Can't handle Peptamen 1.5 - is there anything else that's easier to take?

[Life Is Beautiful]

Hi everybody,


I recently started transitioning to a liquid/elemental diet. I was put on the vanilla Peptamen 1.5 as replacement for my meals. It tastes horrible but I was actually able to get it down pretty quickly.

The problem is that the Peptamen is giving me some serious side effects, including intensified headaches, fogginess, heart racing and out of rhythm, and intense pain. Last night, I experienced some of the worst pain of my life after downing a box of Peptamen. All of the pain I described above, plus a racing and irregular heat and eventually I just passed out on the couch. Has anybody ever had any experiences at all like this after taking Peptamen?

I spoke to a clinical dietitian about alternatives to Pepatmen and she gave me several options but didn't have much to say about any them. I'm trying not to commit too much money to a product I may not be able to tolerate. I'm also running into a problem where the pharmacies won't break up the cases into smaller units. This means I'd have to spend $200 for a case of some formula that I can't say for sure how my body will react to.

Here's some of the nutrition therapies that my dietitian recommended as a potential replacement for the Peptamen:

Vivonex (recommended by the dietitian)
Vital HN
Peptamen Jr (pharmacist can break this up into individual units)
Elecare Jr (pharmacist can also break this up into individual units)


So I have a two part question, then.

1. What is the most broken down, easiest to digest, elemental nutrition forumla available on the market? In addition to that, I still need to consider taste and potential side effects.

2. Can any of the formulas be broken up into lots that are smaller than a case? The pharmacist up here gave me a couple but I was hoping for ways to get a a hold of others.

My only other option and probably inevitable is her recommendation for a Central line IV for nutrition to bypass my intestines entirely, since they are not absorbing, functioning correctly, and will most likely be removed. I also have SMA Syndrome and this is a likelihood considering that. What is everyone's experience with this?

Thank you everybody. I have been reading the board and learning so much new information. I appreciate any and all help!

 

[jlm]

I was on tube feeds when I was younger and took peptamin. Didn't have any of the problems you experienced. Currently I have a port and do TPN 5 nights a week. It's pretty simple I do it at home all on my own. I still work full time and have a pretty regular life

 

[Life Is Beautiful]

Thank you for your reply. I am glad to hear you didn't experience anything negative from the Peptamen. My body is in such a state of extreme starvation so it may be a bit much at one time for it to handle. It's one of many theories.

Where is your port at and have you had any trouble with infections? How did they determine what formula of proteins, lipids, electrolytes, etc in your TPN fluid?

I admire you, as I see you have been through a lot. I hope you are doing well and thank you again for your response.

 

[Tired]

Vivonex is the most broken down of the list, it has no proteines, instead it has amino acids. But the taste is really, really bad.

 

[Life Is Beautiful]

Tired, thanks for your response. Maybe I will then look for something a little less broken down but a little more easy on the taste side. The Bariatric Peptamen I could not drink it tasted so horribly (and had fish and anchovies in it as well) but the Peptamen Vanilla I got used to; my body just doesn't respond well to it.

 

[SarahD]

Were you drinking the liquid through a straw LIB? When I was on a liquid diet I found that drinking through a straw would give me trapped gas and it was one of the most painful things I have ever experienced, and that's saying quite a lot as I get pretty awful pain with my Crohns sometimes. I think it would probably we worse if you're trying to gulp the drink down quickly as you'll likely take in more air. It's just a thought anyway.

Depending on how recently you started the liquid diet may be able to explain the headache and fogginess. It can happen in the first couple of weeks but should settle down. I'm not sure about the racy heart.

I'm in the UK and used Elemental 028 (I'm not sure if this is available where you are) which comes in a variety of flavours and is completely broken down into amino acids and simple sugars. I enjoyed the taste and I'm super fussy, but there are others who hate it too so it really is down to personal preference. Is your dietitian able to give you some samples of the different drinks available? Or perhaps contact the manufacturers directly to see if they can send you some samples? It seems crazy to spend that amount of money on something you might not be able to tolerate, though the same is true of any prescribed medication.

I hope you manage to find something that works for you.

Sarah

 

[happy]

Life is Beautiful,
I am sorry to hear that you are struggling so much. I used VivonexPlus. It does taste terrible but I diluted it by half for the first while to get enough liquid throughout the day and to tolerate the taste.
I am wondering if what you are describing is from the malnourished state that you are in. Have you had your electrolytes tested? You could be dehydrated. I would be sure to have had some recent blood work before using EN exclusively. It may be that you need immediate nourishment like TPN rather than waiting to try out formulas.

I also had to buy full cases of formula. Very expensive. Some children's hospitals may have smaller amounts that you could purchase to try out various flavours. They usually have a pharmacy and store on-site where they sell the formulas.

