Anyone's child fail 3 biologics?

[nelsonshan]

Hi all -
On my last post, we were looking into Stelara, after failing both Remicade and Humira. It's been about 7 months, and he's failing Stelara. His dr believe he's a primary non-responder. All of his inflammatory markers are up, and he's having pain even just walking.
She wants to do another MRE/scopes, but it's not safe to do so right now. But she said we are looking at trying Entyvio, or an iliostomy, or both. Or possibly going back to Humira.
We're just beside ourselves at the thought of an iliostomy - he just turned 11.
Any thoughts?
Guess I just needed to vent and get some support.
Thanks!

 

[pdx]

I don't have any advice for you, but I'm so sorry to hear all this, and I'm sorry that this is all happening now. I hope that whatever you end up doing works really well and gives your son some relief.

 

[nelsonshan]

PDX - I see your daughter tried budesonide - did that work quickly for her? They are putting my son on that in the meantime.

 

[my little penguin]

How high of a dose of Stelara is he on ?
7 months isn’t long enough for Stelara to work it can take 6-12 months before it works
Ds was on 90 mg every 8 weeks at 8 months and still had inflammation
Switched to 90 mg every 4 weeks plus mtx and that seems to do the trick
Is he on mtx ?
What about een to reduce inflammation until Stelara takes over ??

entyvio will also take at least 12 months to work and may need higher more frequent dosing than adult dosing

can you get a second opinion ??

What age was he dx again ?
Anything below age 8 is considered veo ibd difficult to treat
CHOP has a veo ibd clinic (only a few in the US)
I would try to get in there
Ds is seen there

 

[pdx]

I'm actually not sure how fast (or if) the budesonide worked. My daughter was really sick right at diagnosis, but her doctor started her treatment with just Remicade, to see if that would be enough. Through the next month, she just kept getting worse, so then we added EEN, which helped some but she still was really ill. After a hospital admission, her doctor added budesonide and methotrexate, while continuing with EEN. A month later, she was much better, but it's hard to know if any one thing worked the most, or if it was a combo of everything.

A couple of years ago, after another flare, my daughter tried budesonide again and it didn't seem to do a lot that time.

I think it's worth trying, especially right now, when it's a much safer choice than prednisone due to COVID-19. I agree with MLP that EEN could also really help. And you could also try switching to methotrexate in place of azathioprine--my daughter seems to get therapeutic effects from it (as opposed to just helping to avoid Remicade antibodies).

 

[nelsonshan]

He was on 90mg q8 weeks, and after 4 months, his level was under 1 and he was still having inflammation. For the last 3+ months, he's done 90mg q4 weeks. We just tested levels again, and they are perfect at 5, but all of his inflammatory markers went up. She thinks he's a non-responder.
I am heavily considering EEN. I know it'll be so hard.

He was diagnosed at 6. I did do the on-line second opinion thru Boston Childrens. At the time, I was stressed about him failing Humira, since there wasn't much left. They agreed he do the Stelara. I didn't think we'd be looking at failing it so soon. Now I'm in a panic, because I don't want him to have an ostomy.

I asked his dr if she thought the STelara just needed more time, and she doesn't think so. She thinks with the levels it's at, that it should be working, or at least seeing a drop in inflammation. Not to mention all the stomach pain he's having. She really wants to see inside though, and with the covid, they need to put it off.

I'm trying to get an appt at Boston Childrens - if I have to drive there myself! You think CHOP would be better?

 

[Delta_hippo]

I’m so sorry to hear your news. All I can suggest is to try and support with diet options - een or there is a small study showing half een and half Crohn’s disease exclusion diet got same results - only looked at inducing remission rather than maintaining and only in mild to moderate cases BUT if the idea of total een freaks out your little boy might be worth considering.
Don’t know where you live but maybe vitamin d gummies? I know these are only subtle tweaks. Maybe worth a discussion with doc about SCD diet - some people seem to respond others not at all.
Entyvio works differently to stelara and the anti-tnfs so who knows, there is a chance your boy will respond.
Wishing you all the best

 

[pdx]

I remember how EEN seemed hard, even impossible, to me when our doctor first brought it up. My daughter has a lot of physical sensitivities, so I just couldn't even imagine it. She wasn't able to drink formula so she needed an NG tube. The first day the tube was in, it was very uncomfortable, but by the 3rd day she really hardly noticed it. In addition, by that third day she was feeling *so much* better--no more abdominal pain and she had a ton more energy--so she really bought in after that. She was out of school that year so she elected to just leave the tube in all the time, but when she later switched to 50% EEN she learned to take out and reinsert the tube each day.

She was 12 that year, so similar in age to your son. I don't remember all the details of that time, but I do remember that the rest of us never ate anything in front of her--we would grab our meals in other rooms and not talk about food with her. Her doctor also let her do 90% EEN, where she got her full caloric needs from EEN, but was allowed to do about 200 calories of real food each day, and that really helped her not to have food cravings. We picked the foods from the IBD-AID diet, and that small amount of food didn't seem to interfere with the good effects of the EEN.

If you do decide to try it, feel free to ask questions here--a number of kids on the board have done it.

One last thing: when my daughter first tried EEN, she tried to drink the formula, and we kept saying things like "you have to drink this or you'll have to get an NG-tube. We kept using an NG-tube as this big bad threat, so when it turned out she really wasn't able to drink the formula and needed a tube, we felt terrible. We should have just said something like "EEN is a treatment that will probably help you get better, and some kids drink their formula, and some kids find an NG-tube easier, so let's see which way works better for you."

