My son is suffering

Crohn's Disease Forum

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Hi all, my 15 year old son was diagnosised with Crohns in 2007. Since then he has been on all medications from 6mps to Cimzia. In August of this year, he had a bowel resection to remove about 2 ft. of his colon. He was feeling well and getting healthy for about 2 months. Recently, he began to have some signs and symptoms of a flare. On yesterday, he had a scope and indeed his colon has been infected by the Crohns yet again. His peds GI has recommended that we put him on Tysibria (sp) which is a very dangerous drug that can be fatal or cause severe disabilities. We are taking him to see another specialist in 2 weeks to get his take on things. We are fed up at this point and have actually contacted a naturopathic practionioner to see if they may have some answers. Has anyone heard of this medication Tysibria (sp) and has anyone used and had success wiht naturopathy? I look forward to hearing from you all. Thanks
 
Welcome to the forum! I'm really sorry to hear about what your son is going through.

I personally have no experience with Tysabri. You can click on the link to go to the article on the forum wiki. I don't think there is a section on it in the treatment forum, but you might try posting about it there, or searching the forum for it. I've seen others mention it here, so I'm sure there's someone with information that might be useful to you. :)

Have you and your son tried any diets to lessen his symptoms? There are several that have helped people with serious cases when medications did not. You might want to follow that link and read up on them.

I'd recommend that you discuss any diets with your son's doctor(s) before trying them out. Are there any foods he can't eat?
 
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No, we haven't tried of any diets, but I'm willing to do anything to keep him off this new medication. I will check into it. Hoping that the naturopathic folks have some answers. Thanks:thumright:
 
I can only speak for what works for me.

If there was just one thing I would suggest, it would be a liquid probiotic called living streams. If you have tried quality probiotics in the past and they had any benefit whatsoever, I would wager that this would help tremendously. You only take 1-2 drops 3x a day, with or without food (morning, supper, before sleep). This is the original Living Streams Probiotic formula and can be found at livingstreamsmission.com. In my 7 years of tens of different formulas, nothing compares.

In addition to this, the next most effective treatment, which is VERY mild (1/10 the dose of it's on-label application) is called Low Dose Naltrexone. Go to the treatment section and see the top link which lists the phase i & ii studies. This can be taken with most other medications, except pain meds shouldn't be taken within ?6hrs?. Any doctor can prescribe this. I take this with my probiotic at bedtime and it definitely helps, in my case, to do so.

Your son MIGHT be able to get in on a trial Dr Sandra Bingaman ([email protected]) is doing for pediatrics crohn's patients, up to age 17. However, this was posted in 2008 and I'm unsure of its current status http://clinicaltrials.gov/ct2/show/NCT00715117 FYI: a company has recently taken upon itself the costs to conduct a Phase iii study, the final phase for AMA acceptance to approve LDN for crohn's as an on-label use.

After those, I would suggest enteric coated fish oil (akin to 850mg per cap of actual omega 3s, more EPA than DHA--I use source naturals ultra potency fish oil). I would take 2-4 of those a day. However, if you get past the 3-4 cap range, it MIGHT slightly thin the blood--so if internal bleeding is a concern stick with less than 3.

After that, I would say diet is the next most important factor. NO sugars except stevia and REAL honey occassionally. Later on, once things are under control, maybe add cane sugar every once in awhile. Next I would cut out any and all processed foods, meaning eat whole fruits and veges etc. nothing boxed unless there are NO preservatives. Next I would avoid trans fats completely. Personally, I avoid GMOs like the plague. Eat organics to avoid pesticides, preservatives, GMOs etc which all mess with digestion, or find out which non-organics have the least residues. The book Nourishing Traditions has good recipies.

I would also try papaya enzymes, chew 1 or 2 with every bigger meal. I use a NOW product. Surf the net to find big warehouse retailers selling these brands at 30% off.

Maybe the first thing to do is enteral nutrition which is a great way to get into remission. Keep surfing this site for more info on any and all the info I listed above. Good luck.
 
Crohn's is different for everyone but the ileum is usually inflamed and so sublingual methylcobalamin or dibencozide vit. B12 should be supplemented, if not intramuscular shots. Also, vit. D3 levels should be kept up--at least 2000iu a day, I take a 5000 cap. Doctors can do testing for most vitamin deficiencies and B12 should probably be well above 1000, though doctors might think anything above 600 is OK, it is most likely not.

