Supposed to start MTX injections but I think I will refuse

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LJS

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Feb 26, 2013
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Based on all I have read (a lot, in part, on these boards), I wrote my son's ped GI and told him that I won't do MTX injections. Overall, son has VERY few crohns symptoms outwardly (stomach aches every now and then with throwing up). He does have inflammation and no growth so we are doing EN. He's on Azathioprine and Allopurinol. I've been wanting him off the aza b/c of the lymphoma risks...but the more I read about MTX, the less likely I am to do it..I'm afraid that it will actually make him worse!!

I emailed doc back and said I really am not comfortable with switching him.. not sure what he will say but after hearing about all these crappy side effects, why would I put my son on a medicine that will actually GIVE him symptoms he has never had???

aahh!
 
No growth is our son's Biggest Symptom. Its often ignored...by myself at one point. But We're doing everything we can to get him in remission so he'll grow. Just a thought.
We just added MTX...but pill form. I've noticed NO side effects. I expected fatigue, nausea, etc. He doesn't act any different. But after his 3rd week his stools started looking more normal and smell normal. Less cramps. I'm hoping his labs look good at next visit because I think its helping the Humira work for him. After that, "C'mon Growth!!"

Just Info...I'm not preaching to you at all :) I'm a firm believer that we all know our kids the best and sometimes know what's best for them despite the doctors instructions.

I'm with you in the fears too
 
Totally understand about the fears with every drug our kids have to face! That being said, my son is on methotrexate injections. He has some side effects, but he lives a pretty normal teen life in spite of it all. It's hard to know if it's the right thing to do, but if it weren't that it would be another medication and I know we can't get rid of the inflammation without something. I just have to pray that it will all be okay. I hope your GI will work with you to keep him feeling well!
 
LJS, the EN can help to get your son into remission, then maybe by then the AZA can kick in. How long has he been on it?
 
Our doctors first recommendation was Methotrexate as well. Our son was 3 and i didn't want to do it either. His Crohn's is pretty severe but they were ok with us trying exclusive EEN for 12 weeks. It put him into remission however when we pulled his NG tube out all his symptoms came back. We decided to get him a G tube which will then be switched to a MIC-Key button and put him back onto EEN(only clear liquids) All of his symtpoms went away again within a few days. We will keep him on EN even if we decide to re introduce foods. He has gained 8 lbs while on it and feels great, all bloodwork is wonderful too. If needed we will try LDN before we do the other drugs as the side effects also scare us immensely. Good Luck :ghug:
 
Carol,

My son has been on Aza for about 2 years now...and I am worried about the lymphoma connection.

My thought here is: should the cure be worse than the disease? My son has VERY few crohns symptoms - ever! Stomach aches and fever and throwing up when he's in a flare, otherwise symptom free!! I realize that chronic inflammation is terrible AND his not growing is a major problem.. hence the EN.. even though it's not exclusive. The docs at our Children's Hospital do not believe in EEN, as they don't feel that the kids will be compliant and that eating is very much a part of a kid's day to day life (agreed). They feel that the benefits of EN are as good doing it at night as doing it exclusively.

So, my concerns (amongst others) are: do I put my son on MTX and risk him getting all sorts of side effects/symptoms that he has never had, in the hopes it brings him to a clinical remission (along with EN), or do I stay on Aza alongside the EN, see what happens with his labs in a month or so and then???

LDN: My ped GI called it a "fad" and said there are no studies proving its efficacy...anyone have anything to contradict that? He won't even consider it!!!
 
We will keep him on EN even if we decide to re introduce foods.
Click to expand...

This was the maintenance treatment we were initially given... maintenance EN with a regular diet after the exclusive period. My son did this from July 2011 to Feb 2013, when he started remicade. EEN initially took away all his symptoms and 'some' of the inflammation, there continued to be inflammation in his TI during this time period and, upon transfer to his new/adult GI, his recommendation was that the inflammation needed to be treated before damage was done. While I'm not happy about the remicade, the EN did give my son almost two years without meds and the best nutrition he'd ever had (picky eater :ybatty:). We're gradually reducing the amount of his EN now and I'm hoping when he leaves for university, he will continue with it in the form of Boost shakes (rather than the current formula and NG tube).

