Needing advice for 15 year old son

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Laura G.
Regular Member


Date Joined Apr 2006
Total Posts : 121
   Posted 9/2/2009 12:13 PM (GMT -7)   


<!--159564{-->I am looking for any ideas that you may think will help before I call the Dr. back. The Dr. actually told me that we could try Tysabri or maybe we should just take him off of all meds and try going hollistic.

I am thinking that his biopsies last time showed very high eosonophil counts which could indicate an allergy. If we tried elemental and did a methodical food re-entry, would he be allergic to the formula?

Steven is currently taking a double dose of Remicade every 6 weeks. He is also on 9mg Entocort. His sed rate is elevated and he feels sick and doesn't have much of a life. He does have some improvement for a few weeks after his Remicade dose, so I am thinking that it is helping even though it is not inducing remission. He is not nearly as sick as he was pre-diagnosis, but he can't even go to Walmart without feeling ill.

We just don't know what to do at this point, but I am very afraid of trying the Tysabri.

I am sorry that I have rambled so much. Any advice at this point will be appreciated and considered.

Laura G./ Steven & Jenny/ both CD

 

P.S. He is also steroid refractory <!--159564}--><!--1226951270.54e38f92-->



trishx
Regular Member


Date Joined Jul 2009
Total Posts : 25
   Posted 9/2/2009 2:57 PM (GMT -7)   
When Remicade was not available in my country and I was so ill after resections, I had no idea what to do and was sick to death of Doctors I ended up having acupuncture 2 times a week and ate fish and rice nearly twice a day......I was certainly not worried about mercury poisening !. It took a while and when I was really bad my acupuncturist used heat lamps cos I could not tolerate the needles at times. but it certainly eased things.
My consultants got very excited about me being on chinese herbs as they do and were taking bottles of bloods out of me as they do not believe in complimentary therapies. I was lucky my therapist was very knowledgable and knew what could harm the Liver etc.....
So it is about finding a safe therapist who knows acupuncture and herbs.
I don't know if this helps... but I really feel for him. My old consultant has also produced Argyl which is a probiotic and my friend who has never been well and can;t take remicade is doing fantastic. However she say's she got worse before she got better.....Its only available in USA at the mo I think.
Sorry about spelling I am after having my infusion and I am so tired I can barely write let alone spell

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 9/2/2009 3:48 PM (GMT -7)   
Since you mentioned eosinophils in the biopsy--have his doctors considered that he might have eosinophilic colitis/enteritis? It is a distinct disease, separate from Crohn's/UC. Just mentioning.

Is his Crohn's in the colon only, ileum and colon, etc.? I assume you already did the elemental and elimination diet? And is he still currently using the elemental diet for some or all of his daily calories?

If he has colitis only, the elemental diet may not be effective. It is more effective when there is also disease in the ileum.

Maybe before going to Tysabri you could consider Remicade + MTX or imuran, Humira, cimzia, or other options? If you think the Remicade is working but just not quite doing enough.

By "going holistic," what did your doctor mean? Exclusive elemental, or something else?

Personally I recommend adding probiotics if you have not already. VSL#3 and/or Primadophilus reuteri. Your doctor can prescribe a double-strength version of VSL#3. I use both probiotics above (VSL#3 capsules--not prescriptoin). I also use a liquid diet (Nestle Peptamen or Nutren) daily for ~500 calories and exclusively on bad days or to get into remission. I have found that my inflammation goes down when I am on the cans exclusively and my bloodwork looks great, but the ESR & CRP tend to creep back up as soon as I am getting most of my calories from "real" food.

I also drink a lot of cranberry juice. It is purely speculation...but I was already doing it to prevent UTIs, and research has shown that the nasty bacteria implicated in Crohn's ileitis are similar to the E. coli that cause UTIs.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying... Enteral Nutrition, VSL#3, Primadophilus Reuteri, Folic Acid, Vitamin E


Laura G.
Regular Member


Date Joined Apr 2006
Total Posts : 121
   Posted 9/2/2009 5:17 PM (GMT -7)   
Thanks for both of your replies. Our original Dr. did'nt believe in elemental and food elimination, so it wasn't offered until after my son was taken off of all food for 5 weeks without I.V nutrition for all but 14 days of the time. Since then he refuses to give up his food, although he now says that he will give it a try. I also asked our current Dr. about the Eosonophilic disorders and he agreed that it was possible, but it was too difficult to diagnose. Steven does take Culturelle.

I am really starting to think that we have to try the elemental/ elimination diet. It is just so confusing to know what to do. I am too afraid of the Tysabri to use it at this point.

