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LJS

Joined
Feb 26, 2013
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Drumroll please... son is up 5 lbs!! woot woot!! he has only gained 1 lb in 2 years, so 5 lbs in 5 weeks is INSANE! We saw his doc yesterday and he is ecstatic!

For the summer we are going to keep things as they are, with EN, aza and allopurinol. We will do labs end of August and decide then what direction to go with respect to meds..

We had a great discussion about LDN.. the concern they have at Children's Colorado is that there have been no official studies done (ie, 2 groups, 50 each, one getting placebo, one getting LDN.. etc).. so while he won't say "never", he's pretty reluctant to move forward with it.. that being said, I did tell him that other ped GI's are prescribing it and he said he's willing to speak with any ped GI who has embraced LDN and prescribed it.. so I'm putting a call out there to you all.. if you have a doctor (ped gi) who is prescribing LDN for Crohns, would you pass me his/her contact info so that my doc can chat with him/her..

thanks!
 
That is fabulous news! Jack's GI was the one that suggested and prescribed. I'll PM you his info.
Jack is doing great on it, however I know he had some other patients on it who were not doing as well but the GI did not have any idea that it needed to be compounded in a certain way, use quick release naltrexone, and taken at night between 9-11 is best.
We will be one year on LDN as of June 30.
 
Thanks...I am so happy with the results thus far! My son has color in his face, looks healthy and actually has love handles! I know, 5 lbs is not a lot to most people (I gain that much in a night..LOL) but for him, it's HUGE!! He's basically at healthy weight now!
 
Great News on the weight gain. I want my son to do that. I'm frustrated with our meds. Had a question for Jacqui and you since you said you and your doctor had great discussion on LDN.

Jmrogers4 said:
That is fabulous news! Jack's GI was the one that suggested and prescribed. I'll PM you his info.
Jack is doing great on it, however I know he had some other patients on it who were not doing as well but the GI did not have any idea that it needed to be compounded in a certain way, use quick release naltrexone, and taken at night between 9-11 is best.
We will be one year on LDN as of June 30.
Click to expand...

Jacqui, Was wondering if your GI has any info on LDN side effects? I saw this post from MLP:

my little penguin said:
LDN is an opioid blocker ( used for drug / alcohol addiction)
Your brain naturally produces endrophines . LDN stops these for a bit .
This causes the body to increase the amount of endrophines .
The theory is when the endrophines are increased it reduces inflammation in the body as a result. ( haven't seen any studies yet )
Since endorphines are increased during sleep - side effect vivid dreams.

Our only concern with LDN was what effect blocking those endorphines regularly
Has on other genetic tendencies that come from over production of endrophines ( such as Tourette's,parkenson , bipolar, depression, alcoholism etc...) in developing brains of children long term.( again no studies one way or the other )
Click to expand...

Was wondering if your Doc had any info on this? Since he is the one that suggested it to you I just thought he must have knowlege of it. Thanks!
 
That is the biggest issue with LDN, lack of studies. Jacks doctor says regular dosage is 50mg and LDN is 4.5mg and it is my understanding that it shuts them off for 4 hours as opposed to regular dose naltrexone.
He says he doesn't understand all of it or how it really works I keep my eyes open for any new studies on it on all diseases in case there is something relevent but at this point it is one of those things like with all other medicines I had to weigh the known risks with the benefits and make a decision
Hope that makes sense feel like I'm rambling a bit
 
Kathy
There are not any studies as far as I could tell with kids long term.
So far only two small short term studies for kids .
Even humira does not really have long term studies for kids.
It was just a concern we had but since we were told ( by our gi )the studies that were done were on
Mild kids who just needed a little "nudge" we decided to try a different med at the time.
DS is running out of meds so who knows.

As far as weight /growth- have you seen an endo ?
Is there a reason why he hasn't tried an elemental or semi elemental supplement ?
We treat it as any other med ordered by the Gi .
DS 's weight and height would not be where they are now without daily peptamen.
He still drinks 750 calories a day - more if he is feeling poorly.
Our Gi didn't not feel strongly about it but after seeing the results is very pleased with the peptamen .
 
The reason I said elemental/semi elemental - if there is scarring or damage in the TI- elemental only uses the first few inches of the small bowel to be absorbed so as long as that is healthy the kid can gain weight = growth .
Whole proteins or food need more healthy small bowel and take more work which can be hard on a stressed out Gi tract .
Most gi's are happy if an Ibd kid is at the 25% for weight.

The way we see it - I may not be able to fix the nausea, stomach aches , blood or fatigue etc... Given the limitations of the meds but I can make sure he is normal weight and eventually height with a foul tasting /smelling formula since the window for growth is so short.
 
