Crohns ~ questions about meds and wondering if there are other options?

[Charleigh]

My ds is 11. He is very newly diagnosed. He is on prednisone with a plan to begin 6-MP while slowly reducing the prednisone until he is on the 6-MP only. I am a holistic person and I do not like the idea of either of these meds. I am reading and reading about diets and wondering if we can't begin a diet (maybe scd) and then wean off of the prednisone as planned but not go on the 6-MP, but rather stick with the diet first and see if that works? Is this a bad plan? We would be able to tell if he is having a flare up because of diarrhea and we could even go to his ped. and have his SED levels checked? Am I off base here?
I am just learning about this. Any information is welcome as I am a little overwhelmed and a little stressed out.

 

[Farmwife]

Hi and sorry to hear about your son. Such a hard age to have this. Hugs to you also.
We're the same as far a holistic. But if I may put in a word to the wise. IBD can be silent. Meaning damage can be done with NO VISIBLE SIGNS! That's what make this dx so bad. Here you think everything is going along fine than BAM you find out very different.
My Grace is a perfect picture of this. Normal labs but then blood in her stool. So something is wrong! Never go without medical treatment. Yes diet I believe plays a HUGE role. Have you heard of EN ? That shows great promise and can help.
Others will be along to give their answers to.
Just remember everyone speaks from their own experiences. They'll be a great help!

 

[my little penguin]

You can add diet to help and second the EN.
But untreated crohn's can be devasting and deadly.
Most do not die from crohn's any more because they use meds.
You need a gut ( small bowel ) period.
No meds can mean you are risking inflammation and scar tissue .
I highly recommend you discuss with Gi your concerns and your doc can truly tell you how bad it could get for your child without meds.

 

[Jmrogers4]

Sorry to hear about your son, Farmwife is correct it is the silent damage that is being done that is the big danger. SCD diet is hard to stick to and you need to worry about them getting enough nutrition as well while on it as they can be compromised by the Crohn's and already not absorbing all the nutrition from the foods they can eat.
EN or EEN is great for a flare and there are many threads on it here as well as lots of others who will I'm sure be along shortly, but it is my understanding it is not a maintenance drug.
My son was on azathioprine (same class as 6MP) for 3 years and did very well on it and we saw remission. He is currently on LDN which is another option if you can get your GI to prescribe it, we were lucky and did not have the fight/trouble getting it for our son that many people have had. Again there are many threads on here about LDN as well.

 

[Johnnysmom]

My son was diagnosed a year ago at the age of 11 also. I hated the idea of the meds! And they don't give you much time to think it over either. We decided on the Prednisone/6 mp combo. My son's CRP and Sed rate were normal within 6 days of starting the prednisone. The 6mp takes longer but the taper off the prednisone went smooth and he has been in remission since.

Our doctor said that symptoms could be controlled with diet but the disease progression would not change. EN is the exception. It is as effective as Prednisone in inducing remission but once you stop the disease comes back. So a maintenance med is still usually recommended. The EN and Pred both have their advantages and disadvantages. For my son he would not have been able to tolerate EN and he was basically starving himself and I wanted him to learn to eat again. He gained 30 lbs on Prednisone and needed every single pound. We also decided to do the 6mp because it has been used successfully for so many years and we felt the risks were relatively small compared to the risks of untreated crohn's. I also felt that being diagnosed at the age of 11 meant his disease was not going to be mild. And he also had more years of his life left for exposure to inflammation. The worse things get the harder they are to get under control. So if you decide to control with diet and he gets worse, it will be harder to attain remission at that point.

These are not easy decisions. And you will find someone on this forum who has chosen almost every path you can think of. So you have found a good place to learn more. I will say there was a day when I dreaded the 6mp, was heart broken. Now I just pray he can stay on it as long a possible.

Prayers and Hugs to you.

Tiffany

 

[Charleigh]

Thank ya'll so much for your thoughts. I have never heard of EN. I am trying to figure out if that is something that could possibly replace 6-MP?

I can see your point in the inflammation possibly being present without the diarrhea. I will need to really think through this I suppose. It is overwhelming and it is nice to hear from moms who have had to make similar decisions.