Thanks again,

Laura

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 9/2/2009 8:28 PM (GMT -7)   
My doctor was also not supportive of enteral nutrition (EN). I learned about from another member of the forum, Writer. If you have any specific questions she can answer them. She also wrote a book on the subject which is available to purchase. There is also a book called "The IBD Remission Diet" that is actually about elemental diet. It gives an ordered way to re-introduce food which may come in handy if you are unable to find a nutritionist to guide you through food reintroduction. My GI did give me a referral to a nutritionist upon my request, but the nutritionist had never heard of EN/elimination diet. She was able to tell me how many calories per day but that was it. Elemental/elimination diet is more common outside the US.

You should consider the liquid diet if his inflammation is in the ileum. Ileocolonic or ileitis. If he has colitis only, it is less likely to work.

My personal experience: I started exclusive EN using a polymeric diet (Nutren 1.5/2) and felt better within days (this was February of 2008). I "ate" only the diet and drank only water. After about a month I felt as normal as possible and my bloodwork after 8 weeks = no inflammation. Since then I have continued with the liquid diet and I usually have 1-2 cans a day for maintenance and probably go exclusive on the cans for 4-5 days out of the month or whenever I have a bad day. When I start to eat more real food my bloodwork is not as good but I generally feel OK.

Polymeric diets taste better--elemental tastes very unusual/bad. Elemental is also very expensive but I have been able to occasionally get good deals on Peptamen on Ebay. Elemental and polymeric generally work about the same but due to his possible allergy (eosinophilia) it may be better to use elemental. You need to chill it very cold, it may help to serve with ice and/or dilute it with water. Buy the VANILLA version, preferably the 1.5 calorie version so he does not have to drink as many. It took me days before I could drink a whole can...tastes awful. However, if it works he will feel better, and rapidly, so that provides the encouragement needed to continue with it.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying... Enteral Nutrition, VSL#3, Primadophilus Reuteri, Folic Acid, Vitamin E


Marlowe
Regular Member


Date Joined Aug 2009
Total Posts : 31
   Posted 9/2/2009 8:48 PM (GMT -7)   
Laura,

Do you live near one of the top IBD Centers like Cedars Sinai, Mayo Clinic in MN, Johns Hopkins, University of Chicago? They are constantly having clinical trials on new drugs on which is is phase III looks really exciting it is called vendolizumab which is like Tysabri but it is gut specific eliminating the fear of the PML brain infection associated with Tysabri.

Has your son tried Humira or Cimzia?
Marlowe
Crohn's disease, currently no medications, 2 surgeries, ostomy since 2004


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 9/3/2009 9:22 AM (GMT -7)   
You've already received some good information. Just to add, regarding enteral nutrition, it can be worth a try even for colonic disease. In a study just published in July, children with disease limited to the colon had a 79% remission rate, not significantly different from the remission rate achieved with other disease locations. So that was some good news.

Laura G.
Regular Member


Date Joined Apr 2006
Total Posts : 121
   Posted 9/3/2009 10:28 AM (GMT -7)   
Thank you all,

we are not near an IBD center, and our insurance is Kaiser. I don't think that they will offer to pay for a consult and unfortunately, I don't have the cash to do it myself.

Thanks again, all of your help is appreciated,

Laura

CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 9/3/2009 9:03 PM (GMT -7)   
you say your not near a 'ibd clinic' but if your near any major university or a state university then odds are they have a medical school and a major hospital and they would have a GI dept which I know for a fact would have GI's specializing.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/3/2009 10:26 PM (GMT -7)   
Enteral nutrition usually is designed to avoid food intolerances/allergies. It accomplishes that by using amino acids instead of proteins. The immune reaction causing allergic reactions is a response to proteins. They may still cause trouble in other ways. The problems, if any relate to the carbohydrate/sugar components. If they are not digested nearly completely, it can end up causing bacterial growth in the gut. One of the difficulties that they have in treating this disease is that it can be an intolerance to food or to intestinal bacteria or their products or both. Further, there is an autoimmune component - the immune response to gut contents also cross-reacts to body tissue. The problem is to eliminate or greatly reduce the food allergens and bacterial triggers. Both of these can be done with diet.

You already know about the use of enteral nutrition to induce a remission. You should then use the guidelines from the SCD (Specific Carbohydrate Diet) to introduce foods into his diet. In fact the SCD uses a simplified version of enteral nutrition as its starting point. For more information, see:http://www.scdiet.org/ or http://pecanbread.com/p/how/protocol.html and the information under "stages".
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