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Crohn's Disease Forum » Parents of Kids with IBD » Here we go again...?


 
11-26-2013, 03:03 PM   #301
ronroush7
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That's great news.
12-03-2013, 01:00 AM   #302
Mehita
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"Mom, I decided that starting today I'm going to be in remission forever."

Ok, then. Sounds good to me.
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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
12-13-2013, 01:30 PM   #303
Mehita
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We're at the hospital for infusion #3. The nurse said that #3 and 4 are when reactions tend to happen, if they happen. I didn't know that. Good thing they're not checking MY pulse and blood pressure right now. DS said his radio alarm woke him up this morning with the song, "Best Day of Your Life" so I should stop worrying. Apparently, it was a sign.

They are much more attentive at the children's hospital here than the adult cancer center from last time. The nurse comes in every 15 minutes and they take vitals every time. Last time, we pretty much sat in a room by ourselves for four hours. Definitely coming here for all future visits! And they just stopped by to see if we wanted slushies. Nice.

And there was this sweet woman in the waiting room who's older teen son has cancer and was handing out handmade ornaments to all the kids. It made me count my blessings.

Couple of questions...

We had labs run when we got here and all is good except liver numbers. AST is 53 (0-35) and ALT is 55 (0-50). Both were in the 30's a month ago. The only other thing that caught my attention was Alka Phos jumped up significantly from 170 a month ago to 332 today (130-530). The Alka Phos can just be indicating a pending growth spurt, right? What about the liver numbers? Same thing?

CRP continues to be normal. Woohoo! That's like a record for us!

So, thoughts on labs?

Last edited by Mehita; 12-13-2013 at 02:10 PM.
12-13-2013, 01:38 PM   #304
kimmidwife
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I just googled it and I don't want to alarm you but you definitely need to discuss that with the doctor. All three of those lab studies elevating can mean the remicade is adversely affecting the liver. Here is the link:

http://livertox.nih.gov/Infliximab.htm

Remember though I am not a doctor so you need to discuss this with your doctor.
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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.
12-13-2013, 02:08 PM   #305
DanceMom
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Those liver numbers are still okay (according to our GI). A's AST was 41 (12-32) and her ALT was 38 (8-24) with only Pentasa. He thought those numbers were fine although I would have preferred to have them within the normal limits set by the lab. He said they don't start to worry until they become double the normal limits and even then they just monitor more closely. We had to stop 6-mp when A's AST was 92 and her ALT was 327 (just for a comparison).
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
12-13-2013, 02:24 PM   #306
Tesscorm
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Stephen also had ALT and AST steadily climb over a couple of months (ALT from 56 to 100 and AST from 38 to 62) for no reason (no remicade at that time). Asked the GI and he wasn't concerned, said they would just watch it. They then just gradually decreased again over a few months, to lower than they'd ever been... with no changes at all (to meds, diet, etc.). I wouldn't worry overly right now, just keep an eye on it.
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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
12-13-2013, 03:22 PM   #307
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Glad things are going well.
12-14-2013, 01:44 AM   #308
DustyKat
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We havenít done Remicade here but the ALT and AST numbers arenít too bad so it would be something that I would trend tracking at this point in time. They may well be a one off glitch. As far as I am aware they are not sensitive to growth.

Alk Phos on the other hand is definitely something that responds to growth spurts in children and puberty in adolescents and often normal reference ranges are increased in paediatrics to reflect this. Both Matt and Sarah had significantly increased levels in the months following surgically induced remission.

Sending loads of luck and well wishes for continued success!

Dusty. xxx
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12-14-2013, 11:52 AM   #309
Brian'sMom
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So glad you are doing so well on Remicade. Our GI's have always said that is the best biologic. We had the reaction on the third time. But we kinda had signs. After the 2nd infusion ds wasn't feeling as great as after the first. The cramps were coming back. So I think it was already showing signs "his" body didn't like Remicade. This is all just a guess of course...but it seems like when the drug is fixing things and you're feeling great then the reaction thing doesn't happen. Just a thought of mine Hugs and best wishes for some peace and long lived happiness on Remicade
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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.
12-14-2013, 01:29 PM   #310
Mehita
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I still haven't heard back from his GI, but I'm guessing we're just on the wait and see plan. He goes back in a month and I'm sure we'll just re-test then.