 

[my little penguin]

I will pm you

 

[Pangolin]

Entyvio is a good option--I'd try that before surgery. There have been reports of success with a combination of Entyvio and Stelara in very tough cases, although it's highly experimental and doctors would be unlikely to be willing to try it.

 

[crohnsinct]

Soooo much to unpack here so be patient with me.

First, where is your son's disease located? Is he suffering symptom wise? How bad are his inflammatory markers?

Stelara has better success in the small bowel and Entyvio in the colon. This is not to say that either drug hasn't been successful in other areas but this is generally what they have found. If you have disease in both locations, they typically treat the overriding inflammation and hope for the best with the other. O has been on Entyvio for a year now and is still not in remission. She has both small bowel disease and heavy colonic and rectal disease burden. Stelara could be our next move BUT we can't risk leaving her colon under treated so we would be adding it. I actually have been reading of quite a few docs using this combo with rather good results. Even pediatric docs are using the combo. They are less afraid to combine these two drugs than the anti tnf's because they are more targeted therapies and do not seem to have the immune suppression that the anti tnf's have.

As you probably know we are also facing possible total proctocolectomy with O. We have met with a surgeon. For her it would be permanent but would allow us to remove the "drama queen" and then leave us free to treat the "supporting actor". The important thing to remember is that it is just another treatment option. It doesn't mean anyone failed and actually shouldn't be looked at as a last resort. The importance of timing it right can not be understated. It is actually better to have the surgery before your child gets to a point where it is the only option because in those situations it becomes an emergency surgery OR you have exhausted all med options and even with the surgery your child will need meds and if you have burned through them all you won't have much left.

That said, you do still have options.

Are they talking a permanent ostomy or a temporary diversion to rest the gut for awhile to hopefully regain control of the disease? Temporary diversions are actually a very useful tool for some and they reconnect and are able to manage disease with meds.

Both of my daughter's use Budesonide with very good success. T has disease confined to her TI and O has severe and steroid dependent disease in her colon and rectum and milder disease in her TI.

Both girls have also used EEN with great success. In O's case she was on Remicade and steroid dependent. Her Gi and I decided to try to get the disease under control with a round of EEN. EEN got her into remission and healed enough that then the Remicade could take over for about 3 years.

SCD is also an option. As with any IBD therapy (except the anti tnf) it doesn't have a great success rate (maybe 40%) and is better with the small bowel than the colon but we are trying it now and I am on SCD parents forums and I will tell you that the results are nothing short of amazing. The best way to approach it is doing a round of EEN first and then phasing in SCD. We added it to O's therapy without EEN and rushing through the phases, along with budesonide as a last resort before meeting with the surgeon again. It happens to not be working for O but again her severe disease burden is her colon and we didn't take it slowly. We are meeting with a registered dietician on Friday to review everything.

Another option that is being used quite a bit these days is adding tofacitinib to either Stelara or Entyvio. At first it was mostly just adult GI's using it but now I am reading more and more posts from pediatric GI's that they are adding it with good results. Tofa did get a lot of bad press regarding side effects so it is something you should really research for yourself and discuss with your GI or a second opinion GI but thought I would throw it out there just so you know what is available. The GI's seem to be a lot more comfortable with it these days so maybe they just know more about how to use it. It also seems like a pretty easy add as far as insurance goes because all the GI's are surprised at how easily they get insurance approval.

Lastly, they are finding that if you take at least a one year break from the anti tnf agents that your likelihood of success a second time around is much greater.

We have a meeting with O's GI this Friday so I would be happy to share what pearls of wisdom he shares with us.

I am sorry you are finding yourself this place. O is 20 and is fighting the colectomy tooth and nail so I get it but honestly, I have never met a patient who had the surgery and regretted it. Most of them say it was life changing. O says she doesn't feel "bad enough" to have the surgery but the docs just say that she is so used to feeling like this that she doesn't remember what it is like to feel normal and that after the surgery she will be amazed.

Feel free to PM me if you want.

 

[crohnsinct]

Forgot about two other things we tried.

O tried Tacrolimus but failed that miserably. But I know quite a few others use it successfully. You have to monitor the kidneys closely wit this one.

She also tried antibiotic treatment. First vancomycin alone and that didn't work and then did a cocktail of 3 antibiotics I forget off hand what they were but it is in her thread. It didn't work for her but again it has worked for quite a few others.

 

[polly13]

Hi there, my daughter Lucy was looking at this scenario a year ago, she failed remicade at 4, went into Humira, worked for a number of years, about 18 months ago she became symptomatic, after a number of months it was decided that she had failed humira, switch to stelara, 5 months later worse than ever, hospitalised for two weeks, 12 weeks of een, humira and stelara, 9 months later still on ste lara and humira and doing great. Somebody else mentioned two biologics and while it is really scary, we had no real choice and she is well now so I think it was the right decision. I hope things improve for you and you find something that works for him.

 

[BilboTheApe]

There is lots of good advice here already, so I won't add much more.

I just wanted to give another thumbs up for EEN. I was looking at potential surgery 2 years ago myself as humira was not working as quickly as we would have liked.

The docs decided to try me on EEN for 6 weeks to see how I would go, and 8 weeks later I was in remission.

