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Crohn's Disease Forum » Parents of Kids with IBD » Clear boiled sweets for liquid diet ( fortisip)


08-09-2017, 11:27 AM   #1
Mickblake13
 
Join Date: Aug 2017
Location: Scarborough, United Kingdom
Clear boiled sweets for liquid diet ( fortisip)

Mickblake13 10:19 AM Today
Hi gang,
This is my first post and it is actually my daughter who has recently been diagnosed with Crohn's. At the minute she is on liquid diet and having 7 bottles of fortisip milk drinks a day. Trouble is she can only stomach 2 of the flavours and we only have foxs glacier mints/ glacier fruits and polos for her to suck on for a bit of flavour and mouth feel. Question is, is there any other "clear boiled sweets" we can get as she is fast getting sick of the same few bits.
Thanks in advance.
E2A- We are in the UK by the way
(Also posted in diet and supplements)
08-11-2017, 07:17 PM   #2
Maya142
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I don't have any answers unfortunately - we are in the US. I'm going to tag Sascot because I know she has a son who has done EEN but she hasn't been on here in a while.

I'll also tag my little penguin because she may have more ideas since her son has done EEN many times.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-11-2017, 10:03 PM   #3
my little penguin
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Welcome
In the US as well
Ds did een a few times
Only one flavor was permitted of peptamen jr (similar to modulen)
He drank it for 9 weeks

Things we did
Set a goal of finishing the drinks for one week at a time
Some reward at the end of the week
Even if it's a trip to her favorite park etc...

Ds was permitted shaved(crushed ice)
Sprinkled with table sugar (cane sugar )
Or plain to chew
The body needs to chew to maintain jaw muscles etc...

Used dum-dum lollipops for flavor (these are permitted on eosinophilia esophagitis diets so our GI was ok with them)- 1 per day

Used crushed dum dum lollipops or plain table sugar. In a
Cheap store bought (target) cotton candy maker
The spun sugar makes "clouds" that can be placed in silicone cupcake holders with feet to look like cupcakes

Pure sugar "cookies"
Take pure cane sugar and water to boil it down
Pour into silicone molds for themed cookies
It then hardens into simple sugar lollipops

No food activities - emphasized social things can happen without food


Festive large disposable coffee cups with lids to take the formula in when going out places
Fancy decorative straws

Hope that helps
Een is hard but can be done
One drink at a time

Good luck
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DS - -Crohn's -Stelara -mtx-IVIG
08-12-2017, 10:10 AM   #4
Mickblake13
 
Join Date: Aug 2017
Location: Scarborough, United Kingdom
Thanks guys, any hints, tips or tricks are appreciated. Although we are starting to notice in week three that her appetite is coming back and now she is up from 7 drinks to 8. It seems like a long road but like you said my little penguin, baby steps and 1 week at a time. It does help to know that there are parents all over the world with similar worries. Thanks again guys
08-12-2017, 10:22 AM   #5
pdx
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Location: Portland, Oregon

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Congratulations to her for making it into the 3rd week--EEN isn't easy! It can be really effective, though; I hope it works really well for her. How old is your daughter?
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
08-12-2017, 12:17 PM   #6
Mickblake13
 
Join Date: Aug 2017
Location: Scarborough, United Kingdom
She is 14 and she found it so hard the 1st 2 weeks but now she's really hit her stride. It was all a bit overwhelming from her being ill for a long time then a hospital stay, endoscopy and colonoscopy and then thrust into a Crohn's diagnosis but she's getting to grips with it now thank god.
08-12-2017, 01:14 PM   #7
pdx
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Location: Portland, Oregon

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She is 14 and she found it so hard the 1st 2 weeks but now she's really hit her stride. It was all a bit overwhelming from her being ill for a long time then a hospital stay, endoscopy and colonoscopy and then thrust into a Crohn's diagnosis but she's getting to grips with it now thank god.
We had a similar experience when my daughter was diagnosed--long illness, hospitalization, scopes, unexpected Crohn's diagnosis. It is all very overwhelming at first (for her and you!), but it does get easier as time goes on, especially as treatments start working. Is the liquid diet helping? And has your daughter started any longer-term medications?
08-13-2017, 04:41 AM   #8
Mickblake13
 
