01-05-2013, 08:58 AM   #1
Farmwife
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Toddlers and EEN

Enteral/Elemental Nutrition or simply called EN or EEN.
For a link explaining it in further depth. Press HERE

As we all know, when it comes to EEN theirs challenges with every age group.
Toddlers are no different.


This thread is also for ANYONE with experience of EN that might help us parents with toddlers! Trust us we need all we can get
!
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I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
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dx Erthema Nodosum
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Bladder and Bowel Dysfunction
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Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine

Last edited by Farmwife; 01-06-2013 at 03:44 PM.
01-05-2013, 08:59 AM   #2
Farmwife
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Grace started EN on 1-5-13.

Grace was found to have microscopic inflammation in different parts of her colon and her TI. The next day the GI dx her with Colitis. Upon discussion with the GI we decided NOT to do steroids approach for Grace. Given her young age and the uncertain of the changing of her dx we decided to go this route. EN has no side effects and supplies ALL nutrition.
GI ordered Enteral/Elemental Nutrition or simpled called EN or EEN.
Press here for a link explaining it in further depth. Press HERE

Her GI has put her on a formula called Neocate EO28 Splash.
She also has a N-G (nasal gastric) tube in place to deliver her feedings. The tube goes in through the nose and down to her belly. The reason for the tube is she has to drink a good size amount of a rather...how do I say in a toddler term, yucky drink! This way she doesn't have to taste it and we don't have to beg her to do so.

OK onto the feeding themselves.
Our GI ordered a step up program. We start with 10ml of formula an hour and increase every 24 hrs. by 10 ml. until we reach 80-120 at one feeding.
She will need 6 boxes of Splash a day to thrive. They suggested since we're doing day time feeding that we have 3 four session of feeding time to start with.
Now you don't have to do day time feeding this can be done during the night.
Grace has a feeding pump that's programmable with times and amount of formula to be delivered. It also has alarms that go off when she done or if theirs problems with the tubes. We were given to sizes of bags, 500ml and 1200 ml. 500 works better for towns trips and 1200 works good for day/night feeding in the house.


It took about a week for all the pieces to fall in place.
We had a lady come from the medical supply company. She showed us the working of the food pump.
A nurse also came to our home and inserted the tube for us. Also gave good instruction on how to take care of her during this time.

This same nurse will be our primary nurse for home visits. She will come out once a week at GI's request and monitor Grace's vitals and make sure her tube is in place.

I talk with Grace the morning of the tube placement. She being three didn't like what she heard BUT we said you have no choose because we need your boo-boo in you belly to heal. There was a fight when the tube was put in and it took two tries to get the right placement. The nurse did a wonderful job under the circumstances.

Observations so far,
She seems tired and not very happy, don't blame her one bit.
I decided to up her program to 60 ml an hour because I know from her scopes that nothing is compromised in her stomach and she was starving before the EN so having it drip that slow for a couple days was only going to make it worse.
All way remember to check with you doctor or nurse about decisions your concerned about making
Another nurse will be coming out today to check things over and answer any more questions from us. We will be heading to town. We have a backpack the the pump and feeding bags fit into. The pump batteries last for 24 hours, so she can be mobile.

If you have any questions or something I forgot to add please let me know. This thread is a work in process I will be tweaking it

Last edited by Farmwife; 01-05-2013 at 11:41 AM.
01-05-2013, 11:32 AM   #3
Farmwife
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Does anyone more intelligent than myself know how to upload pictures?
I tried but failed!
01-05-2013, 11:42 AM   #4
kiny
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how to upload pictures?
Go here: http://tinypic.com/

Click the browse button and upload the picture and click Upload Now and fill in the captcha.