I absolutely think EN is worth trying, however, please remember the meds, even with their side effects, can help eliminate the side effects of under treated crohns. :ghug:

I also would encourage trying LDN when/if you have a chance... I wish I had pushed for it more during my son's EN-only period, by the time we transferred GIs, this GI was adamant that it was too risky to wait??? Maybe???, who knows??? :ymad: but I do regret not trying it earlier.
 
We are absolutely continuing with EN... it's not been 3 weeks yet and he's just getting up to "therapeutic" levels, as we've had some pump issues,etc.. I have NO intention of stopping the EN.

My issue is, while he's doing EN and Aza (and allopurinol), do we switch the meds to MTX as GI wants, or just wait.. we do have to heal his inflammation but I think it's way too early to go to MTX...

I need to know more about LDN, as my doc won't even consider it!
 
the chance of lymphoma for aza is especially in long-term combination with infliximab or humira

aza has been studied for years because hundreds of thousands of people use it who get an organ transplant, and the most common cancer for aza is actually skin cancer, because of the way cells under aza react when exposed to sun

If I would be apprehensive of something it would be more MTX, since it's an interleukin blocker, interleukin are proteins given off by white blood cells, and they have no clue what most are doing at all. I know that in 10 years from now, they will say "MTX has side effect a,b,c,d,e,f,g,h etc, because we had no clue that interleukin X was involved in pathway Y"

Interleukin are signaling proteins, they tell other cells stuff, to raise or lower inflammation, to recruit other white blood cells, to increase or decrease body temperature, to start healing, to induce fever, etc etc. They have thousands of functions, but what they're all actually are is anyone's guess.
 
I have Crohn's and I am almost certain my 7 year old has it in the works, just with things that been going on. I was that stubborn person that from 2004 to 2009 refused to get tests done or start medication simple because of fear and some of doctors not knowing exactly what was going on. Now here in 2013 I realize by ignoring this disease and not treating it to the fullest power of medication available I have actually made the situation worse. I know have massive amounts of Scar tissue the surgeon wants me to have 3 resections, 2 fistulas removed and part of my colon gone. From everything I have been told if I would have treated crohns properly and went into remission I would not have nearly this much damage. I had some bouts of remission which lead me to believe I could defeat it without medicine and boy was I wrong. Today I still haven't had the surgies out of fear and have no plan to.

With all that mumbo jumbo my opinion is get the disease in remission, if it goes in remission stop there don't add stuff unless necesary. If doctor is telling you hey there is inflammation and it's causing damage listen to what he has to say, ask a lot of questions and make a informed decision. Just be mindful scar tissue doesn't go away without surgery and get worse with time as it shrinks.
 
Amry,

thanks.. but I'm NOT ignoring inflammation, just trying to figure out the best treatment for my son's inflammation, without causing him to get sicker... or take a relatively "well" kid and make him extremely sick (symptomatically) through meds!! The idea of medicine making him feel horrible, when he doesn't have ANY symptoms now, just doesn't sit well with me!
 
I know this is not going to be a popular opinion but here goes....

I think way too few people listen to the GI's advice. I have read many posts on this forum that completely ignore advice from a GI. These Dr.'s have been watching kids with this disease for many years and watching parents make all sorts of decisions and they have seen the outcomes. I do not believe they would lightly recommend these medications.

I would also say that for your child to not be growing is a huge symptom. And it is only a matter of time before things get worse. It may take years but if he has enough inflammation to stop him from growing, it will take it's toll at some point. My son stopped growing as well and had no vomiting but I can tell you that now that he is in remission there is a huge difference in how he feels and he is growing and gaining weight. It was clear to me that I did not fully realize how sick he was because he was going to school and doing fine.

