Any success only using one of the 5 ASA drugs?

[Mom2oneboy]

Hi Everyone!

I'm new here with a 10 year old son that's just been diagnosed with Crohn's. He's currently on Entocort and Flagyl as he also had a perianal abscess in Dec and Jan.

I'm wondering if there is anyone here with a child who has had success with one of the 5 ASA drugs without using any of the othe immune suppressing ones? His doctor is recommending Aza and with all the side affects it really scares me. I'd really like to try one of the other drugs that don't have side affects that use that nasty "C" word.

I'd appreciate any feedback you might have.

Thanks,
Shelley

 

[kimmidwife]

Hi Shelley,
Two things I encourage you to look into are enteral nutrition and low dose naltrexone. Both are safe treatments. There is a lot of info about both on these forums.

 

[Rebecca85]

There is a little boy at my school who is taking Sulphasalazine for his Crohn's and has done for the past year or so. It still isn't quite under control, he does have a lot of bathroom trips but he is no longer in immense pain after eating his lunch. But he was never on a steroid to start his healing, his mum was scared of the side effects of pred and entocort isn't an option as he has colonic involvement. I think if he had been on steroids then the sulpha would be enough to maintain remission. As it is he's getting there but very slowly.

 

[Dexky]

I wouldn't blame you for trying Good luck Shelley!

 

[Tesscorm]

Hi Shelley,

I agree with Kim, do a bit of research on EN or LDN (my son is on EN) and speak with your son's GI. Perhaps this is something that can be done in combination with the 5-ASAs.

My son's GI wants to move him to methotrexate if/when the EN stops controlling his Crohns. I did ask about the 5-ASA drugs and LDN but he didn't feel that they were successful enough to use. Have left it for now as the EN is still working, however, I will question his opinion a bit more later as there seem to be lots of members here who have had success with 5-ASA and/or LDN. EN is risk free and, as you are aware, 5-ASA drugs are less risky than many others as is LDN.

Good luck.

 

[Mom2oneboy]

Hi Shelley,
Two things I encourage you to look into are enteral nutrition and low dose naltrexone. Both are safe treatments. There is a lot of info about both on these forums.

Thanks for the info Kim. I've been reading a lot about LDN and it sounds very encouraging. How is your daughter doing on it? I'll be asking our doctor if he prescribes this at our next appt. He never even mentioned it as an option. The EN seems like it would be so hard for a 10 year old especially from the social aspect. I need to read more about it.

 

[Tesscorm]

The exclusive (formula only) period is tough to do and, I imagine, even tougher for a younger boy (my son is 17).

There is another mother who is just deciding to move her 10 year old son from steroids to EN, look for Twiggy930 - she has a recent post (in this subforum) discussing the transition which might be of interest to you. There are quite a few comments on there re the EN. But, I agree with you in that it is a tough process at the beginning but, if he can stick with it, can have great benefits.

 

[Twiggy930]

Hi Shelley,

Welcome to the forum. I am the mom of the 10 year old that is switching from prednisone to EN that Tess mentioned. My son was diagnosed at the beginning of February and was started on prednisone (a whopping great 40 mg dose) and azathioprine. After being on the prednisone for 4 weeks he is still not doing very well and has been unable to make it through more than 2-3 hours of school a day and some days can't make it there at all. So at our GI's suggestion we are going to switch to EN. I agree it seems like a hard thing for a 10 year old to do. Initially, just after diagnosis, my son was dead set against it but seems much more open to the idea now. I think he is just tired of feeling so rotten and will do anything to feel better. We will see how it goes. Unfortunately we can't start until March 20.

As for the azathioprine I too was deeply concerned about the side effects. Everything you google talks about the increased cancer risk. I know Dusty has a great link to an article about the risks versus the benefits to the various drugs. I will try to find the link. I think it is essential to look at the cold hard, unemotional, statistics when trying to rationalize these medications. The cancer risk may be slightly elevated but it still remains VERY small. Having said that the emotional side of me still panics sometimes. Our plan is to stay on the azathioprine as a long term maintenance drug and use the EN to induce remission in the short term. Got my fingers crossed that it all works.

 

[Twiggy930]

This is the link I was talking about.

http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf

 

[DustyKat]

Hey Shelley,

I don't recall seeing anyone's children on the forum that have had success with 5ASA's alone but I may well be wrong! There are adults here that have and are successfully maintaining remission with 5ASA's only. As others have advised, it is well worth looking into EN and LDN as alternatives as well.

In stating the obvious, his response to treatment will very much depend on the severity of the disease and any complications that may be present. Their is certainly nothing wrong with your desire to start out with the least offensive, for want of a better word, drugs, this is the step up approach. I well understand your fears about the immunosuppressives and biologics and I think the most important thing is to go in with an open and flexible mind. As hard as it is try not to be dictated to by fear and be prepared to change tack if the child in front of you shows that treatment isn't working. Sometimes we have to do many 180's before we hit on the right treatment and it is often a combination of drugs we hate, coupled with diet and supplements that give our kiddos normality again.

