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Crohn's Disease Forum » Parents of Kids with IBD » Your child's Imuran Side effects? Dairy ?'s


 
12-31-2013, 09:47 AM   #1
Cupkatemom
 
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Your child's Imuran Side effects? Dairy ?'s

We finally started Imuran last night. She took the pill easily and ate a few crackers then went to bed. I was worried and woke to check on her 2x. She was fine - up this morning like her normal self. I guess it is smooth sailing so far. I am wondering, however, how soon did you notice side effects in your child? We leave for a Disney trip in 2 weeks and hope to have some sense of comfort by then. We need this trip!

Another food related ?. We noticed this summer, well before Dx that she can't tolerate milk/lactose anymore (dh was same way at this age so thought no big deal). Well, after several months of lactose-free products, we are seeing the problem arise again. We are trying soy products now, but struggling. Almost everything has milk in it - from Nutella, activia yogurt, to cream cheese, etc. She is missing her favorite foods. Has anyone discovered any great milk-free we could look to try? She's a very picky 10 year old. Thx
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Daughter dx Crohn's Dec. 2013
Imuran 75mg
12-31-2013, 10:21 AM   #2
imaboveitall
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V's been on Imuran 150mg since May and ZERO side effects.
Perfect white counts, no infections (even when the rest of us were sick!) and feels excellent.

Imuran side effects are usually myelosuppression and hepatic problems, which is why frequent levels are drawn.
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
12-31-2013, 10:25 AM   #3
Farmwife
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Hi, my two children and myself cannot take milk or dairy products of any kind.
Believe it or not milk -free is not as bad as it gets. Try corn free, it's crazy how much corn is in everything.

Our favorite non-dairy milks are Coconut, Rice, Flaxseed and Hemp. I hear Oat milk is good to but we've not tried it.
Coconut is my all around favorite. You can cook, bake and do just about everything with it. Real coconut milk doesn't even have a strong flavor like you think it would. LOVE IT
We use rice milk in our cereal because it takes the flavor of the cereal and taste good.
Flaxseed is my son's favorite drinkable milk.
Hemp has a woodsy flavor.

We don't do soy, so no advice there.

Hugs
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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, 10:46 AM   #4
Sascot
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We never had any side effects, so hopefully she will be as lucky. As for dairy free, I seem to remember one of my son's friends was dairy intolerant and he was allowed dark chocolate. Maybe you could melt it down and mix it with something to make a chocolate sauce. I also love coconut milk, especially blended with frozen fruit. Both my kids love it, it's like a milkshake.
12-31-2013, 12:41 PM   #5
Maya142
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Has she tried taking lactaid with milk products? If she's just lactose intolerant then lactaid should help. It's a pill you get over the counter. My daughter is lactose intolerant and can eat almost everything with milk in it when she takes lactaid. Things with a lot of cheese and ice cream still make her nauseous, even with lactaid, but she tolerates most other things.
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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
12-31-2013, 02:48 PM   #6
Mehita
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My son was on it for six months with no side effects. I think if they do occur, it happens fairly soon.

Enjoy Disney!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
12-31-2013, 04:56 PM   #7
upsetmom
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My daughter got sick straight away from the Imuran.

Hopefully your daughter is one of the lucky ones with no side effects.

Good luck.
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Daughter dx CD March2012...
(aged 14)

Currently on:
Remicade
125mg Imuran
3000mg Pentasa
600mg Calcium


Dx Premature Ovarian Failure 2014
On Estrogen and Provera


12-31-2013, 05:04 PM   #8
kimmidwife
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I second Maya for us lactose free products and lactose pills are a lifesaver. Try lactose free milk. You can buy it any supermarket it is called Lactaid. If she feels okay after drinking it then you know the issue is lactose. If that is the issue when she has any dairy products such as pizza or ice cream chew one lactose pill with the first bite of the dairy item. We use the extra strength. You can buy a big box at costco pretty reasonable in their brand otherwise most pharmacy's sell them in their own brand. Good luck! Have a great time at Disney! I heard you now have to bring two doctors notes to get the disney assistance pass. Not sure if that is true but I guess it can't hurt to be prepared just in case. The note just needs to say the child has a disability. According to law they cannot ask for specifics.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-01-2014, 03:02 AM   #9
DustyKat
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Re Imuran: My two have been on it for 7.5 years and 3 years respectively and from the outset neither has had any issues with it. I hope it works well for your lass with no problems and you have a brilliant time at Disney! Good luck!

Dusty. xxx
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01-02-2014, 08:51 AM   #10
CDJ
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My son has been on azathrioprine for a year, 125mg and we had had no side affects at all. He manages dairy with no problem as well. For him he can't have anything with spices, batter or things like pizza and hot dogs.

With the azathioprine it can take a few months to work properly, so don't expect anything to work straight away.
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Son - -14
diagnosed 29/10/2009

Taken off azathioprine Jan 2011 due to needle phobia
carried on with just pentasa until March 2013

6 weeks Modulen Dec 12 / Jan 13

Finally overcame needle phobia after 3 very long years due to getting right help.

Currently on
125mg Azathioprine
3000mg Pentasa
20g Omeprazole
20mg Buscopan
5mg Prednisolone
Isoniazid
Pyridoxine
600mg ferrous gluconate
250mg zinc
Started Infliximab 18/03/15
01-02-2014, 10:02 AM   #11
CrohnsKidMom
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My son had a reaction to Imuran right away-after the 1st dose. He took it at bedtime and within 2 hours had a fever of 105 F, which persisted the whole night. The GI didn't think it was the Imuran and told us to continue taking it. Same story for the next 3 nights, until the GI agreed to let me stop it. Then magically, no more fevers.