Also, anyone diagnosed as a child is not likely to have a mild disease course. I am not disagreeing with your decision on not doing the MTX but I think that if you feel that because he has no symptoms he doesn't need to be treated you may be making a very big mistake.

Also, you can try MTX and if it truly does have side effects for your son, then discontinue it and give something else a try.

I can only say, I know the heartbreak of this disease and how hard it is to make these decisions. (((((Hugs))))))
 
Sorry, but mom of Johnny, why are you assuming I've taken the position that if there are no overt symptoms my son doesn't need to be treated??? That couldn't be further from the truth! He is doing Aza, allopurinol and EN ... at MY suggestion over the doctor's suggestion we do Remicade or Humira.. and guess what? After I suggested it, he brought it up to the "team" at children's and they ALL agreed EN is a better choice than a biologic, at this time. So for me to take a stand, and NOT switch to MTX and stay on Aza, while doing EN, clearly is not burying my head in the sand! I am fully cognizant of the fact that at some point in his life this disease will rear it's very ugly head.. but why should I subject my son to the side-effects of MTX when I don't have to? I cannot see causing him pain and discomfort when he has none now..
 
LJS-Although everyone has their own opinions on what they think will be best, you are his mother and should ultimately get to make the decision. We are all trying to do our best and judging others on how they choose to treat their children isn't right. I am sure if one of their children ended up getting a cancer(god forbid) from a medication or passing away from an infection they might sing a different tune. I also have Crohn's and have for 16 years. I just recenlty switched doctors because my previous one didn't want to listen to me. My new doctor was very honest with me and said that he is sorry that the medication choices they have for our disease suck but it is the best they can do for now. Everyone's case is different and the treatments that work for some might not work for others. You could follow a doctors advice to a T and still not find something that works to get your child in remission. I don't see the harm in researching and at least questioning the doctors to then make the decision you feel is best for your son. I know we all love our children more than anything and would move heaven and earth to help them. Please know you are a good parent and don't let others comments get you down. With this horrible disease there truly is no right answer for everyone. Good Luck :ghug:
 
I have been on Methotrexate and I would choose that over any other medicine I've been on. I actually refused Imuran because of the side effects and will never go on it.

As you can see here were all different.
 
thanks all, including Johnnsymom, for your thoughts. I am sure I was unjustifiably sensitive, but please know, I've been dealing with this disease for 4 years so far (I know, a drop in the bucket compared to many of you), and I'm very informed and involved. At no point would I consider having my son go without treatment just because he "appears" to be in a symptomatic remission. Questioning the treatment options for our children is not only our right as parent - but our obligation. And too true, everyone will react differently to treatment.. what works on one will not work (or work differently) on another. I'm simply trying to figure out what is the best treatment for MY son right now.. evaluating current symptoms and inflammation against all possible therapies and weighing pros/cons to determine what is (hopefully) the best course for us, at this time..

It's so very hard and such a huge responsibility..and I truly appreciate ALL viewpoints! :)
 
Although it's not favored on this forum, if your son is in fact symptom free you certainly can treat/remain the same without meds at all. There are a few of us on here who treat with diet and are doing well
 
It is truly different for all of us and we all take different paths to reach the goal of remission. As I said in another thread each of us bring our own fears, anxieties and experience into treatment choices. There are valid reasons for some of our fears and others can be just what we are personally comfortable with. I was much more comfortable with MTX and Remicade than the thioprines...no justifiable reason other than some of the posts on here really made me anxious. By that same token, both of Dusty's kids are on AZA/imuran and doing fantastic. It is different for each of us.

I do agree if having been on AZA for two years hasn't brought about growth then it may be time to look to other meds. If you feel comfortable with trying LDN or another med then it is your decision to make. But I think more important than your choice of med/diet/alt treatment is vigilant testing to ensure your choice is doing its job. I believe in more than just lab work as my son's severity doesn't show in his lab work so fecal calprotectin is also done. If a med isn't doing its job kick it to the curb and move on.