Mind you, I am one to talk as I know that many of my decisions have been based on fear. :lol: Fear from another perspective but fear nonetheless.

Good luck, I hope the 5ASA's are wonderfully successful for your boy!

Dusty. :hug:

 

[Mom2oneboy]

Hi Twiggy,

I'm assuming your son will be doing the EN with the nose tube. Will he be leaving it in or replacing it each night? What formula will you be going with?

I'm seriously considering this for my son. Thanks for your feedback.

Shelley

 

[Devynnsmom]

Hi Shelly, my 10 year old daughter was doing well on Pentasa for about 18 mos. We had upper her dose once at about 12 mos in. Her doctors said we still had room to play with dosage (she started on 500 mg twice daily, went up to 1000 mg in the am and 500mg in pm and is now on 1000 mg am and pm). We have had a lot of stress since last June and she has been flaring ever since. She had another scope (upper and lower) at the end of Feb and we are going to her dr at the end of March for results.

 

[Twiggy930]

Hi Shelley,

My son will be doing EN via a NG tube. We are going to the hospital on Tuesday to learn how to insert the tube so that he can put it in and take it out himself. I think we will start off trying Modulen and see how that goes. I'll let you know how things go on Tuesday.

 

[Farran7]

My son is 11 years old and is doing quite well on the 5 ASA alone....he has been on it for about 4 months....and has already crossed percentiles in height. He is also supplementing with Pediasure, Caltrate, and multivitamins. He looks great, feels great and has had no ill effects from the Apriso. I should mention that his main symptoms prior to dx in July were lack of growth and penile edema. The edema has not improved a whole lot but hasn't gotten worse either....but the docs are unsure if it is related to his crohns disease.

Farran 7
11 year old son diagnosed in July 2011 (after 6 yrs of searching for answers)

 

[Lisa]

When I was a child, I did well on sulfasalazine for years - however I would go off once in remission and the interval between flares steadily decreased (from a couple years to eventually being medication dependant).....so yes, it can achieve and keep remission.....my disease also got worse over the years......

 

[MomofIBD's]

Daniel has been on Pentasa since DX September 2010 at age 11. He was also on Prednisone & Flagyl then too. His first 9 months were really hard as he kept getting strep throat & c-diff. But once we got through all that & got him started on a probiotic he has been much better. The only thing he is taking now are 1000 mg of Pentasa a.m. & p.m. Probiotics, Zantac 150 at bedtime, and a multi vitamin. Also extra calcium & vitamin D. He is doing so much better. He has grown 4 inches in the last 7 months & is 13 now. The only issue he is having is some major athletes foot & some constipation from time to time. I am looking heavily into the LDN & plan on copying a lot of info. To keep on hand in case of a flare. Since we are at Hershey who did the study with Penn State I'm hoping to get not too much flack in my choice. I hope this helps as we all want what's best with the least amount of symptoms. Also my adult son John was DX in College with Crohns. But we didn't know until it was too late & he had to have emergency surgery. He has been on Asecol since with a small flare since his surgery which was quickly nipped with prednisone. It's been 5 or 6 years now since his DX.

 

[Mom2oneboy]

Momofibds,

Unbelievable and unfair that your family is so affected by IBD! I'm curious to know if your doctors recommended the bottom up approach on the meds or was it you. Seems like there are so many wanting to start with the bigger drugs first.

Also, I see in your signature "Flagyl (hand neuropathy). What does that mean? My son is on Flagyl and the last 2 mornings he has woken up saying his hands are numb. We see the doctor tomorrow and I'm going to ask him about it but would like to know what your experience was (if you don't mind sharing).

Thanks,
Shelley

 

[MomofIBD's]

Shelley, yes that is what Daniel had with his hands. Numbness in his hands & wrists also his hands have a slight tremmor that never went away. It got better & only shows up with fine motor skills now that he is off the med. It is listed as a side effect on the drugs info packet. Albiet a lesser one it is there. Please let the Dr. Know! I wasn't paying attention & he was on Flagyl for 2 months, it is also what caused his c-diff because he wasn't on a probiotic with the Flagyl for too long.

His Dr. suggested it. As his bloods got better & have been good we never had to go any further. But his Dr. says 75 to 80% of kids end up on 6MP by the end of the first year. He was really sick the first year with the Strep & c-diff missed a month of school & was late to school just as many days. But his bloods were better it was those infections that did him bad & could of caused a relapse. His scopes showed only a few inches of inflamed bowel at the end of the small intestine. His disease is deemed mild to moderate. I hope this helps & please mention the Flagyl to your Dr. In fact look up the drug info on line from the makers site & print out the side affects. So you all your ducks in a row!!! Our Dr actually did this himself with us .... But I know not all Dr.s are created equal!!! ; )

 

[Mom2oneboy]

Thanks momofibds! I looked it up already and you are so right. It states the numbess and tingling. He took it this morning for the last time! He's been taking it for a month and half no prob until this weekend. Weird! That's why I hate all the medicines. They can fix one thing and break 3 others.

Thanks so much!