Advice for sick toddler

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memorytheatre
Regular Member


Date Joined Feb 2008
Total Posts : 25
   Posted 2/18/2009 3:35 PM (GMT -7)   
Hi,

My son is two years old and is in a major flare again. He just got out of the hospital in December. Was in for over a month on a corticosteroid pict line last time. He's had to be hospitalized four times and has had at least four blood transfusions so far.

We were hoping the Imuran he's on now was going to work, but he's having the "currant jelly" bloody diapers again now.

His Crohn's (they think it is) covers all of his intestines.

The only thing that works is massive amounts of corticosteroids, but of course he doesn't grow on them and I'm worried about his bones and glaucoma.

I was wondering if anyone has been through this and if they had any advice. When he's not on 10+ mg's of prednisolone he is a mess. But he can't stay on it. We've done the scd, all kinds of supplements, probiotics, Sulphasalazine, and now 3.2 mg's of Imuran a day. We just finished a steroid taper three days ago and he's fallen off a cliff in terms of frequency and bloody poops. Our doctors try what they can, but it seems like we're running out of options.

Anybody have this thing so young and ever get it in remission? His last colonoscopy was so bad that the nurse cried and had to take a break. My son has had so much blood drawn and pokes and hospital stays that he doesn't cry when he gets a shot or blood drawn anymore. He deserves a chance to grow up, but this thing isn't allowing it.

Thanks

sassy28
Regular Member


Date Joined Jan 2009
Total Posts : 64
   Posted 2/18/2009 3:56 PM (GMT -7)   
I was diagnosed when I was 19, so I have not had any experience with the disease that young. I do know how hard it can be and my heart goes out to you and your son. I know there is another member on this site with a very young child with Crohn's, so I hope that she can give you more information.

hsmom
Regular Member


Date Joined Oct 2004
Total Posts : 35
   Posted 2/18/2009 6:28 PM (GMT -7)   
Memorytheatre,
I don't have any advice since I didn't have Crohn's till I was almost 18. However will keep your son in my prayers. I am sorry you guys are having to go through this with such a young little boy.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 2/18/2009 6:35 PM (GMT -7)   
Hello Memorytheatre,

Your story just makes me cry. I am so very sad you are going through this. I am praying for strength and peace for you and your family, wisdom for the doctors, and complete healing for your precious son. Please let us know how he is doing.
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/18/2009 6:40 PM (GMT -7)   
Hi Your little guy is young to have this disease.Was wandering if he has been tested for dairy allergies? If he is that sick wouldn't your Dr. have him in the hospital so he can get better care? I don't have the bleeding issues with my crohn's so not much help with that. Perhaps IV and liquids would help for now ,what is your Dr. saying is the next step in helping him? Wish I could be of better help to you .Hoping your Dr's will be able to help him..have they mentioned any other meds? I was wandering if at that age there are any vitamin supplements that they give young children. I know B-12 seems to be in shortage for alot of us with crohn's as well as other vitamins.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 2/18/2009 9:12 PM (GMT -7)   
I am so sorry for your little one and you!!! You might want to try this link. It's a forum/support group for parents of children suffering from IBD. Unfortunately it seems there are many parents of young ones there...

dragonpack.com
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/18/2009 9:38 PM (GMT -7)   
My God that's so horrible, I'm so sorry. Do they give biologics to 2 year olds? (remicade)
Low dose naltrexone?
Xifraxan (antibiotic)?

Just throwing out some things...
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 2/18/2009 11:45 PM (GMT -7)   
All I can offer is prayers. When I read your comments it made my problems a lot smaller and less difficult.

asc58
Regular Member


Date Joined Jun 2006
Total Posts : 83
   Posted 2/19/2009 7:02 AM (GMT -7)   
I am very sorry for what you and your son are going through. I know he has had alot of test ran but I hope they triple check him for C Difficle infection.  This stuff can give false negative test
and resemble crohn's flares.  I just went though the last year feeling terrible thinking it was only crohns when finally my doc found the c diff.  By this time the frequency, thick bloody stool and fever landed me in the hospital for two weeks.  C Diff alone is bad, but mix it with crohns disease and it's terrible.  Good Luck to you guys and our prayers are with you two.