I used a polymeric formula, which means my digestive system still had to do a bit of work to break things down. I had no problems drinking them really, although they were quite sweet!

EEN is not a cure but it can really buy some people some time. As for the difficulty of it, people will tell you different things, but I will just say it is getting through that first week or two that is the hardest. It doesn't become easy after that, but you get into a certain flow and it becomes easier.

Best of luck! You are in a tough spot and I pray you guys get through this well. Hang in there.

 

[crohnsinct]

I posted in O’s thread but wanted to share what we discussed on Friday.

Since she has been off anti tnf therapy for a year he feels it is a good time to try to add one back in and wants to try Humira. The ant tnf said suppress how much anti tnf you make and Entyvio will reduce the strength of what tnf survives. So we are attacking tnf with two mechanisms.

She is also staying on Budesinude until we get consistently good labs.

She will also do a round of EEN to help heal the mucosa so maybe if we hand the drugs a healed bowel they will be able to maintain it for a while. Doing this rather than leave the drugs to climb the mountain.

if this fails and depending on how soon we declare that (ie uf other meds are released) he is pretty certain the total procto colectomy will be her next step. He isthinking the decision will be made pretty quickly because Humira works faster so if she isn’t responding by end of June she can have the surgery and still have time to recover/adjust in time to go back to college

 

[Cucurbita]

Hi,
I read the current treatment according to your profile:

Humira 40mg weekly
Azathioprine 75mg daily
Vit d 2000IU
Ferrous sulfate 325mg twice daily
Zinc sulfate 220mg twice daily
Zyrtec 10mg daily
Probiotic

It says Humira, so it can't be up to date. But I will provide some advice regarding it.

(1) In case that your son is still taking ferrous sulfate, consider:
- Having iron injections if he really needs it. It will spare his bowels.
- If he doesn't really need it so bad, let's say the anemia is mild, it's better not to take anything.
- If you still insist in taking iron supplements, it's better to have a lyposomal or chelated form, because it's better absorbed. Also, iron is better absorbed and tolerated if you take it one other day, instead of every day. This is because absorption is up regulated when exposure isn't daily.

(2) For zinc, I do think it is very appropiate to take zinc because it is needed both for healing tissues and keeping the bowel barrier integrity. So I would take it. But not the sulfate form, which is poorly absorbed and allows pathogenic bacteria to take advantage of it to multiply and build biofilms. Take Zinc bisglycinate instead. A reasonable dose for a kid with Crohn's who is in a flare and isn't eating red meat nor oysters would be 25 mg zinc tablets three times a week. Or, if you can pay it, buy zinc carnosine. It is a patented form that is good to accelerate recovering of ulcers in the stomach and upper small bowel because it has the capability to bind to injured tissue and accelerate healing rate. I don't think it can help the colon, but it will help the stomach.

(3) Vitamin D is good. Even if he receives sun on his skin he wouldn't be able to convert radiation into vitamin D because systemic inflammation hampers this conversion. So it's good to supplement. You could even increase the dosage, because 2000 IU seem to be a poor dosage for Crohn's patients in flare. They usually need 5000 IU or even 10000 IU at the beginning to spare their deficiency. Now, it's good to accompany vitamin D with vitamin A. It is needed for the proper function of our barriers, including skin and bowel, and the fabrication of antimicrobial peptides. K2 is also a good vitamin to accompany because it prevents the toxic effects of Vitamin D if you overdose it. So I propose this:
- You want to supplement at least 5000 IU of vitamin D3 per day
- But you want to supplement Vitamin A too, so that D and A are in equilibrium. But artificial vitamin A isn't good and can be potentially toxic
- So a good solution is to take cod liver oil, which has both vitamins in natural forms. If you buy it in pills it is usually rancid, so it's better to buy cod liver cans (if your supermanket sells them) or a bottle of oil. Preserve it in the fridge.

(4) Now, your son absolutely should absolutely NOT take probiotics. They are very harmful if your disease is active:
- Think of it as adding bacteria to a open wound. You increase the bacterial stream in the faeces, which enters the ulcers and make the situation worst.
- If you avoid any probiotic in the diet, it will probably help his condition in the stomach and ileum a lot.
- Bacteria and its fragments (LPS) are highly immunogenic and it is another reason to avoid them. It doesn't mind if the bacteria is live or death, they are still immunogenic.
- So avoid probiotic pills, fermented yogurts and kefir, fermented vegetables, and any source of probiotics.
- He will be able to take probiotics once he reaches DEEP remission. It means that in a colonoscopy the doctor certifies that there are no wounds. But it's not the moment now.

(5) Some nutritional advice:
- I recommend him to follow CD exclusion diet (CDED). It's not difficult to follow compared to EEN. It's based on solid, real food: cooled and reheated potatoes, chicken breast, banana, peeled apples, egg yolks (egg whites are more allergenic so I would avoid them); plus some other foods in limited amount, such as carrot. Cooked in gentle ways, usually water based ways, using little or no oil in the diet.
- Reduce fats especially purified sources such as oils and butter (and eat some avocado and egg yolks instead)
- Reduce insoluble fiber as much as possible.
- Use more potatoes and less rice. Similar properties but potatoes are much more nutritious.
- Avoid grains, except white rice. That includes bread.
(If you need info regarding the CDED let me know and I will lend you the resources. It's not difficult at all to understand and follow it. And it has proven even better results than EEN.)

