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Crohn's Disease Forum » Parents of Kids with IBD » Parents of Pre-Teens and Teens with IBD


 
04-15-2014, 01:40 PM   #1
CrohnsIsGoingDOWN
 
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Parents of Pre-Teens and Teens with IBD

About this Support Group

My name is Lori Smith and I'm the parent of Antonio, my 15 yr old "Crohnie". Antonio was diagnosed in Sept 2010 with Crohn's Disease & our lives haven't been the same.

I'm creating this support group for other parents of pre-teen/teenage "Crohnies". I had no idea what Crohn's was and I work in healthcare.

The main thing we want you to know is that YOU ARE NOT ALONE!!!! We are here to provide a listening ear and great information regarding research, financial, medicines, etc. to help you make the best informed decision for your child.

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Last edited by Jmrogers4; 04-15-2014 at 07:58 PM.
04-15-2014, 03:13 PM   #2
Jmrogers4
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I actually really like the idea of a support thread for Parents of Pre-Teens and Teens with IBD. There are actually a number of situations unique to that age group and going through puberty and having to deal with IBD along with all that.
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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
04-15-2014, 05:24 PM   #3
Gmama
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This is great! I do think there is quite a few of us with kids this age!
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Ginger
mom to LJ 16 (dx 12)
Prednisone 1-30-14 to 10-14
Current meds
Pentasa
Folic acid
Iron
Methotrexate
Back on Humira 8/22/14
Failed
Remicade 11/22/13-7/24/14
Flagyl/Cipro
Imuran
Humira 7/13-11/13)
Entocort
04-15-2014, 07:31 PM   #4
SupportiveMom
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Oh I definitely fit the bill!

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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 ☆
04-15-2014, 08:07 PM   #5
Jmrogers4
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Eye rolls , grunts and all which adds up to most communication and the I'm fine!
04-15-2014, 10:00 PM   #6
Mehita
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His voice is cracking! Hello, puberty!
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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
04-15-2014, 10:07 PM   #7
Emily's mom
 
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Hey Lori!

You found the forum! Yay! This is a great tool!

Welcome!

~Julia
04-15-2014, 10:14 PM   #8
Lori1973
 
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Thank you Julia...our son is 14 years old with delayed puberty, so we are definately looking for any ideas to continue progress. Last week we had scans, swabs and labs done to determine why our son was so tired for about two months...Is it Crohn's related or puberty? Still waiting on results. Will share any info that I receive from our experiences as well as looking forward to any of the info on here to help us!!!
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Imuran 90 mg qd (maybe d/c in June 2014)
Remicade q 5 weeks
Scandishake (prn)
Vit D
Vit B
Flinstones Vit with Iron
Probiotics
04-16-2014, 01:03 AM   #9
Ands
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DS hits 13 in August, so I think we fit the bill of this group! Just about to start on the low FADMAP diet, we know it won't be easy but happy to give anything ago!
__________________
.................................................. .............................
Son Joseph diagnosed July 2012 (aged 10)
Crohn's: oesophageal, ileal, oral and perianal disease
6 week exclusive modulen
8 weeks predisolone
2 weeks azathioprine - stopped after reaction
6-MP 50mg - stopped June 2014 (after 18 months)
Currently on:
Sennoside 18ml daily
Multi Vitamin
Omeprazole 10mg
Prochlorperazine 2 x 5mg
Predisolone as a mouth-wash (as and when needed)
04-16-2014, 05:35 AM   #10
Jane and Nick
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Nick will be 13 in August too ! Sounds like a great idea.
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DOB 13/8/2001
Height 5ft 2" 48 kg
Salofalk x3 twice a day
Imuran 100mg
04-16-2014, 09:47 AM   #11
Kyle's mom
 
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K will be 17 in November. Diagnosed with Crohns in Jan 2010. Resection in July 2011. Hospitalized 2X in last 8 months for obstructions. Colonoscopy and MRE next week. Currently on Remicade and Methotrexate but GI says he sees Humira in near future.
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Kyle's mom
Kyle age 16
Diagnosed 2010
Resection July 2011
Currently on Remicade and Methotrexate
04-16-2014, 09:54 AM   #12
Clash
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Kyle's mom my son, C, is 17 now. He has been on remi since dx 2 years ago and mtx was added shortly after. He has disease progression now so we are going to be looking at changes in treatment as well.

How did Kyle do with surgery and where was his resection located, if I may ask?

I hope a change in treatment brings Kyle into remission and then long may it last!
__________________
Clash
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
04-16-2014, 11:03 AM   #13
Kyle's mom
 
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Clash

K did well with surgery. They removed about 12 inches near the terminal ileum. We are hoping tests do not show scar tissue as the culprit for the obstructions. This disease has affected him so much. He was diagnosed with school phoeba after surgery. He now attends the ged program with only a few students. He does not like to see anyone that may know what is going in with him.
04-16-2014, 11:20 AM   #14
Clash
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C's CD location is in the TI as well, it mainly involved the IC valve but now there is further progression in the in TI area.

I'm so sorry to hear that Kyle has school phobia. C goes to a flex school so he is either in class or doing independent study at home. For the most part he has done independent study this year. Especially after the ng tube, he can take it in and out daily but sometimes just leaves it in for convenience. On the days he will go any where in town with the tube in but won't go by the school.