Join Date: Aug 2017
Location: Scarborough, United Kingdom
She has been given steroids and omeprazole to calm this current flare down but we have to go for an MRI scan in a couple of weeks as some of her intestine was too inflamed to let the camera through. She is improving slightly everyday at the moment, which does seem to be a combo of the steroids and the diet. It'll just be nice to see her happy again.
08-13-2017, 06:14 AM   #9
my little penguin
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Steriods and omeprazole (ppi for reflux) are not long term Crohns meds
Maintenance meds would be

5-asa 's(pentasa asacol etc..) weakest drugs not very effective not recommended for Crohns or approved

Immunosuppressants-6-mp /aza or mtx
Most kids need these at a minimum
GI no longer use 6-mp or aza in kids due to the significant increase risk for lymphoma with them - most use methotrexate (mtx ) to start

Biologics- remicade or Humira (others include Simponi or Stelera) - most effective but have the highest cost - extremely hard to get in the U.K. And they tend to stop them (which is not recommended due to cost )
In the US some start kids on biologics (top down ) since they reduce the risk of surgery from Crohns in 5 years from. 75% to 30-40% .
In the us you don't stop a biologic unless it stops working or you have an allergic reaction .
Since odds are the med won't be as effective if you try to restart it
And you are at an increased risk of allergic reaction with remicade


Typically you are started on a maintenance medicine at the same time as Steriods/Een
Since the maintenance medicine takes a long time to reach effectiveness

5-asa --1 month (if they work at all since they only treat the surface of the intestine and Crohns affects the full thickness)

Immunosuppressants
6-mp/aza take 3-4 months to work
Mtx takes 8 weeks to work


Biologics
Remicade 6-8 weeks work but some up to 3-4 months

Humira at least 3-4 months to work some up to 5-6 months


Once the steriods /een is stopped the inflammation will come back and you will have to start over again

Please talk to your child's GI about what maintenance med would be best for her
08-13-2017, 06:20 AM   #10
my little penguin
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Pharmacologic and Nutritional Therapy for Mild Disease
5-Acetylsalicylic acid

Although oral 5-ASA preparations are commonly used, adult meta-analyses suggest that these preparations do not have a clinically important treatment effect on active Crohn disease and are not superior to placebo for the maintenance of remission in Crohn disease. [19] Topical 5-ASA therapy is available in suppository and enema forms for the treatment of distal colitis.
Antibiotics

A few small studies have shown the usefulness of antibiotic therapy in the treatment of Crohn disease. Metronidazole, as well as the combination of metronidazole and ciprofloxacin, is useful in the management of perianal disease and of small bowel and colonic disease.
Nutritional therapy

Nutritional therapy is another important modality for the treatment of disease, malnutrition, and growth failure in Crohn disease. [20] A dramatic reversal of malnutrition and a change in growth velocity can be expected in all children treated with adequate nutrition in conjunction with medical therapy to control symptoms of Crohn disease. Additionally, exclusive enteral nutrition has been shown to be as effective as corticosteroids for the induction of remission and might promote better GI tract mucosal healing. [21]

Because most patients have appetite suppression, overnight nasogastric feedings are often used. Although the exact mechanism of action is unknown, the beneficial effects of this approach could be due to alteration of the intestinal flora, a decrease in the antigen load, and reductions in inflammatory cytokine levels.
Corticosteroid and Immunomodulatory Therapy for More Severe Disease
Corticosteroids

Corticosteroids are the mainstay of therapy for acute exacerbations because they suppress acute inflammation, thereby providing rapid symptomatic relief. Systemic corticosteroids are not indicated for maintenance therapy. Enteric coated ileal-release preparations have been developed for the treatment of ileal and cecal Crohn disease; systemic effects are decreased with these formulations.
Immunomodulators

Immunomodulators have been used to induce and maintain long-term remission in chronically active, steroid-dependent or steroid-refractory, moderate-to-severe pediatric Crohn disease.

