinks one Ensure or Boost extra calorie a day to help. Last, there have been studies about vitamin D and IBD and from that he's on vitamin D supplements along with a good multivitamin. Not everyone likes doing multivitamins, be we do because of the restrictiveness of the gluten free diet.

I hope some of that helps. Please keep us posted on how things go for your daughter.

 

[Jmrogers4]

So sorry I really wish I could say that I have heard of one kid that has been successful with diet and lifestyle changes alone for a good long time. There aren't that many adults I've heard of either most that I have just deal with minor symptoms and think of that as normal. But in my experience any symptom however minor could mean inflammation which means damage which as Mr Chicken says could lead to life threatening complications.

My husband has had crohn's for 25 years. In the beginning when there wasn't a lot of med choices we did diet / lifestyle. He ended up in the hospital yearly and quite a few surgeries. It was not until Imuran was offered and he begin taking that we saw a difference, he has not had a hospital stay or surgery since going on 13 years now.

My son has been diagnosed for over 5 years and we tried diet and LDN (an alternative therapy which has been billed as low risk/side effects) We did make it to remission on that combo but it wasn't enough to keep him there long term he made it about 4 months . Imuran wasn't enough to get him to solid remission either we added diet, supplemental EN, EEN and other mild drugs (Pentasa, Apriso). While he didn't have a lot of the traditional symptoms he had no appetite and just didn't gain weight or grow. By this time he was 14 1/2 and looked about 10 it was really starting to affect him psychologically we pushed for more testing only to find out he had massive amounts of inflammation in the small intestine and it just wasn't showing up in blood results. They were talking surgery but given we weren't sure at that point how much was inflammation and how much was scar tissue. We finally agreed to give remicade a try and it has been a complete turn around, he is in remission! He grew 7" in a year and gained 40 pounds.

In hindsight it's easy for me to say you must try the meds but I get that feeling of maybe my child will be the one it helps and I won't have to give her the scary meds. Now I try not to kick myself with the knowledge that if I would not have been so against the scary meds (and to me Imuran wasn't that scary after all my husband had done so well on it) he could have been in remission much sooner and not worrying about his crohn's daily and trying to explain why he was so small and having to give up on several sports because of his size basically his quality of life was not what it should be and he still wasn't well. But I didn't want my child on any meds I just wanted him to be well/normal but he wasn't so I needed to do something to allow him the greatest access to the quality of life he deserved.

Diet is hard and would be totally worth it if I absolutely knew it would work but add in a picky child, the need for a greater number of calories and a lack of appetite. It was a recipe for failure. Sure I wish EEN was practical long term but it's not, my son was fine with it when he knew an end was in sight but he was so focused on food while on it that family dinners, parties, going out with friends were a nightmare.

I hope your daughter finds remission and yes please keep us posted.

 

[MamaHenn]

My almost 12 year old son was diagnosed about a year and a half ago (with Crohn's). I know exactly where you are in feelng like the meds are the worst thing in the world. When my son was diagnosed we did a few months of entocort and slowly weaned off. Before he stopped taking the entocort, we started LDN and began seeing a nutritionist that specializes in IBD (he has Crohn's). My son currently takes supplements, is gluten/dairy/corn/carrageenan free and takes LDN. At his last appointment in Feb. we were about ready to say let's ask for the meds and to our surprise, and to even the GI's surprise, his levels were pretty much normal. He has been growing and gaining weight. We go back in June for re-checks so we'll see where they are.

All this to say, this is working for US for NOW. After many, many, many long tearful nights (and especially after reading a lot of stories on this forum) we know that it won't be this way forever and we know that we will likely have to face some meds in the future. So long as my son is healthy, we'll ride this train as long as we can and monitor him carefully. My son also did not have many of the symptoms most have. He really was just not gaining and was anemic. Had he truly been suffering and in the bathroom 10 times a day, I would not have hesitated to start meds sooner.

 

[danneka]

Hi There...just a little update. We saw a Naturopath today. She assured us that indeed she will be able to help us and that our goal now is not "remission" but rather "eradication" of the disease. She has advised us that we need to cut out dairy and gluten altogether. She suggested we continue with the high quality liquid (lemon meringue pie flavor) salmon oil, as well as Aloe Vera Juice and our vitamin/iron supplements. Once we fully transition my daughter back to solids she will undergo food allergy/sensitivity testing to find out what other items she may need to avoid. My daughter also had her adenoids and tonsils out at age 8 and we were advised that when the adenoids and/or tonsils are removed, their function of filtering toxins entering the body is then moved down to the gut! Makes sense! The adenoids are part of the immune system and if they are removed, the body may compensate by using the gut to perform those functions (which of course, it is not accustomed to). This abrupt introduction to added toxins which would normally be filtered by the adenoids and/or tonsils may cause the gut to react in unexpected ways and the extra stimulation may trigger an ongoing inflammatory reaction which could then present as IBD symptoms.
The Naturopath advised that many of the medicines which are prescribed by medical doctors for Crohn's are just band-aids which make the symptoms of the disease more tolerable, whereas Naturopaths are more interested in finding the root of the disease and working to put an end to the disease for good if that is at all possible. As we finish the transition to solid foods, she will also make changes to her supplement regimen and work to maintain optimal gut flora with probiotics and other items. So, whether we're dealing with straight up Crohn's; food allergies; or the result of her adenoidectomy, I am feeling optimistic that we will be able to beat this disease with the support of a Naturopath who sees my daughter as an individual and not "just another Crohn's patient" following a cookie cutter treatment regimen with risky drugs that will do nothing to help her overcome the disease but instead make her condition "livable". I'll keep in touch as I hope you all will as well, with any tips you feel may be helpful. Cheers! Danneka

