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09-17-2011, 11:03 AM   #1
ben's rn
 
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Enteral Nutrition

New to this forum....so happy to have found it!
My 8 yr old son was diagnosed with Crohn's in July 2009 and was on prednisone and immuran for about the first 8 months....when his docs realized how severe his case was and that he was steroid dependent to stay in remission, they offered a choice of biologics (remicade/humira) or enteral nutrition. I am an RN who has cared for patients on tube feeding so I new we could do this....but new it would be a leap for Ben...having an NG tube taped to his face for a month at a time. But when I researched the biologics I couldn't believe the risks...frightening to me. So I decided to search for education on how to approach the tube feeding treatment....there was not much, even his docs wouldn't choose it for their own kids!! I finally found a book called, Beat Crohn's - Getting into Remission with Enteral Nutrition by Margaret Oppenheimer...this book was like EN for dummies!! It validated my thoughts on the safety and effectiveness of this treatment for my son to the point that it was a no brainer....he even read parts and bought in to it.
He started EN via NG tube in April 2010 and within the first month was off all meds and bouncing off the walls with energy....full remission. Pain was gone, and he started catching up on growth. Now he has a PEG tube so we can keep doing this treatment and the world doesn't have to know about it....

Here's my question...why don't more kids in the US and Canada choose this option? If it is due to lack of education and the unknown, or just scared to try....I am ready willing and able to talk to you, help out, show you how, etc.
At Ben's appt. in May this year, he has grown 4 inches in the past year and a half, and has gained 15 pounds!! Still off meds, missed hardly any school. He tube feeds for about 8 hours over night and can eat what he wants during the day....

What do other moms think about this treatment? Would love to hear your thoughts.....

Beth
09-17-2011, 02:40 PM   #2
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He tube feeds for about 8 hours over night and can eat what he wants during the day....
Hi Beth and welcome!! I'm not a mom but anyway...how long has he been able to eat during the day?? I guess in some ways Ben not responding to traditional treatments has been a blessing for him.

My son has been kept in remission with meds so we never gave much thought to the alternatives. I am interested though so please stick around
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09-17-2011, 04:11 PM   #3
Tesscorm
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Hi Beth,

My son, 17 years, is being treated with EN via NG tube. He was diagnosed in May and given two options - steroids (with side effects) or EN through NG (without side effects). He chose EN (if he hadn't made that choice, I probably would have 'tried' to convince him but, at 16 then, he would have had to be on board...).

He inserts the tube each evening and removes it in the morning. It generally does not bother him at all. He has no problem with the insertion or removal and is comfortable having friends come to sleep over and, if curious, watch him insert the tube. Once in a while, he's annoyed with the process but no more so than when he's annoyed at doing any 'chore' .

The only medication he has taken for Crohn's was flagyl the week he was in the hospital and Nexium (antacid) since he started the Tolerex formula.

He's gained 30 pounds (had lost almost 20 prior to being diagnosed) and, for the most part, his symptoms are gone. He periodically has a bit of mucus, sometimes with specks of blood (approx. 1/4 tsp) but this happens only every two or three weeks. (This is being checked into with upcoming ultrasounds and MRI.)

The first six weeks was formula only but his maintenance treatment is 1/2 the dosage, 5 nights per week. The plan is for one year. Once the year is done, I have no idea what will happen . The year will, coincidentally, finish the same week he turns 18; at 18, he will be transferred from the children's hospital and GI to an adult facility and GI.

During the day, he has a normal diet. As he ingests 1,500 cal per night, he is a bit concerned at the rate of weight gain but, as his regular schedule has started up again (school, hockey), I think the gain will taper off. Being back at school is also helping his diet as there are much fewer 'junk' meals with friends.

