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


 
08-05-2015, 06:51 PM   #271
Mr chicken
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Hugs
And happy b day
Hope he gains weight soon
Last appt gi took a similar look at Lp growth chart
Was ok for now since he weight finally stabilized at least
He had been losing ( but he is on partial en plus crohns exclusive diet as treatment )
Paying more attn to food plus shake intake now
Hopefully Lp will gain soon as well
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DS dx at age 7 Crohns
Humira 40 mg every 10 days
Mtx 12.5 mg -due to juvenile spondyloarthritis associated inflammatory bowel disease

Vsl#3ds iron Zantac folic acid


Aka MLP....
08-05-2015, 07:10 PM   #272
Jmrogers4
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No supplemental shakes for right now but have talked to him about how but it might be a good idea, he's not very keen on it but he really doesn't want MRE because of the barium so might be enough to sway him that he needs additional calories/nutrition
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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
08-05-2015, 08:05 PM   #273
pdx
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Happy birthday to Jack!

E is also a member of the skinny kid club. She hasn't gained since she stopped supplemental EN. We are trying to add high calorie foods to her diet, but we may need to try shakes soon.

That's interesting about the rapid infusion. I would have been nervous too, but getting out in 2 hours would be nice.

Maya--that's so great that your daughter is doing so well on the NJ tube. 20 pounds is fantastic!
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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
08-05-2015, 08:31 PM   #274
Tesscorm
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Happy belated birthday to Jack!! Wow, 16!!

S really began to 'fill in' at around 17-18... you may see a big difference in the next couple of years! And, yes, I'm assuming all will be fine and he's just a skinny one, waiting to fill in!

And love the new pic! It certainly has been a while that we've been here... I remember one of the older pics you had... he was just a boy; now he looks so much more like a young man.
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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
08-05-2015, 08:34 PM   #275
Maya142
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Maya--that's so great that your daughter is doing so well on the NJ tube. 20 pounds is fantastic!
It is wonderful (82 lbs to 100 lbs so far!) - we are switching to a GJ tube and I'm happy to say she will stay on formula for a while. I suspect if she still had an NG tube we might be fighting about supplemental EN now that her Crohn's is under control.

Jmrogers4 - perhaps he could try and tolerate a variety of shakes to help with the taste? Maybe he can tolerate things like Ensure and Boost since he's doing better? I know of some kids at our infusion center who had to have Peptamen Jr while flaring but now tolerate kid's Boost now that they're in remission.
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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
08-05-2015, 10:28 PM   #276
pdx
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Hope the GJ tube insertion goes well, Maya. Will it require a hospital stay? I'm sure it will be an adjustment for your daughter, but I bet she is happy to be almost done with the NJ tube.

(Sorry to hijack, Jacqui!)
08-05-2015, 10:30 PM   #277
Maya142
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Sorry Jacqui, I should update M's thread!

GJ tube is supposed to be outpatient if all goes well. She may need to stay overnight, but right now we're really hoping to manage everything outpatient. We'll know more when we meet an interventional radiologist later in the month. Thanks for asking pdx, hope your girl is doing well.
08-06-2015, 09:36 AM   #278
Jmrogers4
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hijack away.... never know if weight really does become an issue we may head down that road.
08-06-2015, 11:47 AM   #279
crohnsinct
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First can I say how adorable he is?! He has really grown up!

Hate to say it but height is supposed to bring weight with it. I remember when O was growing but weight was stagnant the Gi said he actually considered that a loss because height brings weight. That said, growing up is great! Inflammation usually attacks growth and if he is growing I would be leaning toward skinny kid. That was our GI's theory with O and I'll be darned he was right because she has put on 10 pounds in the past few months with no growth. Just whammo she started packing it on.

On the shake front. If you are doing it simply for weight gain you could also try Carnation Instant Breakfast. Pretty high in calories and yummy. They tried that with me when I was a kid. BTW - it didn't work...just a skinny kid. I think you mentioned he is lifting weights and such??? How about a good protein shake as well? Lots of different options if you main concern isn't inflammation but the EN formulas do boost Remicade performance so......

...and T is the same as Jack. She would eat dog poop on a cracker to avoid the MRE again.
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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
08-06-2015, 02:18 PM   #280
Maya142
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and T is the same as Jack. She would eat dog poop on a cracker to avoid the MRE again.
Too funny
08-06-2015, 09:56 PM   #281
kimmidwife
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Happy Birthday! I second trying the carnation instant breakfast. I think they are pretty good though Caitlyn refused to try them. But she is really stubborn! Can't believe how fast our kids are growing up!!!!
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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.
08-06-2015, 09:59 PM   #282
Jmrogers4
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Thanks everyone, the instant breakfast is not a bad idea I'm pretty sure he will drink the strawberry.
08-07-2015, 08:08 AM   #283
Mehita
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Happy belated birthday to Jack!

Interesting that you should bring up the lack of growth thing again. DS has petered out too. Its so tricky, especially as they get older. My husband is over six feet, but said most of his growth didn't happen until age 17-21. While our GI is slightly concerned, he can't rule out that DS isn't following dad's footsteps, so we're taking a wait and see approach right now.

Does your husband recall when he had growth spurts as a teen?
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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
08-07-2015, 09:11 AM   #284
Jmrogers4
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Dad is 6'1" and has been since about 10/11th grade. Height is still going just not as quickly on 1/2" instead of the 1-2" it's been which I think is fine. I think he's done the "catch up" and is just leveling out so even if he only grows another inch each year until he's 18 (although endo & GI think he will continue with growth after 18) which would put him at 5'11"
He's even about an 1/2-1" taller than his younger brother, which he is thrilled about and about an inch shorter than his best friend.
It's kind of amazing to see people's reactions who have not seen him for a while. We stayed with some friends who have not seen him since July last year and she just couldn't believe it kept looking at him and laughing saying he's so tall.
08-08-2015, 06:41 AM   #285
DustyKat
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Woohoo! Happy Birthday to Jack!



I hope his day was filled with loads of love, fun and laughter!

Wowser! What a change in your lad, he looks fabulous!

Dusty. xxx
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08-08-2015, 06:53 AM   #286
Sascot
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Happy belated birthday! I am also holding out hope my son will grow in the next couple years. He is 16 so getting concerned - his sister is almost as tall and she is 12!! Hope you can get some extra calories into him - it would be a struggle to drink these supplemental things for us too!
01-19-2016, 09:46 PM   #287
Jmrogers4
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Been a long time since I updated on her mostly because things have been great but knew it wouldn't last forever. Jack had his infusion yesterday and his ESR & CRP are creeping up and getting to previous levels at least for him they are at numbers in the past that have correlated with flares and inflammation present. We have decided to shorten the time between infusions to every 7 weeks. He was at 129 pounds last infusion and 123 this time. First thing nurse asked him before he even got on the scale was had he lost weight because he looked skinnier.
Of course, no symptoms to give us a heads up. Talking about MRE this summer unless it's warranted earlier.
Just hoping this change is the nudge his body needs to keep him in remission.
01-19-2016, 10:26 PM   #288
CarolinAlaska
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Sorry to hear of the negative changes.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
01-19-2016, 11:27 PM   #289
pdx
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Hope that the increased frequency does the trick. Any chance of doing a levels test at the next infusion?
01-19-2016, 11:47 PM   #290
Jmrogers4
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Just had them done and they were within acceptable levels, GI is just thinking that maybe he needs to be in the upper levels for it to keep everything in check if that makes sense. Which the way he metabolized other meds I guess it makes a little sense. Still working with insurance and lab to get testing paid for on the last test so I'm sure insurance would not be thrilled.
01-20-2016, 05:39 AM   #291
crohnsinct
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WAs the levels test done through Prometheus? If so they will handle the appeal for you. Also they only charge $2500 for the first test. Subsequent tests are billed at $350.

Gosh! I hope your doc is right about his hunch about his personal level. Are you adding anything else in the meanwhile to help ie: een, steroids? I think he can't do mtx or imuran right?
01-20-2016, 08:58 AM   #292
Tesscorm
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Ugh, Horrible when that other shoe actually drops!

I hope it's quickly brought under control! Perhaps an earlier MRE would help determine the best course forward??

Hugs...
01-20-2016, 11:11 AM   #293
Maya142
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Really hope increasing the frequency helps. M went up to 20mg/kg every 4 weeks - "high dose Remicade" for her joints. I was very worried about infections but she was perfectly fine.

Hope he starts gaining some weight soon .
01-20-2016, 11:22 AM   #294
Jmrogers4
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I think MRE will be done if he doesn't respond to increase. Jack hates MRE, well he hates the MRE drink - doesn't mind the MRE itself and his GI knows that so he basically told Jack we could see how the 7 weeks works but that he would have to have one sometime between summer and end of the year just for status and he will be due for a check even if everything is fantastic.
So now that the seed has been planted and he knows he is going to have to do it eventually this year, it'll be easier to convince that stubborn teenage brain to just get it done if there are still problems. KWIM?
Hoping this is just a little blip and I can go live in my castle again.
01-20-2016, 11:47 AM   #295
Tesscorm
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yes, makes sense to try the 7 week cycle and then see how things look. Because, really, even if an MRE were to show some inflammation, moving remicade up (or increase dose) would likely be the next plan of action anyway. Just as well to see how things are AFTER taking that action.

But, would be good to see him start to gain weight after moving to 7 weeks.

No chance he's lost weight for some other reason, activity, etc.??? but, of course, there are also those creeping CRP/ESR numbers...
01-20-2016, 12:23 PM   #296
Jmrogers4
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Activity level has remained steady, weight room/gym on Tuesday & Thursday. Baseball practice on Mon, Wed & Friday. He, of course, denies feeling any different but his best friend let something slip that he was not feeling well at baseball on Friday and said Jack wanted to punch himself in the gut but then it would just hurt more.
I didn't say anything to Jack but I'm watching him a little more closely though likely with just getting infusion he will be fantastic at least for a while.
01-20-2016, 02:01 PM   #297
Tesscorm
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Don't you love when they forget to mention something! No matter how much you try to get the full picture from them, there's always that thing that they forgot or didn't think was important! Ugh!

Well, I'm sure you've got your eagle eyes on him now!

But, hope you don't see 'anything' because the new remi cycle does it's job!
01-20-2016, 04:11 PM   #298
Farmwife
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I'm sorry to hear about his set back. I hope every 7 weeks work for him better.
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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
01-21-2016, 04:41 AM   #299
Sascot
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Really hope the 7 weeks helps. It is frustrating when they don't mention symptoms although I suppose they don't realise just how paranoid we all are!
01-22-2016, 09:21 AM   #300
Mehita
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Is it possible he's simply done growing?
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