(6) Ask your doctor if he thinks that mesalamine can be appropiate. I can't tell my reasons because I'm not a doctor, and legally cannot provide medical advice, but I tend to think it may be helpul in his case.

I don't usually participate in the forum but will keep an eye if you need something else for your son. I hope this advice helps him.

 

[Cucurbita]

I don't think entyvio will help him much. It is usually highly inefficient compared to anti TNF or anti interleukin 12/23 (when you fail several biologics, statistics show that remission rates for any new biologic you try are much lower that if you were naive to all biologics). And it acts basically in the colon, not the ileum and not the stomach. So I'm not saying you don't try it, of course try it if you have no other options, but definitely please do not rely solely on it and use a diet as an adjunct therapy.

As I said I recommend CDED, together with some supplement with a few things that may help his intestinal barrier function, his body to repair those tissues, and the oxydative stress to be controlled. (For the oxidative stress you can add a glutathione supplement taken with a lot of water, because stomach acid would destroy it; also a bit of vitamin C and glycine may help; some other add n acetyl cysteine but it is mucolytic so I would add glutathion instead but not NAC).

Even if it doesn't get him into remission, it will at least do no harm, and very very likely it will improve his condition and symptoms.

Anything you need if you think I can help do not doubt to contact me.

 

[Cucurbita]

One more thing that can help him is Low dose Naltrexone (LDN).

Ask the doctor if he wills to prescribe it.

Usually doctors do not want to prescribe it because it is an off-label use, so if something goes wrong they would not be protected by law. Sometimes they don't even know it or don't trust it. Certainly it doesn't have fancy evidence in Crohn's because there is little desire to research it since it can't be patented, but it has been used in multiple diseases and disorders with minimal side effects, so the security profile is proven.

LDN has a great benefit/risk balance. Side effects usually are minimal and dissapear os their own after some time. I'm not aware it interacts with any other medication for Crohn's. Given the situation, I would look for a prescriber and try it. Dosages usually are 1-4,5 mg per day, but for a kid I would stay in the 2-3 mg range.

 

[Cucurbita]

Regarding the budesonide discussion:

It can help to reduce inflammation in the bowels. Since it is almost not absorbed, the side effects are much reduced compared to a systemic glucocorticosteroid. It is available in delayed formulations so it can help ileum and ascending colon, or it can be used as an enema to cover the distal colon. But I think it can't be used in both locations unless your doctor wishes to do something 'unconventioval'.

The bad thing is that it doesn't do much to induce remission because, just like oral glucocorticosteroids, it doesn't promote mucosal healing. If he finds symptom relief, it is temporary. As soon as he drops the budesonide the inflammation will come back.

So definitely do use if your doctor thinks it will help, it may buy him some more time and relief, but ASAP start doing the other things.

 

[Cucurbita]

Soooo much to unpack here so be patient with me.

First, where is your son's disease located? Is he suffering symptom wise? How bad are his inflammatory markers?

Stelara has better success in the small bowel and Entyvio in the colon. This is not to say that either drug hasn't been successful in other areas but this is generally what they have found. If you have disease in both locations, they typically treat the overriding inflammation and hope for the best with the other. O has been on Entyvio for a year now and is still not in remission. She has both small bowel disease and heavy colonic and rectal disease burden. Stelara could be our next move BUT we can't risk leaving her colon under treated so we would be adding it. I actually have been reading of quite a few docs using this combo with rather good results. Even pediatric docs are using the combo. They are less afraid to combine these two drugs than the anti tnf's because they are more targeted therapies and do not seem to have the immune suppression that the anti tnf's have.

As you probably know we are also facing possible total proctocolectomy with O. We have met with a surgeon. For her it would be permanent but would allow us to remove the "drama queen" and then leave us free to treat the "supporting actor". The important thing to remember is that it is just another treatment option. It doesn't mean anyone failed and actually shouldn't be looked at as a last resort. The importance of timing it right can not be understated. It is actually better to have the surgery before your child gets to a point where it is the only option because in those situations it becomes an emergency surgery OR you have exhausted all med options and even with the surgery your child will need meds and if you have burned through them all you won't have much left.

That said, you do still have options.

Are they talking a permanent ostomy or a temporary diversion to rest the gut for awhile to hopefully regain control of the disease? Temporary diversions are actually a very useful tool for some and they reconnect and are able to manage disease with meds.

Both of my daughter's use Budesonide with very good success. T has disease confined to her TI and O has severe and steroid dependent disease in her colon and rectum and milder disease in her TI.

Both girls have also used EEN with great success. In O's case she was on Remicade and steroid dependent. Her Gi and I decided to try to get the disease under control with a round of EEN. EEN got her into remission and healed enough that then the Remicade could take over for about 3 years.

SCD is also an option. As with any IBD therapy (except the anti tnf) it doesn't have a great success rate (maybe 40%) and is better with the small bowel than the colon but we are trying it now and I am on SCD parents forums and I will tell you that the results are nothing short of amazing. The best way to approach it is doing a round of EEN first and then phasing in SCD. We added it to O's therapy without EEN and rushing through the phases, along with budesonide as a last resort before meeting with the surgeon again. It happens to not be working for O but again her severe disease burden is her colon and we didn't take it slowly. We are meeting with a registered dietician on Friday to review everything.

