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EN ?'s

E had his appt with his dr yesterday. He definitely will not prescribe LDN. He did a great amount of research though, so I will give him a kudos for that. He spoke with a special researcher at Chapel Hill. This researcher seemed pretty excited about the progress in trial studies with EN so my dr is open to this option.

I am having a difficult time locating it? What brand are you using? Is there a prescription brand available? I think insurance would help with it if there is, but I can't find a brand that is prescription. All I can seem to locate is Ensure.

Thanks
 

Tesscorm

Moderator
Staff member
My son used Tolerex by Nestle but, I think the more commonly used brands are Peptamin (Jr), Modulen, elecare (sp??), e028 (?).

I'm sure someone else will come along with more brands.

Is your son going to do 'exclusive' EN? Or using EN only as a supplement? My son did six weeks exclusive and it very quickly took him into clinical remission and alleviated some of the inflammation. He continued with EN as a maintenance/supplemental treatment (no drugs except antacid) and it maintained his clinical remission during that time. However, it did not eliminate all inflammation so, upon transfer to an adult GI, the new GI switched him to remicade. But, exclusive EN does have comparable success rates as steroids in inducing remission! Definitely worth trying!

Just out of curiosity, what were your GIs reasons for not agreeing to LDN?
 
Pepatem Jr is carregen free and Dr. would write a prescription for it and you get through a durable medical supply place (we used apria) that is the only way our insurance would pay. Will he drink it or go through NG tube? Our insurance would pay 100% for NG tube but only 80% since he drank it.
Jack did Peptide and did really well on it.
 

crohnsinct

Well-known member
My daughter just drank Boost and Ensure. It worked for her but I know it isn't as easily absorbed as the others. I guess it depends on where the inflammation is and how bad it is at the time. Our doc says there are two schools of thought. Start with the most palatable for compliance and if not tolerated work your way up to the semi elemental and elemental or start with the worst tasting but better absorbed and work your way down to the most palatable. Hmmm sound familiar..top down...bottom up.
 

my little penguin

Moderator
Staff member
You can order peptamen jr , elecare , neocate , e028 splash directly for the manufacturer without a script but in order for insurance to pay most need a script and use the durable medical equipment clause.
Keep in mind Ibd is classified as a disability for kids under ssi
So most medical assistance programs will be a a available to the child regardless of parents income.
MA will pay for formula but it needs to be ng tube I think.

Also EEN works as long as its exclusive or more than 80%
It also only works initially in mild cases and rarely works the second time.
So if you introduce food the inflammation comes back .

DS drinks peptamen jr and has for almost two years .
 
I was thinking he would just take it orally and be on a liquid only diet for 6-8 weeks? My doctor has no experience with this so we are feeling our way along and I am taking the lead. The problem I am encountering is that our insurance will only cover it if it cannot be purchased over the counter. I cannot find any brands that are script only. Obviously, it is cost prohibitive to purchase on our own. I cant spend $1500-$2000 per month on formula :(

Any thoughts?

As always, thanks.
 
Here is what we did:
Rx from GI sent to DME company (Apria)
Called insurance said I have a prescription here for Peptide coming from Apria Medical Supply. They also asked if I could purchase OTC and I told them no I could not go down to Walmart/Walgreens or wherever and pick up a case nor could I order online from them. So while you can get without a prescription you are still ordering from a medical supply company and not your typical retail store. When they asked if it was a nutritional supplement I told them 90% of his daily calories needed to come from the drinks and I have a letter of medical necessity (GI's office was working on the other end with insurance and had also placed the call and sent them a letter of medical necessity). Insurance needed name/number of DME so that they could call to get the correct codes. In the meantime Apria had called me about Rx/Order and they took all my insurance info down. So I guess between Apria and Insurance company they got all the codes worked out and I got a call from insurance company stating that since he was drinking and not receiving through NG tube they would pay at 80% which is what my insurance pays for prescriptions. Now all this took place over several phone calls and a couple of days with GI office/Insurance/DME.
Hope that makes sense.
 
Thank you. I called Apria and since they will not supply it without a prescription maybe this will work? I have a call into E's dr about faxing in a script.....fingers crossed :)
 
I gave my daughter Elecare Jr. and it helped a lot. I think it helped her achieve remission along with her 6MP. I bought mine on Amazon because it was affordable. I think if you drink it by mouth, insurance won't cover it. But if you do it nasally, I think insurance covers it....perhaps. Good luck.
 
The nutritionist at our GI office contacted Nestle and got us a case of Peptamen for free and some samples of the Splash. For some reason they did not have samples but could request they be sent to us by the company.

Hopefully the GI office can help you out. ((((Hugs))))
 

CarolinAlaska

Holding It Together
We went down this road last spring. We started off with Ensure (used prescription through the medical supply company). Jaedyn drank it exclusively for 3 weeks until she was having a lot of gas and it wasn't agreeing with her. She then agreed to do the NG tube as the Peptamen Junior wasn't palatable (according to her it tastes like vomit - which is understandable since it is predigested!). This agreed with her well and she did 5 weeks of NG tube. She then had come to the limit of her NG tube (had indwelling one - refused to do the nightly kind) that had to be replaced every 4-5 weeks. She decided to go back to drinking it, so we went with a 50-50 mix of Ensure Plus and Peptamen Junior (to make it drinkable). She has done this all summer. She has gained 20 lbs since last spring, reached a level of what the GI thinks is remission, but I'm not sure... She is doing fairly well, but still has no appetite...

Anyway, all the formulas can be prescribed, even the Ensure, through a medical supply company. For some using an NG tube gets it paid better.

There is an EN thread that you might find helpful in the treatment threads section in the sticky notes. There is also a tubes support group - even if she only drinks it - those gals have been doing this awhile and know the ropes.
 
My son did 7 weeks on EEN with Peadisure, he would only drink the chocolate and he was drinking up to 12 poppers a day! He had a follow up pillcam scope when he had finished and it showed his ulcers in his bowel had cleared up tremendously, it gave his bowel a "rest", and gave him nutrition at the same time. He actually put weight on!
 
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