Good luck I hope your son finds remission soon!
 
EthanClark said:
LJS- I am sure if one of their children ended up getting a cancer(god forbid) from a medication or passing away from an infection they might sing a different tune.

I am not sure if this was directed towards me and my child but I find no reason to say such a thing and I think it's cruel.
Click to expand...
 
Johnnysmom.. I don't think that comment was directed at you or your child.. I think, actually, it was directed at "me", in that I thnk the comment was more along the lines of we try everything we can for our kids, we need to weigh the pros and cons of all treatment.. and while we/I may consider the risk of getting lymphoma to be negligible and take that risk in order to not take the risk of the downside of MTX, if (god forbid) something happened to my child, I'd be devastated.. I know I'm not stating this correctly.. but the bottom lne is that we ALL do what we think is right for our kids. We weigh all the risks carefully and make the best decision we (hopefully) can for our kids. We worry at the same time that the risks will come true and outweigh the benefits, but without a crystal ball, we never know if we are doing the right thing..
 
Ljs
The decisions are tough
Side effects are potentially there - some get them some do not
Some meds work - some do not
With Ibd there is no "right" way. Just what works for your child.
I "think " the point Johnny's mom was trying to make is that
your current treatment plan is still leaving your child with inflammation
-hence the not growing /vomiting/stomachaches.
What was not clear from your post was whether
Your Gi was "ok" with these symptoms - leaving the imflammation
Under treated in a sense ( every Gi is different some are ok some not-it depends )
And was purely switching meds for the lymphoma risk
OR was switching meds due to the inflammation.
If its due to the risk - I am with you.
If it was to try and get the inflammation under control
In order to "try" ( since that is all any of us can do) to get the
Inflammation under control
Then I would suggest you talk to your Gi about
All the options since you are not comfortable with Mtx .

I can say Mtx did not work for my son.
But others I know it worked miracles with no side effects to date.

For us remicade was the miracle.
DS was not that bad BUT growth had stopped
He had vomiting and stomach aches .
On remicade that all changed he grew gained wait
And is close to normal .

I wish you and your child the best
These decisions are hard and the meds are horrid
Having a child in remission and growing makes them look
"Like baskets of kittens " - to quote izzismom
When they work it is the best feeling.
I truly hope your child can get there
And you and your Gi team can work out a good
( as in works / gets your child to grow) plan.

Hugs
 
I feel like I should clarify what I meant because I truly did not intend to upset anyone. I knew my point of view may be unpopular but I don't believe I ever personally attacked anyone's parenting or care of their child.

I was afraid that the choice not to try MTX was based on posts on this website about side effects others had experienced. It is very true that some will experience those side effects but most will not and I do not believe that any GI would want your son to stay on a medication if the side effects made him sick. I had the same fears when my son started 6mp. I was scared to death, but now that he is healthy and symptom free with no side effects I am so glad we decided to give it a try. When you find that one drug that works, it can really change your perspective on medications in general. I would hate to see anyone overlook a potentially life changing med the way we almost did.

I also never accused you of not treating your son or putting your head in the sand. Those words were never a part of my post.

I was afraid that you might be under treating the disease and not addressing low levels of inflammation. I think GI's find this acceptable when they have run through most medication options and they feel low level inflammation is "acceptable" because they have no other steps to proceed to. But if you still have other options to try with no inflammation possible it is worth giving it a shot in my opinion because I thought my son was doing well, but when they are in complete remission the difference is huge. I think the same is true somewhat for LDN. I think some GI's will say 'lets try it' because they have exhausted other options and it is worth giving it a try. But, if there are still proven options yet to be tried it would be more difficult for a GI to give it the ok. Your original post did not really convey your next steps, so I really had no way to know what you planned to do but I was offering my opinion on what I would do.

