Question about whether to treat

[curlyqsmom]

Hi,
I am in a bit of a hurry, so can post more later but hopefully will provide enough info now to get some input before a GI appointment in a few hours.

My dd, almost 13 has had crohn's for 10 years. She started on SCD diet at 3 and continued to age 5 and has done enteral since age 5--so 8 years now. Oy. For the first 5 years or so, enteral was her only source of nutrition. She now eats quite a variety of things, but only eats in very, very small quanitities and infrequently so even now it is really the mainstay of her nutrition.

She has really done very well, symptom-wise over the years. She doesn't miss school, keeps up with her peers, etc, so I feel really lucky in that regard. However--isn't there always however---her Crohn's has never, ever been in remission. Her growth is extremely delayed. I know that when she gets more calories in (drinks more formula) she gains weight. Partly, the lack of growth may be due to not taking in enough calories (she drinks 5-6 boxes of Splash daily). She is not on any other treatments.

I am curious what you would do. She is not in puberty yet, but it is clear that our growth window is shrinking. I will admit I am scared of the meds, but realizing that I have to give in and do something. Any advice on what to choose? Her disease is colon only with some ileum involvement. Any advice on what med would be best? How did your Dr decide which to start out with. I really want to "get it right " the first time and not do the bouncing from one med to the other.

Has anyone who is not generally comfortable with using meds been in this same situation? I mean, I would be so much more ready to do this if she were not feeling well, but she feels fine. She does want to grow so that is a motivator for me, but still I am scared. I don't want her to feel bad from the drugs when she feels good without them.

Thanks for any comments, thoughts, suggestions you have. I guess I couldn't keep it brief

 

[ChampsMom]

Hey Curly,

Good luck with your GI appointment today!! I would really want the doctor to give me all the possible options to get her into remission. My son's best growth has happened in remission (he was 13 at diagnoses, now 16), including weight gain, height increase and signs of puberty (he finally has leg hair -it's a laugh...).

There are several levels of meds, learning about each one so you can start somewhere. Our doctor started us on a level one (?) med - Pentasa and it has worked for him (though we increased the dose at one time he's been able to stay with it) and we did 2 short periods of prednisone).

I wish you both the best and I pray you get the answers you need.

 

[Tesscorm]

I was recently in a very similar situation with my son. My son was diagnosed two years ago, at 16. His initial treatment was exclusive enteral nutrition and then 'maintenance' EN with a regular diet. (I was very happy with this treatment!! )It took him into clinical remission and kept him there (minimal symptoms/issues, good weight gain/growth, feeling good... no complaints). However, his inflammation markers were usually just a bit high and two MREs continued to show consistent inflammation. Upon transfer to an adult GI last fall, this new GI strongly recommended that we move onto meds as it would be only a matter of time before problems began.

GI recommended remicade to control the inflammation immediately. Certainly not what I wanted to hear! :ymad: We ran additional tests to confirm that the inflammation/issues were indeed still there (MRE and scopes). GI continued to strongly recommend remicade to avoid the risk of surgery (son's inflammation is in his small bowel).

As my son was 18, he understood the risks of undertreated crohns, the meds and surgery - he very much wanted to avoid the risk of surgery. So, in February, we moved ahead with remicade. He has not felt any differently since beginning the treatment - no better as he felt fine before but no side effects from the treatment either. Blood tests taken at the third loading dose (so, results would reflect efficacy of the first two doses) showed his CRP had dropped to 0.3 from 6.5 and his HGB had risen slightly. He will be having another MRE in August.

As in your situation, it was very difficult to accept this (or any med!) when he was feeling and looking so good. For me, I needed to research every option and discuss them with our GI - while I may not be happy with the med, I do know that I explored every option and made sure my son was aware of the pros and cons of each.

There is no right or wrong answer and no decision will be easy (whether you go with meds, diets, etc.), but you have to consider the risks associated with undertreating as well as the risks of the treatment (meds). The risks of the meds seem so scary, and I'm not saying they aren't real (if slight)!, but I also really made a point of looking at the risks I allowed my son to take each day (being an inexperienced driver, fair skinned=sunburns, hockey, etc.) and I accept those easily because they improve his lifestyle. I hope that the risk we accept with remicade will allow him to avoid surgery and allow him to continue with the lifestyle he enjoys.

But, again, there is no right or wrong decision. It took a LOT of research, reflection and time (and my son's opinion :lol for me to come to terms with the need for meds.

Good luck at today's apptmt. Ask lots of questions and ask for all the tests you think you need to feel reassured of the need to move ahead with a new treatment.

:ghug:

 

[Mehita]

When were her last scopes, MRE, labs, etc? You said that she's never been in remission. What makes you say that? Might her growth be delayed due to malabsorption caused by underlying inflammation? What does her GI think?

