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Crohn's Disease Forum » Parents of Kids with IBD » Tater Tot and Remicade


 
12-18-2013, 03:12 PM   #1
Jmrogers4
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Tater Tot and Remicade

MRI Results are back - narrowing and inflammation at TI and up into small intestine so we are jumping on the remicade train.
GI is going to start working on insurance approval. Have had myself a little cry and moving on. Hoping this does the trick and gets everything under control.
One part of the TI where inflammation is present now he was able to see with scopes in February and it was clear. So I do believe that he was absolutely in remission at that time unfortunately he just didn't stay there long. I think the C-diff set him off and his body just hasn't been able to regain control. So while we have to shelf LDN for now. I think he can come back to it some day.
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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
12-18-2013, 03:21 PM   #2
Brian'sMom
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I have always wondered if GI's that accept LDN would combine with the biologic like other GI's use MTX, etc. Of course you don't need to do that now. Remicade will most likely be all your son needs. I wish my son didn't have an allergic reaction because I think GI's feel it is the best one out there. I hope you get things in a good place soon
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
12-18-2013, 03:24 PM   #3
Tesscorm
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So sorry the MRI didn't show better results.
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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
12-18-2013, 03:37 PM   #4
Mehita
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So far, I only have GREAT things to say about Remicade. I truly hope it works for him!!
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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
12-18-2013, 03:59 PM   #5
crohnsinct
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Oh sorry JM but welcome aboard the party train! O has been in remission for almost a year and a half on Remi. Gained gobs of weight and grew like a weed too! I hope it has the exact same affect for Jack!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
12-18-2013, 04:19 PM   #6
kimmidwife
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Hope it works great for him! Like you said just because the LDN stopped working for now it doesn't mean forever. Maybe at a future date you can try it again Will keep my fingers quadrupled crossed that all goes smoothly with the remicade. Do you know when his first appt will be yet?
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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.
12-18-2013, 04:27 PM   #7
Jmrogers4
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No idea Kim, I don't know how long it takes to get insurance approval. I'm kind of figuring nothing is going to happen until the new year. He has a tripped planned up to Seattle with G-Ma & Papa to see a Seahawks football game with his uncle that he is really excited about Dec. 26-30 (He has to be home in time for his 8:30 am Endocrinologist appt on the 31st).
I'm ready for 2014 and a new year with some healthy kids!
12-18-2013, 04:43 PM   #8
Farmwife
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Hugs, we're thinking the same thing with LDN. I'm so thankful we tried LDN and I DO NOT REGRET IT! Maybe a few years down the road. we'll try it again. Of course we're hoping for a cure by then.


My Christmas Wish for You,
I hope the new drug helps and your boy is back to driving you nuts in the new year ahead.
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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
12-18-2013, 05:11 PM   #9
Jmrogers4
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I'm so thankful we tried LDN and I DO NOT REGRET IT!
Absolutely. We did achieve remission on it and I'm assuming if the antibiotics/C-diff never happened we would still be there. He just needs a little more right now I think. Who knows if we gave it long enough the LDN may have been able to get things back under control I just don't think we have the luxury of waiting much longer. This boy needs to grow! I want to be able to look up to him (literally) in 2014.
12-18-2013, 05:40 PM   #10
Maya142
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Hope it's your miracle drug!
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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
12-19-2013, 12:20 AM   #11
Catherine
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Hoping for quick approval and great results.
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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)
12-19-2013, 02:14 AM   #12
polly13
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Hope it works quickly for him
12-19-2013, 03:50 AM   #13
Sascot
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Good luck - hope it works really well for him.
12-19-2013, 05:30 AM   #14
my little penguin
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Sorry about the inflammation.
Hope the remicade works quickly
And he is growing soon
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DS - -Crohn's -Stelara
12-19-2013, 07:55 PM   #15
Jmrogers4
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Had a message from the GI's office, I'm supposed to take him to the GI on Monday for a TB test (they are not open on Fridays) so they can read the test on Thursday and get started on remicade
12-19-2013, 08:07 PM   #16
my little penguin
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Yep- that was about it for DS as well.
Things to consider-remicade is considered a "procedure " just like a scope so it goes through medical insurance not prescription plan
so if you have an 80/20 plan - you have to cover the 20%.
Unless you use remistart

then its less for a year.
12-19-2013, 08:19 PM   #17
Jmrogers4
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Good to know, I think we are 80/20 until deductible met. My plan year is Aug-July so deductible met with MRI.
Jack wants to know what is involved with TB test?
12-19-2013, 09:27 PM   #18
my little penguin
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An injection under the skin of the forearm.
Wait 48-72 hours to read it for a bump.
DS didn't like it but he wasn't expecting the shot
I thought it was a scratch test ..opps !