 

[Mr chicken]

Please continue to see a pediatric GI in addition to a naturopath .
Untreated crohns or under treated crohns put simply can kill
There are no cures or ways to eradicate the disease.
The naturopath can be dangerous for treating food allergies as well
You need to see a board certified pediactric allergist .
The naturopath tends to test using iGg ( every one makes these antibodies by the way and are not harmful )


Paging Dusty

 

[Clash]

You do know there isn't a cure for CD right? If the naturopathic world had found one they'd screaming it from the roof tops and lining their pockets.

I'd be wary of anyone who felt they could "eradicate the disease". There are some vaccine trials going on right now but the jury is still out on those.

Have you read up on aloe Vera juice? It's not good for those with IBD:

Aloe Vera contains mucilaginous polysaccharides (very hard to digest for people with compromised digestive systems) and increases the release of tumor necrosis factor (what Remicade blocks) which is associated with IBD inflammation and increased immune stimulation.

 

[crohnsinct]

Second the suggestion that you continue to see the GI in addition to the naturalpath. It is important to monitor the disease with blood and fecal tests as well as imaging. It is very possible to get your daughter feeling better either with drugs or with natural methods. However, you MUST look inside to see what is happening to the gut. It has happened more than I would care to admit that a person feels great but upon imaging or testing inflammation is found and you do not want to leave inflammation simmering lest you end up in an emergency situation.

I happen to have two daughter who both look and feel great but they still have inflammation. One of my daughters was asymptomatic until her first big flare which landed her in ICU fighting for her life.

Good luck! I truly hope the methods you are using help make her feel better and show full mucosal healing upon scopes and biopsies.

FWIW - we have a world reknown naturalpath near us and I consulted him when my daughter was dx'd and he said there was no cure for Crohn's and that we needed the meds. He did however, offer help with supporting her overall health and any damage to other organs and such that the drugs may cause.

 

[danneka]

My daughter's team includes her Family Doctor; Paediatric Gastro Specialist; Nurse Practitioner Specialist; Dietician; Naturopath; Pharmacist and Yoga Instructor. I'm talkin' big time Inter-professional Collaboration!

Aloe Juice: According to Phyllis A. Balch, certified nutritional consultant and author of the book "Prescription for Herbal Healing," aloe juice has anti-inflammatory properties that not only work to effectively treat Crohn's disease but also ensure soft stools (which is good for my daughter as she struggles with constipation).The University of Maryland Medical Center notes that aloe contains glycoproteins and polysaccharides, substances that help reduce healing time, diminish pain and inflammation and support skin growth. In theory, when ingested, these compounds should help heal the inner lining of the intestines and digestive tract.

 

[24601]

Hi Danneka!

How often does your daughter's GI plan on doing bloods and fecal calprotectin tests to monitor disease activity?

Please do keep us updated. I know so many people will be wanting to know how your daughter is doing. And we're all delighted for anyone to be in remission no matter what approach they use. And we love to hear about people who achieve deep, stable remission!

It's so easy for those who get well to forget about updates. Plus everyone on the forum is here to answer any questions whenever it's needed as well so that's great.

Hope everything goes well!

 

[Misty triplett]

We have had two infusions of remicade and my son is in clinical remission thankfully. All the meds are so scary of course. Is there not a way to push for other methods like fecal transplants. They have been doing them in Australia for several years on kids and this has kept kids off any other meds. I'm sure it's not a cure all by any means but if it can help one child why is the FDA in the u.s not allowing this.
It makes me so upset that this isn't even an option to try first before the drugs.

 

[Misty triplett]

We have had two infusions of remicade and my son is in clinical remission thankfully. All the meds are so scary of course. Is there not a way to push for other methods like fecal transplants. They have been doing them in Australia for several years on kids and this has kept kids off any other meds. I'm sure it's not a cure all by any means but if it can help one child why is the FDA in the u.s not allowing this.
It makes me so upset that this isn't even an option to try first before the drugs.

