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Crohn's Disease Forum » Parents of Kids with IBD » Tips and Tricks 101 (or things your GI forgot to tell you) ;)


 
12-17-2013, 12:28 PM   #31
dsullerton
 
Join Date: Dec 2013
Location: belfast, United Kingdom
DanceMom's comment about knowing meds, etc. reminded me of something else...

As I don't believe crohns nor the meds necessitate a medic alert bracelet (correct me if I'm wrong! ), etc. I don't insist Stephen wear one of their pieces. However, I did write up a wallet card with his basic info, diagnosis, GI's name/hospital/number, GP's name/number, his medication/supplements and dosage and every possible contact number for me (...hubby too)! On the back, I added, live vaccines should not be given with remicade and caution when administering nsaids with crohns.

This card came in handy when S was injured in Dominican Republic and had to go to the hospital. He was having a tough time communicating with the doctors and then remembered he had the card with him, gave it to the doctors and they then understood what he was trying to say.
,,,,,Hi..it depends on the meds that ur son is on?? if on inflixmab then it is imperative that he carrys a card with him should anything happen..the hospital should have given him one when he started his treatment...:-)...
12-17-2013, 12:36 PM   #32
Tesscorm
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Thanks dsullerton, I didn't know it was essential with infliximab - neither his GI nor the infusion centre ever mentioned it. I'd only given him the wallet card as a precaution.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
12-17-2013, 02:47 PM   #33
Farmwife
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I saw this thread started by SarahBear on Scope Prep Ideas. It's very good and a lot of info. Please make sure to ALWAYS check with your GI if they can be done for children.

PRESS HERE
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
12-31-2013, 09:58 AM   #34
Tesscorm
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To add additional calories, vitamins, minerals, etc. to diet, Boost has a number of recipes on their site, using their shakes.

http://www.boost.com/boost-in-your-life/boost-recipes

Haven't tried any though so no recommendations
03-19-2014, 03:04 AM   #35
Nipeli
 
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My daughter is 20 years old, with crohns, we have in a backpack a portable potty with disposable bags, wipes, clothes and underwear. During flare ups as I drive her places or she drives herself, sometimes there is no restroom in site, she busts out the potty and voi la. She is so happy I found that on amazon, it is a kids potty but works all right for her. It is called Kalencon Pottete.
It saved her from embarrassment so many times. It took several accidents before I found this.
03-25-2014, 10:10 AM   #36
QueenGothel
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-When in the hospital find a Child Life specialist to work with your kid. Everytime you go for clinic appointments go visit this person and do some play therapy. It is good for your kid to have someone they trust in the hospital. This for us has been better therapy than any psychiatrist ever has even came close to achieving.

-When emptying an ostomy bag always put toilet paper floating on the water first. This will stop it from spashing and getting on your clothes.

-When you question your doctors ability to treat your child, get a second opinion.

-Most doctors do not believe in nutrition as a treatment. If you want advice see a nutritionalist or a naturalist. These people know better.

-Ostomies are not really scary. They can drastically improve this disease quickly for most.

- Colons are overrated! At least the diseased failing ones are.

-Mesalamine like Asacol, Lialda, Pentasa, Rowasa, Canasa actually cause colitis to worsen in 8% of people with IBD.

-You can transfer care from one Teritiary hospital to another teritiary hospital and your insurance will cover it.

-Second opinions are very imporant before doing anything drastic.

-All surgeons, GI, specialist are not created equal. Some are great, some are mediocre at best.

-Bidets are awesome! Tp is overrated in the USA.

-VEO IBD is considered a spectrum Disease it can start as UC and become CD.

-Removing the Colon for UC is not a cure. It makes the disease WAY more manageable if it is extremely severe but still there is a high rate of morbidity! In order to cure something you need to know what caused it. Much like Radiation doesnt cure cancer it kills it. (The doctors are wrong and so is CCFA)

-The only way to cure a disease is to find the root cause and correct the imbalance or wait for a vaccination.