I should mention that in October when he wasn't feeling well and was admitted, he lost five pounds. Since then (roughly 6 weeks now) he's gained those five pounds back and added one extra. He's also grown about 1/4" in that same time period. I think that explains the alkaline phosphatase. Hoping, the liver #'s are just a fluke. The last time they were elevated it was in a similar situation, just shortly after his resection when he was feeling great. Everything normalized a couple weeks later.

I never ended up calling the endocrinologist since we noticed he was gaining and stretching. We'll see what the GI says next month.

We are so desperate for Remicade to work. I'm sure you all know the feeling! Thank you for all the feedback.
01-28-2014, 10:17 PM   #311
Mehita
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Hmmm... nothing alarming, but we are six and a half weeks since the last Remicade infusion and the poop is a changin'. Starting to get mushy again. He says he feels fine. No stomach aches, appetite is the same, still 1-2 BM's a day. Could be anything, right?

Do I just wait and see how the week goes? What would warrant bumping up infusions? Would his GI make him wait it out? This is his first on the eight week schedule.

We're on high alert after the strep throat exposure this weekend, but so far everyone is doing fine, I think? Little brother has a slightly pink eye that I'm watching, but otherwise everyone seems to be fairly well.

Nine more days... fingers crossed!
01-28-2014, 10:25 PM   #312
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Fingers crossed. Hope it's nothing. Jack has pretty much 1 BM a day and he had 2 on Sunday and completely freaked himself out thinking the remicade wasn't working. Made him think about everything he ate on Saturday (a bunch of junk it turns out). Been fine since then I think it was a little bit of a wake up call though that if you just eat crap it comes out pretty much the same way.
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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
01-28-2014, 10:49 PM   #313
Maya142
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That happened to M and her GI did a Remicade levels and antibody test at the next infusion. I can't remember exactly but I think her levels must have been low because we moved to a 5 week infusion schedule after that.
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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
01-29-2014, 12:40 AM   #314
Mehita
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Does the test have a specific name? Just antibodies test? Did you get results back that day or does it need to go out?

And she went from eight weeks to five?
01-29-2014, 07:16 AM   #315
crohnsinct
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O never made it to 8 not even right after the loading doses. Few kids do. They metabolize Remicade and some faster than others so it isn't that the Remi isn't working it is that there isn't any left in their body.

I would watch over the next day or so and if things keep sliding give a call and they will probably slip you in for an infusion and change the interval.

The levels test is very expensive ($2,500) and many insurance companies won't cover it. They used to as O was getting levels pulled frequently. It takes a few days to a week to get back. They want docs to treat based on symptoms and blood results. I know, I know...just plain stupid because in some cases it could be Remi not working at all and you spend months fiddling around with schedule when all along there were adequate levels and the drug just doesn't work.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-29-2014, 08:50 AM   #316
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∑ Stoma
Cinct when did you get the test? We had it last May and the price had just dropped to $250 (was $750). Not covered by insurance either. I'm on the east side of canada and they still ship the test to california.

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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
ibdsupportivmom.wordpress.com ☆
01-29-2014, 09:39 AM   #317
Tesscorm
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Mehita, S was tested for remicade levels and antibodies the day before his first 8 week infusion and they found no remicade in his system (nor any antibodies). He was then moved to a six week cycle and they tested again, this time there were adequate levels of remicade (and, again, no antibodies). Test is sent to Prometheus labs and it takes a few days (week or so??) to get results back.

I have always heard the test is very expensive - my friend has paid twice for her daughter - once it was $250, next time approx $2,000. Neither time insurance covered it (and can't remember what the reason was for the increase in cost). I have not paid for Stephen but I believe that it may be because he is enrolled in a remicade study???
01-29-2014, 12:12 PM   #318
Maya142
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Mehita- M was never had infusion at 8 weeks, what I meant was she started having symptoms around week 5 after her loading doses and her GI moved the infusion up to 5 (or really 5.5) weeks and we did a Remicade levels test then. After that we did infusions every 5 weeks for a while and then every 4.
We were also told the Remicade levels test is very expensive but our insurance covered it.We did it twice, once then and and then later when we trying ti decide whether to switch to Humira.
01-29-2014, 12:14 PM   #319
crohnsinct
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I never had to pay for our tests but that was because O had them before they changed the policies and after we met our out of pocket max. I remember the $750 figure but now I hear the$2,500 figure thrown around by the other parents and nurses at the infusion center so maybe it started after last May. From what I understand they used to be able to send the test out to a few different labs but now only Prometheus does it so they have a monopoly.

Our doc isn't happy with the decision but opts for shortening interval and then upping dose to see if it helps. If not then draws level/antibody test with patient permission and agreement to pay.

O has been so good for so long and with the addition of MTX I asked to extend out. He agreed to go from 5 to 6 weeks. I asked at last appointment if we could do 7. He said not without a levels test and gave me the $2,500 quote. Needless to say I agreed to stick with the 6 week schedule:/
01-29-2014, 12:28 PM   #320
my little penguin
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Never got to 8 week schedule here either.
Only every six weeks at a higher dose.
We are still fighting insurance to cover the cost the antibody test that was done over a year ago .$2500
DS didn't have a reaction until 7 months out.
Not on infusion 3 or 4
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01-29-2014, 12:42 PM   #321
Jmrogers4
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Jack's GI said we would do the antibody test since his bloodwork is usually not a reflection of disease activity and no big outward symptoms (besides failure to grow) but at $2500 we'll have to figure something else out.
01-29-2014, 12:47 PM   #322
crohnsinct
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Info about the test.

http://www.marketwatch.com/story/pro...est-2013-04-30

http://www.anserifx.com/about.aspx
01-29-2014, 01:07 PM   #323
crohnsinct
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O.K. you all peaked my interest and I called Prometheus. The very lovely rep explained the cost is $2,500. They bill the insurance company. If the insurance company denies the cost they will appeal on your behalf. They will go through as many appeals as possible to exhaust the whole procedure. If they exhaust all options and it is still denied they will reduce the cost and bill the patient $250. Depending on household income they have a patient assistance program also but the most you will be on the line for is $250.

Phew! So getting an extra week wasn't worth $2,500 but I might go ahead and approve $250 to get an extra week!
01-29-2014, 07:33 PM   #324
Mehita
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Is it just me or is that whole process just silly? Why not just charge $250 and skip all the appeals and save patients stress? And a $2250 difference? Sheesh!
01-29-2014, 07:42 PM   #325
Jmrogers4
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Thanks CIC, that certainly makes a difference in what we will decide if it comes down to that
02-03-2014, 11:45 PM   #326
Mehita
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Three more days, three more days, three more days.

If I wasn't so emotionally attached, this would be fascinating. It's like watching a balloon deflate in slow motion. BM's have held at 2-3/day this last week but now fatigue is creeping in. Maybe he's growing? Too many factors to really know anything. Very frustrating. He ate a whole gluten free pizza last night by himself and topped it off with ice cream so I'll say his appetite is fine.

I think I'll send his GI a recap of the last couple of weeks and see what he says about testing for antibodies.

Can someone explain what the normal range is for the test? What's low? Can it ever be too high?
02-03-2014, 11:49 PM   #327
Mehita
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Never mind... found what I was asking.

http://www.prometheuslabs.com/Resour...et_DX06042.pdf
02-04-2014, 07:58 AM   #328
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Hope those 3 days go by quickly. I'm sure I'm going to be the same way. Already eagle eye about how much he is eating, appetite is still there.
A whole Pizza and ice cream - sounds like a teenage meal. Isn't it lovely to see them eat like a normal teenage boy, I certainly don't mind when I go to get something out of the pantry and it's gone because at least he is eating
02-08-2014, 05:26 PM   #329
Mehita
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He made it to eight weeks and they ran the basic labs. Hope you're sitting down for this... all his labs, everything, came back normal. He has not had completely normal labs since June, 2009!

We didn't test trough levels because everything was normal. His GI said had the basic labs come back with something, then he would have tested.

I have no words to describe how happy I am right now, so let me describe it with bananas...
02-08-2014, 05:46 PM   #330
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Wow, Wow, Wow!!! That is brilliant Mehita!

I am SO happy for you and your lad and sending MEGA loads of luck and well wishes that it lasts forever! Onwards and Upwards!

Dusty. xxx
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