Copy the IMG code on the left and paste it in a post on this forum.
01-05-2013, 11:49 AM   #5
Farmwife
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Thanks kiny!
01-05-2013, 01:32 PM   #6
my little penguin
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Please have the Gi ok the higher feed rate- since she wasn't absorbing - ask about referring syndrome - ok
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01-05-2013, 01:37 PM   #7
my little penguin
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http://www.medscape.com/viewarticle/489090_4
01-05-2013, 01:50 PM   #8
EthanClark
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Clark started EEN on 12/23/12

Clark was diagnosed with Crohn's disease 10/20/12 after 9 months of being sick, 2 scopes(upper and lower both times) and a week hospital stay to rule out infectious diseases and other immune deficiency diseases. The last scopes showed inflammation and ulceration from his esophogus to anus. He has it throughout his whole system. We have done 2 rounds of steroids and tried many holistic approaches. The doctors next recommendation was methotrexate. We decided to try EEN because we are leery of the BIG GUNS for our little guy at this time.

We went up to the childrens hospital to get the tube inserted and have Clark monitored for a few hours while starting the formula. The insertion was pretty traumatic but the nurses were great and tube was placed on first try. He was tolerating the formula well but was still pretty upset about the whole ordeal. We were sent home with instructions a few hours later. Home Health had delivered the equipment and formula a few days previous so we had everything we needed. The nurse would be out the next day to do a check and answer any questions. We started his nightly feed but were told the full amount would be fine. Wrong!!! Clark ended up waking up at 2am and throwing up everything including the tube. Of course this was pretty upsetting and he was pulling at the tube which was still trough his nose and out his mouth. After calming him down I took the tube out for the night. The Home Health nurse came Christmas Eve and re inserted the tube and we started his nightly feeds at a much slower dose. 25ml per hour to start. Over the next few days we increased with each feed and are now at max dose of 1250ml a night. We run the pump at 100ml per hour. We split the dose in 2 for the night and flush the tube in between feedings. Clark was having an issue with the formula being too cold the first night before he vomited even though it was at room temp. I now run the cans under hot water for a few minutes prior to feeds so they are slightly warm. This has helped alot. We are giving him peptamed jr.
Prior to starting EEN Clark was miserable. He layed on the couch all day and never played. He complained of stomach and joint pains everyday.He was not eating well and was underweight and malnourished. He was very irritable and rude to people because he never felt well. We hadn't gotten him to smile, laugh or play for months.
After EEN Clark has started feeling much better. Everday he is improving. He has energy to play again He has started to laugh and smile and is much happier and nicer. He has been taking really long naps and is still tired at night prett early but I attribute this to his body needing rest because it is finally healing. He is up off the couch wanting to actually play games and play in his room. Been a long time. We are so happy to see our son get some of the life back in him. It has been amazing. We will be getting his bloodwork done soon and I will post results of inflammtion to see how he has improved. His ESR and CRP were both pretty bad before EEN. I'll get exact numbers later.
Recommedations: Start the formula slow, if too cold warm slightly to avoid vomitting as putting the tube in once is enough. You will have a few days of very upset littles ones due to not being able to eat food. After 3 days Clark doesn't even ask anymore. he enjoys his special milk ,chicken broth, jello and popsicles. Be prepared for large amounts of urine output. He is still in a diaper at nights due to fear and pain when having a BM and he leaks through diapers even though changed every few hours. He is also running to the bathroom a few times an hour to pee. He still holds his poops until night time.
Good Luck
01-05-2013, 01:57 PM   #9
EthanClark
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Question for you about tube care and replacement. How often were you told to flush tube and how long were you told you can leave the tube in for. I was told 1 month for the tube and flush every 4 to 6 hours during feeds but I have read different numbers and was just curious what you were told.
Thank you
01-05-2013, 02:03 PM   #10
DustyKat
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Just a couple of questions Farmwife.

Were you shown how to insert the Naso Gastric tube?
If not what happens if Grace pulls it out or it dislodges?

Do you check for correct placement of the tube each time it is reconnected to the pump?

Dusty. xxx
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01-05-2013, 03:08 PM   #11
Mylittlesunshine
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Hi farmwife
How is grace doing? Is grace on tube feed only
Or is she allowed clear liquids .
Love the new picture she is so cute x x
01-05-2013, 04:10 PM   #12
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MLP I'll ask about that for sure. She's at 6oml and she seems fine there. I don't plan on increasing until a few days from now.

