Crohn's Disease Forum » Parents of Kids with IBD » Alternate to Sulfasalazine?


09-20-2014, 10:08 PM   #1
djf863000
 
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Alternate to Sulfasalazine?

My son is almost 22 month and was diagnose with Crohn's disease a few weeks ago. We started seeing blood in his stool when he was 18 months.

The doctor put him on Sulfasalazine and has been on it about a month ago, which I think helped. It is a little hard to tell as he is also on iron supplement, which make his stool very dark, sometime black.

This week we started to see blood in his diaper again, almost every day (not ever diaper).

I am started to wonder if Sulfasalazine is effective anymore. I am seeking alternatives. He's about 28lbs.

The doctor said no restriction of what kind of food he can eat or drink, but some parents I talked too said he should avoid lactose and maybe gluten, which is very overwhelming. He's a picky eater, and doesn't like pieces in his food. Eve pieces of fruit he won't eat.
He hasn't been on cow milk since July already ( he still likes his bottle before bed time), but we haven't completely removed lactose from cooking. He on Almond milk or Silk milk right now before bed time.

Because of blood lost in his stool, he's on 2.5mg (or ml) Iron twice a day, and 1mg of Folic acid, because of the medication he's on. We also added 2 TBSP of pure Aleo Vera Juice (twice a day) and a 1 tbs of pro-biotic twice a day.

Some people told us, we should go all natural. I am also worried of all the side effects (long term and short term). As far as we know he isn't allergic to anything.

What are alternatives to Sulfasalazine for his age and weight?
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Sulfasalazine 1/2 tbs twice daily
Iron supplement for toddlers (2.5mg) twice daily
Folic Acide (1mg) once per day
Pure Aleo Vera juice 2 Tbsp (twice daily)
Pro-biotic 1 tbs twice daily

Last edited by djf863000; 09-20-2014 at 10:34 PM.
09-20-2014, 10:48 PM   #2
SupportiveMom
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Boy do i hate hearing these younger kids getting diagnosed! So sorry for the diagnosis. Can he take (use) Cortifoam? It is a foam enema. My daughter is much older than your son but we did use cortifoam off & on the last 2 years. I would ask if that is an option. Also, aloe vera caused more issues for my kid on it than off it. There are mixed views on it here. Research and make sure it is the right decision. For your son. Keep us posted.
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Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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09-21-2014, 12:19 AM   #3
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Im sorry to ear about your situation. its possible for sulpha to work a bit at first and then lose its efficacy pretty fast, been through it. the doctor will prolly recommend an immune-suppressor next. Cortifoam is good but cant be used long term. There may be a another medical option for your son before that. Read about Elemental diets here on the forum. Its a naso-gastric tube feeding at night as sole nutrition and this is often used for CD young patient, this young not sure however, but most likely ,yes.. some pedeatric hospital are more pro-active than others for this treatment option, maybe not yours. I see your'e in Canad, so Vivonex from Nestle is the elemental diet we have. Inform yourself on the subject. Ive already posted some of the latest scientific reviews here too. It may greatly help CD, even set remsission, definately worth trying before engaging in more poweful meds.

you mention trying stopping milk products or other foods. you may give a try to stop gluten + cows milk for a little while at the same time as an experiement. Also check for carraghenan ingredient in your substitute milks. This is an ingredient that should be avoided.

what do you mean by ''going all natural''?


all the best to you 2.
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past meds:
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09-21-2014, 02:59 AM   #4
alex_chris
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The doctor put him on Sulfasalazine and has been on it about a month ago, which I think helped. It is a little hard to tell as he is also on iron supplement, which make his stool very dark, sometime black.

This week we started to see blood in his diaper again, almost every day (not ever diaper).

I am started to wonder if Sulfasalazine is effective anymore. I am seeking alternatives. He's about 28lbs.
First, welcome to the forum. Sulfasalzine is one of the preparation forms of 5-Asa used for treatment of ulcerative colitis and has in the past also been used for crohn's although the effectiveness in Crohn's is debated. To answer your questions directly, the direct alternative to sulfasalzine is mesalamine (5-Asa), but as just said, unfortuntely it is not very effective for Crohn's.

