It's a Family Affair

I've been stalking the forums since my 5-year old daughter was diagnosed with Crohn's Disease in January. My 14-year old son has recently started to complain of abdominal pains and is in the process of being evaluated for IBS, or possibly Crohn's. My mother was diagnosed with Crohn's several years ago and has recently had a severe flare. Her doctor's started her on Remicade 2 weeks ago.

So, I guess it's obvious that it runs in families. :tinfoil:

My husband and I are chiropractors/acupuncturists. We've had some experience treating patients with Crohn's Disease, but we were grossly unprepared to deal with it on a more personal level. It is very sobering to have a sick child and to make choices for her that will affect her entire life. We have decided to politely decline Remicade at this time to pursue a more holistic route. Not sure it will work, and our GI certainly is skeptical. We have to try what we know first.

We decided to start a blog to document our Crohn's journey. As difficult as it has been to go through this, I can't imagine feeling as if I had no choices or control over my health. The messages we've gotten from our specialists are:

• You won't get better without Remicade
• Nothing helps.....not diet, not exercise.....NOTHING

However, we've had patients improve under our care in the past and there is no way we weren't going to try everything under the sun with our own daughter. She is on a gluten-free, dairy-free diet that is supplemented with fish oil, probiotics, digestive enzymes, and a good multi-vitamin. She gets regular chiropractic adjustments and laser acupuncture treatments.

Bella is currently doing very well. Only 1 BM per day, lots of energy, good appetite......but the GI warns us that looks can be deceiving. We'll be having more blood drawn in a few weeks, and repeat scopes done in June, so we'll have a better idea of her progress then.

If you want to follow our story, feel free to subscribe to our blog. I'm sure I'll also be checking in here along the way.

Greetings and welcome I'm so glad you joined! I'm so sorry to hear about Bella and your 14 year old AND your mom Various things:

1. If your GI decided to start Bella on Remicade, either he believes in the top down approach to therapy or she has something like fistulizing Crohn's Disease. Does she have fistulas? How severe is her disease?

2. I agree with your doctor that looks can be deceiving. There can be ongoing, smoldering inflammation despite her looking well which can lead to scarring, stricturing, and then progressively worse issues. I'm all for the holistic route in many circumstances but feel it's very important to bring western medicine into the group so they can monitor certain variables.

3. If you're interested in gluten free, dairy free, I'd suggest looking into the [wiki]Specific Carbohydrate Diet[/wiki]. Many have had good success with it and it's very systemized. It's not 100% dairy free but they explain why they allow a few specific dairy products quite well. With that said, I'm also a huge fan of enteral nutrition for kids with IBD.

4. I'm not a fan of multivitamins. I'm a fan of having vitamin levels tested and supplementing properly. For example, if she's deficient in vitamin B12 (very common in Crohn's Disease patients) a multivitamin is going to be nowhere near sufficient to overcome that deficiency. Other common deficiencies in Crohn's Disease patients without a lot of diarrhea are vitamin D, folate, and other B vitamins.

5. We have a parents of kids with IBD section. Check it out, there's some amazing people there who know exactly what you're going through.

We're here for you anytime. If you're going to go the holistic route with this disease you need to become an EXPERT. Otherwise you're going to be shooting in every direction and your daughter's health may be detrimentally affected as a result. We're here to help you in that quest in any way we can. For that matter, even if you went the traditional route I think becoming an expert is important so you can be a great advocate.

I wish you and your family nothing but the best.

Hi David! Thanks for all of the information.

Bella's disease was classified as moderate and at this time, is only affecting her colon. She does not have any fistulas or strictures. Her doctor uses the top-down approach in almost all cases. We haven't abandoned a Western approach altogether, but even our primary care doctor feels that it may be premature to start Remicade. (BTW, I was told that they wanted to start it before she left the hospital so that they would not have to get pre-approval from our insurance. I don't think that is the best way to decide on a treatment plan.)

I looked at the SCD, and our diet is very similar. Dairy seems to be a real issue with everyone in my family, so I'm not ready to add it back in. Personally, I've felt much better since eliminating it.