Good Luck. :goodluck:

 

[my little penguin]

your GI should be able to get you samples-
NEocate
or e028 splash is another options
splash tastes bad but drinkable
call neocate and they will send a six pack with 2 of each flavor
https://www.neocate.com/shop/p-24-e028-splash.aspx

 

[maile]

Are you sure it's the formula that is causing your racing heartbeat? My daughter also had a racing heartbeat (tachycardia) but the doctor said that it was caused by her being anemic. In a rested, sitting position her heartbeat would be 100 or more beats per minute.

 

[jlm]

My port is on my right side near my collar bone. I haven't had any problems with infections. But once upon a time I had a central line that got infected and I ended up septic and in the ICU for 5 days. My TPN is regulated entirely by my dietician. I have blood work every couple months and they make adjustments where they see fit. We both agree I'm at a healthy weight right now so they don't mess with the calories I take in. I've heard TPN can be very expensive in the US with it costing up too 1000 a bag. I use 5 bags a week plus a ton of othermedical supplies. I'm not sure how true that is. I have no idea what mine costs because I live in Canada.

 

[Tired]

Are you sure it's the formula that is causing your racing heartbeat? My daughter also had a racing heartbeat (tachycardia) but the doctor said that it was caused by her being anemic. In a rested, sitting position her heartbeat would be 100 or more beats per minute.

I had the same problem when I had bad flares and was anemic.

 

[my little penguin]

Also remember 1.5 peptamen has a more concentrated formula .
Some just can not tolerate the higher concentration and can only handle the regular 1.0 peptamen .

 

[Spooky1]

Perhaps it's the change of diet. Have you cut caffeine, sugar and other carbs? this might cause reactions. Also, i'm wondering if you're swallowing too fast. If I swallow mine then i'm on the loo within 5 mins. I have the liquid feed through a pump at 50mls per hour. Why hasn't your dietician recommended a nasogastric tube to you yet? it seems strange.

Bug good luck though

 

[Life Is Beautiful]

Hi everybody,

Thank your for all of your helpful advice. I did read about the straw issue in other posts and tried the Peptamen without it. Unfortunately, I still had the same reaction, but its still really good advice.

My nutritionist told me that Peptamen was probably too complex for my body to break down, especially in my state of malnutrition that my body has become accustomed to. The Peptamen 1.5 was too much of a shock to my system in that high of a concentration. Plus, Peptamen is derived from whey protein from dairy and the nutritionist was also concerned about lactose intolerance.

My nutritionist has strongly recommended that I start IV nutrition. She has not been pushing too hard for a feeding tube because of the possibility of infection and that I am in such a bad state of malabsorption that using nasogastric tube would not be effective, since I would still be missing the absorption of most of what passes through my intestines. Using the elemental nutrition by mouth is just our effort to avoid having the port put in, but the longer I go without finding a good match, the more likely the IV nutrition will be.

But just from reading these posts here and in other threads, I am leaning toward the following:

Elemental 028
Vivienne
Vital

My pharmacist told me that Vivonex and Vital are essentially the same formula from two different companies (Nestle vs Abbot), and I have read some success on here about Elemental 028, which seems like the best of a bunch of bad options with respect to tasting terrible.

If anybody has any options for better taste or more formulas, please let me know. I've also read a lot on forums here and elsewhere about people with intolerances for maltodextrin, a key ingredient in just about all of these formulas. I'm pretty much sensitive to everything and worry about going through all this trouble only to put my body through another episode.

Are there any forumlas without maltodextrin in them to add to my options?

Thank you everybody for all of your help.

 

[Life Is Beautiful]

I had the same problem when I had bad flares and was anemic.

Yes, this would also make sense - I am completely untreated so far with any medications or surgeries and am also anemic.

 

[Life Is Beautiful]

Are you sure it's the formula that is causing your racing heartbeat? My daughter also had a racing heartbeat (tachycardia) but the doctor said that it was caused by her being anemic. In a rested, sitting position her heartbeat would be 100 or more beats per minute.

Yes, we are very positive. Even had the home health nurses here to witness this themselves. At my point of what they call "starvation mode" my heart rate and blood pressure are extremely low (heart rate 40 to 60 - usually over 100 for resting) and BP has been 56/38 with the highest systolic without Peptamen being 90 with pain but usually around 60 and the diastolic highest at 55. When I drink the Peptamen, my heart rate goes even more irregular and into 130 to 140 and my BP skyrockets. We have tested sitting, standing, and lying down repeatedly.

 

[ralph68]

My wife was switched from the peptamen 1.0 to 1.5. She told me it was thicker and nasty. So i tried it, it was very nasty . the 1.0 is less concentrated and tastes much better. It is very expensive, go on Ebay and Bid on the cases when you can, I have gotten cases for as little as $50 including Shipping. We are having her doctor switch her back to the old one, the 1.0 , because she tolerates it so much better, hope this helps.

 

[my little penguin]

Never buy formula from eBay etc..,
You do not know how the formula was stored
If it wasn't stored properly you could get very sick .

 

[Spooky1]

I too have not tolerated the thicker liquid feeds. Does she not have a nasogastric tube at all, even if she syringed the food in?