6-Mercaptopurine (6-MP) and its prodrug, azathioprine, are effective for the induction and maintenance of remission and the reduction of corticosteroid exposure in pediatric Crohn disease. Three months is often required to achieve therapeutic efficacy, although the onset of action varies.
Thiopurine methyltransferase (TPMT) activity should be measured before the initiation of therapy to identify patients predisposed to altered drug metabolism (which increases the risk of leukopenia). Measurement of 6-thioguanine nucleotide (6-TG) metabolites is helpful in assessing compliance and adjusting therapy.
MTX is effective in inducing and maintaining remission in chronic Crohn disease in adults and has been shown to be effective and well tolerated for maintenance of remission in children. [22, 23, 24, 25] MTX has a quicker onset of action than 6-MP does, and the once-weekly dosing is sometimes preferred. Whether oral therapy is as effective as parenteral administration is unclear.

Biologic Therapy for Unresponsive Disease

Infliximab (Remicade), a chimeric monoclonal antibody to tumor necrosis factor (TNF)-α, is effective in patients who have an inadequate response to conventional therapy and in patients who have fistulizing Crohn disease. [5] It has been approved for the treatment of pediatric Crohn disease. Current clinical practice is to give infliximab in an intravenous (IV) infusion of 5 mg/kg at 0 weeks, 2 weeks, and 6 weeks, followed by maintenance IV infusions every 8 weeks.
The most common adverse events to infliximab therapy are acute and delayed infusion reactions associated with the formation of antibodies to infliximab (ATI), which occur in 16-39% of children. Premedication does not seem to prevent infusion reactions; however, after an infusion reaction occurs, premedication may be indicated to prevent subsequent infusion reactions. [26]
Adalimumab (Humira), a fully humanized anti–TNF-α antibody, was approved by the US Food and Drug Administration (FDA) in September 2014 for children aged 6 years or older with moderately to severely active Crohn disease who have had an inadequate response to corticosteroids or immunomodulators (eg, azathioprine, 6-mercaptopurine, methotrexate). It is also a safe and effective substitute for patients who are allergic to infliximab or who develop high titers of human antichimeric antibodies (HACA). [6] Its approval was based on a prospective multicenter study in children with a Pediatric Crohn's Disease Activity Index (PCDAI) score of more than 30 for whom conventional treatment was unsuccessful (n= 192). The study demonstrated that adalimumab is effective for induction and maintenance of remission for pediatric Crohn disease and is well tolerated by children. [27, 28]

Adalimumab drug is already approved for the treatment of moderately to severely active Crohn's disease in adults.
A study by Dziechciarz et al assessed the published evidence on the efficacy and safety of adalimumab for Crohn's disease in children. The study found that there was only low-quality evidence based mainly on case series that showed that approximately half of children with Crohn's disease on adalimumab therapy achieve remission during the first year of the therapy with reasonable safety profile. [29, 30]
One area of concern with the use of these medications is that multiple patients have been reported to develop a rare hepatosplenic T-cell lymphoma when treated with dual therapy consisting of 6-MP or azathioprine with a TNF-α inhibitor. Although this has been a rare complication, all reported cases have been in adolescents and young adults.

Data from the observational RISK study has been published. The study included children from 28 pediatric gastroenterology centers in North America. Results showed that in newly diagnosed children with comparably severe Crohn disease, early monotherapy with and anti-TNF-alpha agents produced better overall clinical and growth outcomes at 1 year than early monotherapy with an immunomodulator. Further investigation is needed to identify which children are most likely to benefit from early anti-TNF-alpha therapy. [31]
A study examined changes in bone density and structure in children and adolescents with Crohn's disease following initiation of anti-tumor necrosis factor (TNF)-alpha inhibitors therapy. The study concluded that anti-TNF-α therapy was associated with improvements in trabecular bone mineral density and cortical structure. Improvements were greater in younger and growing participants, suggesting a window of opportunity for treatment of bone deficits. [32, 33]



From

http://emedicine.medscape.com/articl...-treatment#d10
08-13-2017, 08:43 AM   #11
Mickblake13
 
Join Date: Aug 2017
Location: Scarborough, United Kingdom
Wow, that's a lot of info. To be honest nobody has mentioned anything for the long term yet as she was so poorly. She is 5'5" and was weighing in at just over 80 pounds. She is slowly gaining weight with this diet but she is so looking forward to some real food. I just hope they can control this so she can have a little normality back. We are seeing her GI in 10 days so this will all be discussed then I think. Thanks for all the info penguin
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