Thanks

 

[Sascot]

Hi - welcome to the forum. I understand the difficulties deciding what to do regarding the medications - our doctors want my son on the 6mp, so we are kind of negotiating it since my son has no symptoms apart from a fistula.
My son did the EN (exclusive liquid diet). The minute he was diagnosed our GI said he HAD to go on the Modulen for 8 weeks exclusively. He ended up having it through a nasal-gastric tube as he couldnt' stand the taste. It certainly worked for us and cleared up the tummy pains and allowed us a few months symptoms free. I do agree that Crohn's can really be bad if undertreated and unfortunately there are not many drugs to chose from and all have alot of possible side effects - we can only go with what they have just now and hope they develop something better soon!

 

[Johnnysmom]

EN is living on basically a no solid food diet. It would be like drinking ENSURE to stay alive. You can get the nasal gastric tube and have the formula pumped in while your son is sleeping if he can't stomach drinking the shakes all the time. But it is not something that you can keep up indefinitely. Once you introduce food it stops working. So it is usually used to induce remission (instead of Prednisone) only because 6mp can take 3-4 months to build up enough in his system to induce remission. Most G.I.'s don't want you to wait 3-4 months to treat the disease. Having only nutritional drinks for a sustained period of time comes with its own side effects and problems too. My dad was on Ensure exclusively because of cancer and he experienced some problems.

There are some great new drugs in the pipeline. We also have a friend who is a research Dr. and he said he feels that we will see a cure for this disease in our son's lifetime. So I think you have every reason to be encouraged that throughout your son's life these choices will get easier.

(((((Hugs)))))))

 

[crohnsinct]

Hi there and welcome.

My daughter is one of those who had the disease for they figure two years before the real tell tale signs surfaced (diarhea and bleeding at 12) but by that point the disease had done its damage. Within two weeks of the diarhrea starting she was in the hospital in ICU. So I second that this disease can do its damage pretty silently.

Here is what we have learned from our center. The disease hits kids much harder than adults upon dx. These kids have missed a lot of their growth due to not absorbing their nutrients. Our doc feels it is of the utmost importance to hit the disease hard and maximize the children's growth potential and puberty as possible. Because this window of opportunity is only a few years you really don't have a lot of time to play around. Also, he says the quicker you can get a child into remission the less likely they are to require surgery down the road.

I also always like to take a holistic approach as well. Because of the severity of her disease and the need to attack things quickly (and my inability to do my extensive mommy research in icu) our daughter was put on Remicade right away. Remicade didn't get her all the way to remission. Our doc wanted to add Methotrexate. We opted to add EEN instead. Our daughter drank 6 shakes a day for 6 weeks and did fantastically well. She remains on Remicade as a maintenance med. EEN is just as successful as prednisone at achieving remission and even better at mucosal healing. Our plan is to hit future flares with another course of EEN rather than prednisone. EEN does not maintain remission. Most people will have a period of remission and then a flare will occur. This could happen right away or take 3 months, 6 months or maybe even a year...so they hop on and off EN but it is hard to know how long your child would stay in remission. So for that reason if you decided to go with EEN alone I would suggest regular bloods so you are aware as soon as inflammation starts and could decide with your doc whether to do another round of EEN or if it was time for to add a maintenance med.

Whichever way you go, I think EEN is definitely worth a shot over the prednisone and while you wait for the 6MP to reach therapeutic levels. Oh yeah another huge plus with EN is the easily absorbable nutrients and the growth!

As for the diet, our doc and nutritionist are pretty adament that diet alone only treats symptoms and does not have an effect on disease and that follow up imaging confirms that with diet alone inflammation still persists.

Good luck...these decisions are never easy.

 

[DustyKat]

Hi Charleigh and :welcome:

I am so very sorry to hear about your boy...:hug:

You have been given fabulous advice about medication and EEN.

As has been said EEN is as successful as Prednisone at inducing remission, particularly in children and that is the key point...getting your boy into remission as quickly as possible and then keeping him there.

I do believe that diet does play a role in the alleviation of symptoms when flaring and in helping maintain remission once it is attained. The maintenance medications used for IBD play a different role again, their role is immune modulation, so they are changing the immune system by suppressing its response to inflammation/infection since as you would know IBD is considered by many to be caused by an over active immune system.

It surely is a difficult place you find yourself in and one that most of here are or have trodden. I fully understand your drive and desire to have your son avoid these medications and what path you eventually choose will no doubt be made with much soul searching, fear and hope. Regardless of what you choose you must remain vigilant in ensuring that your son stays on the path of clinical remission. Don't depend on physical symptoms alone but ensure that regular monitoring is followed through with.

