Help my kid is Steriod Dependant?

[jenstaci]

OK so my son Micah was diagnosed 2 months ago with a Severe case of Colonic Strecture Crohn's Disease! When he was diagnosed around Labor Day weekend, the Upper and Lower GI and colonoscopy showed Chrohn from his esophogus to his stomach to both intestines into his Colon. So we were immediately put on Flagyl, Imuran, Asaocol, iron, and Zantac. After being on that regime at 4 weeks we started tapering off the Prednisone and a huge flare came in the form of huge red painful nodules on both his shins called Erythema Nodosum. So we went back up to the original dose on Pred. Then 4 weeks later we started to wean off the Pred again and major time hige set back, we were just in Childrens hospital for 10 days. A 70% Obstruction in small intestines, an abscess, a stricture in the illium, and the intestines completely shut down. So we started Cipro and Flagyl IV, Nexium, and we had to start a Remicade infusion, whick will now be our course of action in 2 weeks, 4 weeks and 8 weeks. I feel so horribly bad for my 9 year old. We has been so sick for 2 months, we can't get this uner control. My doctor has put us on VSL #3 probiotic, which she claims fors wonders for Crohns and UC patients. We are off the Asacol, Imuran, pred, and Zantac and are only going to do the Remicade. She told me not to worry about the diet only no nuts and seeds and stick to a low residue type diet. Put Im desparate to know what is causing these flare ups and how to keep them under control. Has anyone else experienced this? I already discussed the EN nutrition and they said no that when he gets off that we will be back to square one. So any help will be greatly apprecciated??:eek2:

 

[Scaryman]

Bumping this for you! I don't have those complications and not sure if I'm steroid dependent yet. I know other patents will help you soon!

So sorry your going through this. Is your child able to hold down clear liquids and tolerate it? How about smoothies?

 

[Sascot]

Sorry to hear about your son. I have no real advice on medications as my son has failed Aza, but has nothing else.
I have to say the EN (Modulen) did wonders and he is still doing well stomach wise ever since even though he eats pretty much anything now - apart from popcorn/seeds/nuts and we cook veg and peel fruit. It is definately worth trying even just to help the meds kick in. I have to say my son's case was mild, but there are plenty kids on here that were really bad and EN helped alot! Good luck, I really hope the Remicade gets him into remission.

 

[my little penguin]

My DS is on remicade . He is also steroid dependent .
His crohn's is located from his esophagus to his rectum.
He didn't start out as bad as your son at dx but after 6-8 months of really not being treated since the 6-mp wasn't doing much. A second scope had showed his disease had spread.
We started pred in June with Mtx but were never able to wean he kept getting vasculitis amount other things. We started remicade this past Aug and have hAd ; infusions so far .
It is a miracle drug for DS .
Outside of a little fatigue the day of the infusion you would not know he had crohn's any more. No more pain, crying , joint pain, vasculitis, vomiting, migraines,rectal prolapse, temnisus , or constipation. He just dances, sings, gets into trouble and plays like a 9 year old should.
I hope your infusions go as well as ours.
It took three infusions before he was back to "normal " so it may not seem like it is working right away.
Plus remember his gut took a long time to get to that point and mist take at least six weeks to heal.
Wishing you all the best.

 

[kimmidwife]

Jenstaci,
Why are they saying when he gets off the EN he would be back to square one? A lot of people on here have had very good success with EN helping their kids get into remission and then using a maintenance drug such as remicade to maintain the remission. I don't know what it is with the USA but in many other countries they start with EN and then progress from there. EN is very healing and so e times allowing the gut to remain quiet from food and just focus on healing can be very beneficial. There is a lot of good info under the treatment section. I recommend takinga look at it. You may have to tell your doctor I want to try this and be firm. I know we had to.

 

[my little penguin]

You can also do EEN in addition to remicade.
Then you get the nutrition growth benefit.
EEN tends to work but is mainly proven in mild cases.
Kimmiwife is right once you introduce a piece of small food the inflammation will be back with a vengeance .
We have DS on EN in addition to his maintenance meds .
He will stay on peptamen junior until he done growing since up to 85% of kids with crohn's have growth retardation. He also eats a normal diet the peptamen just guarantees absorption of some nutrients.