I also don't understand why this treatment is not more commonly used in Canada and the US. The GIs at our hospital explained that it is often the first treatment given to children in Europe but not in North America (apparently, even within it's limited use, it is more often used in Canada than in the U.S.). A couple of thoughts I have as to why... Many of these formulas are made by Nestle (Tolerex, Modulen, Peptamin, Vivonex) and Nestle is based in Switzerland. Perhaps there may be more contact/collaboration between Nestle and the local medical communities hence making European GIs more knowledgeable and comfortable with this treatment and providing doctors with easier access to formulas and information. I also wonder if it is a matter of cost... Tolorex is not covered by our insurance company (it's classified as only a nutritional supplement not a treatment/medication). So far, it is being covered by a local community drug plan but this is supposed to be a 'temporary' arrangement so I'm not sure how long this will last. Once it ends (hopefully, not any time soon!!!), the cost to us will be $500-700 per month. Maybe the formula is covered in Europe??? Or is less expensive as it's local???

Given that there are no negative side effects, I am really surprised that NA doctors haven't been more receptive or proactive at using this treatment.
09-17-2011, 06:42 PM   #4
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Hi Beth and

So fab to hear that your son is doing so well on Enteral Nutrition, YAY!

It certainly does seem that the EN route is often taken up in Europe and not the US. It is a shame it isn't used more since research suggests it is just as effective as Prednisone in inducing remission, particularly in children.

I don't know why this is but would it have anything to do with the cost do you think? Since all other industrialised nations have some sort of socialised health care would the very cheap alternative that is Prednisone be what is favoured by insurance companies?

My son was started on EN in December last year but it didn't last long due to the complications of CD...fistula's and abscesses originating in the terminal ileum so surgery was the only option. He is doing well now though...

My thoughts are, if ain't broke don't fix it! While ever this regime is working I wouldn't change a thing.

Are the PEG feeds indefinite?

Good luck to your boy and I hope his remission last a lifetime!

Dusty.
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09-20-2011, 10:21 PM   #5
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Beth - Welcome.

Our doc has briefly talked EN with us. Our big stumbling block has been that Claire has to have the immune suppression due to her arthritis so it would only address half our problem. All that said, we haven't ruled it out.

Ironically, Claire is 90th percentile height and 75th percentile weight. So maybe it hasn't been mentioned much since she isn't behind in terms of growth??? I don't know. It definitely wasn't one of the first options mentioned though. It always seems to come up when our medication options are waning. Our ped GI said he does have several teens that place their NG tubes on their own at night for the food and then don't wear them during the day.

We need more folks with EN experience on the forum so glad you are here!

Julie
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09-25-2011, 01:34 PM   #6
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Hi, my son is currently on the 8 weeks of modulin liquid diet. He couldn't stand the taste so has the NG tube in all the time. He really didn't like getting it in so is happy to have a long term tube.
As far as I can gather the liquid diet seems to be the first and most popular treatment for anyone diagnosed with Crohns in Scotland. So far they haven't mentioned anything else. We are almost half way through thank goodness. Poor boy has had to watch us enjoy 2 family birthdays and not be able to eat anything! Hope all goes well for you.
09-25-2011, 04:20 PM   #7
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I am going to speak with the doctor again about this whole EN thing. I can't understand why American docs know nothing about it.
09-26-2011, 09:35 PM   #8
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Hi, I'm new to this forum. My 11 year old son Josh was diagnosed with CD in June of the this year. I am also an RN, but Labor and Delivery, so I don't have much experience with gastric issues. I have been heartbroken watching my child go through this. We are seeing the only pediatric GI doc in the city. We began his treatment with 25mg prednisone, then after reviewing his EGD and Colonoscopy and seeing a fistula between small/large intestine, continued several loose bloody stools daily, he suggested Remicade. He had 2 doses of Remicade and was doing so much better, his color returned(he was no longer ghostly white), he gained weight and was much more active. Then, after going to church and a birthday party my 5 year old got a mild cold, which of course the whole family contracted, and Josh had a full blown relapse. It has now been about 4-5 weeks, back up to 25mg prednisone(we were down to 5mg), and another dose of Remicade. This has not seemed to help, so called doc today and he said increase prednisone to 30mg. Sorry this post is so long, I'm just hoping for some advise on where to go from here. He has never mentioned EN, but my husband and I were searching for alternative therapies and found this forum. Doc just keeps saying bland diet. We've been using boost as supplement, can we use this as complete bowel rest with just the boost orally instead of using NG or PEG tube.
09-26-2011, 10:07 PM   #9
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Hi Josh'sMom,
Welcome to the forum.
Yes, you can us EN as his complete nutrition, but you should do this under the guidance of a dietician and with the knowledge of his doctor. If it doesn't go well, don't give up. Sometimes the formula isn't the right one-- I had trouble with Ensure which is similar to Boost. The book that Ben's rn recommends at the beginning of this thread has a lot of helpful information in it.
Good luck.
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09-26-2011, 10:28 PM   #10
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Hi,