Both of my children have had surgery and are taking Imuran as a maintenance medication. I neither like it nor want it for them but I have seen what Crohn's left to its own devices can do and I never wish to see that again. Perhaps how I gain some sort of solace from them taking this medication each day is look upon it as any other medication a child needs to take in order to survive. If my child was an asthmatic they would no doubt be using a preventative inhaler daily or twice daily in an attempt to curtail acute attacks and the need for Ventolin. Or perhaps if they were a diabetic and needed insulin to be injected 4 times a day. These two conditions are chronic and incurable just as Crohn's is.

I suggest you read, read and read some more and then question, question, question anyone and everyone. Good luck hun, these decisions are never easy but for now focus on getting your boy into remission and then you can buy yourself some time to mull things over.

Dusty. xxx

 

[Charleigh]

Thank you all so much for your help and your support. I have researched and thought on this and have decided to try the less conventional route first. I know there are risks, but there are risks regardless (I have seen the pages of side effects and reaction risks on the meds). I want to try the diet as described in Breaking the Vicious Cycle (SCD). I will work closely with my pediatrician and have him check E's inflammatory markers and stool often. I will do this cautiously, but I need to see if this can be done or it will haunt me. We have a passion for Holistic Nutrition. If anyone can stick to it, we can. We stopped prednisone after some really bad reactions. He has been on no meds and on the SCD diet for about a week and he is doing good. I am not saying this is the answer (way too soon for that), I am simply saying that I have weighed the risks and I find it worth a try.
Thanks again for all of your thoughts on this, it means so much.

 

[my little penguin]

If your going natural please make sure a pediatric Gi is following him at least.
Peds are good for many things ear infections strep throat.
Ibd is not one of them.

 

[Farmwife]

I completely understand.:wink: I hope it works and please let us know how it's going!
I also second mlp on a pead. GI being involve.
But whatever or however this goes, we all know you will always have your daughter's best interest at heart!:heart:

 

[kimmidwife]

Hope it goes well! Keeping our fingers crossed for you guys! As some of the others said look into enteral nutrtion and low dose naltrexone or LDN. It is a very safe medication that has worked really well for some people. Look at it under the treatments section.

 

[araceli]

My ds is 11. He is very newly diagnosed. He is on prednisone with a plan to begin 6-MP while slowly reducing the prednisone until he is on the 6-MP only. I am a holistic person and I do not like the idea of either of these meds. I am reading and reading about diets and wondering if we can't begin a diet (maybe scd) and then wean off of the prednisone as planned but not go on the 6-MP, but rather stick with the diet first and see if that works? Is this a bad plan? We would be able to tell if he is having a flare up because of diarrhea and we could even go to his ped. and have his SED levels checked? Am I off base here?
I am just learning about this. Any information is welcome as I am a little overwhelmed and a little stressed out.

I understand how you feel.
In my experience with my daughter, I can tell you Crohn's can be silent. She was off prednisone for 10 months. Only minimum dose of asacol and doing great. At least I thought. Meantime Crohns was doing damage in perianal area. It was a shock for us. since she does not have most of the things you expect. No blood, Not a lot of D. and no pain at all. Hope the best for you and you little one. Did not mean to stress you more.

 

[Patricia56]

Hi Charleigh -

I'm late to the party but I really understand where you are coming from. We followed almost that exact same course when my son was diagnosed at age 10 so I am certainly not going to criticize or suggest you are making a poor choice. Every family must make the choices that fit their values and understanding of the choices.

What I will say is that I strongly recommend that you NOT rely on your pediatrician to monitor your son's condition and advise or prescribe treatments for your son's IBD. Your pediatrician simply does not have the training necessary to do so.

Pediatric GI's have at least 8 years of training beyond medical school. Pediatric GI's who specialize in treating IBD (the ideal choice) have at least another 2 years of training beyond that. There is no substitute for those years of training and experience.

Your son's life may quite literally be in this person's hands at some point in the future. When deciding who you will choose to treat your child's IBD this is an important consideration regardless of your choice of treatment. The sad fact is that our kids can have emergencies with little or no warning.

Your pediatrician will not be the one to treat him or oversee his care in the hospital should he need emergency surgery or other treatment. The GI will. If you do not choose one now - one will be chosen FOR you at the time of the emergency and it may even be an adult GI. I know that is not what I would want to be dealing with during an emergency. I would want a doctor who I knew, who knew me and my child, who I knew I could trust professionally and in terms of respecting my wishes.

So I strongly urge you to seek out a pediatric GI doctor that you can work with, one who will accept (support is probably too much to expect) your choice to avoid all medications and seek dietary solutions. You don't list your location so I can't make any suggestions or appreciate whether this might be an impossible task because you live in NM or ND where there's only 1 or 2 ped GI's in the whole state.