So I am not opposed to any solution but I think there is a best practice as to how these drugs are tried and I think a lot of parents argue with there GI's about the process. Which is totally their right and obligation, but I think way to many people dismiss their GI's suggestions. I don't think any of us should just blindly follow what our GI's suggest but we need to make sure our reasons for going against their recommendations are sound and not out of fear or emotional denial about the severity of the situation. These things were true for me when my son was diagnosed. I don't know if they are true for you or not, but it doesn't make anyone a bad parent and I think it is somewhat normal. (just my opinion)

I do agree there is no one solution for every child, I also believe the parents have the right to do whatever they feel is best and trust me I know the agony of that decision. My aim when I post is to try to give some food for thought, because I think information makes us all make better decisions for our kids. Once parents have all the information they can make the best decision. People put their personal decision making out there so others can possibly learn from their situation, because only you know whether it may apply to your son's case.

This is such a hard thing to discuss, because we are all so emotional about our dear children and this crappy disease is so confusing and difficult. But I hope we can continue to discuss things open and honestly.:Karl::Karl::Karl:
 
LJS, Our GI also won't hear of LDN currently. That being said, our son's crohns was mild way back when he was 6. His size was his main symptom. By the time he was 10 things were much much different. We sped thru all the mild drugs in 8 months.(all except LDN-they were in hurry to get things under control) His crohn's has moved to moderate-severe and biologics are the only thing that works for him :(...now those aren't working alone. If your son's crohn's is mild right now...I'd push for LDN. I wish I'd have had time to try that first. Too late for us now. I think "Use mild drugs when disease is mild"...or since he's so young, just do the EN since that puts him in remission. That sounds really safe. When they get older its harder to take away food, I think.

I just hate all the cancer talk. Anyone can get cancer! A boy at our church just died of brain cancer and he was on ZERO medications. He was an athelete and had no health issues. So No One Knows The Future.......We all just do what we think is best and then just PRAY PRAY PRAY!!!

Good luck in your decisions :)
 
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I will talk to my GI next week...I want him to look into LDN. We will continue with EN.. we are aggressively trying to both eliminate inflammation AND spur growth..whether I do MTX or stay with aza remains to be seen yet..

Brian's mom..wow! Scary.. I am worried about the day when son's disease goes from zero to ??? which is why I want to get his inflamation under control NOW.. but what I don't want to do is use up all our options before they are really needed...does that make sense?

Johnnysmom.. I so hear everything you are saying and agree..as parents, we just want the very best for our kids and for them not to ever be in pain..unfortunately this disease is just so unpredictable (and horrible).. i know it tears us all up inside having to watch our kids go through this.. and knowing this is just the beginning.. that this is a lifetime thing..

Thanks everyone.. and I apologize if I took anything the wrong way!
 
I wouldn't say we're at ??? just yet. They're coming up with new stuff too. And different ways to tweak the meds. My son's crohns is now mild since we're on biologics. Very rarely has stomach/intestine pains, and if he does its nothing like before biologics. So I'm thankful some scientist came up with them. Just has been fighting some inflammation (mild flare) since Sept that needs to get under control (hence the new meds in addition) Now I just PRAY all will be ok. I keep telling myself, the chances of getting into a bad car wreck is much much higher than cancer being caused by these meds...and I still put my son in a car several times a day. Also, If I do everything to keep his intestines in good shape, when the cure comes he'll still have every inch of them. :) :) PS- Chronic inflammation can cause cancer too, can't it?
Lastly...I hate crohns disease!!!
 
LJS said:
Thanks everyone.. and I apologize if I took anything the wrong way!
Click to expand...



LJS

EVERYBODY on this forum understands! :ghug:

We ALL hate what our kids have to face.:ymad:
We ALL face the hard choices. :ymad:
We will all do are best to make the right choices because we have no choice
and the love of our kids out weighs the fear we as parents have about these medications.
Your doing a great job. Hang in there!
 

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