 

[Mr chicken]

There are clinical trials for fecal transplants in children
You just need to sign up ..

 

[Mr chicken]

https://clinicaltrials.gov/ct2/show/NCT02108821

Here is the link to sign up

 

[Clash]

There's a difference to how aloe can affect inflammation on the skin and that with in the body. My son suffers from C instead of D when he is flaring but our GI didn't want him on laxatives that would cause cramping and pain, he felt CD pain was enough, so a laxative that doesn't ha e cramping effects was chosen.

This is one source but if you search on PubMed or Google the side effects of aloe Vera juice there are many more legitimate sources.

The Memorial Sloan-Kettering Cancer Center warns that drinking aloe vera can cause adverse effects such as diarrhea. This occurs because aloe juice and aloe latex contain a substance called anthraquinone, which is a laxative. Severe diarrhea can cause pain, cramping and dehydration.

Source:
http://healthyeating.sfgate.com/health-risks-benefits-taking-aloe-vera-juice-internally-5017.html

 

[happy]

Hi danneka,
Welcome to the forum. So sorry to hear that your daughter has been ill with this disease. As you can tell from my signature, I am one of the few lucky people who has managed to achieve and maintain remission with EEN followed by a full elimination diet. It certainly has not been easy and I certainly have had many scary medical problems along the way. You can read more about my story on this thread: http://www.crohnsforum.com/showthread.php?t=31028

I started seeing a naturopath about a year before the full onset of my disease. I did everything that she suggested--but I still developed IBD anyway. I don't view it as a failure--just that my condition had gone beyond the scope of what she could help me with. I could see myself seeing her again in the future for general well-being and to optimize my health. But I don't expect her to be able to 'cure' my IBD. Nobody and nothing has been shown to cure IBD for everyone ( although I think some experimental extreme treatments have had some success.) If there was a 'cure'--we would all know about it.

I chose my treatment of EEN followed by a full elimination diet because although I was extremely ill, I was also obese at the time and the doctors did not understand how ill I was despite rapidly losing weight. A specialist appointment was six to seven months away and would not be moved up because of my weight and good blood results. I had also had one form of cancer and a prophylactic surgery for another type that runs in my family, so I knew that I had few medication options at the time.

I researched my options and chose my treatment. I was monitored by a GP, but still had many problems along the way.

In short, if it were my child, I would research the partial EN/partial food options and if my child were on board I would continue EN while adding food based on DR. Hunter's exclusion diet or on the Anti-inflammatory diet while educating myself about the medication regimes. I would ask the GI to help decide on clinical parameters to monitor her progress and set timelines for testing and points along the way if/when medications would need to be added. I would ask the GI about any concerns following the naturopath's approach during this process. I would run from the naturopath if they suggested that it had to be their approach only without medication.

Here is really good research info about various diets tried for IBD:http://www.medscape.com/viewarticle/840847

Here is good basic IBD info, including EN:http://media.chop.edu/data/files/pdfs/ibd-day-2013-ibd-101-current-therapies.pdf

Here is the anti-inflammatory diet info: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896778/

I would share this info with your GI and naturopath so they know what you are thinking.

May your daughter soon be feeling better with whatever treatment method you choose.

Good luck

 

[Misty triplett]

There are clinical trials for fecal transplants in children
You just need to sign up ..

He isn't allowed due to fitsula unfortunately

 

[CrohnsKidMom]

Welcome to the forum danneka. The only thing I might add to the cautions already expressed, is to perhaps have a discussion with the naturopath about the differences in CD between kids and adults. I have read about cases of adults with CD who have claimed to "cure" (obtain deep remission?) their disease through diet, lifestyle changes, and naturopathic treatments. I have not however, read of any cases like this involving a child. Maybe they're out there, but I've not come across them. CD tends to be more aggressive in children.

There are many knowledgeable parents on this forum, and their advice has proven to be very beneficial to me. Whatever treatment path you choose for your child I hope you have great success. Please keep us updated. Good luck!

 

[DustyKat]

Are you still around danneka?

Dusty. xxx

 

[Lady Organic]

yes, I'd like to have updates too!! You can take a look at IBD-AID in my signature for further insight on a possible interesting diet for IBD. This IBD team in Massachusets has been working for years on this diets with patients and i am waiting impatiently to read further journal's articles. I'd remove all refined sugars as well. You may also consider keeping a portion of EEN diet along the real food intake. A vegetarian type of diet has also been shown to maintain remission better.
please view the fallowing video by Pediatric GI Dr Baldassano from Philadelphia, on EEn and diet. : https://www.youtube.com/embed/6EbHUYy5ePg

physical activity has also been associated with maintenance of remission.

vitamin D must be checked to make sure the levels are good. IBD patients often need to supplement.

 

[happy]

Thanks for the Youtube presentation link Lady Organic--great info.