Another option that is being used quite a bit these days is adding tofacitinib to either Stelara or Entyvio. At first it was mostly just adult GI's using it but now I am reading more and more posts from pediatric GI's that they are adding it with good results. Tofa did get a lot of bad press regarding side effects so it is something you should really research for yourself and discuss with your GI or a second opinion GI but thought I would throw it out there just so you know what is available. The GI's seem to be a lot more comfortable with it these days so maybe they just know more about how to use it. It also seems like a pretty easy add as far as insurance goes because all the GI's are surprised at how easily they get insurance approval.

Lastly, they are finding that if you take at least a one year break from the anti tnf agents that your likelihood of success a second time around is much greater.

We have a meeting with O's GI this Friday so I would be happy to share what pearls of wisdom he shares with us.

I am sorry you are finding yourself this place. O is 20 and is fighting the colectomy tooth and nail so I get it but honestly, I have never met a patient who had the surgery and regretted it. Most of them say it was life changing. O says she doesn't feel "bad enough" to have the surgery but the docs just say that she is so used to feeling like this that she doesn't remember what it is like to feel normal and that after the surgery she will be amazed.

Feel free to PM me if you want.

I don't recommend the Specific Carbohidrate Diet for Crohn's patiens. It is based in principles or theories that do not fully agree with Crohn's disease ethiology, so any improvement is ''coincidence''; it may help some patients since it is based in real food, with no processed food, and it eliminates most food that harms Crohn's sufferers such as grains, and provides some necessary nutrients in digestive ways (collagen soups, etc). But there are better designed diets, easier to commit to, and that have real evidence in clinical essays.

A big problem with SCD is that it limits carbohidrate too much. At the same time, Crohn's patients usually need to limit fat intake. So you end up with a calolic deficient diet.

Another issue is that glucose (mainly obtained from starch in the diet, or from purified sources such as dextrose if using Enteral nutrition) is absotulely necesary to create mucins that our body uses to create mucus, along with other functions. A diet low in carbohydrate impairs mucus production, which is very bad for Crohn's and ulcerative colitis.

Consider instead those diets:
- CDED or Crohn's Disease Exclusion Diet. It is usually combined with EEN but it ioesn't need to in order to be effective
- EEN or Exclusive Enteral Nutrition. CDED achieves the same % of remission, but it's better to keep remission once diet is stopped. And it is easier to commit to and more nutritious. So I always consider CDED before considering EEN, unless the bowel needs extreme rest.
- Paleo diet is very helpful. I don't consider it to be a diet but a group of principles such as basing the diet in a 80% plant foods by volume; exclusion of industrial foods; exclusion of grains and use tubers instead; exclusion of seed based oils; exclusion of legumes unless well prepared, except soy and peanut which are always excluded. But the paleo diet isn't good to induce remission, only may be helpful to maintain remission once it's stablished.

 

[my little penguin]

@Cucurbita
Do you have crohns if so where is your disease located and when were you dx ?
What current treatment are you on ?

kids with ibd are not the same phenotype as adults with ibd
Kids with very early onset ibd are in a class all of their own since the % are so small
So while adults studies on nutrition are great for ibd
Kids need to follow the guidance of the pediatric ibd specialists since most of their situations are unique .

everyone has a different experience with drugs and diet what works for some doesn’t work with others add in ibd kids need more calories than the average growing child and with diet children can well be kids
So you do your best as parents and follow your Gi advice
We are a support area for parents of kids with ibd
Because having a child with ibd is very difficult

 

[crohnsinct]

Curcurbita - you mention you are not a doctor but say, "I suggest this or that". I am curious. Are you a registered dietician with a specialty in digestive disorders? Is your experience coming from studies and research that you have participated in an IBD center?

I am a HUGE fan of registered dietician(s) and feel their voice is often lacking so I am very interested to know if we are lucky enough to have one among us.

This being said, the area of diet as treatment for IBD is still in the infant stage and I don't think anyone really knows enough about the implications of diet on IBD to definitively rule in or out any one diet. Just like some drugs work for some and not others, you can not say this diet works or doesn't.

My daughter for one tried the CDED given our GI is VERY involved in research surrounding diet and was very enthused by the most recent research surfacing around the diet. Alas, it didn't touch her symptoms or disease. He is also very involved in research surrounding the SCD and modified SCD approach. He is well versed in all things micro biome and diet and has the support of a huge dietician department and multiple other pediatric centers also participating in this research. We are VERY deep in our journey with SCD and connected with many other families who have been using it. None of these kids have had a problem with calories and most are gaining weight and doing rather well. My daughter for one has reversed her downward weight trend and as far as mucus goes, well one look in the toilet will tell you that mucus is not a problem for her Some kids are thriving on the diet alone with no meds, normal cal pro, labs, scopes, biospsies and imaging. I don't think that any of them or their GI's would say that their results are coincidence as IBD in children very very rarely goes into a spontaneous remission. Some kids are on meds and SCD and experiencing remission and there I think it does get cloudy as to what caused remission but the kids are doing great so why rock the boat. Others have declared the diet a fail with regards to remission and have decided to just stick with drugs and are still chasing remission. You say Paleo is good but SCD is so close to Paleo.

With the topic of diet, honestly every one of them has what we all would consider pitfalls and items that make no sense. However, there is at the very least antidotal evidence that they work even if for only clinical symptoms. It is not for us to say one is better than another because just like drugs, some work for some and some for others.