DustyKat
The nurse took 3 hours with us. She was great! She work most of her career in the nic-u. The is why she was chosen for us.
We check placement by using a syringe filled with 1-3 cc of air and pumping it into the feeding tube and listen for the gurgle in the stomach. We are to do this before every feeding.

What happens when she pulls it out??? Scream
The nurse did show us but......it took three to hold her down. She said
call and nurse will be out here within one hour anytime of the day!

EthanClark
We were told to flush every time we change out bags and every morning and night. The nurse said in her opinion that you can never do it to much.
This is a one month tube. We'll get a new one in four weeks.

Mylittlesunshine (mls)
Nothing but water and ice chips. THAT'S IT!
01-05-2013, 04:16 PM   #13
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I don't have any experience with EN, so not much to add except that Grace is just as cute as she can be in that picture!

And awesome job farmwife!!!

We all hope we can step it up when we need to for our kids. You have done an amazing job for not only Grace but for other little ones by sharing her story.
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01-05-2013, 05:22 PM   #14
poppets mum
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I have to admit when Amy's tube came out accidentally we dreaded putting it back in. I was amazed that they trusted us to do this ourselves. I found day feeds worked a lot better for us also as I think I have mentioned before there were vomiting and bed wetting issues. We would check placement using a syringe to bring up a small amount of stomach contents. Quite quick and easy.
01-05-2013, 05:32 PM   #15
my little penguin
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Check with your doc - but heard you can place the end in a cup of water - bubbles mean its in the lungs---
Again ask your doc

Onesies work well for something to pin The tube too when not in use .
Plus feeding the tube through sleeves so it doesn't get caught on things outside while playing.
01-05-2013, 05:39 PM   #16
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That is such a cute picture of Grace! Don't have any extra advice to give - it seems they have covered it all. I remember being really paranoid about the tube coming out but it never did. Poor Andrew was really upset during and after - sad to see a 12 year old crying as he very rarely cries. We never had a pump or anything, just used a bolus at "meal times" so I have no idea what that's like. I hope she gets used to it quick and starts to feel better!
01-05-2013, 06:07 PM   #17
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Question

If you take the kid out to town and they are being fed (EN), do you need to stick an ice pack in their back pack?
01-06-2013, 01:21 PM   #18
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Just lurking, glad she is doing better with it. Will she talk? I hope she is a Chatty Cathy! I hope it heals her completely! Prayers sent!
01-06-2013, 01:57 PM   #19
my little penguin
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Just checked with experts at KFA
No ice pack needed unless its really warm
So you should be good where you live FW
At least for a while
01-06-2013, 03:36 PM   #20
Farmwife
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Thanks MLP!


Observations
Grace is on day 3 of EN.
She is still having a hard time adjusting but church seemed to have helped get her mind off it.
The backpack she wares is great and fits every thing nicely.
I am surprise at the tender age of three how embarrassed she seems to be.
In public she walks with her hand over her nose trying to hide the tube.
Yesterday (thanks to Clash) we learn that in her biopsy result that Grace had some signs that point to Gastritis.
She has been having abdominal pains so we decided to turn the pump down to 50ml an hour.
She is still tired and we will be talking to her GI tomorrow.
Also the nurse is supposed to be coming.
I'm concerned as she's still losing weight. She's around 30-31 pounds. She still looks good.


On a good note:
Today is the first day she hasn't been begging for food.
Even with the little she's getting is more than she was having of regular food.
We diced at meal time to have her pick out some fav stickers and we're putting them in a special notebook.
On each page I'm writing a fairy tale story a sentence at a time about Princess Grace. She loves it
Since the IV tower is a tower and to Grace towers have to do with castles and princesses live in castles we are going to decorated (all removable) her tower with flower stickers on the pole and try to make a cardboard cut-out of a castle for the top. I'll try to post some pic when finished.

Words of warning!
Yesterday she finished her feeding and went and laid on the couch.
I walked into the room and smelled something horrid.
The tube cap had opened up and siphoned out all the contents of her tummy.

