Could Remicade be right for 9 year-old son?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

GeorgiaRN
New Member


Date Joined May 2008
Total Posts : 5
   Posted 5/1/2008 9:06 AM (GMT -7)   
My son has been on Imuran for about 1 year. After trying several approaches, his doctor now is considering Remicade. I am nervous about going that route. Does anyone have any suggestions on other options, particularly diet? I know about the Maker's Diet and the Specific Carbohydrate Diet, but don't think it is something that a 9 year-old can do, at least not my 9 year-old. I would love any suggestions or advice... Had anyone had good results with JuicePlus?

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 5/1/2008 9:29 AM (GMT -7)   
Welcome to HW
I know you will find this a great place for caring and support
The ppl here are very aware of what your son or what ppl with CD goes thru and it makes it so much easier to share day to day hurdles ,joys ect........

I am sorry I am not able to answer your questions about the Cade and the juice you asked about I am not on either
I know someone will come along and answer this better than I for you
I just wanted you to know there are other Mom's on here facing situations with thier kids with Crohns
Again
Welcome and stay with us

LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
                               FIGHT the FIGHT with all YOU HAVE
 
   
 
                   
 


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 5/1/2008 9:53 AM (GMT -7)   
Glad you found us and welcome! My 2 cents is to really, really consider one of the diets. My son was 15 when we started. I know it would've been more challenging if he were 9, but kids will inevitably do it if that is the way you are cooking and if the junk food is removed and replaced with alternatives. I think I'm safe in saying that most doctors don't subscribe to dietary changes--ours didn't--but I'm thankful that something seems to be working. (For a younger child I would recommend SCD because there are more resources, recipes, baked goodies, etc. available. You would be pleasantly surprised!)

Good luck and again, welcome to the forum!
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)

Post Edited (EMom) : 5/1/2008 11:35:43 AM (GMT-6)


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 5/1/2008 10:25 AM (GMT -7)   
Thanks EMom for your nice Welcome and input

LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
                               FIGHT the FIGHT with all YOU HAVE
 
   
 
                   
 


RedAdmin
Veteran Member


Date Joined Aug 2003
Total Posts : 1017
   Posted 5/1/2008 10:42 AM (GMT -7)   
I have a nine year old daughter and if she was dignosed I would not hesitate to put her on Cade. I have been on it for over 7 years and it has given me my life back. I know there are a lot of people who control with diet, I am not that disciplined.

Good luck.
Red (Lee Ann)
 Happy Bunny 
      When life gives you lemons, squirt juice in your enemy's eyes.


GeorgiaRN
New Member


Date Joined May 2008
Total Posts : 5
   Posted 5/1/2008 10:46 AM (GMT -7)   
Thanks for everyone's comments! I really appreciate it. I am so torn as to what to do....
Georgia RN
Living for Christ
 
Mother of 9 year-old son with Crohn's disease. Diagnosed in 10/2006. Took Pentasa with no results. Started on Imuran 2/2007. He has been off and on Prednisone for the past year and increased Imuran 2 months ago. Continues to have a poor appetite, weight loss, fatigue, and stomach pain.


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 5/1/2008 10:49 AM (GMT -7)   
There is one dietary option for Crohn's that has been tested in clinical studies and does work well for children, and that's total enteral nutrition (also referred to by the names of the different types of enteral nutrition formulas as elemental, semi-elemental, and polymeric diets). It is as effective as steroids in children. The downside is that it involves complying with an all-liquid diet for several weeks to induce remission. It can then be used side by side with a regular diet to maintain remission longer. Doctors don't tend to mention it in the U.S. because they think it's hard for people to comply with it, but they are generally willing to prescribe it if you ask.

If you want to know more about it from parents of kids who have used it, you could ask on this message board for parents of children with IBD: http://www.dragonpack.com/ibdsupport/parents/

samsmom
Regular Member


Date Joined Nov 2005
Total Posts : 77
   Posted 5/1/2008 12:19 PM (GMT -7)   

My son who is now 10 has been on Remicade for over 2 1/2 years now.  He responded immediately and is doing fabulous.  There is no way he could stick to a certain diet at the time being..... 

  He goes every 12 weeks.  It has given him his life back.  He is happy and painfree.  He plays all sports.  Does excellent in school and is just thriving.

 

  I know how scary it is to have him on this med, but his quality if life is where it should be.

Debbie


GeorgiaRN
New Member


Date Joined May 2008
Total Posts : 5
   Posted 5/1/2008 1:06 PM (GMT -7)   
Debbie,
Thanks so much for the reply. Your response is such a relief! Has your son had any side effects from Remicade? Have you made any changes in diet at all? Is the infusion given at the doctor's office or an outpatient center? Did you use a numbing cream to start the IV? :)
Tina
Georgia RN
Living for Christ
 
Mother of 9 year-old son with Crohn's disease. Diagnosed in 10/2006. Took Pentasa with no results. Started on Imuran 2/2007. He has been off and on Prednisone for the past year and increased Imuran 2 months ago. Continues to have a poor appetite, weight loss, fatigue, and stomach pain.