I will tell you that we travel 200 miles round trip to see the IBD ped GI doctor. We could go to one that's 20 minutes away but I fired them along with the one before that because I didn't trust their medical skills or they refused to listen to me.

The diet route is tough to stick to especially as the kids get a little older and develop a mind of their own. And what others have said echoes our experience, diet is not enough. But I totally get that you have to try.

So best wishes. I hope you will continue to post to the board. There are others like you here, just none happened to reply. And I will always do my best to be supportive. You might also check the adult boards for support around the SCD.

 

[Charleigh]

I apologize that I didn't make it more clear. We have a great pediatric GI who is well versed in Crohn's disease. He is the one who has seen and diagnosed my son. He doesn't agree with a diet only route. We are supposed to be on prednisone right now and in the process of completing some testing to start 6-MP. I am simply avoiding the test. I plan for my son to see him a month or two after I see how the diet is going. I would like for him to pull some labs and stool tests and see if we can get him to accept the diet route, even if he doesn't love it. This is our plan as long as the diet seems to be working. Of course, if we aren't seeing progress with the diet then we will see him sooner. If the diet isn't working or if it appears to be working but the lab tests don't agree then I would like to ask him about LDN or other options. I am just not loving the side effects list for 6-MP. Just my personal feelings.

Hope this makes more sense,
Char

Hi Charleigh -

I'm late to the party but I really understand where you are coming from. We followed almost that exact same course when my son was diagnosed at age 10 so I am certainly not going to criticize or suggest you are making a poor choice. Every family must make the choices that fit their values and understanding of the choices.

What I will say is that I strongly recommend that you NOT rely on your pediatrician to monitor your son's condition and advise or prescribe treatments for your son's IBD. Your pediatrician simply does not have the training necessary to do so.

Pediatric GI's have at least 8 years of training beyond medical school. Pediatric GI's who specialize in treating IBD (the ideal choice) have at least another 2 years of training beyond that. There is no substitute for those years of training and experience.

Your son's life may quite literally be in this person's hands at some point in the future. When deciding who you will choose to treat your child's IBD this is an important consideration regardless of your choice of treatment. The sad fact is that our kids can have emergencies with little or no warning.

Your pediatrician will not be the one to treat him or oversee his care in the hospital should he need emergency surgery or other treatment. The GI will. If you do not choose one now - one will be chosen FOR you at the time of the emergency and it may even be an adult GI. I know that is not what I would want to be dealing with during an emergency. I would want a doctor who I knew, who knew me and my child, who I knew I could trust professionally and in terms of respecting my wishes.

So I strongly urge you to seek out a pediatric GI doctor that you can work with, one who will accept (support is probably too much to expect) your choice to avoid all medications and seek dietary solutions. You don't list your location so I can't make any suggestions or appreciate whether this might be an impossible task because you live in NM or ND where there's only 1 or 2 ped GI's in the whole state.

I will tell you that we travel 200 miles round trip to see the IBD ped GI doctor. We could go to one that's 20 minutes away but I fired them along with the one before that because I didn't trust their medical skills or they refused to listen to me.

The diet route is tough to stick to especially as the kids get a little older and develop a mind of their own. And what others have said echoes our experience, diet is not enough. But I totally get that you have to try.

So best wishes. I hope you will continue to post to the board. There are others like you here, just none happened to reply. And I will always do my best to be supportive. You might also check the adult boards for support around the SCD.

 

[Jmrogers4]

Best of Luck with the SCD, I understand where you are coming from, we tried the SCD, Paleo and couldn't stick with them but that is just us. I hope it works for your daughter. As kimmidwife says if you need additional treatment LDN is an option, it has made a remarkable difference in my son so far although we are just starting our 6th month now. I know others on here whose children have been on it much longer.
Please keep posting and let us know how she/You is/are doing.

 

[Patricia56]

If your GI is actively opposed to your choices then you might want to look for a different GI. Now when your son is not in crisis is a good time to do that.

If there is friction now will there be on going friction over treatment or other choices in the future? This is a long term relationship that will last at least 7 years and more likely 10+ as many ped GI's continue to see their patients well into their 20's.