I defer to people with in depth knowledge on treatment of toddlers with Crohn's on this forum (you can find all kinds of threads on Crohn's and toddlers on this forum when you systemtically go through all threads in the Parents of kids with IBD section - here is an example thread http://www.crohnsforum.com/showthread.php?t=15324). However, still, I understand the current approach to Crohn's and toddlers is very similar to the one in older children. You want to avoid inflammation at all costs and thus principle use the same type of medication older children and adults use, because untreated crohn's has side effects much worse than the drugs used to combat inflammation. I understand corticosteroids are used for toddlers, usually in enema form. And after steroids induced emission immunosuppressives or biologics. Many parents also try out different diet forms that helped them. To be clear, you really need a GI with a good experience of treating many Crohn's patients, both children and adults.

On the iron supplement front, the majority of Crohn's patients cannot take a variety of iron supplements. They irritate the bowel further, especially when there already is inflammation (suggested by the blood). This is a tricky topic and what supplements work differs from patient to patient.

The doctor said no restriction of what kind of food he can eat or drink, but some parents I talked too said he should avoid lactose and maybe gluten, which is very overwhelming. He's a picky eater, and doesn't like pieces in his food. Eve pieces of fruit he won't eat.
There are lactose tests, a doctor shouldn't just say to a avoid lactose without a reason. And food is key to the successful management of Crohn's.

Some people told us, we should go all natural. I am also worried of all the side effects (long term and short term). As far as we know he isn't allergic to anything.

What are alternatives to Sulfasalazine for his age and weight?
Coming back to the initial question and the side effects point, this is why you need a good doctor specialized on Crohn's who knows what he is doing. All drugs people take van have side effects. With Crohn's the trade off is a. active Crohn's (evidenced through inflammation, principally blood in stool or diarrhea of pain) over years leads to scaring in the intestine which can lead to narrowings and ultimately to required surgery to remove these narrowings or even blockages, not to mention the problems that go along with the constant inflammation vs. b. The use of drugs and special diets that you can find described in detail on this forum. And unfortuntately the drugs with little in terms of side effects such as sulfasalazine are also by far the least effective while the drugs that work well have certain side effects and in rare case can have severe side effects. The overwhelming opinion today is to go for b. Over a.

I hope your kid will do better soon.
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09-21-2014, 03:32 AM   #5
alex_chris
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My little penguin has also just posted a comprehensive thesis detailing the current status of pedriatic Crohn's: http://repub.eur.nl/pub/37166/120907...Irene%20de.pdf

From there, a good summary on the current status of suggested treatment starts on page 191. It also has good information on EEN (exclusive enteral nutrition).
09-21-2014, 06:38 AM   #6
my little penguin
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Ok first kids are different than adults they tend to have more severe disease course and typically need meds . The only proven diet to work is EEN ( formula only ). DS was on peptamen jr only for 9 weeks in addition to 6-mp.
He never had a tube just drank it all orally.
There are three types of formulas polymeric ( think regular baby formula which most recommend toddlers stay on until age two even without Ibd of they aren't drinking true cows milk) , semi elemental ( peptamen jr and peptide ), elemental( neocate,elecare, eo28 splash). The close to elemental you get the easier it is for the gut to absorb the nutrients. A bottle or a straw by passes the taste buds so it can be easier to get a little one to drink the formula .
As far as other dietary restrictions -that is not going to fix the problem by its self . Most kids (less than 10) at dx are known to have a different phenotype of the disease than the adult version. Add in Ibd kids need more calories than the average normal kid just to grow and gain weight. DS was dx at age 7. He never gained any weight for two years then slowly started to lose weight. Once he was in the right meds , in his case remicade plus formula he gained 20 plus pounds and never stopped . That was two years ago. He still drinks peptamen jr (2-3) daily plus normal food. He moved from the 25% back to the 75% for height and weight.
He drinks cows milk daily and has no food restrictions except the norm ( no seeds no nuts no skins on fruits -due to possible abscesses). We did find out his body currently doesn't like raw veggies ( get watery D with those) but cooked is fine.

My pont is with holding food from a toddler when you don't need to typically is not recommended and won't fix the disease anyway.