I agree that Multi-vitamins are insufficient for filling in the gaps of specific vitamin deficiencies. We use a whole food supplement that is easily absorbed, and she has also started taking Vitamin D. We will start her on B-12 next week as we are adding new supplements slowly, as to not overwhelm her system. All of her levels have been tested and we chose her supplementation from those tests. So, I definitely agree with you on that point.

And, I am working on the "EXPERT" thing. ;0) I have found a wealth of information here and know so much more than I did 2 months ago! We have taken a very systematic approach with her treatment, and we are actively consulting with other holistic experts. We will also be looking for a second opinion from a new GI doctor, as I do want to have a plan B in place....just in case. The enteral nutrition looks like it may be a very good option and I don't think our current GI doctor will consider anything but Remicade.

Thank you again. I really do appreciate all the information.

That's great, good for you If you're comfortable sharing, what were her D and B12 levels? And was she deficient in anything else?

And for the record, I'm very much working on the expert thing as well. I figure 10 more years and I'll be close It's amazing how much there is to learn.

Years ago, a friend of mine had me read "Eating Right For a Bad Gut", which has since been revised and updated. I do believe that diet and vitamin/mineral supplementation can absolutely improve the Crohn's, so you might get that book. It was very informative for me as to what I might need, what dosages, etc.

Welcome! Sorry to hear of so many in your family affected by this disease. I also agree that looks can be deceiving. But as long as she's getting regular scopes that show no microscopic activity, I'd stick with the natural route. I dabbled a bit in going that route (saw an integrated doc and did an elimination diet and tons of supplements), but it did nothing for me. I never tried chiropractic adjustments, but have heard they're great for many ailments.

Hi there :bigwave: I personally don't like the whole top down approach that some docs have with meds and feel that the more 'lower' level mrds should be tried first whenever possible and based on the scope findings Remicade is perhaps really not yet needed in your daughters case.

As long as future scopes, biopsies etc show that the disease is genuinly inactive then I suppose it cannot hurt to follow the natural route.

Wishing you and your familly well.

xxx

Hi,

I just replied to your post in Josh's thread... rather than rewrite all the same info, I'll just copy/paste info... but, want to say again, that I am sorry that your little girl is having to deal with this now and I hope all turns out well for your son!

I just wanted to mention a couple of treatments that are less risky than the conventional medications. My son is on Enteral Nutrition. There is no risk nor side effects and, for children with Crohns, has a comparable success rate as steroids. (Josh - I'm not sure if it is as effective for UC.) It is commonly used in Europe but less so in Canada or the US. I think this may be due to compliancy as the initial treatment is a period of time (6 weeks for my son) of no food, EN formula only. Not easy to do. But, since then, he has added back all foods, maintenance is still EN but at half dose and his only medication is Nexium (antacid). Another difficulty is that my son ingests the formula overnight through an NG tube - he found it easy to learn to do but, with young ones, this may be a bit more difficult (tube does not need to be removed daily, can be kept in if preferred). However, there are also drinkable formulas available. But, the upsides, as I mentioned, are no risk, no side effects, quick remission (within days his symptoms were mainly gone), is anti-inflammatory, provides all the necessary nutrition and, I believe, can be used in combination with other treatments. Please have a look through the Enteral Nutrition subforum under Treatments - lots of info there.

Also, look through the Low Dose Naltrexone (LDN) subforum (also under Treatments) - this is another very low risk medication, however, has been approved for treatment of other illnesses, not auto-immune/Crohns/UC, so is not often suggested by GIs. There have been a number of members here who have had success with LDN. When/if EN fails to keep my son in remission, this would be the medication I would like my son to try before others.

And, as was mentioned before, have a look through the Parents of Kids w/IBD subforum - you'll find many helpful, supportive parents there as well.

Good luck!

Hi mstout and :welcome:

I can't add to the great info you've been given.

I'm sorry to hear about your son and daughter and your Mum. I hope your daughter is soon on the road to recovery. Please keep us posted on how she going and on what is happening with your son. :hug:

Good luck!

Dusty. xxx