Other food considerations are highly variable depending on the individual but worth testing via elimination diets to test whether he is allergic/intollerant to: milk, gluten, and caffeine being most prevalent. Also, high nitrogen fertilized foods like non-organic lettuces may be suspect. In the long run refined, white flours should be avoided also as they feed bad bacteria, like sugar does. Fake sugars should ALL (sorbitol, aspartame, potassium acesulfame, high fructose corn syrup...)be avoided except maybe xylitol--though this still may cause problems in some. Carrageenan should probably be excluded--this is commonly in ice cream, coconut and almond milk.

These are all just ideas for starters. It takes awhile to gradually implement such restrictions/tests. Just keep learning.
 
I am so sorry your son is suffering so much with his Crohns! It must be so heartbreaking for you. :ghug: My son, 18 now, was diagnosed just before turning 17. He was taken into remission using Enteral Nutrition (EN) and this has been his maintenance treatment.

I don't know if EN was suggested to you by your GI, for some reason, while it is common the first treatment option for children around the world, U.S. GIs seem to be the exception in using this treatment. It has comparable success rates at inducing remission as steroids (although the success rates may vary depending on where the crohns is located), has no side effects (it's not a medication, it's a nutritional formula), provides all the necessary nutrition and has anti-inflammatory properties.

It requires that all food be replaced with the formula for approx. 6-8 weeks. The formula can be ingested either orally (shakes) or through NG tube (as my son does).

It can also be used together with medication and some use it at a lower dose as a supplement (as my son does now).

Unforunately, on it's own, it is not as successful as maintaining remission. However, there are some children here who have used it together with their medication when the medication alone wasn't doing the job. I've also heard of people who use the 'exclusive' period (no food, formula only) off and on when they are having problems.

There is a subforum for Enteral Nutrition under the Treatment section as well as a thread in the Parents with Kids with IBD - I've attached a link to this thread and another with additional info.

http://www.crohnsforum.com/showthread.php?t=36345
http://www.crohnsforum.com/showthread.php?t=39758


As far as Tsyaberi - I have no experience with this but have read of one or two members using this. If you use the 'Search', you should be able to find some info.


Please also have a look through the Parents of Kids with IBD - you'll find some wonderful members/parents there who are very knowledgeable and supportive (and who do understand your worries, concerns, etc.).

Good luck - I hope your son finds some relief soon!

:ghug:
 
Yes, my son was on TPN from January to August of this year. He then went on to have a bowel resection in late Aug. and now he is having a flare, so we have tried everything, so we have decided to try done holistic/ naturopathy things.
 
Hi all, my 15 year old son was diagnosised with Crohns in 2007. Since then he has been on all medications from 6mps to Cimzia. In August of this year, he had a bowel resection to remove about 2 ft. of his colon. He was feeling well and getting healthy for about 2 months. Recently, he began to have some signs and symptoms of a flare. On yesterday, he had a scope and indeed his colon has been infected by the Crohns yet again. His peds GI has recommended that we put him on Tysibria (sp) which is a very dangerous drug that can be fatal or cause severe disabilities. We are taking him to see another specialist in 2 weeks to get his take on things. We are fed up at this point and have actually contacted a naturopathic practionioner to see if they may have some answers. Has anyone heard of this medication Tysibria (sp) and has anyone used and had success wiht naturopathy? I look forward to hearing from you all. Thanks

I have not heard of it but looked it up. I would get a second opinion on this before you do it IMHO. I would start looking your diet and natural options also before doing this.


Tysabri (Natalizumab Injection)Natalizumab is used to prevent episodes of symptoms and slow the worsening of disability in people who have relapsing forms (course of disease where symptoms flare up from time to time) of multiple sclerosis (MS; a disease in which the nerves do not function properly and people may experience weakness, numbness, loss of muscle coordination, and problems with vision, speech, and bladder control). Natalizumab is usually used by people who were not helped by other medications for MS or who cannot take these medications. Natalizumab is also used to treat and prevent episodes of symptoms in people who have Crohn's disease (a condition in which the body attacks the lining of the digestive tract, causing pain, diarrhea, weight loss, and fever) who have not been helped by other medications or who cannot take other medications. Natalizumab is in a class of medications called immunomodulators. It works by stopping certain cells of the immune system from reaching the brain and spinal cord or digestive tract and causing damage.
 

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