As far as Aloe vera -does your gi know about this ?
Aloe vera is NOT recommended at ALL for those with crohn's regardless of age .
It can make crohn's worse .

Most normal folks will try to tell you if you just eliminate this or do that naturally it will fix crohn's. It doesn't work that way -at all for kids since it's not IBS but IBD and they are way different than adults.

Paging Farmwife her dd was dx at age 3. Pilgrim as well and Malgrave .
Izzismom, queen gothel

6-mp or Imuran is probably next -don't stress about the side effects since under treated or un treated crohn's has far worse conscequences than possible side effects of the meds.
Plus docs don't tell you constantly about side effects of normal meds Tylenol can cause liver damage or death yet millions of infants and toddlers take it - why because the benefits of the drug outweigh the minor risk of a possible side effect that rarely happens .

It very hard in the beginning and the learning curve is very steep but we are here for you and most of have btdt including being scarier and being told if we just didn't feed out kid xyz they would be fixed. I just say thanks but no thanks I will listen to the doc who has years of experience .

If there is a specific question you have let us know
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09-21-2014, 06:42 AM   #7
my little penguin
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EEN slides for kids
09-21-2014, 06:43 AM   #8
my little penguin
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Pediatric Ibd
09-21-2014, 06:44 AM   #9
my little penguin
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09-21-2014, 06:45 AM   #10
my little penguin
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09-21-2014, 06:47 AM   #11
my little penguin
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Plus a ton more from our pediatric research section top of the page
http://www.crohnsforum.com/showthread.php?t=43002
09-21-2014, 07:50 AM   #12
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Welcome to the forum. Im sorry to hear about your son.
I will second what MLP has said.
Do not withhold food unless its a proven allergy or intolerance.
My girl needed an extra 500 hundred calories during the worst of her flares.
My dd also does EEN/EN. Its been a real life saver and at the very least I know she's getting all she needs to survive.
You can make an appointment with an Allergist and/or a Dietitian, they can be a big help to finding possible food triggers.
Also we parents have the added burden of getting our kids through the developmental stages in their lives (growth, puberty, etc...)
So finding the right meds is very important.
We did Aloe Vera (the good stuff) before we knew the problems with it and yes it made her worse.

Plus, be prepared or a lot of well intentioned family and friends giving there advice on how to cure IBD. Trust me I wish it were easy. I wish it didn't take meds to help with disease but these meds can help and things will get better.

Please ask all and any questions.
We also have a young ones support group. Please feel free to join.
http://www.crohnsforum.com/showthread.php?t=59511
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09-21-2014, 09:57 AM   #13
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Hi and welcome. It's too bad you have to be here, but we all help each other.

Our GI had put our daughter, at age 3, on Sulfasalazine when he had seen the disease activity in her colon by scope but was waiting for the biopsy report. Once he had the report which confirmed Crohn's Disease, he called and told me to "throw it away, it doesn't do anything for Crohn's".

We experimented a little before diagnosis with diet changes, they just made her cranky (me too, it was a head ache dealing with all the different food). For a time we stopped dairy. Another time, thinking she might have Celiac Disease (I was hoping at that point!), we eliminated all sources of gluten.

Hopefully, you can start working with a registered dietitian who specializes in pediatric IBD who can help you as well. Sadly, there is no miracle dietary cure for Crohn's.

Anyway, after Sulfasalazine ended up in the garbage, we went with the exclusive enteral nutrition (EEN) for 6 weeks and it really helped a lot. Now we are starting immune suppressant medications. It all sounds hard and scary at first, but I came to understand that even scarier is uncontrolled Crohn's disease.

You've got a lot of decisions and worries ahead. Keep your strength up and learn as much as you can.
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Mom to daughter,age 7, diagnosed at age 3 with Crohn's Disease and son, age 9, diagnosed at age 9 with Crohn's Disease

Current Treatment: Daughter - 40mg weekly Humira,
10mg oral Methotrexate, iron, zinc, Vitamin D.

