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


 
01-22-2016, 10:46 AM   #301
Jmrogers4
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Is it possible he's simply done growing?
Maybe, I definitely think he's slowed down as far as height, only about a 1/4" this last time but at just a touch below 5'11 he's fine with his height (although he wouldn't mind a couple more inches). It's the weight that is really concerning now.
I guess if he is done growing in height we can see if a little weight comes now, I hope.
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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
01-22-2016, 02:32 PM   #302
Tesscorm
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I've already read that boys keep growing until late teens, even 20, 21??? But, my experience with S is that he had reached almost full height at 16. When he was dxed, a month before turning 17, he was 5'10".

He'd gone from 140-145 lbs to 120ish at dx. Since diagnosis/treatment, he's moved to 170-180 lbs but has only grown about 1 or 1.5 inches.

You do have to consider his weight loss and rising CRP/ESR but, perhaps, height isn't much of an indicator anymore??
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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
01-22-2016, 02:56 PM   #303
Jmrogers4
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Yes I can remember just a couple of years ago that if he made it to 5'6" or 5'7" we would be happy. I of course want him to reach whatever his height is supposed to be without crohn's but dad's 6'1" and I'm 5'4" so I don't know if he would get much more than another inch or so anyway.
Which leaves us with that conundrum without vertical growth indicator anymore, how do we know if something is working well or not?
01-22-2016, 03:08 PM   #304
crohnsinct
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Yeah at this age I wouldn't be looking much at height as I would weight. A 6 pound weight loss sounds significant to me, especially a teen boy. Then when you add in the creeping CRP and sed rate

I have only met a handful of people on the 8 week schedule at our center. I am really hoping this is a simple matter of dose adjusting!

When is the next infusion? They are pulling the antibody/levels test right?
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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
01-22-2016, 03:36 PM   #305
Jmrogers4
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March 8th (7 weeks). We are doing a weekly weigh in to see if we can figure out when weight really starts to drop.
01-22-2016, 03:45 PM   #306
Maya142
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Would he consider an NG tube and doing overnight feeds to get his weight up? Tube feeding is the only thing that worked for M's weight - she gained 23 lbs or so in 2015. She couldn't drink enough Peptamen/Neocate to get her weight up.

Speaking of NG tubes, has he considered an NG tube for the MRE? Might make it a bit easier for him.
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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
01-22-2016, 04:04 PM   #307
Jmrogers4
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We may be heading towards NG. I think judging from the past once we've gotten things under control he gains weight. We've done supplemental EN before for weight gain and he did great gained a bunch of weight (about 30 pounds) but within 6 months of stopping he had lost all but about 10 pounds.
I think his GI (me just trying to read his mind) wants to find the magic combination. When Jack was on the 10ml/kg every 6 weeks he was growing and gaining weight. We bumped out to every 8 weeks and he was good for about 5 months then started losing. What we've noticed is he gains weight right after infusion and 1-2 weeks before next infusion he loses around 5 pounds.
01-23-2016, 10:02 AM   #308
Tesscorm
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Well, given S's positive response to using the ng tube and supplemental EN, you know I'm all for it! If he could do it as S did, 5 nights per week, it wouldn't affect his social life much (ie sleepovers with friends, sports away tournaments, weekends away). Most of the time, S's two nights off were Fri and Sat but, we would switch it up if necessary. Even if he was going away for 4 nights straight, we would just do 7 nights the week before and after. It really was a minor imposition for him - a few seconds before bed, even fewer in the morning. (Not saying it wasn't annoying at times... noise, jams, leaks, etc. but these were few.)

Even if the 7 week cycle gets his CRP/ESR down, I'd still consider the EN. While S looked okay when at 120s, he was definitely 'skinny', those extra calories and nutrition really helped him look 'healthier' and likely helped a fair bit as he transitioned from 'boy' to 'man'. S did EN with ng at exactly J's age now.. from 17 to 19. At that time, he was taking in 1500 cal/night.

02-05-2016, 10:56 AM   #309
Jmrogers4
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Insurance denied every 7 weeks at 10ml/kg but approved every 6 weeks at 7.5ml/kg, so waiting for GI's office to call to see if we need to appeal it or go with the 6 weeks at lower dose. In the 2 weeks since infusion, weight started at 123.10, a week later 130.8 and a week after that 133.4 which seems to follow his regular pattern, of increased weight which he drops all of it in the 1-2 weeks before next infusion so maybe the 6 week interval will be good and maybe since he's been so good that the 7.5 will be enough to keep him there.
02-05-2016, 11:35 AM   #310
pdx
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Wow--that big weight gain right after the infusion is really encouraging. It does seem like increased frequency might do the trick. Hope that's all it takes.
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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
02-05-2016, 11:42 AM   #311
Jmrogers4
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The only thing that worries me is we did the 7.5ml/kg every 6 weeks in the beginning and had to bump to 10ml/kg every 6 weeks before we moved out to every 8 weeks but he was not in as good a place so I guess is it going to be enough now?
02-05-2016, 12:17 PM   #312
Maya142
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So insurance approved 10mg/kg every 6 weeks before? Maybe it's worth appealing then.

That is amazing weight gain - wow! Hope the higher dose works its magic!
02-05-2016, 04:02 PM   #313
crohnsinct
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Wow! That's awesome!

It is true that as they heal their body sops up less of the Remicade so just maybe the 7.5 every 6 will work.

Found this but don't know how to put it in the neat yellow box with study reference the way MLP does.

Arguably, shortening the dosing interval to 5 mg/kg every 6 weeks is appropriate for patients with shortened response to infliximab, whereas double dosing (or interval halving) should be reserved for patients with complete or early LOR to the last infusion.[8] Although this rationale is clinically sound, and has underlain physicians' therapeutic choices for a majority of patients in our study as well, the clinical outcomes of these differing policies have not been previously investigated. Thus, we believe this study is important for being the first to compare between these two management approaches. The results suggest that escalation of the therapeutic regimen to once every 6 weeks appears to be at least as effective as doubling the dose or halving the interval, especially for patients with late postinfusion LOR (re-emerging symptoms 57 weeks postinfusion).
02-05-2016, 05:52 PM   #314
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Hope the change in schedule works great for him.
02-05-2016, 06:58 PM   #315
my little penguin
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Cic when you post you click the comic book bubble
Then the code for quotes appears
Put a space between the "
And
"
Paste your text

Easy as pie

Agree the 7.5 mg every 6 weeks might work this time maybe
What were his levels like at 10 mg every 8 weeks
Did you have them taken 4 weeks in ??



Good luck
Ds was put on 7.5 mg every 6 weeks when he was on remicade
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02-05-2016, 07:38 PM   #316
Mehita
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I've ranted before on this, but why do insurance companies get to decide the treatment of our children? It just infuriates me.

That is some pretty amazing weight gain!
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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
02-05-2016, 08:01 PM   #317
Optimistic
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Completely annoyed at the instance company.
02-05-2016, 08:31 PM   #318
crohnsinct
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P.S. If he is gaining that much weight make sure they weigh him and adjust the amount they put in the bag according...docs write the script for total amount. This is why as the kids gain they get less and less mg/kg and you have to make sure they are watching weight.
02-05-2016, 09:49 PM   #319
Jmrogers4
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Benefit of getting his infusion at his GI's CIC, he gets weighed when we walk in the door and they order the remicade accordingly so his last insurance approval was for 10ml/kg so it's been between 560ml - 580ml depending on his weight.

Agree Mehita, insurance denial says based on research blah....blah....blah but GI is basing his decision on his research of my kid and what has worked for him.

MLP not sure what the exact number is, I thought I had it in my paperwork but not seeing it. I'll have to ask him for another copy. We had it done at 8 weeks and he was definitely in acceptable levels with no antibodies. I remember discussing the numbers. We have not done at 4 weeks.

Just want to make sure he's in a good strong spot lots of stressful things coming around the corner, baseball tryouts, ACT & SAT tests, he and his girlfriend just broke up and our 11 year old dog is going downhill fast. I realize that's it's really very typical high school stress levels but since he seems to be sliding back a little I'm afraid that slippery slope is going to get steep really fast.
02-05-2016, 10:20 PM   #320
my little penguin
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I am surprised they did the level test at the infusion at 8 weeks
Our Gj specifically told us the test is designed for about 4 weeks out
Not that it matters but might help with appeal
02-05-2016, 11:33 PM   #321
Jmrogers4
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We were going to wait until 4 weeks after but then his GI decided it would be worth it to find out end levels since it seems to be the last 1-2 weeks where weight loss happens
02-07-2016, 01:44 PM   #322
Tesscorm
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S has had his levels tested twice; both times, it was tested the day before his infusion.
03-30-2017, 12:57 PM   #323
Jmrogers4
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Wow! it's been over a year since I've updated/posted on his thread. All continues to be well. Despite my skeptical reaction to reducing the amount of remicade he thriving on 7.5ml/kg every 6 weeks. He is a bit over 6 foot tall and continues to grow. We know his growth plates in his wrist are still open as he fractured his left one a little over a month ago.
J graduates from high school in less than 2 months! He is looking forward to a busy summer with a graduation trip to Greece for 12 days then home for a couple of days to get his infusion and off to Camp Oasis where he will be a counselor this year. For anyone reading this and worrying about biologics I can honestly say I don't think he would be able to do all this if it were not for remicade, it really has given him his life back and allowed him to not worry about Crohn's.
His GI has scheduled an MRE for July since it's been just a little over 3 years since the last one that started us on the Remicade journey and he wants to make sure all is okay before sending him off to college.
Hope everyone's kiddos are already there or are on the path to remission I can't tell you enough how much your support, encouragement, and sometimes the smack upside the head that I've needed have meant to me.
03-30-2017, 02:29 PM   #324
pdx
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What a great update! Glad to hear that everything is going so well--I can't believe that he's still growing!
03-31-2017, 01:57 PM   #325
Tesscorm
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It has been a long time!! Hadn't seen 'Tater Tot' in the threads for ages! And, am so glad it's with a great update!

They're all growing up... hard to believe when I first found the forum, us 'oldies' were all here with young kids/teens and now, more than a few, are young adults!

Sounds like his next few months will be amazing! Graduation, Greece, camp and then, off to university! Wow! Best of all, he's feeling good for all of it!

Where did he end up deciding to go for school? Far or nearby? What an exciting time for him and you!
03-31-2017, 02:38 PM   #326
Jmrogers4
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He will be going to Idaho State University it's about 3 hours away (perfect distance for mom) he still gets to go away for college and I know that I can get there quick if needed. He has several friends that are already or will be attending. I think he made a good choice.

It's hard to believe these kids who are not kids making decisions and starting on their own lifes. I sent him to his first infusion without me and of course everything went fine but I was a nervous wreck, guess I better get used to it.
03-31-2017, 04:10 PM   #327
Tesscorm
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Yes, 3 hours isn't too bad. S is about 2 hours... it's certainly a manageable distance.

And, yes, YIKES, there are times/situations when it's a bit tough to let go at the beginning. Infusion... I'm sure the next one will be much easier. S goes to all of them on his own. And, when we schedule one for the centre near his school, I've sometimes even forgotten about it on the day it's scheduled.

Unfortunately, I do still find we need to step in and advocate at times (not sure when they start being seen as 'real' adults!). Perhaps it's a function of being in a 'university' town but we've found the walk-in clinics (including the school's) and local ER department tend to be fairly complacent when it comes to students. And, S is quite knowledgeable (ie shares the right info, asks the right questions) about remi, crohns, etc... but, still he often gets brushed off with 'yep, we're seeing lots of this. Come back if it doesn't go away.' He went to walk-in 2-3 times and local ER twice in 4 weeks and all they gave him was a puffer. Finally, he was so sick, he called me to go with him; I brought him back to ER here and he was dxed with strep.

But, I suppose, all stages in the final transition of them becoming a full-fledged adult! We're almost done our jobs!
09-21-2017, 02:42 PM   #328
Jmrogers4
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Y'all will appreciate this, Jack had his first infusion at college on Monday in his dorm room. The day starts off with a call from the home health nurse "Uh this is T, and I'm calling to schedule a time for infusion" - Um did you call Jack? You're listed as emergency number and he didn't answer, well it's 8:30am and first class isn't until noon he's probably still asleep did you leave a message? No, - well I'll send him a message to call you but he told me he had scheduled for 2:30. Oh- Uh yeah I see that here. REALLY not instilling a lot of trust here with mom, who is 3 1/2 hours away I'm thinking do I need to drive out there to make sure he gets his infusion, No I just need to settle down. I tell myself it will be okay they do infusion all the time, right?

I send Jack a message by text and via Amazon Alexa (if you have a kid away at college this is a handy little item). Get a message back he is all set for 2:30, his meds were delivered last Friday and are sitting in the fridge in his dorm (yeah that's not worrying at all to have $20,000 worth of medicine sitting in a dorm fridge) but tell myself "see it all worked out".

Jack skypes me about 1/2 way through his infusion "look we rigged up something to hang the IV from the ceiling" What? there is no pole? I hear from the nurse in the background "You have a pole at home?" NO! who has an IV pole at home... is it something we need to provide? Oy Vey it is going to be a long year! But Jack really liked him they spent the whole time talking fantasy football...
09-21-2017, 04:20 PM   #329
Farmwife
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Lol, lol, lol
I have an IV pole at home.
Would your son like it? It has cut out of a paper castle at top and princess stickers stuck over the pole.
I'm sure i can find the fake ivy that used to wind around it.
It'll cute in his dorm.

Good grief. How did the poor nurse think this was going to happen?
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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
09-21-2017, 04:24 PM   #330
Maya142
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You can actually get small portable IV poles. We have one because of my daughter's tube feeds. She actually does use it in college!! Let me see if I can find a link.

I can't believe the nurse thought Jack would have an IV pole. Do his patients usually just have IV poles lying around ? I'm surprised the home infusion company doesn't make the nurse carry one.

Glad everything went well finally...it'll take some adjusting to, I'm sure . Probably harder for you than him!!
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