-pulverized All Bran cereal works better than Miralax. Just sprinkle some on your nutbutter or sunbutter sandwiches and wow you can poop. (Not for the Gluten intolerant)

Last but not least! GO WITH YOUR GUT... IT DOESN'T LIE!

Last edited by QueenGothel; 03-25-2014 at 10:31 AM.
04-04-2014, 08:02 PM   #37
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If one of your child's symptoms is a skin tag, watch for it to inflate/deflate. It can help you distinguish symptoms of a flare from symptoms of typical Gastro illnesses.
09-16-2014, 10:05 AM   #38
Tesscorm
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Being diagnosed a a young age meant getting rectal exams on a regular basis. To say it caused anxiety is an understatement. A pediatric surgeon gave me a tip that made it easier.

As the doctor is about to insert a finger, have your child push out as if going to the washroom This will relax the muscles and make it easier. (I always clenched which made it worse)

Tell the doctor first so he/she knows what's going to happen.

I hope this makes the exam go a bit easier for your children.
..
09-18-2014, 10:14 PM   #39
Brian'sMom
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Tip for covering up the bad taste of certain medicine tablets: (Flagyl, Prednisone, etc)

My son was prescribed the dreaded Flagyl after his MRE yesterday. He hates how it tastes. And its 3x a day.
So today I searched some tips and I found this. I had to post this:

To wrap the pill in a piece of Fruit by the Foot or a piece of a Fruit Rollup. We just did it. It worked so GREAT that I had to post it.
09-19-2014, 02:42 PM   #40
mish2575
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Bottom cream to help sooth and protect the skin from constant wiping.
Cottonelle brand makes an Aloe infused TP. I used that. I haven't had to use bum cream from constant wiping.

I've had to use it for fistula leakage though.
12-09-2014, 11:39 PM   #41
mommysuzy
 
Join Date: Dec 2014
Location: Clearwater, Florida
The article below references using whole milk vs. Volumen contrast for MRE. Recently, Nov 2014, my friend showed this article and a few others to the radiologists at our local Children's Hospital when her son with Crohn's went for his MRE. He couldn't keep the contrast down and the nurses couldn't get the NG tube in after 3 tries! the radiologist agreed to do the MRE using whole milk instead. Following the MRE, the radiologist noted the images were clear, saying that if the contrast was 100% effective, the milk was 96% effective. I am going to insist my daughter drinks milk instead of that horrible contrast fro her next MRE. We Crohnnie Moms need to stick together and share this information so that we can minimize the suffering our kids have to endure.


Cost-effectiveness and patient tolerance of low-attenuation oral contrast material: milk versus VoLumen.
Koo CW1, Shah-Patel LR, Baer JW, Frager DH.
Author information
Abstract
OBJECTIVE:

The purpose of our study was to prospectively compare the cost, effectiveness, and patient tolerance of milk and VoLumen, a 0.1% barium suspension, in patients undergoing abdominal and pelvic CT with oral and i.v. contrast media.
SUBJECTS AND METHODS:

Two hundred fifteen consecutive outpatients were randomly assigned to receive either whole milk (n = 115) or VoLumen (n = 100). Results were independently reviewed by two radiologists who were blinded to the oral contrast agent used. Degree of bowel distention was qualitatively scored on a 4-point scale, and bowel wall visibility was graded qualitatively on a yes-or-no basis. A questionnaire regarding oral contrast tolerability was provided to each patient. Cost comparison of the two agents was performed.
RESULTS:

No statistically significant differences were seen between whole milk and VoLumen with respect to degree of bowel distention and mural visualization for all segments of bowel studied (p > 0.05 for both reviewers). Significantly more patients ranked milk as pleasant in taste compared with VoLumen (p < 0.0001). More patients preferred milk compared with VoLumen (p < 0.0001). Milk was better tolerated than VoLumen, with fewer abdominal side effects, including abdominal discomfort (p = 0.019), cramping (p = 0.019), nausea (p = 0.016), and diarrhea (p = 0.0002). The cost per patient for VoLumen is $18 compared with $1.48 for milk.
CONCLUSION:

Whole milk is comparable to VoLumen with respect to bowel distention and bowel wall visualization and has a lower cost, better patient acceptance, and fewer adverse symptoms. Milk is a cost-effective alternative to VoLumen as a low-attenuation oral contrast agent.
12-13-2014, 08:04 AM   #42
my little penguin
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http://www.ncbi.nlm.nih.gov/m/pubmed/18430848/

Link for article posted above
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DS - -Crohn's -Stelara -mtx-IVIG
12-13-2014, 01:05 PM   #43
Clash
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I've read that article before. Doesn't one of the kids on here use whole milk maybe carolinalaska? C would do way better with the contrast even if ng than whole milk. He has only ever had 1% so he thinks whole is disgusting! Haha
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
01-27-2015, 10:17 PM   #44
apl2018
 
Join Date: Jan 2015
Please check out my blog on living with crohns as a teenager/young adult. I was diagnosed at 17 but had active symptoms since 12 years old. You may find some helpful or useful information in there.

Last edited by Jennifer; 01-28-2015 at 02:58 AM. Reason: link removed
01-28-2015, 10:53 AM   #45
SAHM
 
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Best tip I have: make sure to get your kid's blood test done a few days BEFORE the appt with your GI doctor. Then you can really see how things are going and make an informed decision while you're with your doctor, not make a whole lot of potential plans that depend on what the labs show. Yes, it's a shlep to have to go twice to the hospital, but well worth it, in my opinion!

I also keep a binder for each of my kids with all of their medical info, lab work results, etc in it. I have been able to find things in my giant binder quicker than the doctor on the computer!
Woops! Here's my reply... I think this is a great idea...I'm going to start keeping a binder...instead of pieces of paper randomly strewn about my house... I keep hoping this will all go away. But, then it comes BACK!
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"One man's food is another man's poison."
02-01-2015, 09:49 AM   #46
CarolinAlaska
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I've read that article before. Doesn't one of the kids on here use whole milk maybe carolinalaska? C would do way better with the contrast even if ng than whole milk. He has only ever had 1% so he thinks whole is disgusting! Haha
Nope, not us. J would have prefered it however!
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
02-01-2015, 03:14 PM   #47
my little penguin
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Since DS reaction a couple weeks ago
We will be pushing for milk plus blueberries as contrast
Far less risk
08-28-2015, 07:58 AM   #48
Tesscorm
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http://campaigns.gastro.org/algorithms/IBDCarePathway/

Reposted from CIC's thread.
08-29-2015, 08:18 AM   #49
DustyKat
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Our local radiology now uses milk. Matt was supposed to have it when he had his MRE in May but they blundered and told him to use psyllium (that is what they using before they changed to milk).
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08-30-2015, 01:40 PM   #50
CrohnsKidMom
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Milk instead of contrast?! I just mentioned this to my son, and he said, "let's move to wherever they're doing that!". He has such a hard time getting the contrast down and keeping it down. I will inquire about this next time!
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Son diagnosed with Crohn's March 2013, at age 8
08-30-2015, 04:43 PM   #51
my little penguin
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Check way ahead of time
It's not standard at all in the U.S.
Not sure on Canada
Be prepared to provide studies and get push back
09-06-2015, 05:02 PM   #52
Gram
 
Join Date: Sep 2015
Oh My Gosh! Our journey has just begun with my precious 10 year old grandson (diagnosed less than a week ago) and I am determined to know and learn as much as I can for him. It is scary, but knowledge is the key for that I hope. Already I have a page of notes that I would never have thought of. Thank you and I am going to keep reading and hopefully can contribute as well.
09-23-2015, 12:02 PM   #53
Jackie Prince
 
Join Date: Sep 2015
Location: chevy chase, Maryland
Very helpful thread. Can anyone share thoughts on:
(1) morning nausea - how common? my 17 yr old seems to have this when tired/stressed but want to make sure it's not a reaction to a stricture or methotexrate.
(2) SIBO with Crohn's and how you manage those two problems together? Our DR is recommending rifaximin every 10 weeks or so now that we've had 3 recurrences of SIBO
02-25-2017, 03:59 PM   #54
pdx
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I have a tip for kids taking oral methotrexate.