Son - 20mg Methotrexate injections, 8 weeks EEN
10-03-2014, 10:59 PM   #14
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The doc put him on metronidazole now, because an infection (possible caused by Sulfasalazine). that liquid form is very hard to give. We tryed 4 doses of it and 2 of them, I don't think he got much, the other 2 times he threw up most of his meal. The last time (supper time) he acted funny afterward, opening his mouth funny and frowning in a way I haven't seen him frown before. 30mins after cleaning him up we offered some his favourite dessert. He took it it but would not swallow, and kept drooling. I read somewhere that med has a bad taste. I very doubt he would take it even if I mix it with his food. He doesn't drink juice, he's kind of a picky eater. I wish he would drink more water. He rarely finish one zippy cup in one day. At least he drinks 20oz of almond of silk milk per day, divided in 2 times.

We went to a naturopath last week and said to go on a gluten and dairy free diet for 4 weeks to see if things improve. Putting him on both is very overwelming. He said he couldn't do any test on him to see what triggers a flare, because of the meds he's on that could interfere with the test.
10-04-2014, 07:49 AM   #15
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Our daughter hated the taste of the sulfasalazine too. It seemed to linger anyway, even after she had a taste of food afterwards. Are you at the Children's Hospital in Wpg?

I was thinking of getting in touch with a naturopath too, and I'm wondering if the doctor and naturopath will collaborate or if it's something we would have to do independantly. How did it go for you?
10-04-2014, 08:40 AM   #16
my little penguin
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Not something I would do but ...,
10-04-2014, 09:28 AM   #17
Farmwife
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Thanks mlp

I'm not trying to start a debate on this thread. This is just my opinion!


NO! GIs and Naturopath Practitioners (NP)doesn't get along.
We went to a Naturopath doc early on. Tried everything, paid a lot but this disease isn't curable like some (not all) NPs will claim.
I'm still glad we tried. It was mentally easier to put my DD on these drugs.

Now I still believe in natural remedies for somethings but not for maintaining remission or curing IBD.
10-04-2014, 10:18 AM   #18
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I agree, GI and Naturopath don't get along, eventhough they took basically the same courses at school.

The Gi claims he will be on meds his entire life, but can eat everything he wants. The naturopath claims that if he goes on a strict diet, it may technically cure the disease. Not sure what he meant by that.
10-04-2014, 10:52 AM   #19
my little penguin
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You can't cure crohn's by a naturopath .
Some supplements with anecdotal evidence sometimes help some.
Diet did not cause crohn's not can it fix it completely .
That said some foods can irritate the gut more during a flare for some so these are sometimes avoided.
Not trying to break your bubble but this topic comes up often since as parents we all want to just avoid xyz and have our kids cured.
There is no cure currently for crohn's .
Kids tend to have a much more severe disease course
The only proven way to slow that down is through meds.
Keeping as much of the gut as healthy as possible with as normal a life as possible.
Most need surgery within 5 years if they are not treated agressively .
Add that to a lifetime and it doesn't leave much small intestine left.

You can live without a large colon but can not survive without a small intestine .
These facts along with the fact under treated crohn's can kill makes most parents to let their lo take the scary drugs since they give our kids the best shot until better stuff comes along.
10-04-2014, 02:34 PM   #20
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metronidazole doesn't work. ended up eating nothing this morning. Ended up hiding it in his cereal. Took 2 spoons full and threw up 20 minutes ago.
10-04-2014, 08:19 PM   #21
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I am so sorry to hear about your son. It is hard when they are that young.
If you really want to try a more natural approach, the only one proven to work is EEN. Basically that is a total liquid diet of special perscription shakes that are either drank or given by a nasogastric tube for six weeks. This is the only diet or alternative approach proven to have succes with some kids going into remission.
I don't know if you saw but if you scroll back up MLPS put a lot of informative links for you to look through. I highly reccomend readi g through them. Knowledge is power in this disease.
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Crohn's Dx'ed Sept 08
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Pentasa stopped - nosebleeds
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Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
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10-04-2014, 08:24 PM   #22
Farmwife
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Poor kiddo.
Do you think its an allergy/reaction to the medicine?

If you think it warrents a call to the GI office, DO IT!
On the week-ends you can call the on-call GI.

Also we learned with my DD to use a small syringe and shot it in. It went in so fast she would swallow before she could fit....and she did fit.

Plus if you go with the NPs advice make sure the GI knows
and you keep up on the monitoring of the disease (labs, scopes.....).
This disease can be so silent.
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