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Crohn's Disease Forum » Parents of Kids with IBD » Its been a long time


02-07-2016, 10:41 AM   #1
Devynnsmom
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Its been a long time

Some of you will remember me, I am mom to Devynn, 14 years old. I haven't been online in the forum in ages. We had a lot going on and life was overwhelming and I tried to stay off the computer. Devynn was unofficially diagnosed with crohn's disease, then they unofficially changed the diagnosis to ulcerative colitis. She was on a few different meds and they seemed to work for a while. We found out she had a milk and lactose intolerance and cutting out milk and milk products seemed to help a bit. Not to her mind you, she would NEVER admit it lol We decided to try a gluten free diet to see if that helped, and we didn't really see a whole lot of difference. About 18 mos ago, they told us they don't know if she has IBD at all. They think she may have IBS and when she was scoped (twice,,, over a year apart) she had some kind of infection, or bacteria in her colon. She was growing, she was not having any blood in her stool, she "looks healthy", and although she had a lot of stomach pain and diarrheah they decided we were going to take her off of her meds when school let out for the summer.
Around the same time, I realized something was going on in school. I pushed the school to do some testing, and they told me there was nothing wrong. She has gotten good marks all through school, she is fine. After months of brick walls, I decided to have her tested. Sure enough, she has a processing disability. They said she needs at least twice as much time, as the average child her age. The older she gets and the harder the work gets, she couldn't compensate and get through it. We now have an IEP and she is getting help in school. This is the first year of her school life, that she has liked school since probably 2nd grade.
Right now, she is doing well. She see's her pediatrician every 6 mos, unless there are any problems. She see's the GI clinic once a year unless there are any problems. She still gets cramps in her stomach and has had a few mouth ulcers, her joints have been sore a few times and she still has diarrheah. But it is not as bad as before. The diarrheah and stomach aches often are a result of something she has eaten, and although I can point it out 100 times and she will tell me I'm crazy... she is starting to realize that these things are bothering her and has often told me, "Mom, I can't eat --- anymore because I've noticed the last few time's I've eaten it, it really bothers my stomach"
So, we are watching her. She's doing pretty good in school. She has really brought a few subjects up and the one she is failing is something she has never had a problem in.. unfortunately the teacher is not very good. I spoke to her guidance teacher and was told that I am far from the first parent to complain. How sad is that?
So.. how are all the kids doing? I have thought about coming in 100 times, but really don't seem to find time to myself anymore.
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Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
02-07-2016, 02:05 PM   #2
Jmrogers4
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Hi Samantha, glad you have checked in, sounds like things are better in some areas but much the same in others. Glad school is much better and yes unfortunately there are truly some bad teachers that even though any parents complain nothing is done about.
My younger son and myself are lactose intolerant and it's hard at first but we have certainly discovered that the pure yumminess of ice cream is not worth the way it makes us feel and even though I told my son that it was something he really had to learn for himself. Glad she is becoming aware of what makes her feel bad
I'm not on here as much as I would like to be life has been busy but Jack is doing really well for the most part, we seem to continually have to tweek things
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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
02-07-2016, 07:27 PM   #3
CrohnsKidMom
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Welcome back! Glad your daughter is getting some much needed help at school. I have a friend who has a son with a processing disorder. It was so frustrating. But once the helps were put in place, life became so much easier. Glad the GI issues have settled a little bit.
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Son diagnosed with Crohn's March 2013, at age 8
02-07-2016, 07:29 PM   #4
Tesscorm
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Nice to hear from you. Hopefully, IBS truly is the right diagnosis and crohns is a worry you can put behind you!

I hope her school struggles resolve themselves with time. My daughter had a very hard time with math in grades 6-8 and her principal even told me that perhaps I needed to accept that some kids were C level students! She's now in her final year of Finance! Way to go C level students! But, math always was a struggle but I believe her earlier struggles taught her perseverance and a commitment to overcome challenges - and this has certainly been an asset to her as she's gone through her university years. I'm sure your support will get her through the bumps!!

And, wishes she continues to do well healthwise!!
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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
02-08-2016, 12:49 PM   #5
Sascot
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Nice to have you back. Things seem to have settled a bit although it's frustrating not being able to pinpoint anything specific. That's good she has help at school now!
02-08-2016, 08:28 PM   #6
kimmidwife
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Nice to hear from you! Life has been busy for us as well. My daughter is on Entyvio and my youngest child was diagnosed with Crohn's as well.
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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.
02-08-2016, 08:57 PM   #7
CarolinAlaska
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Hi Samantha, I remember you. I'm sorry your daughter has had such a struggle. I had to do a lot of kicking and screaming (not literally) to get my daughter's GI symptoms taken seriously since moving to IL. Finally this year after 2 hospitalizations they finally agree that she does have Crohn's. Good of them. It is crazy how little the parents are respected around here. I am glad things are looking up for your daughter in school.
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
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