You say you don't generally comment on forums and I don't want to scare you away because we do appreciate all options, however, you present things as fact and do not let us know what lens you are approaching things from. Are you a patient who enjoys IBD research? Are these things you have tried? Are you a parent who has tried these things with your own child? etc. It would really help participants here process the information you are presenting if we knew more of where they are coming from.

 

[Cucurbita]

@Cucurbita
Do you have crohns if so where is your disease located and when were you dx ?
What current treatment are you on ?

kids with ibd are not the same phenotype as adults with ibd
Kids with very early onset ibd are in a class all of their own since the % are so small
So while adults studies on nutrition are great for ibd
Kids need to follow the guidance of the pediatric ibd specialists since most of their situations are unique .

everyone has a different experience with drugs and diet what works for some doesn’t work with others add in ibd kids need more calories than the average growing child and with diet children can well be kids
So you do your best as parents and follow your Gi advice
We are a support area for parents of kids with ibd
Because having a child with ibd is very difficult

Hi My little penguin,

I don't see how your arguments invalidate what I said. I think I may be missing the point.

Certainly we don't know what drugs or what diet will work for a child. Neither we do know it for an adult. This argument works for any non trivial disease, so it's not relevant now. We have to try what we know works in most patients in similar situations, and adapt for circunstances. We need to pay attention to the balance between potential benefit and potential iatrogenia especially when therapies start to scarce. Properly applied evidence-based medicine works like this. Under these arguments, I provided my advice.

Regarding what you said about the studies of diet therapy, they are actually mostly done in pediatric population and they seem to work better for them. So it's good news for this kid!

Let me know what you mean if I didn't get it.

 

[crohnsinct]

Well I can only take a stab here.

I don't think MLP was trying to invalidate anything you said as much as explain that your experience is just that, "your experience" and telling a parent to stop using this or not to use that because it is your opinion, experience or what you have read etc could be dangerous when their doctor is telling them otherwise and for a very good reason that you might not be aware of.

Our ped GI's are always saying, "pediatric IBD kids are not just little adults so we can NOT extrapolate findings from adult studies and assume all will work the same for the kids". Neither does pediatric IBD behave the same way an adult course with the disease will behave. My daughter's have on more than one occasion surprised their GI's with the twists and turns that their disease has taken and we have been told numerous times that pediatric disease is tricky. IDK if it is all the hormonal changes in the kids body or the severity of the disease or what.

Kids have special needs that adults don't always have. There are growth concerns and I am not just talking height and weight but also brain development, puberty, bone development etc.

There is a reason drugs are typically approved for adult patients way before we are given the approval to use them in kids.

It is easier for an adult to say they want to use LDN but there are risks to using it and it is a rare pediatric GI who would be willing to use it even if a parent is begging for it. I don't buy the "there is more money in doing it the other way", no pediatric GI that my daughter's have seen have been motivated by dollars and billable procedures etc. As a matter of fact, our current GI does everything he can to avoid scopes, whether I agree or not.

You are right though that there are many similarities and it does help to share our experience with each treatment and to share what we have been told by our physicians but to be cautious about the things we have not personally experienced (i.e.: certain drug therapies, surgery, diets etc).

 

[my little penguin]

I was not trying to invalidate anything you said but to put your experience and advice in perspective for the other posters especially parents of kids with ibd

My questions were simple

1.) were you dx with crohns or are you a parent of a child with crohns ?
2.) if you were dx when and where is your disease located
3.) what meds are you on and what have you tried ?

We all share experiences here but perspective is different depending on the questions above

 

[Cucurbita]

Curcurbita - you mention you are not a doctor but say, "I suggest this or that". I am curious. Are you a registered dietician with a specialty in digestive disorders? Is your experience coming from studies and research that you have participated in an IBD center?

I am a HUGE fan of registered dietician(s) and feel their voice is often lacking so I am very interested to know if we are lucky enough to have one among us.

This being said, the area of diet as treatment for IBD is still in the infant stage and I don't think anyone really knows enough about the implications of diet on IBD to definitively rule in or out any one diet. Just like some drugs work for some and not others, you can not say this diet works or doesn't.

My daughter for one tried the CDED given our GI is VERY involved in research surrounding diet and was very enthused by the most recent research surfacing around the diet. Alas, it didn't touch her symptoms or disease. He is also very involved in research surrounding the SCD and modified SCD approach. He is well versed in all things micro biome and diet and has the support of a huge dietician department and multiple other pediatric centers also participating in this research. We are VERY deep in our journey with SCD and connected with many other families who have been using it. None of these kids have had a problem with calories and most are gaining weight and doing rather well. My daughter for one has reversed her downward weight trend and as far as mucus goes, well one look in the toilet will tell you that mucus is not a problem for her Some kids are thriving on the diet alone with no meds, normal cal pro, labs, scopes, biospsies and imaging. I don't think that any of them or their GI's would say that their results are coincidence as IBD in children very very rarely goes into a spontaneous remission. Some kids are on meds and SCD and experiencing remission and there I think it does get cloudy as to what caused remission but the kids are doing great so why rock the boat. Others have declared the diet a fail with regards to remission and have decided to just stick with drugs and are still chasing remission. You say Paleo is good but SCD is so close to Paleo.

With the topic of diet, honestly every one of them has what we all would consider pitfalls and items that make no sense. However, there is at the very least antidotal evidence that they work even if for only clinical symptoms. It is not for us to say one is better than another because just like drugs, some work for some and some for others.