Crohn's in the ileum for the last 35 yrs.  3 ressections, numerous attempts at fistulae repairs, just finished a battle with C Diff (that was bad), while recouping from C Diff, I had two PE's. IT'S GOING TO BE OK AND IT'S GOING TO GET BETTER!
RX: Coumadin, 6-mp, Zoloft
 
 


memorytheatre
Regular Member


Date Joined Feb 2008
Total Posts : 25
   Posted 2/21/2009 9:17 PM (GMT -7)   
Thanks for the kind words everyone. He just had a stool culture which found nothing. We're always looking for c diff with the amount that he's in the hospital. We have been tested for all allergies and even had him on an all elecare elemental diet for a few months when his condition first got real bad when he was 10 months old. The doctors hadn't seen this in someone so young so were slow to define it as Chron's or UC.

He didn't walk until he was 19 months.

We are trying to keep him out of the hospital again because we just got out and were hoping the Imuran would work. Our doctors felt pretty sure it would. But it hasn't. My doctors are trying to wait to see if the Imuran will work better because he just got over a cold and they said that getting sick sometimes causes short term flares for kids on Imuran. But the onset of symptoms this time was the same as with every steroid taper.

Along with the bloody stools he begins getting bloody noses, wheezing, coughing etc. All comes back together. On steroids none of it, some moon face and he doesn't grow. Which for a two year old is a problem. But everything else seems fine and normal, but of course he can't stay on the roids.

Thanks for your suggestions Rider fan. We have not discussed with our docs wether or not they give remicade to a 2 year old. We have an appointment this coming Thursday. But I would assume that if they do, it would be a next step. I hadn't heard of the low-dose nalrexone.

Anyway, we put him back on the steroids tonight because his condition was getting worse. Thanks again and if anything eventful happens I'll let people know.

Here's his blog. He doesn't look sick, but if you ever saw one of his colonoscopy's or his inflammatory numbers or diapers you'd know that he is a very sick little boy. I'm sure everyone on these boards understands what i'm talking about.

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 2/22/2009 2:05 AM (GMT -7)   
Hi, I am sorry your son is going thew being sick. My prayers are your son and family.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/22/2009 2:30 AM (GMT -7)   
memorytheatre, he is adorable! i'm so sorry and do hope the Imuran kicks in soon -- it does take awhile. 

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/22/2009 4:35 AM (GMT -7)   
Hi he is a sweetie and you look like a proud Mom. With the wheezing do they think he has asthma ? Just wandering if they said why he is getting the nose bleeds. I do know that those of us with the terminal ilieum removed it is one of the vitamins we need to supplement,that being said as it is a blood clotter wandering if he's absorbing that. Also B-12 is usually low in crohn's people. I have to get a shot once a month but it is important in the healing prosess. Have you tried a low roughage diet as well that might help him as it is easy to digest. Keep in touch as we will be looking to see how he does. Praying the Imuran kicks in for him.. he is a busy little fellow.. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 2/22/2009 5:16 AM (GMT -7)   
I'm very sorry to hear what you're going through. As "Trigirl" stated, all I can offer you is prayers. I certainly hope that he doesn't have Crohn's. IF so, again, I sincerely hope they find the appropriate treatment for him.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/22/2009 4:12 PM (GMT -7)   
Hi I was talking about Vitamin K Sorry forgot to write it down sometimes I get up or my teen talks while I 'am on here. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Miss3
Regular Member


Date Joined Sep 2008
Total Posts : 97
   Posted 2/23/2009 5:30 PM (GMT -7)   
I am so sorry to hear of such a little one with these problems. I can't even begin to imagine what you are going through. You should definately check out low dose naltrexone, it has done wonders for me thus far. It has way less sides than any other med I've ever been prescribed. Will keep your family in my prayers.
 
 
Good luck,
 
Miss
36 yr. old homeschooling mom of 3
Diagnosed Crohn's 06/08, then UC 08/08
Asacol made me worse, reactions to Remicade
Currently taking LDN, feeling pretty good
Probiotic, Omega 3, Digestive enzymes


daisyrambler
Regular Member


Date Joined Jan 2009
Total Posts : 126
   Posted 2/23/2009 8:52 PM (GMT -7)   
I also wanted to say that I am super sorry you guys are having to tho all of this. I also wanted to add that the imuran does take awhile to start workin ... i have sores in my nose and some times it make my nose bleed have you noticed if he has sores in his nose ??

hope everything works out for you !!
I will keep you and your son and your family in my prayers !!
good luck and God bless !!
> 27 year old female < 
 > Diagonsed with Crohns disease in 2000 <
 > In 2009 I was told my Crohns is Crohn's Colitis ~ they said it was in my rectum, colon and all through my small intestine <
 
 > Medication - pentasa(4000mg), imuran(100mg), prednisone(40mg 30mg 20mg 10mg), vitamin C, vitamin E, calcium+D, multivitamin, b-12, iron, and fish oil <
 
> I thank the Lord every day for my amazing husband and wonderful family <

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