My daughter takes 15 mg of oral methotrexate weekly, in the form of six 2.5 mg tablets. She doesn't have big side effects from it, but it does make her a little nauseated the night she takes it. She also doesn't like the taste of the tablets, and she had started to associate the taste with her feelings of nausea, which was making her dread taking the pills.

We started putting the tablets in a large empty gel capsule (size 00 will fit all six). The capsule is large, but it goes down easily, and now she doesn't have to taste the mtx. In addition, we give the capsule at bedtime, and since it takes a few minutes for the capsule to dissolve, it gives her a little more time to fall asleep before the nausea hits.

I've read on other forums about parents using this same technique for other bad tasting medicines. Please check with your pharmacist or doctor before doing this, because drugs are formulated to be absorbed in different ways, in different parts of the digestive system, and you don't want to interfere with that, of course.
__________________
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
04-13-2017, 11:59 AM   #55
Tamtam
 
Join Date: Apr 2017
-When in the hospital find a Child Life specialist to work with your kid. Everytime you go for clinic appointments go visit this person and do some play therapy. It is good for your kid to have someone they trust in the hospital. This for us has been better therapy than any psychiatrist ever has even came close to achieving.

-When emptying an ostomy bag always put toilet paper floating on the water first. This will stop it from spashing and getting on your clothes.

-When you question your doctors ability to treat your child, get a second opinion.

-Most doctors do not believe in nutrition as a treatment. If you want advice see a nutritionalist or a naturalist. These people know better.

-Ostomies are not really scary. They can drastically improve this disease quickly for most.

- Colons are overrated! At least the diseased failing ones are.

-Mesalamine like Asacol, Lialda, Pentasa, Rowasa, Canasa actually cause colitis to worsen in 8% of people with IBD.

-You can transfer care from one Teritiary hospital to another teritiary hospital and your insurance will cover it.

-Second opinions are very imporant before doing anything drastic.

-All surgeons, GI, specialist are not created equal. Some are great, some are mediocre at best.

-Bidets are awesome! Tp is overrated in the USA.

-VEO IBD is considered a spectrum Disease it can start as UC and become CD.

-Removing the Colon for UC is not a cure. It makes the disease WAY more manageable if it is extremely severe but still there is a high rate of morbidity! In order to cure something you need to know what caused it. Much like Radiation doesnt cure cancer it kills it. (The doctors are wrong and so is CCFA)

-The only way to cure a disease is to find the root cause and correct the imbalance or wait for a vaccination.

-pulverized All Bran cereal works better than Miralax. Just sprinkle some on your nutbutter or sunbutter sandwiches and wow you can poop. (Not for the Gluten intolerant)

Last but not least! GO WITH YOUR GUT... IT DOESN'T LIE!
Hello seems like you know a a lot. My 11 year old been on pentasa 500 for a year.she recently flared up what do you think of Imuran or humira which one has the least side effects as the GI would want to change as pentasa seems to lost its effect
Any thoughts
04-13-2017, 07:53 PM   #56
my little penguin
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Tamtam

Welcome
You may want to start your own thread
Tagging Maya142
Farmwife
Pilgrim
Mehita
Jmrogers
Clash
Tesscom

Imuran has a high risk of lymphoma
Most GI use methotrexate instead for kids

Ds has been on humira for 5 years. Plus methotrexate

No real issues
It has worked wonders for his Crohns
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Tips and Tricks 101 (or things your GI forgot to tell you) ;)
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