5yrs old and starting Sulphasalazine!!

[Runninglady]

Hi, my little girl was diagnosed at 3 yrs. She has been fairly well until a couple of months ago, the doctor now wants to put her on this med and wondering if anyone else's has any experience with it? Thank you in advance.

 

[troydanielbecker]

Welcome. Yes, check out our blog for a myriad of details.

You can take this one way or another, but the active component in sulfasalazine is almost exactly like aspirin.

My beef with it is that it uses a sulfa drug to get the medicine to the bowel area. The sulfa drug is an antibacterial drug, and I don't like the idea of having the bowels bathed in it every day if we're trying to cultivate an ideal environment for intestinal flora. However, until we're sure Isaac would be better off without it, it's our maintenance medication under the advice of our doctor. As long as we make sure Isaac doesn't consume soy, he seems to be doing okay as far as we can tell for now.

 

[troydanielbecker]

Actually Isaac was diagnosed in 2010. It looks like I need to amend my signature.

 

[Runninglady]

Just unsure what to do, I think she will have to go on long term medication as when they reduce the pred it just flares up again!!!

She has several different allergies which we prohibit from her diet but at the moment it is not doing any difference.

Is there anything other than Sulphur she could be taking??

 

[JenEdwards]

Kailynn is on 2000 mg of it a day. She takes it along with folic acid and iron. It has worked well for her since hers is fairly mild. The only side effect she has was a headache for a few days. Her last bloodwork showed that it's working.

 

[Runninglady]

Thanks for your reply and glad it's working for your little girl. X

 

[AZMOM]

HI RunningLady and welcome to the forum! We're glad you are here.

I'm sorry to hear that your little one is having trouble. The CCFA has a short list of the medication classes and options that I thought might help.

http://www.ccfa.org/info/treatment/medications

My understanding is that most kids (grownups too) need something to help maintain remission once you get there.

Dusty hasn't replied yet but I'm sure she'll have a lot to add. She, and all the other contributors here, will be a great resource for you.

Let us know what you decide, ultimately, and how it is going!

Hugs,

 

[DustyKat]

Hi runninglady and :welcome:

I'm so, so sorry to hear that your daughter has IBD at such a young age, . BUT this is a fab place for info, support and friendship! :biggrin:

Sulfasalazine (an anti-inflammatory) is one of the milder drugs to maintain remission in IBD. Like with Kailynn many people have success with it but like all treatments everyone is different and some suffer with the side effects of headaches, nausea, stomach upset and so on which unfortunately can be quite common with this drug. 5 ASA is a newer, more expensive drug that has similar properties that many GI's tend to prescribe these days but that doesn't mean sulphasalazine won't do the trick! The next step up from these type of drugs is the immunosuppressants.

Again everyone is different medically (severity of disease) and everyone has their personal beliefs as to how remission can be maintained. In my own personal opinion I believe that medication, amongst other things such as lifestyle and diet, is a requirement to maintaining a remission. My son is only recently diagnosed so not much experience there but my daughter was diagnosed 5 years ago during emergency surgery. Sarah has been in remission since that time and takes Imuran daily, she has also made changes to her diet that she finds suits her the best. Is it the Imuran that has made the difference? I don't know but what ever appears to be working is good enough for me because I would hate to see her go back to those dark days in 2006.

I guess the main thing is to keep doing what you're doing Mum, that is, advocating for your daughter, asking questions and becoming informed, be prepared to make changes if things aren't aren't working and fight tooth and nail to be heard. That is the best possible thing you can do for your little girl and something you will never regret, as the years go by you will never be left wondering about the what if's.

I wish you and your baby all the luck in the world in your journey and I hope more than anything the medication does the trick and she has many healthy, happy years in remission. Good luck and welcome aboard!

Lots of love, :hug:
Dusty