We tend to meet the deductible by feb -- mar range but they keep raising it every single year ....
12-19-2013, 09:37 PM   #19
araceli
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Hi. I hope Remi works. So far so good for my daughter. one year on remission and no problems. TB test is just a little sting in the arm and they will check for a reaction in two days I believe. He is not supposed to touch or scratch, but they will explain that to you. For infusion day I give my daughter things to eat and drink. she takes her computer and games and that helps her keep her blood pressure good. If you have any questions feel free to ask. Best wishes.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
12-19-2013, 11:54 PM   #20
Brian'sMom
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TB test is a tiny stick just under the skin. Its really simple. Nothing like a shot. I had one a few years back as a requirement for a job, it doesn't hurt at all.
12-20-2013, 12:56 AM   #21
Mehita
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DS had a TB blood test... quantiferon-tb. He didn't do the skin test, but I think it was because his GI didn't want to wait two days since he was starting Remicade ASAP.
12-20-2013, 10:48 AM   #22
Jmrogers4
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So they poke and check it a couple of days later? He may have to wait until after holidays unless we can get him in today since he is leaving on Thursday for Seattle and I really don't want to tell him he can't go it would break his heart. He has been looking forward to this. We already cancelled a trip to Seattle once the first weekend in November to watch the Seahawks and he is hoping they make it to the Superbowl this year.
Do most of your kids that are on remicade get it done at the hospital or at infusion centers? I'm going to ask if he has other kids that go to the Children's hospital to have it done. Of course I know have a 1000 questions and it is moving really fast....
12-20-2013, 11:48 AM   #23
Brian'sMom
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When we did Remicade they told us if we did it outside the infusion center (which was attached to the hospital anyways) and done in the actual hospital, we would have to be admitted. It already takes so long...and getting released after being admitted is always such a waiting game. So that is why we did infusion center.
12-20-2013, 01:37 PM   #24
Mehita
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Ask about the blood draw version of the TB test. I don't know how it differs from the skin test exactly, but it's worth asking if time is critical.

Our first Remi was inpatient because the infusion center was full and they didn't want to make DS wait any longer than they had to. Like Kathy said, it's time consuming for admittance, discharge, etc.

The next two times we went to infusion centers, one at an adult clinic and one attached, but not in, our children's hospital. By far the best place was the children's infusion center. Pediatric nurses, fun kid stuff, and you're in and out.

You might want to check with insurance too. Sometimes location influences the cost. Definitely pick one location and stick with it though. Because we went to three different locations, it's messing up Remistart paperwork.

DS is excited for Jack. Hope it's his miracle med!
12-20-2013, 01:40 PM   #25
Jmrogers4
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TB test done. I got to talk to the nurse and she asked if doctor had told me anything about infusion - nope just said they would get started on insurance approval. They do them in the GI's office, they have an infusion room so there is one worry down.
He is down 3 more pounds He says it hurts when he eats and he is getting full really fast. We'll increase the shakes again.
12-20-2013, 04:40 PM   #26
Sascot
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Sounds like the Remicade can't come quick enough. Hope he still manages to enjoy the trip!
12-20-2013, 05:01 PM   #27
araceli
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My daugther's is done at Children's Oncology center. One thing that I am always on top, is that they do the infusion at a slow pace, some times they want to kick out patients fast and kids get sick. I have known of some cases. One nurse told me that blood pressure should not go lower than 20 points from the first reading.
12-22-2013, 11:03 AM   #28
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I hope Remicade is your miracle for 2014! My son has grown a little over 3" this last year on Remicade after not growing at all for one year.

My son now kinda looks forward to our regular routine - he gets movies to watch that his younger brother can't see and we just veg out!

I would wait and register for Remistart once you are paying out-of-pocket. It does only cover 1 year and then you have to reapply. My last 2 infusions on our insurance year are finally covered by insurance, so I don't need Remistart. Great to have it once you are back to working on your deductible.

Good Luck!
12-23-2013, 05:02 PM   #29
Jmrogers4
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Insurance just called to tell us we have been approved for remicade. Went back this morning for TB check, no TB so now we just wait for GI's call to set up schedule - Yikes!
12-27-2013, 05:03 PM   #30
Jmrogers4
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UGGGH!!! Mother-in-law just called Jack is laying on the couch at his Uncle's house and is coughing and saying his stomach hurts! They are up in Seattle. I did send some Levsin with Jack just in case. I think I will try and skype with him so I can look at him and see if he is bad or it's just a cold. Hoping it is just a virus.... No call from GI's office yet so no start date on remicade
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