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My 10yr with Crohn's considering Stem Cell Treatment

S

smahan

Hello,
My son was diagnosed with Crohn's at age 10 in Dec. 2009. He has been through such a horrible time. When he was diagnosed he apparently had had Crohns for awhile. His intestines/stomach had lots of ulcers and strictures. He told the Doctors that "he didn't know his stomach wasn't supposed to hurt like it did". Broke my heart because he had never complained before..
They immediately put him on Remicade which started the down hill spiral. He developed rashes,sweats,migraines, etc. The worst side effect was he developed RSD (reflex sympathetic dystrophy) which is a nerve condition. After several months of begging the Doctors to take him off Remicade, because he could not walk, we took him to Emory where they put him on Humira. That did ok for awhile with them pretreating his injections with prednisone and zyrtec. The side effects returned with a vengeance. His RSD flared up and his nerves started misfiring all over his body. They tried all sorts of medications to help ex. Neurontin/Lyrica. He missed his entire 5th grade school year. After hospital stays every month this year the Doctors finally took him off Humira to quite his nervous system. They felt his nervous system needed to quite down before they could try another Crohn's medication. They feel he is allergic to the Biologics but they don't think the next tier will work for him. (6-mp, methotrexate) They finally just put him on 6-MP hoping this will help until the Stem Cell Transplant becomes available for pediatrics. I am very nervous of the thought of the Stem Cell Transplant but my son needs his life back. He was such an outgoing, vivacious,happy kid who is now withdrawn. We just got back from 3 weeks at the Cleveland Clinic Pediatric Rehabilitation center for his RSD. His leg had atrophied and they needed to teach him how to cope with the pain.
This has affected our entire family. I have 2 other children that are 16 and 14 and had to watch their brother suffer.
If anyone has gone through the SCT and had results, I would love to hear from them.
Thanks
 
muppet

muppet

Wow. I wish you all the best with your son. It's incredible that his condition got so bad without being noticed or diagnosed. Didn't he go to the bathroom an awful lot?

Remicade is "the big guns" but they probably felt it was best because his condition was so advanced. It's terrible to hear about the strong side effects he experienced. How long was he on the Remicade for? You said several months.

One thing you'll learn with this disease is that you have to be your child's advocate. You've got to question the doctors. You've got to do your own research. You've got o observe your child's symptoms and call the doctor out if or when you think he's making a mistake. They're not perfect. In fact, they're far from perfect.

It sounds like your son would be a candidate for clinical trials. Definitely talk to your doctor about the SCT and what trials are going on, and if he's not responsive and doesn't do some footwork for you, FIND ANOTHER DOCTOR as soon as possible. Don't accept laziness or a cavalier attitude.

I know he has strictures, but has he got fistulae? Some prednisone and 6MP might very well help quiet down his Crohn's, but I'm not sure about the RSD and whether it complicates normal Crohn's therapies. You guys went for the big guns first. There's probably not that much harm in trying the "smaller guns" to see if he gets some relief with less side effects, but if you go with 6mp he'll need Prednisone while 6mp "ramps up" in his system and starts to work. You may also have to deal with another hospitalization if the drug doesn't work. In my house we sort of take hospitalizations as part of the deal.

Again, good luck. I feel for you!
 
S

smahan

Hi
My son did start going to the bathroom a lot but he said his stomach didn't hurt and he didn't have diarrhea(which he did). I figured since he said it didn't hurt, things were ok. I started to notice weight loss and took him to the dr. They first thought he had Giardia but I pushed for more testing. When they finally admitted him because of a 10lb weight loss in a month the Drs. found ulcers in his mouth. I was floored since he never complained about them. He said he thought it was normal.
The Drs. felt we had no choice but to start with Remicade. I didn't want to so we flew to the Mayo in Minnesota for a second opinion and they agreed to start Remicade. He was on Remicade from January 10-May 10. He started Humira in June 2010 until June of 2011. He just started 6mp but haven't done the prednisone yet because they are watching his bloodwork. He had put on so much weight from all the medications before they don't want to start it if possible. The drs. are not optimistic about 6mp but we are trying. Our Emory Dr. says we are in a pickle.
He is already starting with some symptoms;diarrhea several times a day, not eating, and fatigue. His blood work is still ok which is confusing.
My heart breaks for him because he just wants to be able to play and feel good.
 
muppet

muppet

6MP without some sort of "gap" drug like prednisone to get things started sounds very risky, in fact almost a recipe for failure, to me. Especially if he's currently symptomatic. Unless he's obese, weight gain is a secondary concern in my opinion. I'm no doctor, though, and I can only go on what's in your posts.

Major kudos to you for getting him to the Mayo Clinic and pursuing good treatment.
 
xJillx

xJillx

Your Story Forum Monitor
Hi and welcome! Your story has me nearly in tears. It upsets me to hear a 10 year old suffering so. How soon do the doctors you have been working with think stem cell transplants will be available to children?

One memeber, Mr. Ziggy, had a successful transplant. Read his journey here.

Also, another member, effdee, is going through the process right now. Follow his thread and links to his blog here.

I hope this option will be available to your son soon. Please keep us posted!
 
Jennjenn

Jennjenn

Hi welcome

It breaks my heart when I read of a little kid suffering from this. I really hope that the 6mp works for him, and that the stem cell option becomes available for pediatric patients.
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Welcome, my son was also dxed at 10 in Dec.09 but that's where their similarities end. I'm so sorry for him and you!! I hope you find comfort in Ziggy's and Patrick's SCT threads. They do give us hope for the future!!

ThanksP...thanks for the link! I don't recall bone marrow being mentioned in Ziggy's thread. Is this a different type of SCT?? Fascinating!! I hope you are somehow able to follow her progress.
 
D

dannysmom

Location
NY
Hi and welcome. I am sorry to read about your son and hope he gets helpful treatment soon. My son was also a happy outgoing kid, with 2 older siblings too. Health issues do impact the entire family. Those SCT links seem real promising. Good luck!
 
tichard

tichard

How is your son doing now? My son was diagnosed at nine with Crohn's and EE. He is on Remicade, Apriso, tons of probiotics and some alternative treatments. He has had three flares the first being in April 2011 and went undiagnosed for one year. His least flare in Sept 2012 put in the hospital for seven days and he missed eight weeks of school. He is doing well since starting Remicade. Sending prayers to your son.
 
KWalker

KWalker

Moderator
Hello tichard, I just wanted to give you a heads up that this thread is two years old so I'm not sure if you will get the answers you're looking for.
 
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