I hope the program Kyle is in really works for him and helps with less stress!
04-16-2014, 11:49 AM   #15
Kyle's mom
 
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Clash does he have the ng tube for feeding? Kyle gas an aweful time with with the ng in the hospital for obstructions.
04-16-2014, 11:53 AM   #16
Clash
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Yes, he has an ng tube for feeding, it is really small, he places it in the evening most night and removes the next morning. He has not been gaining weight so we decided on the EN feeds to make sure he was getting proper nutrition. I think he has issues with absorption since it is his TI affected.
04-16-2014, 12:06 PM   #17
Kyle's mom
 
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Good luck clash. We may need to go that route in the future.
04-16-2014, 01:00 PM   #18
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My son is 13 ( diagnosed in 2009 at age 8) with CD and UC. He is growing, finally gaining a few pounds, and his voice is cracking He is currently on Remicade, but developing antibodies, so we will see where we go from here. Great forum....I cannot wait to learn from other parents.
04-16-2014, 01:43 PM   #19
greypup
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I'm in. My daughter is 17 now, diagnosed one year ago.
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Linda
Mom to 18 yr old daughter, M, dx'd Crohn's April 2013
TI resection surgery June 2013
Imuran
supplements=Vit D, L-Glutamine, Omega D, Probiotic, Curcumin
04-16-2014, 01:44 PM   #20
Precious ones
 
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Hi - I am a mum of a newly diagnosed son aged 10 of severe crohns found throughout the colon, ileum and in the stomach. He has been on the modulen drinks for 2 weeks and just started azathioprine. His hair is already starting to fall out. I am so scared of the disease and the powerful drugs on such young children but feel like we have no choice.

I have a second son aged 12 who is in the process of starting tests as he has shown growth delay in the last 2 years, night sweats and eye inflammation. Docs dont seem too worried at the moment. This whole journey scares our family. I have been following some of the posts as I am not sure how much emotional support there will be from the medical side of things.
04-16-2014, 01:49 PM   #21
Maya142
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I'm in too - M is 17 now and was diagnosed about a year ago.
__________________
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
04-16-2014, 02:56 PM   #22
Jmrogers4
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Welcome Daltonsmom and Precious Ones, glad to have you on board but sorry you had to find us
04-16-2014, 02:59 PM   #23
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Thanks---it has been a tough year. Despite his remicade, he continues to have symptoms and may possibly need to move to Humira soon. I am not looking forward to the switch, hoping we can hold on to remicade a little longer. He has started to develop antibodies, and the GI said it is unclear how much longer remicade will work for him.

I hate to see him in pain. If I could trade places with him and take this all away, I would do it in a heartbeat.

Thanks for welcoming us to the forum, I am sorry we have to be here....but it is awesome that we are not alone
04-16-2014, 03:06 PM   #24
Jmrogers4
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my little penguin's son although younger had to make that switch a while ago and her son is doing quite well on humira I believe there are a number of kiddos on humira who it is working very well. I hope it provides many years of symptom free relief for him.
I can certainly understand though when something has been working and finally brought some relief it is hard to let it go and once more venture into the unknown.
04-16-2014, 03:10 PM   #25
Daltonsmom
 
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He is really afraid of the shot....he has heard that it burns, and that you need to inject into an area that is a bit more fatty. How in the world do these young folks find a place to inject themselves, when they are so slim ?
04-16-2014, 03:15 PM   #26
Jmrogers4
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I believe they ice the shot spot, leave the shot out to warm up a little and some use a numbing cream. Maya's daughter is also on Humira. I'm sure more will chime in shortly with some of the tips/tricks.
04-16-2014, 03:16 PM   #27
Jmrogers4
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http://www.crohnsforum.com/showthread.php?t=44910
This is the link to the kids Humira lots of tips and information there. Hope it helps
04-16-2014, 03:37 PM   #28
Maya142
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Hi Daltonsmom,
Both my daughters have been on Humira. The shot does burn a lot but they got used to it. We ice for 15 minutes and then inject into their thighs (they're both pretty skinny, so they don't have fat on their stomachs). We do it while watching TV so that they're distracted and after we have ice cream.
The shot is painful but we found that the relief they get for 7 days (they both do weekly shots though some kids do every other week) makes it worth it. Initially I did their injections but now they both do them by themselves. I've heard people say that the syringe is less painful (compared to the autoinject pen) because you can control how fast you inject it. We never tried the syringe though because neither of them wanted to see the needle. Also, we ice after the shot too.
Mylittlepenguin has found a way to make the shot less painful - I think she injects lidocaine into the shot itself. I'm sure she'll be along shortly to explain how she does it.
04-16-2014, 07:21 PM   #29
SupportiveMom
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My daughter is on Humira. Not making a difference for symptoms, but according to MRE she is healing considerably so either that &/or the Methotrexate. Maya said it pretty well. We also ice, and we so it right before bed. It works for her best that way. Good luck!

04-16-2014, 07:37 PM   #30
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Hello everyone,

My daughter is Kayla and she just turned 19 last month. She was diagnosed with UC 7 years ago and now is diagnosed with Crohn's. She is currently on Stelara every 8 weeks, and also has a temp ileostomy due to a stupid doctor perforating her colon during a scope. Am hoping that she can have the surgery to reverse that this summer. She is a Freshman at the University of Florida. We live in the Tampa area. She has been on every medication out there over the last 7 years, and so far Stelara has been the best. Next scope is in a month and praying for more improvement!!

Therese
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