You say you don't generally comment on forums and I don't want to scare you away because we do appreciate all options, however, you present things as fact and do not let us know what lens you are approaching things from. Are you a patient who enjoys IBD research? Are these things you have tried? Are you a parent who has tried these things with your own child? etc. It would really help participants here process the information you are presenting if we knew more of where they are coming from.

Hi Crohnsisct,

I didn't pretend to rule out SCD. I'm sorry if it seemed like that; I wrote a very long message so I couldn'd explain every point as much as I'd like to. Otherwise you would know that I do consider SCD sometimes, it's among my armamentum, but not now.

Yes, I would include SCD in the list of diets to try, since in has a good historial of helping some conditions and it has some anecdotalevidence in its side. However, given that:

(1) it has several downsides, (I'll explain some later below)

(2) it doesn't have a clinical trial on Crohn's disease showing the remission and clinical response rates, as far as I'm aware,

(3) it wasn't developed for Crohn's disease and certainly it doesn't fully agree with the current knowledge regarding the pathogenesis and ethiology of Crohn's disease, which means that better designed diet for Crohn's has better chances to be more complete to address Crohn's (just as evidence shows)

Now, given that:

(4) we do have a diet developed specifically for Crohn's disease,

(5) which does take into account current body of knowledge,

(6) and has shown about 70-80% remission for Crohn's patients, even for those who failed biologics,

(8) and has fewer drawbacks,

Then it's better to try first CDED than SCD.

Does that mean that SCD is useless? Of course not. But if I have to do a bet for my ill son, I'll try to play chances in my favour. Maybe CDED ends up doing nothing and SCD ends up helping him, but we can't know now, and it's less likely.

Regarding the downsides of SCD:

If the kid has the ileum affected, chances are he's not properly absorbing bilis. Fat is different to carbohydrate and protein in that for its digestion we need bilis more than enzymes. It emulsifies fat and allows its digestion and absorption. If the last part of the ileum is inflammed, bilis isn't absorbed and it reaches the colon. Bilis can irritate the colon and worsen the microbiota composition by shutting down some kep beneficial strains.

So if we can't rely on fat, and dense carbohydrates sources such as grains and tubers are out the diet, we can't assure a proper amount of calories in the diet!

Another issue is that, if bilis is excreted, the bilis pool is diminished. Body will run in cholesterol. It impairs immunity and hormones, since lypoproteins have a role in the immune system, and several hormones need cholesterol, such as testosterone.

One more issue is that, since dietary calcium binds to bilis, it means that calcium won't be available for its absorption in its entire way through the digestive tract. Oxalate instead will be, since calcium won't be available to form insoluble salts with it. Oxalate is very well absorbed in the colon, so in the long run the chancesto develop kidney stones are increased.

So those were several examples explaining why he probably cannot tolerate fat. He may do better in a carbohydrate based diet. Yes, it also has downsides. If his sugar skyrockets it's not good for his health nor his immunity. But we can prevent it by eating cooled and reheated potatoes, and combining them with other food.

Eating enough calories is difficult if you reduce your fat intake to a minimum, but it's possible. Eating enough calories if you can't absorb fat and exclude carbohydrates from your idea is even more difficult.

Another issue is that, if I recall correctly, most foods that SCD encourages are rich in fiber. This isn't good in this situation.

CDED has fiber, but mostly insoluble fiber. Resistant starch RS3 and pectin are among the most important fibers for a Crohn's sufferer in order to help its condition, as long as we know. They are key for good health too.

CDED is low in FODMAP and hypollargenic. It also helps: we don't know if he has SIBO or IgM mediated allergies, first due to bad functioning of ileocecal valve, second due to impaired barrier function leading to permeability of dietary undigested proteins.

With all this I just want to justify, in part, why it's better to try CDED first, or EEN, depending on the kid case.

I'm not a huge fan of CDED just as it is. I would modify it a bit. For example, I would exclude egg whites, but not egg yolks, because they are immunogenic. I wouldn't incorporate wheat or other grains, even if the diet encourages so in the later weeks. I wouldn't include tomato given it produces symptoms in a big proportion of Crohn's patients. And so on. But as a whole, it moy be the better diet we have for the average Crohn's sufferer.

In the end, we have our biases, but as a scientist I truly believe this is the best way to play our cards.

Studies show diet is more effective if the colon, and especially the perianal zone, are not affected. This is the kid's situation. Hopefully diet helps him a lot and soon he can find relief.

 

[Cucurbita]

Well I can only take a stab here.

I don't think MLP was trying to invalidate anything you said as much as explain that your experience is just that, "your experience" and telling a parent to stop using this or not to use that because it is your opinion, experience or what you have read etc could be dangerous when their doctor is telling them otherwise and for a very good reason that you might not be aware of.

Our ped GI's are always saying, "pediatric IBD kids are not just little adults so we can NOT extrapolate findings from adult studies and assume all will work the same for the kids". Neither does pediatric IBD behave the same way an adult course with the disease will behave. My daughter's have on more than one occasion surprised their GI's with the twists and turns that their disease has taken and we have been told numerous times that pediatric disease is tricky. IDK if it is all the hormonal changes in the kids body or the severity of the disease or what.

Kids have special needs that adults don't always have. There are growth concerns and I am not just talking height and weight but also brain development, puberty, bone development etc.

There is a reason drugs are typically approved for adult patients way before we are given the approval to use them in kids.