 

[izzi'smom]

DD was steroid dependent, or refractory for quite a while. Eventually Pred stopped working for us.
We did Enteral nutrition along with Remicade, and while Remi didn't help, Enteral nutrition halted some pretty significant weight loss and help stave off her disease to buy us some time to determine our next plan of action. I would do some additional research and present it to your doc. I was always looking for treatments that might help but can't hurt.
I am so sorry for your struggles, BTW. It feels like a terrible dream when you can't get yout little one well. (((HUGS)))

 

[jenstaci]

DO you thingk the VSL #3 works good? Our pharmacist just ordered it for us?

 

[izzi'smom]

The VSL didn't make a difference for us, and at over $75/month, we quit using it after a while. Izz has been on Bactrim twice a day for six months now (an antibiotic), so a probiotic would be useless right now anyway. That being said, I am glad we tried a probiotic (and fish oil, diet modification, EN, etc lol) so that I knew what didn't work before putting her on the drugs that *do* work. I hope it works better for you!!

 

[DustyKat]

I agree with what Kim has said about EN. It is a silly statement for the doctor to make because it is not necessarily about what happens when you stop the EN but what you do to maintain its benefits when you do stop.

We haven't used VSL#3 here but as Angie has shown for some it is of no benefit but I do know for others on the forum it appears to have had some benefit. The cost can be prohibitive but if you can afford it I don't see the harm in trying.

Good luck!

Dusty. xxx

 

[crohnsinct]

I think you may already know our sdtory but my daughter was put on Remicade at dx in February. By May everytime we reduced steroids her blood results would go bad and symptoms returned. Not as bad as dx but she would slide. Doc said while Remi was doing the heavy lifting it needed help. He suggested methotrexate...we asked about EEN. He supported it. It worked wonders for her.

The way our doc explained it was, it works for a lot of people but doesn't always maintain remission. Some come off and stay off for a year or more. Some only a few months or weeks. Point is you don't know until you try and there are no risks and lots of benefits with nutrition. My daughter came off mid July (6 weeks EEN and about two weeks transitioning back to food) and has been great ever since.

She stayed on Remicade throughout though. We were using EEN not as sole treatment but for a boost. I would have loved to see if EEN could work on its own for her but once you are on Remicade you are pretty much chained to it because if you come off and go back on the chances it won't work are much higher so we don't want to tempt fate. She is doing great now.

I hope he gets some relief soon. Sounds like you have both been through the wringer.

 

[kiny]

VSL#3, I have nothing against the product, it's a good probiotic, the "wonders" just isn't seen.

I would just like to point out that VSL#3 is made by Ferring, Ferring has been accused and still gives huge kickbacks to doctors (i.e. bribery) to promote their probiotic. That's also the reason everyone talks about VSL#3 and why all studies are with VSL#3 and not other probitics (even though there are tens of probiotics just as good as VSL#3). Ferring pays for the studies, the doctors use VSL#3, if the study is positive Ferring gives the go ahead to publish it, and the doctors get the kickback, the negative studies never get published. Take that into account when someone calls it a wonder probiotic.

 

[izzi'smom]

My GI is huge on studies (and not just the reports based on them)...he supports VSL #3 and one other probiotic because studies have shown that they can help. Like all drugs, I don't believe that they will work for everyone, hence the differing opinions. I think a large part of it is that our ddiseases are all so different. Just my take on it.

 

[Farmwife]

((((((((((hugs))))))))))

 

[QueenGothel]

Chiming in here but it could be possible your not dealing with steroid dependency but Asacol intolerance. With my DD Doctors questioned if it was dependency as did I bc she would flare once weening low a behold it was the Asacol causing colitis like symptoms. In the end she weened just fine. Hoping you have the same outcome. Make sure the ween is slow. Rowans ween was 2 full months long.

I think VSL works best for colonic IBD usually. Mostly helps with getting the nutrition in for it protects the track and allows for better absorption. I don't think it would halt symptoms just help more with not having bad bacteria in the colon. We use it and our insurance covers it here though I needed prior authorization. More for J-pouches and UC than Crohns. Though it is thought to be expensive no other probiotic has as many live bacteria as VSL, so you get what you pay for in my opinion.