LJS - Great news on the weight gain!!! :D

Since the initial six week exclusive period, Stephen has been on maintenance (so, since July 2011) - he gets 1500 cal per night/5 nights per week. Don't want to keep repeating what many of you already have heard :redface: but for newer parents, Stephen's weight was 145ish before diagnosis, went to 120-125 at diagnosis and he is now at 170ish. I very much doubt he would have gained so much 'healthy' weight (much of it has been solid, muscular gain) had he not been getting the supplement. He is on Tolerex which is an elemental formula. Aside from the weight, nutrition-wise, I firmly believe he is the healthiest he's ever been.

Big supporter here of supplemental EN for as long as you can do it!
 
Based on my son's great results, we will continue with this for as long as possible. He is going away to camp for 2-4 weeks this summer. My plan for that time is for him to do 1-2 peptamen jr's per day, drinking. I've been playing around with different "additives" to make the formula more palatable... you can add chocolate syrup, etc.. but what I have really found he likes is adding half a packet of Frosting Creations to the formula.. made by Duncan Hines..in the baking aisles.. you can get all types of flavors for it.. and then they can drink it.. see what you think...
 
Good work on the weight gain! I'm glad your son found a way to drink them! I wish we could find a way for Jaedyn to drink them without mixing with Ensure, but I'm glad she is able to do that at least.
 
Thanks for all the great info. I'm just curious about LDN...you're right that its hard to find much on it. And definitely not from my GI. We're most likely going to stick with Humira/mtx right now. DS hasn't been in pain since starting Humira in 2011. We've been on mtx a short time...but DS seems fatter!! Also we've added Pediasure 1.5 cal.(From seeing it here, our GI was like, 'whatever' on that). Our GI keeps saying to me, EN isn't long term...he'll flare once he stops so we're not doing that. I used to really like her...now she's a source of frustration. My son likes her and we don't have options near us. But I'm looking!! Her support staff is great. The Pediasure doesn't taste bad but DS is a little resistant just cause its a 'have to' thing. He doesn't like 'have to'. Brian eats a lot but is 4'7" and around 68 lbs. His biggest symptom has always been his size. We're seeing an immunologist next week-Malgrave gave some info on immune defiency and I know my brother has that. He gets IGG thru infusion monthly. It can have gastro manifestations. It got me to thinking...maybe that's why he's not growing. His labs were normal and NO Inflammation from Jan 2011 to Aug 2012 with Humira biweekly...but no real growth. WHY? So I'm getting him tested. Endo guy is next. Husbands sister has UC...just got her whole colon removed and now her GI is saying, maybe you have crohns!??? Cause she's not doing so good with colon gone. Something needs to change cause I'm getting sooooooo frustrated.

I agree about long term facts for kids and Humira...Remicade has some long term stuff, but only 12 years or so I think. It works similar to Humira so it makes me feel thats kinda combined research.

LJS, I'm so happy for you that things are going so great. Yahoo!
JMRogers- 1 year of LDN and doing great for Jack is a celebration.
MLP - You always have such good info, you're a great researcher for all of us! :)
 
Last edited:
Brian'sMom,
I completely understand the fustration with the now growth/weight gain we were on that boat for 3 years! I really believe the Peptide changed that around. We started with 8 a day and probably didn't need to do quite that many a day in hindsight - he gained weight really fast! We went from 77lbs to 100 pounds in about 6 weeks and is now maintaining about 98-100 pounds on 2 of them a day.
Totally get the have to thing, first 2 weeks Jack was not doing it at all at school because it was "a pain". He still tries to get out of drinking them whenever he can even though he isn't bothered by the taste anymore.
Hope all goes well at the immunologist and he is soon growing and gaining weight
 
Am hoping S will replace his overnight Tolerex with a couple of Boost shakes daily while at university but, he can be so forgetful :( I'm not sure I can make it a 'habit' before he leaves. He rarely has breakfast as he wakes up 'full' and has said, calorie-wise, he'll start eating breakfast again to make up some calories, however... an Egg McMuffin with hash browns just doesn't equal 1000 ml of elemental formula on soooo many levels! :yfaint:
 
Hey LJS

As you know Grace is on LDN and full EEN.
My hubby and I researched ALL the drugs. We felt LDN was worth a try.
As far as the EEN. Grace will be on hers for a long, long time. Not only because of her Eos disease but because of her colitis and making sure she grows and gains like she should.
 
I've been talking to my doc about this, there is no real reason why you can't keep doing EN forever. The only thing I get extra is B12, but I've been on EN for almost a year now without any solids. (I drink it, I don't use a tube anymore)

The taste does get boring, so I throw in orange juice, or sprite, sometimes water with bubbles (don't know the English term).
 
try Duncan Hines Frosting Creations.. lots of flavors and you throw in half a package..my son really likes Cotton Candy and Chocolate Marshmallow!!

We will do EN "forever" although it's not exclusive.. son can eat whatever he wants, but he's a lousy eater!
 

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