It is easier for an adult to say they want to use LDN but there are risks to using it and it is a rare pediatric GI who would be willing to use it even if a parent is begging for it. I don't buy the "there is more money in doing it the other way", no pediatric GI that my daughter's have seen have been motivated by dollars and billable procedures etc. As a matter of fact, our current GI does everything he can to avoid scopes, whether I agree or not.

You are right though that there are many similarities and it does help to share our experience with each treatment and to share what we have been told by our physicians but to be cautious about the things we have not personally experienced (i.e.: certain drug therapies, surgery, diets etc).

Hi,

I did take into account those aspects. I don't understand how they apply to the current discussion.

Most diet therapy studies for Crohn's are made in pediatric patients. Results show diet works better for them than for adults, apparently.

Studies for LDN in Crohn's patients have been done mainly in kids. Results were promissing, and side effects were minimal. Then, if you read the rest of the scientific knowledge in other diseases, you may think it's a good option to try.

Please:

Remember this is a 11 years old kid.
He has already exhausted most part of the mainstream therapy.

This means he may have to live 70 years left. We will have more drugs available for Crohn's in the next years, but it is a real possibility that he may needs them at a higher rate than they are developed and become available.

We may find the cure to Crohn's soon. But we don't have certainty.

He has the stomach affected.

You can cut the colon. You can cut a good amount of the small bowel.

But you cannot cut the stomach.

So the odds are that we do more damage if we automatically throw out the available options just because of irrational or irrelevant arguments, as I see this.

The suggested options are not crazy. And those are suggestions. I'm not holding a gun to his head. I just propose he gets medical advice regarding those options or others so he consider to use them as well. So don't be so hard. The diet is hardly risky. Naltrexone in low doses is also very safe and has an enormous benefit-risk potential.

Your doctor may also propose other options, such as using low-dose azathioprine combined with allopurinol. This option and a few more are known by every doctor because they appear in guidelines for Crohn's treatment, so I expect the doctor to use them if he thinks it's appropiate. But this is not the same case for LDN or diet;
doctors don't have a good knowledge of diets (generally) and are not willing to use certain non-mainstream treatments (generally) even if they have chances of helping, may be because they don't know them if they not appear in clinical guides, or they may be afraid of using off-label due to law issues, or whatever reason. If the father wants to help his son the most, he needs to know those options so he can take the best decision. Well, not him himself, of course, but he can ask his doctor about him and get more information to do an educated choice, or find a doctor who is wishing. Otherwise he's limiting his options with no real justification. If it were the son's doctor, and assuming the doctor is competent, I'm sure he would do like this.

 

[Cucurbita]

Well I can only take a stab here.

I don't think MLP was trying to invalidate anything you said as much as explain that your experience is just that, "your experience" and telling a parent to stop using this or not to use that because it is your opinion, experience or what you have read etc could be dangerous when their doctor is telling them otherwise and for a very good reason that you might not be aware of.

Our ped GI's are always saying, "pediatric IBD kids are not just little adults so we can NOT extrapolate findings from adult studies and assume all will work the same for the kids". Neither does pediatric IBD behave the same way an adult course with the disease will behave. My daughter's have on more than one occasion surprised their GI's with the twists and turns that their disease has taken and we have been told numerous times that pediatric disease is tricky. IDK if it is all the hormonal changes in the kids body or the severity of the disease or what.

Kids have special needs that adults don't always have. There are growth concerns and I am not just talking height and weight but also brain development, puberty, bone development etc.

There is a reason drugs are typically approved for adult patients way before we are given the approval to use them in kids.

It is easier for an adult to say they want to use LDN but there are risks to using it and it is a rare pediatric GI who would be willing to use it even if a parent is begging for it. I don't buy the "there is more money in doing it the other way", no pediatric GI that my daughter's have seen have been motivated by dollars and billable procedures etc. As a matter of fact, our current GI does everything he can to avoid scopes, whether I agree or not.

You are right though that there are many similarities and it does help to share our experience with each treatment and to share what we have been told by our physicians but to be cautious about the things we have not personally experienced (i.e.: certain drug therapies, surgery, diets etc).

Thank you, I think I understood now.
I'm not familiar with the forum; you mean this subforum is for parents to find support from other parents, but not the kind of advice regarding treatment, right? If that is the case, I very much apologize. This was my best intention. I didn't pretend to give unsolicited advice, but misinterpret it.

My best desire for this family.

Kind regards

 

[crohnsinct]

In the interest of keeping this thread clean, I am going to drop the subject after this.

But I will say, you don't have to tell me to remember this is an 11 year old child. I have been on this journey with them from the beginning and both of my girls were diagnosed at 11. Further, I was the one who suggested diet options among other drug options to ask about in the first place. Also, I am full aware of the challenge with multiple disease locations as my daughter facing total procto colectomy has disease in her stomach, small intestine and colon. Keep in mind we do not know for sure what area is causing the problems for this child because a scope and imaging have not recently been done.

No one here was throwing out available options.

The LDN studies that you quote, while perhaps done on kids were very, very limited. But still a viable option to throw out there to be asked about at the GI appointment so thanks for mentioning it although not likely that a kid who hasn't responded to a biologic will respond to LDN and we have had numerous kids on here through the years try LDN and have to abandon it.

Diet has been studied and I dare say the docs studying it are pediatric docs so if our docs are suggesting SCD or CDED etc then I think it is worth a try but we really do no service to parents on the forum, following their doctor's advice to say that what they are doing doesn't work.