Also with a toddler watch them closely. Grace hates being tethered to her IV tower. She disconnected her feeding tube. Thank God she remembered to put the cap on her tube but didn't to the feeding bag. A stain now adorns my couch!
01-06-2013, 09:26 PM   #21
Farmwife
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I was wondering.......
Is it normal to have hard stool on EN?

Grace has ALWAYS since birth had soft stool.
She just passed some of the hardest looking stool she's ever had.
She also passed bright red blood but I know that was caused but the hard stool in the rectum.
I wonder if this was the reason for her night of bad pain.
Also her joints were a big bother today.
01-06-2013, 09:42 PM   #22
my little penguin
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In an answer yes yes yes-
Most formula ( amino acid and peptide based)
Leave very little residue behind so they can cause constipation - some kids need miralax as a result other kids have the opposite problem liquid in = liquid out
Both are normal.
Make sure the Gi told you the right amount of water to give
When you are no foods water intake is also important
Some kids need extra pedialyte pumped in as well in addition to formula
Again something to ask your Gi .
Things are different when you drink it orally vs pumping it in.

Hope she feels better
01-06-2013, 10:17 PM   #23
AZMOM
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Farmwife - I thought she'd been having constipation issues???

Whether the issue is new or old, I'd call the doc. Like MLP said, I always thought EEN and similar tubefeeds softened things up.

Hope things improve for Grace!!

J.
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01-07-2013, 06:37 AM   #24
Farmwife
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Grace has what's called soft stool constipation. She's never had hard.
Yes I know Grace is talented


Grace had a great night of sleep. NO PAINS!!!!
But see here is the trend.
Night/Day of abdominal pain-Day/Night of joint, eye pains=Bowel movement the next Day/Night
01-07-2013, 06:48 AM   #25
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Rest is a great medicine all by itself
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01-07-2013, 11:02 AM   #26
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I am not sure about stool - Andrew was too old to allow me to see . Maybe it's a case of her body getting used to the change in diet. Hopefully once she has been on it for a couple weeks her body can start to heal itself!
01-07-2013, 12:22 PM   #27
my little penguin
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EEN takes 4-8 weeks to work
Hugs
01-07-2013, 07:54 PM   #28
EthanClark
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FW-Thought you'd appreciate this! My husband just called me at work freaking out because somehow Clark's tube opened and he leaked his stomach contents out all over today. And guess where it happened? On our couch. LOL It's extra awesome because we just took the cushions apart because he peed through them the other day. Nothing like rewashing the entire couch.
01-07-2013, 08:00 PM   #29
Farmwife
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To funny but I feel for your hubby. The smell is awful.
What I do for Grace now is use the paper tape connecting tubes together.
That way they stay put and it's harder for them to be pulled apart by little hands.
Also when she's disconnected for awhile I still tape up the end.
Peace of mind and a clean house.

How Ethan doing on EN? Does he still have any symptoms?


01-07-2013, 08:36 PM   #30
EthanClark
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FW-Ya my hubby is a trooper as I am the one working and he is the stay at home Dad while he finishes school. Good Man. Clark is doing so so much better in regards to energy and being happy and nicer to everyone. He does complain alot less of stomach pains. He is only pooping about every 2 or 3 days as he is afraid of the pain so he holds it until night time and does it in a diaper so I belive some of the pain he still has is because he's afraid to poo. He has started to gain a little weight back. He weighed 32lbs last FEB before he got sick. He turned 3 in May 2012. He has gone as low as 26lbs over the last year. He is now 3 1/2 years old and is up to 31.4lbs. This is the most he has weighed in almost a year. We are very excited about it. He still has quite a distended belly though. He has had this for months now. Poor little guy looks 6 months pregnant. I am hoping with healing and improved BM's that it will go away. Overall a night to day improvement. He is starting to act like the little boy he was before he got sick. Playing and laughing. It has been amazing. And much needed. I sure hope little Grace gets feeling better too. I showed Clark her new picture with her tube to show him that other little kids get to have special sketti tubes too with special milk to make them all better. He liked the idea that he wasn't the only one. Made him smile.
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