My son had problems with lactose while flaring only, so I'm not a lot of help. Personally, I love almond milk, which I THINK is lactose-free. Take care!
01-03-2014, 10:52 AM   #12
Cupkatemom
 
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Thank you all. So far we are doing well on the medicine -- Although I know it takes up to 3 months to work, we've had two days of no stomach pain or diarrhea! Yay! I hope our improvement continues.

We have not had much luck with lactaid pills - she does not like the taste or texture of the pills. However, I picked up the Kroger generic brand the other day and she tolerated those well - so maybe this will help.

Our next step will be the 503 plan with the school. Our principal is amazing and just had a leave of absence to get her autoimmune disease under control so I don't see it as being a challenge. I expect to just ask for unlimited bathroom access -- and emphasize the importance of using the bathroom during the state mandated exams. Can any of you think of anything else to request.

Thanks again!!!
01-03-2014, 11:19 AM   #13
DanceMom
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You can ask for stop the clock testing during standardized state/district tests. That way she won't be penalized for needing a bathroom break. I also plan on asking for permission to be transported to/from field trips and school functions in a private car (instead of bus) so stops can be made for bathroom breaks.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
01-03-2014, 12:14 PM   #14
my little penguin
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Here is a link to the ccfa 504 plan
Read it
http://www.ccfa.org/resources/templa...-504-plan.html
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01-04-2014, 08:55 AM   #15
CrohnsKidMom
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Cupkatemom, I have heard that Lactaid type drops are more effective than the Lactaid pills. The pills worked fine for us, but again, my son was just sensitive to lactose while flaring, and does not have an actual allergy to dairy. I would say it's best to buy lactose free dairy if at all possible. Good luck!
01-04-2014, 09:51 AM   #16
my little penguin
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we were told when the gut is inflamed due to flaring bid - the top most cells can be affected - these would be the ones responsible for lactose.
so lactose could be a bother only during a flare then go back to normal once the inflammation in the gut settles.
01-04-2014, 12:08 PM   #17
Jmrogers4
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Our 504 has grown over time. Elementary was pretty basic, anytime bathroom pass, snacks allowed throughout the day, stop the time testing.
It really changed in junior high we added no tardies, (3 minutes between class = not enough time to use the restroom), extended time for make up work (a lot of his teachers would just give him meat and not potatoes - he would have to do big projects but not all the busy work, worksheets etc., his math teacher would just have him do a few problems to show he understood concept), he was allowed to have food/snacks in class. He can also miss the school day but still participate in school activity. He is also allowed to sit near the door in class
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-12-2014, 09:43 PM   #18
Cupkatemom
 
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So far so good on Imuran until tonight. Girl has chills and low-grade fever. Talked to GI and they think it is either a virus or that sometimes Crohn's patients have unexplained fevers. She was up late last night at a sleep-over. Any thoughts? Two days until Disney World!
01-12-2014, 09:47 PM   #19
Farmwife
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Anyone one else have a virus?
I would talk to your GI to make a back up plan.
Let them know your going to DW (jealous) and what to do if she gets sicker.

Have a great time.
01-12-2014, 09:49 PM   #20
Cupkatemom
 
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No other viruses. On call Dr suggested we get a flu test tomorrow, but also follow up with our GI. He was super nice and made me feel better about calling - so that made me feel good.
01-12-2014, 09:54 PM   #21
Farmwife
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Yes call your GI. At least if you have to call during vacation they know what's going on.
I'm so wanting to go to DW. It's been years since I've been there. Are you staying there or outside the park? The Wilderness Lodge is by far my favorite hotel.
01-12-2014, 10:00 PM   #22
Cupkatemom
 
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We are staying at the Beach Club - rented Vacation Club points (super good deal) and staying in a Villa with my brother and his family. So excited!!! Just praying for her good health - she will be so upset if something interferes. Fever now down with Tylenol (is that ok with Crohn's?).
01-12-2014, 10:08 PM   #23
Jmrogers4
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Tylenol is okay, no ibuprofen or aspirin though. Have fun. I'm quite jealous haven't been for a long time. Jack was in 2nd grade when we went and he is in 9th now. We love the Port Orleans but I remember the beach club. Maybe a rest and swim in the pool during the afternoon so she has plenty of energy for the parks.
01-12-2014, 10:16 PM   #24
DanceMom
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Only Yankees are swimming in the pools right now! Lol Floridians are wearing jeans and hoodies!
01-12-2014, 10:21 PM   #25
Jmrogers4
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It was 45F today that is jeans and a hoodie weather. My youngest wears shorts for anything over 20F, he would probably be roasting down there
01-12-2014, 10:23 PM   #26
DanceMom
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It's actually 52 here right now but was 67 midday. Truly perfect theme park weather. Wouldn't catch me in a pool though! Lol
01-12-2014, 10:53 PM   #27
Catherine
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It a beautiful 91 (33C ) here and I am very sunburnt. Went sailing yesterday.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
01-12-2014, 11:03 PM   #28
Cupkatemom
 
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You all crack me up!!!
01-13-2014, 09:46 AM   #29
CrohnsKidMom
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I dream of hoodie weather! It is a nice day here though... 4C (38F) and sunny. We're having our "January thaw". A couple weeks ago there was snow on the ground and it was -15C! That's about 5F! And that's not including the wind chill factor, which can make it feel like -20C or even colder!
01-13-2014, 10:06 AM   #30
DanceMom
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At 38F we try not to leave our houses! Lol
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Crohn's Disease Forum » Parents of Kids with IBD » Your child's Imuran Side effects? Dairy ?'s
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