I'm sorry about your son! It certainly isn't easy watching your child suffer through this! But, hopefully, you will find a treatment that works well for him and get him into a lasting remission very soon.

I don't believe we have many, if any, drinkable formulations of the enteral therapy in Canada, hence the NG (or PEG) ingestion. However, from what I've read on this forum, there are drinkable versions available in the U.S. But, I don't believe the Ensure or Boost is the same as the formula used in the enteral therapy (fyi, I think there is a different Ensure formulation that is an enteral therapy in the U.K.).

I certainly think it's worth discussing with your son's GI. So far, my son has responded well. The success rate at inducing remission is comparable to steroids but I have been told that the success rate at maintaining remission is not as high as with other treatments. But, while it is working, we'll stick with it and I'm praying that it continues to work for the long term.

My son did not have a fistula so I'm not sure how effective the EN is at treating fistulas. But, there are many people on this site with more experience than I, so I'm sure you'll have more responses soon. You may want to consider posting your son's story in the My Story subforum - you may have more responses...

Good luck...
09-26-2011, 10:58 PM   #11
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Hi Everyone, I spoke with my daughters doctor today and insisted that I want to speak with them about EN. I also ordered the Beat Crohn's book. I will keep you posted about how it goes but it seems everyone here in the US are not in favor of it.
09-26-2011, 11:03 PM   #12
happy
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Actually Tesscorm, we do have drinkable complete Enteral Nutrition formulas available in Canada. Here's a website that has some: http://www.nutrition.nestle.ca/en/ou...onex_pediatric (You ned to click on the page on the right to see other products.)

The main problem with drinking them is that most people don't find the formula palatable. This is one of the reasons that an NG or PEG is used.

As to Josh'sMom's question-- some people do just use the OTC Boost or Ensure-- I'm not recommending it for longterm use, and that's why I suggested the medical guidance and the book.
09-27-2011, 09:11 AM   #13
Tesscorm
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Thanks Happy, I'll ask my son's dietitian next time I see her - last time we spoke of it, she was hoping that Modulen would be available in Canada by end of 2011 but she didn't mention any other options.

But, along your other comment re flavour... now that my son's used to inserting/removing the NG tube, I'm fairly sure he would end up choosing the tube anyway... he's always been a picky eater and has a very low tolerance when eating/drinking something that he doesn't 'like'. And, to top it off, it wouldn't be a small quantity - his maintenance is 1000 ml per day.

Kimmidwife - yes, please let us know about your apptmt with the Dr. Simply out of curiousity, I'd like to know why this treatment isn't more commonly used in N.A.
09-27-2011, 09:56 AM   #14
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Thank you all for your advice. I hope to talk to the GI doctor today about a stool study we are having done, and I am going to ask him about the EN. Thanks agains so much!!!
09-27-2011, 10:53 AM   #15
kimmidwife
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I have a quick question. When doing the EN can you drink regular fluids still such as Gatorade? My daughter wanted to know.
09-27-2011, 11:05 AM   #16
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I am on the phone with the doctor now and he is saying it doesn't work. He says as soon as you go back to eating the pain and inflammation come back. Anyone have experience with afterwards? Is there a good chance for remission?
09-27-2011, 11:31 AM   #17
happy
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Hi kimmidwife,
Typically when a person chooses full enteral nutrition to induce remission, he/she is restricted to the formula and nothing else. However, many people on the forum have been on EN prior to surgery and they are often allowed 'gel-type' foods. Once remission is achieved many people choose to remain on partial formula while eating solid foods to stay in remission and to maintain/regain weight. The research shows that this works for some people.