DS felt "fine" for the most part, but had low lying, simmering inflammation for years that eventually built up scar tissue and caused a 6" stricture in his small intestine. He ended up having surgery this past January. Had we treated with medication sooner and got the inflammation under control, we probably could have avoided the surgery.

As far as where to start... it probably depends on her specific issues. I'm guessing you'd start with Pentasa or something similar, especially if the colon is involved. It's a pretty mild drug. If that doesn't work for her, then next up would be 6MP, then biologics.

So, in a nutshell, I completely regret not getting DS started on meds sooner and I hope our story can save you that same regret. You've done a great job postponing them for ten years, but if she's not growing well, then there's still a problem. Just my two cents.

 

[Dexky]

First of all, amazing she was exclusive EN from 3 to 8 yrs old!! Did she ever have tube feeds or was it all oral? I'm with Mehita^^^, what are her ongoing symptoms that suggest she's never been in remission? Has her GI ever recommended meds? Maybe, if her crohns is mild enough to respond so well to EN for 10 years, a mild med. like a mesalamine, may be a good first try. Good luck!

 

[killcolitis]

I agree, it's great that she was able to maintain EEN for so long. That must have been so difficult for her. What a trooper! I too have a serious fear of the meds but my daughter's disease was so severe that we have had to use them and have tried them all along with pretty much every alternative except for helminths. She has UC.
If it were me, I'd be looking at scope/scan results and then speaking to the GI about the risks of not treating the CD. I would worry that 10 years of active disease would increase the cancer risk and cause permanent damage to her intestines. But then many people have active CD for decades without that happening. I suppose there are risks to both. For us EEN was never an option (didn't work, tried many times with different formulas ).
I suppose the growth issue would be my biggest concern. How tall is she now? What does the GI say about the onset of puberty. I'm guessing the GI will push for more aggressive treatment because of the growth issue at this point. Good luck and please keep us posted.

 

[curlyqsmom]

Thanks for the replies. Oddly, it was easy for her to do the enteral. In fact, when the Gi wanted her to stop she couldn't. She knows it keeps her nourished and she is not accustomed to eating much food, so this is her "go to" nutrition. Weird, but true.

Had our appointment and the GI wants her to do methotrexate. He said he has had 2 kiddos like her do well on it lately and seems to think it is the lesser of the evils. I am not sure as that came out of left field and I hadn't really researched or thought about it. Any input on safety or effectiveness? Likely have a genetic component to the disease and that seemed to influence his decision on which drug to suggest. Thanks.

 

[Farmwife]

Just for reference Grace is on 5-6 boxes of Splash and she's four!
We will also be doing EEN for a long time also. She's also started LDN as a maintenance drug *IF* it works.
I hope you get answers soon!

 

[my little penguin]

DS was on Mtx for about two months.
Alone it wasn't enough for his Ibd.
Some get tired but folic acid usually takes care of that.
Ibd kids typically need injections
The nurse will train you after the first couple very easy
Good luck

 

[DustyKat]

I missed the second posting! :yfaint:

 

[Jmrogers4]

Jack was on MTX for a few months worked great on Crohn's symptoms but he developed a reaction and it affected his lungs, developed deep hacking cough. Would have definitely stayed on it at the time as it was the first time since diagnosis he was symptom free

 

[Sascot]

Methotrexate isn't something I have experience with - my son is on 6mp. Just wanted to wish you luck with it - hope it helps soon without many side effects!

 

[DustyKat]

Thanks for the replies. Oddly, it was easy for her to do the enteral. In fact, when the Gi wanted her to stop she couldn't. She knows it keeps her nourished and she is not accustomed to eating much food, so this is her "go to" nutrition. Weird, but true.

What a treasure. :heart:

Good luck with the Methotrexate. I hope it works wonderfully for your lass, bless her. :hug:

Dusty. xxx

 

[Tesscorm]

We have no direct experience MTX either but a friend's daughter has had MTX injections for over three years now and no real side effects either. Unfortunately, she did have to add remicade a while ago, but the mtx did work well on it's own for a couple of years.

You might find more info on methotrexate in the treatment subforum:
http://www.crohnsforum.com/forumdisplay.php?f=88

 

[Johnnysmom]

I know there are cases when kids are not accustom to eating food and they literally need to re-learn how to eat normally. They have programs on how to reintroduce foods and begin eating again. I would think with her lack of growth and puberty that she is not getting what she needs from her current diet. Or her disease is still simmering away and not allowing her to absorb everything she is taking in.

I can only tell you that my son when a period of time when he was feeling great but not gaining weight. His fecal cal was in the 430 range. Once his fecal cal was normalized he has no problem gaining weight and growing like any other normal kid.

I think the chances of you having success by not treating the disease would be very small and not worth the potential risks. Especially if she is having symptoms (not gaining weight).

(((((Hugs))))) I know these decisions are never easy.