I know our ped GI (head of a major ped IBD program) wasn't happy when we were considering declining to use medication. (unless we were doing EN which he is glad to support.) But he wasn't actively opposed to it in any obvious way. He asked what he could do to help and requested that we do frequent labs to monitor things. He did eventually get around to the dire warnings about emergency surgery and the need for prednisone, etc. but he delivered that information in a calm, philosophical way that conveyed his respect for our right to make the decision along with his disagreement based on experience.

That is what I call a great ped GI.

The doc you have now may be a great ped GI for most of the families he sees. The question is whether he is a great ped GI for YOUR family.

In a perfect world that's what you and your son deserve, in my humble opinion.

 

[kimmidwife]

I have to agree with Patricia, Make sure your Ped GI is willing to listen and go along with your plan. It is your child after all. We have been through several GI's until we found one we liked who was willing to work with us. we all know what you are going through. The list of side effects or possible side effects for these drugs is very frightening. THank G-d they are rare. We had the luck of Caitlyn being severely allergic to Imuran (a form of 6MP) and so once we finally agreed to it after much debate it was a no go anyway. The same with remicade she ended up being allergic as well.
LDN for us has worked well. We will find out for sure tomorrow after Caitlyns colonoscopy how well it is really working and if she is hopefully finally in remission! We are praying and keeping our fingers crossed!

 

[Farmwife]

Good point.
Maybe you could call around to different GI's and ask the GI nurses on how their GI's feel about what your trying to do.

 

[Sascot]

I can understand why you don't want to give the 6mp. I have been avoiding it for the last 6 months for my son!! The poor GI always looks really put out when I say no "again". :ysmile:

 

[kimmidwife]

Sascot,
I know what you mean! I get the same looks but am sticking to my guns and doing what I feel is best for my daughter. Stay strong!

 

[muppet]

You could ask the doc about trying ASA drugs. They're off-label for Crohn's these days, but help some sufferers (like me). The risk is Crohn's can be a quiet disease and do a good amount of damage without your realizing it. You really have to be careful and very vigilant of symptoms. Take temperature regularly, regular weighings, possibly visual stool checks, etc. Young kids with chronic illnesses especially can mask symptoms.

I get a pretty good result from Lialda. It's a bit less scary than 6MP.

 

[Tesscorm]

Hi Charleigh,

I'm a bit late here but just wanted to offer our experience...

My son (16, then) was diagnosed in May 2011, he was put on exclusive EN for six weeks. This took him into remission. Since then, his only treatment has been supplemental EN (1/2 dose, 5 nights per week thru NG tube plus a regular diet). (We did not follow any special diet.) While this has kept him in 'clinical' remission, MREs do show some continued inflammation.

I believe the continued inflammation may have caused some damage (only my interpretation of the latest MRE results) and we are now considering what medication to try. My heart will also break at having to begin giving him these meds, however, I am afraid of allowing inflammation to cause greater damage. I am hoping we can try LDN.

If I could go back???, if I knew then what I know now... I would use the exclusive and maintenance EN to a greater benefit... I wish I had pushed (even if it meant moving to another GI) for LDN or 5-asa meds to 'try' them at a sooner date rather than now when, perhaps, the stakes are higher. At the time, our ped GI didn't have faith in either the LDN or 5-asa meds and preferred to keep him on maintenance EN only (with the possibility of metho if results showed the need). I wish I'd kept the EN but ADDED one of the other meds.

I completely understand your reluctance at moving to stronger meds and am, in no way, trying to convince you otherwise but, I would do some research and maybe consider trying some of the safer meds in combination with the diet. :ghug:

 

[Charleigh]

Thinking about asking for a trial of ENT. Does anyone know if it is dairy free? E cannot handle any amount of dairy.


I think I may have meant to say EN ~ there is not "t" right? Sorry, I am new to all of this.

 

[Patricia56]

There are many different enteral nutrition formulas. Do you know if he is sensitive/allergic to lactose or to milk protein itself? It only matters to the extent that you are more limited in choice of formula if he is allergic to milk protein as many formulas use a whey base.

But there are some that do not for just that reason.

Typically your ped GI would prescribe enteral nutrition, either exclusive or partial, and hopefully refer you to a dietician with experience in this area. Most health insurance plans in the US will only cover enteral nutrition if is exclusive and some will only cover it if it is given by NG tube/pump.

 

[Tesscorm]

As Stephen has never had a problem with dairy, I've never looked into it... but, someone else may know...

The link below will take you to a thread which lists some brands of EN (however, there are more brands available, ie my son's brand is not on that list - Nestle Tolerex) - you should be able to find nutritional info on the brands.

http://www.crohnsforum.com/showthread.php?t=23607