Your doctor is correct, most/many people relapse after moving from full formula to full solid food. The program that I am following is described on this website: http://www.crohns.org.uk; and in the book: Inflammatory Bowel Disease by Dr. John Hunter. The info is based on a program and research done at Addenbrooks Hospital in the U.K.

The theory is that EN changes the flora in the bowel and induces remission by reducing the 'food' that the inflammatory process feeds on. When a person returns to eating solid food it needs to be done very gradually and in a way that keeps the flora that the inflammation uses under control. ( For this reason it does not work for people with Ulcerative Colitis.) There are two ways to reintroduce foods: the LOFFLEX diet, which is a partial elimination diet with a faster introduction of foods and the full elimination diet, which is a very slow introduction of foods.

I relapsed on the LOFFLEX diet, resumed EN for two weeks to induce remission again, and have, so far, remained well on the full elimination diet for eight weeks. It is not long enough to know yet if I will remain in remission.

The diet portion of retaining remission is not easy and very time consuming. For all of the above reasons most people prefer meds and your doctor says," it doesn't work".
09-27-2011, 01:38 PM   #18
Tesscorm
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My son was allow clear juices, jello, freezies and broth during the initial six week 'exclusive' period. Once the six weeks ended, his dietitian gave us a reintroduction diet. During the exclusive period, he ingested 2000 ml per night of formula, while he was on the reintro diet, he gradually reduced the amount of formula to 1000 ml which he will continue for one year (no plan beyond this due to his transfer to an adult GI at a different hospital next year).

His reintro diet was:

1. low fibre foods for 3 - 4 days: white bread, rice, potato, plain muffins, plain cereal. He was allowed a very small amount of toppings (butter, cream cheese, spoonful of tomato sauce with no chunks or seeds, etc.)

2. low fat proteins for 3 - 4 days: chicken, eggs, beef, fish, etc.

3. soft fruit and veggies for 3 - 4 days: applesauce, no skins (apple peels, potato, etc.), no membranes (the 'skin' around orange segments)

4. dairy and/or alternatives for 3 - 4 days

He was told to always avoid seeds, nuts, popcorn, corn (although he has eaten corn chips without problem), fruit/veggie skins.

After that, he was allowed to reintroduce all foods gradually. His reintro diet started July 8 and, now, he is eating pretty much everything. I have 'limited' milk (have periodically alternated cow milk with soy milk) and junk food (altho not completely eliminated it). The only meal that seemed to bother him was a greasy breakfast sandwich (with egg, cheese and sausage) with a large chocolate milk (surprise, surprise! LOL) BUT that was a day that we were also travelling, catching connecting flights and eating on the run so... may not have been all due to that one meal. (And, even then, his symptoms were minor... just felt 'off' and had a very small amount of mucus once but was fine by the next day.)

I think I mentioned earlier that his doctor did say that EN does not maintain remission as well as other medications but, so far, my son has shown minimal symptoms. His BMs are normal, has gained 30 lbs. and energy levels are back to normal. I am a bit concerned that this won't last... as I mentioned before, he periodically has a bit of mucus and, at this last appointment, felt some pain when the doctor pressed on a specific spot (LRQ) so I'm worried that there is still some inflammation. But, to follow up, he has an ultrasound booked next week and an MRE in 6weeks... so we'll see.

His GI (and clinic) have been involved in research re EN therapy so, in our case, it was the first treatment they suggested (steroids were presented as the 'alternative'). At the time, with everything so new, I even felt like they were pushing their own agenda with the EN therapy! LOL But so glad we went with it!

I'm also going to purchase this book, perhaps I can do more in his diet to support the maintenance formula therapy. Was there much info in the book regarding long term maintenance with EN?
09-27-2011, 03:53 PM   #19
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ben's rn, I hope that you don't mind that we have hijacked your thread.
I do think that it is great to have a place to discuss EN as a treatment, so thanks for starting the thread.

Tesscorm, Both books discussed in this thread are good resources. The one that ben's rn mentions sites a lot of research and describes the different approaches to starting to eat again after EN. However, it doesn't give specifics about how to go about it. Dr. Hunter's book does have specifics regarding the two methods that I described above.

Dr. Hunter's two methods assumes that the person is gradually stopping EN as he/she gradually starts eating again. He does mention that eating in a restricted manner is necessary for a year or more to maintain remission. Both methods restrict fats and fatty food and high fibre foods (this includes high fibre fruits and vegetables). They also restrict dairy products. You start with soy milk and later test cow's milk. Also the main grain at first is rice; other grains are very slowly added and tested for at least a week.

He suggests that people have a small supply of EN in case they begin to flare up. The idea is that you take the EN for a few days until you no longer have symptoms and pick up where you left off. Some people may find that there are certain foods that they cannot tolerate, so they can no longer eat those foods.

Particularly with children, I would clear any changes in diet with a dietician as restricting fats, the amount of fruits/veggies and dairy can cause other problems due to insufficient vitamins, calcium, Vitamin D and essential fats.

I hope all goes well with your son's treatment, Tesscorm.

I am curious about where they are studying EN in Canada. I live in Alberta and find that there is little support for it in the adult population unless you are having surgery.
09-27-2011, 04:02 PM   #20
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09-27-2011, 08:35 PM   #21
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Ashley1, Thanks so much for all this information. I actually saved the cord blood cells from one of my children. I wonder if these can be used for transpalnts. Caitlyn wants to try to drink the formula. She is afraid of the NG tube. I am willing to give it a go and see how it goes and worst comes to worst to then try the tube. Thanks everyone for all your support here. I am feeling very down about everything and your support really means a lot.
09-27-2011, 09:30 PM   #22
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Kimmidwife - if you search, you'll find two threads by members who have had stem cell transplants, one just completed his transplant and has a link to his blog describing his experience. Very inspirational!! As far as the NG tube, my son really has an easy time with the insertion/removal of the tube... but he is older than your daughter and, maybe, has a better acceptance of the necessity??? But he was comfortable inserting it within a couple of days and within a couple weeks, was inserting it in seconds, using only one hand... really has no struggles with it. Although, I'm sure, the younger the child, the more difficult the 'tube' challenge. As was mentioned below, the tube does not have to be removed every day, can stay in for up to a month or more. It is frustrating/upsetting when it sometimes seems we can do so little to alleviate their problems! You know you have everyone's support here! Hopefully, the EN therapy is a possibility for your daughter and will bring her some relief quickly!

Happy - My son is being treated at Hospital for Sick Children in Toronto. I have a research report written by the GI (head of the dept) who initially diagnosed him, but I am unable to attach it due to it's size. Not sure if it'll make a difference but I'll try to send it to you through a PM. Our dietitian, who also works through the hospital's IBD clinic did tell me that there is little support for EN for adults. She was unable to provide me with names of any adult GIs that she is aware of that are involved in or support this treatment (so I am concerned about what will happen to his treatment next year!!! But, we'll deal with it then!) I will pick up the book you mentioned, thanks. My son seems to be doing okay with his diet, but I am afraid there may be more going on inside that we are not aware of. His symptoms weren't severe to begin with, so could be easy to miss... (or maybe I'm just worrying for nothing! )

Ashley - thanks also for all the info!

AND, Ben's RN - thanks also for starting this thread! It's great to have others to discuss EN therapy!
09-30-2011, 12:21 PM   #23
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10-01-2011, 08:14 PM   #24
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Hi Everyone. I just finished reading the Beat Crohn's book. It is a very helpful book. I finally got a call back from the nutritionist and hopefully will meet with them early next week to get started. Meantime Caitlyn is to have a colonoscopy and endoscopy on Tuesaday.
10-02-2011, 12:40 PM   #25
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Ashley1, Thanks for sharing your son's story with us. I hope that he continues to do well.

kimmidwife, I hope that Caitlyn's scopes go well and that the nutritionist is helpful. Perhaps you could ask Tesscorm to share the EN study info with you. If the nutritionist is not very familiar with EN he/she might be more willing to help if they have some recent studies to review. I am glad the book was helpful to you. It sure helped me.

Tesscorm,
Thanks for the info!
10-02-2011, 12:43 PM   #26
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Happy,
I think she is familiar with EN but I will find out more when we meet with her.
10-02-2011, 07:37 PM   #27
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Funny, when my doc discussed EN with me, he sent me home with a bunch of samples. I purchased a dozen versions of ensure but dd didn't like the taste of any of them. He NOT ONCE mentioned a ng tube. I am not sure if it is something I am willing to put her through at 4...but if her disease persists I am glad to know it is a viable option. Thanks for the useful post.
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10-03-2011, 09:43 PM   #28
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Angie, I just replied to your other post...

Good luck again with Izzi's new medication.
10-03-2011, 10:57 PM   #29
izzi'smom
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Dumb question...if they choose not to remove it they have an ng tube tapes to them all day? In our case would it interfere with play/daily activities?? (I am envisioning the ng tubes I see patients with at the hospital...very noticeable
10-04-2011, 09:29 AM   #30
Tesscorm
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The NG tube is very thin and, when inserted, comes out the nose and is long enough that it can be pulled back behind your ear (and would just dangle a bit lower than your ear). It is taped to your cheek. In my other post, I mentioned my friend's daughter... she wore her NG tube all summer (6 weeks). The only thing it interfered with was swimming - she went to the amusement park, rode the rides, went to friends' homes, played soccer, went to the park (she actually did go swimming but, is a very cautious, mature 10 year old, so I have no doubt she was careful to not wet it...). Although, to be honest, even if it got wet, I don't think it would matter...

You'll have to be careful that it's not pulled out accidentally while playing (the tape securing the tube is meant to come off skin fairly easily). This wouldn't hurt at all (tube just slides out) but then you would have to deal with a reinsertion. This has happened to my son when he's 'forgotten' he's hooked up to the feed and gets up quickly and walks away .

Sleeping hooked up hasn't been a problem, hasn't been restrictive(and extensions are available). I secured the tube to his t-shirt at night with a small hairclip so that the tube wasn't flopping around. The noise of the pump bothered him at the beginning, so I put the pump in his night table drawer and draped a towel over it (noise only bothered him for the first couple of weeks). And, the first few days, he complained of the sensation of having something in his throat, but this also went away fairly quickly.

Evenings did have to be adjusted somewhat. During his 6-week treatment, the formula ran for approx. 10 hours. He had to begin at 9pm to be done in time for school. He found this a bit annoying as from 9pm onwards he had to drag the pump and stand around with him as he moved from room to room. We did have some flexibility with the speed rate, so he was able to speed up the formula so that the entire amount could be fed to him in 8 hours. We didn't do it every night as 1) I was concerned the faster speed could upset his stomach and 2) the bag only held half the dose, the slower speed worked better for our schedule for the 'refill' time.

The toughest part, by far, was the no eating. I can't even imagine how much willpower it took for him to be around friends at lunch, school's athletic banquet, etc. without being able to eat one bite! My husband and I didn't enjoy one meal during the six weeks (how could we, when we are all 'enjoying' dinner and he's off in another room bcz he can't eat! I was even upset with my husband once for keeping the door open while bbqing because the smell came in!). I'm not sure if it will be easier with a younger child as you have more control over her social activities and diet or tougher because she won't have the same understanding??? But, expect this to be the toughest part . If this is something your GI thinks could help Izzi, perhaps try to plan to start it right after Halloween to end before Christmas (although there is a period of reintroducing food - she can't eat everything right away).

If you choose to go this route, I hope it works for Izzi. It's a great option as there are no side effects and they get all the necessary nutrients. Good luck!
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