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 5/1/2008 2:03 PM (GMT -7)   

They may do things differently with with kids, but I've never had a numbing cream with my IV.  Once you get past the initial pinch, it doesn't hurt at all.  I go to my doctor's office, where the same nurse does the infusion every time.  Ask if you and your son can take a tour of the infusion room/center ahead of time.  That might make you both more comfortable.


samsmom
Regular Member


Date Joined Nov 2005
Total Posts : 77
   Posted 5/1/2008 7:33 PM (GMT -7)   
Tina,
   My son has had no side effects at all!  He pretty much eats whatever he wants.  He has always been a picky eater, but he does eat healthy.  He has his treatments done at the Cleveland Clinic.  He does use the emla cream.  He is able to have it without, but it is his routine so the nurse just automatically puts it on. He usually draws while having his treatments or we will watch a movie.
 
  It breaks my heart that he has to go through this, and we all know we would take it all away in a heartbeat if we were able to.  But as long as he is feeling good. that is what matters most.
 
Debbie
 
 

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 5/5/2008 9:18 AM (GMT -7)   
I'm all for anything that brings people relief from this dd.  But the thing to remember is that when we're prescribed meds "off label"- meaning for uses that are not currently FDA approved- it's often difficult to get the insurance company to pay for it.  I know absolutely nothing about LDN.  It could be the best, safest option for many of us.  But until it's FDA approved to treat Crohn's, it may be too expensive to try.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 5/5/2008 10:12 AM (GMT -7)   
LDN is cheap cheap cheap. Previously posted here: $10 a month.

And Ingrid is right about concerns about MAP. Our pediatric GI/Crohn's specialist at Children's in St. Louis said "I no longer believe Crohn's to be an auto-immune disease." He would not, however say what he thinks it is; but seriously, what is left? Infectious, that's what! And for some reason, folks with CD are unable to fight the MAP infection (genetic immune dysfunction?). It's *terribly* difficult to kill--currently standard antibiotics in triple or quadruple format do help in many people, but are not a sure thing. Maybe eventually an effective antibiotic will be developed, but anyone who has success will still have to avoid further MAP re-infection, regardless of how they achieve remission because of what seems to be a genetic inability to fight the nasty bacteria.

Go to youtube and watch the interviews of Dr. John Hermon Taylor and it will help you understand. He allows (if I remember correctly) that biologics (like Remicade) *may* have *some* sort of effect on MAP in *some people*, but again, not a sure thing. For me, not worth the dangers unless we are up against a wall with *absolutely no other options.*

So our solution (until there's a cure) is to starve the MAP bacteria by not feeding it (SCD or Maker's Diet), and to introduce as many "good guy" competitors (probiotics) as humanly possible. This is where a probiotic supplement and/or home made yogurt comes in. Starve out the bad guys, introduce the good guys daily, and boost the immune system (by removing junk from the diet). This is WAR!

And LDN appears to boost the immune system (remember, CD is no longer believed by all experts to be auto-immune, but rather a dysfunction--an under-active immune system). If it is boosting the immune system, then it doesn't seem much of a stretch to assume it may be helping the body kill MAP. My son currently seems to be in remission. This is the only reason we have not yet tried LDN. It is first on my list if we need it.

http://www.ldninfo.org/

http://www.gazorpa.com/
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)


BensMom
Regular Member


Date Joined Mar 2006
Total Posts : 57
   Posted 5/5/2008 2:26 PM (GMT -7)   

Hi,

My 13 year old son has had Crohn's for 2 years, and like you I struggled with the decision to put him on Remicade.  However, after his colonoscopy in March it was very clear that the 6-MP, Asacol, and other supplements I was giving him just weren't working, and he is not willing to follow a drastic diet either.  So, he had his first dose of Remicade last week.  Although it is too soon for us to tell if it will work for him, I just wanted to let you know that the whole procedure itself was actually no big deal for my son.  We were at the infusion center (located in the children's hospital) for 6 hours from start to finish.  It took about an hour for the initial forms, tour of the center, etc.  Then an hour for the pre-meds, 3 hours for the Remicade, and they made us stay there an hour after to make sure he had no reaction.  My son actually had fun while he was there!  There were 2 different video game systems, tons of DVDs to choose from, air hockey, board games, and a volunteer there doing crafts with the kids.  The iv was on a pole with wheels, so he could move around as he wanted.  They even gave us a free lunch which is provided by donors every day.

Please visit the www.dragonpack.com website as Writer suggested.  There are many parents on there who have all tried different things with their kids and can offer lots of good advice.

Best of luck with your decision.

 

 


Nancy
 
Son Ben, 13, diagnosed 3/06
Remicade, Asacol, Multi-vitamin


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 5/5/2008 8:01 PM (GMT -7)   
where can I buy the yogurt machine in canada? Online? Do you have to add cultures to it and what kind?

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 5/6/2008 5:10 AM (GMT -7)   
Roni said...
where can I buy the yogurt machine in canada? Online? Do you have to add cultures to it and what kind?


The brand that everyone seems to agree is best is Yogourmet. I recently ordered mine from Lucy's Kitchen--simply called the 800 number. I gave my order to a really nice lady who knew Elaine Gottschall personally. Here's the link, click on "yogurt maker" on the left:

http://www.scdkitchen.com/

I purchased my "starter" from them, too, but health food stores and places like Trader Joe's carry it as well.

I just stumbled across this page. If you scroll down near the bottom it gives a supplier in Canada:

http://www.scdiet.org/2recipes/yoghurt.html

Hope this helps!!!:-)
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 06, 2016 1:25 AM (GMT -7)
There are a total of 2,733,393 posts in 301,111 threads.
View Active Threads


Who's Online
This forum has 151251 registered members. Please welcome our newest member, Danann.
225 Guest(s), 1 Registered Member(s) are currently online.  Details
Girlie


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer