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


 
02-18-2015, 08:38 AM   #241
crohnsinct
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Awesome update!

Definitely take advantage of that license. I remember when my oldest got hers. Suddenly running to the market to get me the little things I forgot was a treat! Didn't last long but was good while it lasted. O is already talking about the license...she is not ready...nor I!

Eczema??? Just watch it. They thought O had eczema also until it got worse and we went to the ped derm at the hospital who confirmed it was Remicade induced psoriasis. Not that it matters much. Nothing you could do about it but with psoriasis comes a host of other things you have to watch so helps to know what you are dealing with.
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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
02-18-2015, 12:21 PM   #242
Tesscorm
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Great update!!! So nice to hear he's doing so well and just enjoying life to it's fullest!!

And, I'm with Maya... the driving is scary at first but... then the conveniences become quite nice!
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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
02-18-2015, 12:27 PM   #243
my little penguin
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^^^ yeah that second the watch for skin induced stuff
DS had drug induced rashes from remicade ( atopic dermatisis , blisters etc...)
He was goid on Humira for a while until we upped the dose and added MTX .
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DS - -Crohn's -Stelara
02-18-2015, 12:36 PM   #244
Jmrogers4
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It's always something, isn't it? He came out last night with a bump on his chin and said I think something bit me (definitely was not a zit) appeared out of nowhere, not other spots. I'm choosing to bury my head and say it's just some weird random thing until something else tells me otherwise.
The eczema spot showed up last week and same spots he gets when Crohn's is active so hoping it is just that and bump in dosage will alleviate but will definitely keep an eye on it.
GI did say he thinks it would be a good idea to go ahead and start him on his daily claritin for the season as yes (I'm sorry all my friends in the midwest, East and Northeast) things are starting to bloom. I have noticed an increase in his coughing so we'll be adding that in for the time being and hope it helps any other allergies
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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
02-18-2015, 12:45 PM   #245
crohnsinct
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RUDE!

Does the bump on the chin look like a pimple but not a pimple? I know that was really clear wasn't it? Could be folliculitis. We deal with that a lot over here. Not much you can do about it. Just keep it clean and strict hand washing etc. Same disclaimer...watch it. May show in other places also.
02-18-2015, 07:29 PM   #246
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Love to hear the good updates with kids on remicade!! N Had his infusion 2 weeks ago, he didn't gain any weight this time but grew a half inch. It seems like one appointment he gains weight then the next one he grows. Did you sign Jack up for Camp? I just mailed off N's application the other day. How exciting and scary about Jack getting his license lol. N will get his permit next week, he has 1 more drivers ed class then he takes his test. He is so excited to drive!
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Son, Nathan 14, diagnosed in January 2013

prednisone: 01/13-03/13, 04/13-05/13
pentasa: 03/13- 11/13
6MP: 06/13- 01/14
Mtx: 01/14- still taking
Remicade:01/14- still on it!
02-18-2015, 07:35 PM   #247
Jmrogers4
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Griffin123 - Just got everything signed off yesterday at GI's. Stamps on the envelope and will pop it in the mail tomorrow. He'll be excited Nathan's going. We were just wondering yesterday at GI's if Nathan was going and I told Stacy I was going to send you a message to find out.
This time was a big weight gain for Jack so figure he's getting ready for another big growth spurt up.

CIC - spot is gone so I'm hoping for just a random weird thing and we won't see anything else.
02-18-2015, 09:16 PM   #248
Mehita
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What an awesome update!

If it's any consolation, DS gets a "thing" about two weeks after every infusion on his face. It looks like a pimple, but nothing and I mean nothing helps it. We've tried everything. It's like a little nodule, kind of hard, a little painful to touch. The location varies. After another two weeks or so it just goes away. I have no explanation for it except for the timing with his Remicade infusion. He goes in next week and I'm hoping he'll let me take a photo of it this time around.

Things are def not blooming here. Neg 40 degree windchill this morning at the bus stop! Can I come visit you??
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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
02-18-2015, 09:51 PM   #249
Jmrogers4
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Anytime mehita crocuses are blooming, hyacinth are growing and the sun is shining
03-01-2015, 11:14 PM   #250
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Having flashbacks today. It has been exactly 5 years since Jack was diagnosed. Can't believe that so much time has passed and I didn't know if we would ever get to the point we are at now, at times it seemed hopeless. A healthy, growing teenage boy. Our lives are not consumed by Crohn's disease and most days we don't even think about it. We don't check every stool. While we eat pretty healthy we aren't overly concerned if he eats junk food one day. He was able to go away on a school ski trip last weekend and I was more concerned about him breaking a bone than I was with any issue happening from Crohn's (especially since his brother broke his arm snowboarding the day before he left on his trip).
I hope each and everyone of your kids if they are not currently enjoying remission find that magic and reach it soon and for a long time.
Also want to thank all you amazing people on this forum, you have been a lifeline in bad times, and provided a laugh when I didn't think it was possible.
03-02-2015, 04:47 AM   #251
DustyKat
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This is a fabulous update Jm and such a joy to read!

I hope it lasts a lifetime for your lad, bless him.

Onwards and Upwards Jack!

Dusty. xxx
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03-02-2015, 10:31 AM   #252
Tesscorm
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So great to read a post like this!!

It is so scary when all is not well and it feels like you, your child, your family will never get back to normal! And, I couldn't agree with you more that the friends I've made here have been lifelines during worrying times!

(knock on wood) We're in the same spot with S... Can only add to your wishes that all will eventually get here and we'll all stay here for a long time!!!

Thanks for posting!
06-10-2015, 12:42 AM   #253
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I wasn't going to post anything because I still think it's going to be nothing but it's been eating at me all day. Jack is down 7 pounds over the last 16 weeks. He's gained about a 1/2" in height in the last 8 weeks since last infusion.
All his labs are normal (go figure) but GI was concerned enough to get a FC, just says with Jack's history of being asymptomatic it would allow him to sleep at night if it comes back low. I think it's just because he is working out. He fells great and really doesn't have any symptoms, appetite is down a little over the last several weeks but nothing alarming.
So here's my take on it and see if committee agrees with me and I can stick my head back in the sand.
I think he was having back to back growth spurts and you know how kids gain weight then shoot up in height. I'm thinking he is just done with the massive catch up and is kinda just hitting normal growth velocity???? and is just meant to be a lanky kid. His brother for what it's worth is 5'7" and 127 pounds, Jack is officially 5'8.5" and 123 pounds.

Last edited by Jmrogers4; 06-10-2015 at 12:43 AM. Reason: spelling
06-10-2015, 02:12 AM   #254
Catherine
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If he is eating enough working out as a thin kid should cause him to gain weight not lose.

My experience has been exercise increase appetite when healthy and the child gain weight.

Stick your head in the sand, he just needs to eat more. No worrying to the FC results come back.
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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)
06-10-2015, 04:46 AM   #255
Mr chicken
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Kids his age are designed to gain weight and would have a very hard time losing weight especially 7 pounds.
Fingers crossed on the fc results come back soon
06-10-2015, 06:10 AM   #256
Clash
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I don't have any experience, I can't get my kid to gain weight. I hope the fc comes back great.
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Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
06-10-2015, 07:15 AM   #257
Sascot
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I would keep my head in the sand too. Working out and growing in height sounds like a good reason for losing weight. Hope the FC comes back low.
06-10-2015, 07:33 AM   #258
crohnsinct
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7 pounds sounds like a lot to me especially since the growth alone should result in a bit of a gain. You aren't totally putting your head in the sand. You are doing the responsible thing and pulling an FC. That is all you could do. No cause for freaking and safe to play in the sand. Wait till those FC numbers come in and worst case there is a bit of inflammation. The beauty of Remicade is the flexibility to increase dose or shorten schedule to put out that inflammation.
06-10-2015, 07:33 AM   #259
Mehita
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Once again, we're living parallel lives. DS lost five pounds since his last infusion six weeks ago. He had his infusion on Monday (along with Solumedrol) and then on Tuesday his appetite was back in full force. Maybe it will be the same for Jack?

Every time I think I've got this disease figured out, it throws another curve ball.
06-10-2015, 08:27 AM   #260
Tesscorm
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Now that the weather has improved, has he been outside more? More physically active (on top of his regular exercise)? ie bike riding, pick-up sports with friends, swimming, etc.

Not crohns related but when my daughter was younger, aside from normal growth patterns, she always lost weight over the summer and gained a bit in the winter.

But, always good to check... glad you'll be getting some FC results to consider (hope they're good!).
06-10-2015, 11:36 AM   #261
Jmrogers4
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Thanks everyone, it seems like the committee is on the same page as me. Yes it's troubling but until I get further information I'm trying not to go "there". IF fc shows inflammation we talked about doing an MRE. You can't tell the weight loss to look at him so for now I guess we'll just monitor.
Activity level was definitely up the last couple of weeks and it been really hot already, yesterday was 99F we usually don't see those temps till July. He is out mowing lawns right now before it gets too hot!
In the meantime I'm going to find somewhere to stick my head (and toes) in the sand and enjoy the summer
06-17-2015, 11:13 PM   #262
Jmrogers4
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FC is back and it is 68!!!! so just watching weight and figuring it is a fluke or something. So I'm sticking my head back in the sand. Jack is heading off to Camp on Sunday and I'm chaperoning the flight so that means I get to spend a week in Seattle sans children having a great time.
06-17-2015, 11:41 PM   #263
pdx
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What great news! I bet that at least some of the weight loss was dehydration--it's been such a warm spring in the NW this year.

Enjoy your week off! My husband and I are staying up in Puget Sound for a few days too, after we drop off E at camp. My mother-in-law is going to watch our younger daughter. It will be our first vacation since E got sick last fall, and I'm looking forward to having no responsibilities for a few days!
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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
06-17-2015, 11:53 PM   #264
Jmrogers4
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Hope you're right pdx, enjoy your mini vaca. Looks like the weather is going to be nice and a little cooler than here where we are already in the high 90's and already had a 100 degree day.
Hope E has a great time a camp.
06-18-2015, 02:22 AM   #265
Sascot
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What a relief. Hope he enjoys camp and you enjoy Seattle!
06-18-2015, 08:12 AM   #266
Tesscorm
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Great news! So glad there's nothing to worry about!

And, enjoy your vacation! A week away sounds fantastic!! (for you and PDX! )
06-18-2015, 08:15 AM   #267
crohnsinct
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Sounds great! The FC AND Seattle alone! I love Seattle! Love low FC even more!
08-05-2015, 05:55 PM   #268
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So Jack turned 16 last Friday (YIKES). He had infusion yesterday and has grown another 1/2 inch but lost a pound currently 122 pounds. He appears healthy, is eating and has no symptoms.

So it's still the question of is he just supposed to be one of those skinny people... but it is concerning enough to his GI that if he hasn't gained by next infusion that he wants to schedule MRE to make sure nothing is going on. I honestly don't know what to think he seems healthy than he has ever been.

They did rapid infusion on him for the first time yesterday so infused in an hour, he seemed to handle it well and from what GI's office says that is the way they are going for kids who have had many infusions and no issues. We were completely done in 2 hours time which actually might be nice with his school load this year and not having to miss as many classes. But I was chewing my knuckles the whole time and watching him.
08-05-2015, 06:26 PM   #269
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Glad things went well! Happy Birthday Jack - hope he had a wonderful day!

My daughter also seems to be one of those skinny kids - she has recently gained nearly 20 lbs with her NJ tube and is still technically a pound underweight I think!

Hope the MRE shows absolutely nothing.
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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, 06:37 PM   #270
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Happy birthday Jack! Glad to hear the rapid infusion went well! Hope the weight thing is just a skinny kid thing!

C is not gaining. We have a scope coming up in November so we'll see then I guess. He's juggling a job, a gf, social life and college starting soon with ease so I'm hoping he's got the skinny kid thing going on too!
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