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[johnnysmommy]

Hi! I am new to this board, but not new to IBD. Our journey started almost two years ago when my son was two, and we have been on one heck of a roller coaster ride since. After going through most of the medications, and several hospital stays, we still haven't achieved any type of remission, or relief for my son. My son is getting Remicade Infusions every 4 weeks, and we just doubled his dosage. :-( I am hoping this will do the trick. Hoping.......

 

[AZMOM]

Welcome, Johnny's Mom, to our Motley Crue. We're glad you are here but sure hate to hear that your son isn't responding to Remicade. Is he taking anything else?

Julie

 

[kimmidwife]

Hi johnnysmommy,
Just wanted to welcome you. We have had a rough roller coaster ride as well. what other meds have you guys tried?

 

[johnnysmommy]

Thank you so much for welcoming me! I have tried for so long to find a website like this, and I am so relieved to finally be here!!! Sometimes it is so hard for others to understand the highs and lows of this disease, and the emotional toll it takes of us. Currently John only takes Remicade, and Azathrioprine (sp?) along with a multi-vitamin everyday. If this dose of Remicade doesn't work, then we will have to start Methotrexate. :-( I am not excited about this. I can see myself having to chase him through the house and pulling him out from under whatever he can find to give him the "poke." UGHHHHH... This disease just sucks!!!

 

[Dexky]

Welcome! How long has he been on Remicade? I hope the upped dose gets him some relief but you don't seem convinced.

How old is he? Was he ever on prednisone? Did it give him any relief? Have you discussed Enteral Nutrition with his GI? Sorry for all the questions but there's so much info that must have built up in two years. Just trying to get a clearer picture of Johnny's journey. Good luck!

 

[imaboveitall]

Hey there :soledance:
Another tiny one...wow. There's a new thread from a mother with TWO under age 5 w/IBD. You guys break my heart.

I'm starting to sound broken record-ish but please look into enteral nutrition if you haven't yet. Several on here on it with excellent results including Violet who managed 3yr drug free with it as only treatment.

Nice to "meet" you

Julie

 

[johnnysmommy]

Thank you! I appreciate all of your responses. John just turned three when he was diagnosed. Since his diagnosis he was been on: Sulfasalzine (sp?) at two different times, Steroids(for two years straight, finally weaned off around Thanksgiving) Flagyl, Vancomycin (sp?), Pentasa, Azathriprine(sp?), and now Remicade. He started Remicade on October 1st. He went through the initial treatments very well, but as soon as we took the steroids away, I think the success of Remicade went with it. :-(
We just met with his doctor last week, and our plan is to up his dose of Remicade, start Methotrexate, if that doesn't work, start Nutritional Therapy, and if that doesn't work, then surgery. UGH!!! The thought of it puts a pit in my stomach.

 

[imaboveitall]

Yep, I walk around with that "pit".
Do investigate enteral nutrition. Yes, I sound like a zealot, but it helped Violet so much and is harmless, I cannot help but wish all kids could use it.

Much understanding; while V was 10 when dx w/IBD, she had pretty scary asthma from ages 2-4 so I know how it feels to be dealing with a tiny kid who needs treatments etc. Not fun. :voodoo:

 

[Dexky]

Wow, he's been through a lot mom! I suppose you mean EN when you mention nutritional therapy. Good luck with whatever you decide!

 

[izzi'smom]

Hoping that the increased dose helps...has he had HACA levels drawn? Izz failed Remi (after increasing her dose and going every 6 weeks) and I sort of wish I had had her bloodwork drawn earlier as she had developed antibodies and it wasn't helping her. Hope you're enjoying your steroid-free time...can't live with them (or without them) We finished weaning about a week ago but haven't been off them for more than a month since diagnosis. We do Humira shots now...and she does surprisingly well!

 

[Ang]

Hi, I’m also new. My son was diagnosed with UC also at the age of two, after suffering for 6 months and almost dying. He is now 5, and in a remission. I put him on one hell of a strict diet. I am not saying that the diet caused his remission, but I believe to my soul that it helped in the management of the UC. His bowel still plays up with stress and flu, but on the whole he is a lot healthier than when he was diagnosed.

Its tough having a child suffer :-(

 

[Tesscorm]

I'm so sorry to hear that your little boy has been through so much already! I hope something can bring him some relief and into remission soon!

My son is also on EN, it has been his treatment since diagnosis in May. So far it seems to be controlling his Crohns and he has not required any other medication (except an antacid, Nexium). Please do look into this. It is risk free and provides all/most of the nutrition he needs. My son did the initial six weeks on the formula only (no food) and since then, has added back all foods but continues with the formula on a maintenance level.

Good luck. :ghug:

 

[DustyKat]

Hi johnnysmommy and :welcome:

I'm so sorry to hear about your little guy and it breaks my heart to think that he hasn't been able to reach remission yet. I so hope doubling the dose does the trick, bless him. :hug:

I am assuming he has Crohn's? If so, where is it located?

Does he take any supplements?

Sorry about all the questions!

Dusty. xxx

 

[Crohn's Mom]

Hi JohnnysMom and Welcome !
:soledance:

I'm so sorry to hear your son is having so much trouble reaching remission. I hope the Remicade does the trick soon.

Also welcome to Ang
I'm glad your son is doing so well right now ! Great to hear and hope it continues for a very, long time!

Hang in there mommas ! We're all here for you :heart::heart:

 

[Ang]

Hi everyone

What is EN?

Sorry if it's a dumb question *blush*

@ johnnysmom, I had Hayden on a gluten, dairy and yeast free diet for over a year. I also completely removed red meat and bad fats from his diet. Hayden also has probiotics, omega oils, iron supplement, aloe vera juice and the omega oils. He was on rice milk as well.
I once found a "diet" on the net called the anti inflammatory diet. It was designed for MS peeps, but I also tried to stick to the basic principles of that.
One thing to remember is that Generally the IBD suffers need more protein.

 

[Sascot]

Hi, sorry your little one is suffering. I have to agree with alot of the others - EN is definately worth trying. It is basically a liquid diet which allows the bowels to rest and also provides nutrition. My son was put straight onto Modulen as I was told that it also has an anti-inflammatory agent in it (which alot of others don't).
It is tough not being able to eat (it was 8 weeks exclusive to induce remission) but it has no side effects that I know of. My son was allowed 7up, foxes mints and sugar free chewing gum which he had at various times through the day to break up the boredom of not eating. If he doesn't like it you can get the NG tube put in (ours was just kept in all the time for the 8 weeks).
Good luck, hope you get something to help
Ang - I used to be from Jo'burg!

 

[Ang]

Hellllooo Sascot

 

[tots]

I am so sorry for the suffering your son is going through ! It is very hard to whatch your child and not be able to help! This is a good place to gather info and vent!