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Crohn's Disease Forum » Parents of Kids with IBD » Update on the girls and resetting for a new, and much better, year


08-16-2016, 07:34 AM   #1
CarolinAlaska
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Update on the girls and resetting for a new, and much better, year

So, Jae is at Camp Oasis where last year she started with a year of health issues that went from being sent home early from Camp to four hospitalizations from September through April. I've decided to hit the reset button and start off much better this year. So far, things are looking good... Last week Jae went to Camp Possible, for kids with Epilepsy. She got to stay the whole week. On Sunday, I picked her up from that camp in Iowa and we brought her to Wisconsin to Camp Oasis. She has really been looking forward to this one. So far, no calls... Keep praying with me that she doesn't have seizures or anything else that could sabotage her time there. She has had possibly one seizure this summer, but since they happen at night, we aren't sure. GI-wise, she seems to be doing fairly well. Other than having no appetite, she seems to be mostly dealing with IBS symptoms - cramps that come and go. Once Jae has recovered from Camp, we'll start homeschooling. She still hates the idea of school and has no interest in participating. I'm hoping she comes around. She still struggles with depression.

Elli is now 12. She will be going into 7th grade. This summer we discovered that she is allergic to corn and that she has asthma. Cutting corn from her diet has helped her GI symptoms tremendously. She hasn't complained of any problems GI-wise since adding that restriction. Her asthma is controlled well with daily meds and inhalers. I'm hoping this means that when school starts, she won't be missing so much school due to sickness.

So, I have hope for both girls that healing will continue to happen and that they can start new. I declare a RESET. Old things are gone, all things are new and will be good with no missed school, full of hope, healing and growth!
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Carol
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.
08-16-2016, 09:14 AM   #2
Tesscorm
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Very nice update to read! I'm glad both are doing well and hope it continues!!!

I'm glad for both but Jae has had a tough time and truly deserves some relief and some tiime of just feeling good!!
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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
08-16-2016, 10:36 AM   #3
Clash
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So glad things are moving along better than last year! I hope things continue to go well!
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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
08-16-2016, 11:30 AM   #4
Farmwife
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So glad for the new update.
Not corn! I know people think dairy is horrible to give up but corn for us was much worse.
I pray the rest of the summer goes well.
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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
08-16-2016, 11:35 AM   #5
pdx
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Thanks for the update. Glad that Camp Possible went well, and I hope that Camp Oasis goes just as well! Really hope that Jae gets some relief from her remaining GI symptoms and depression in the year to come.
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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
08-17-2016, 06:08 AM   #6
DustyKat
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Thanks so much for the update Carol.

Hoping with all my heart that things continue to head into positive territory for both your girls.
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Mum of 2 kids with Crohn's.
08-17-2016, 06:01 PM   #7
Sascot
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Great update, may it long continue!
08-18-2016, 09:59 AM   #8
kimmidwife
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Always happy to hear good updates!
Hoping Jae has a good time at camp oasis and they both have a really good year.
Have you decided what homeschooling program you are going to use? We use time4learning as our core curriculum and then add writing and other fun stuff. My high schooler is not crazy about the history so we are going to try a more charlotte mason approach to history this year using books.
Wishing You guys a great year!
__________________

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.
08-18-2016, 11:11 AM   #9
CarolinAlaska
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Always happy to hear good updates!
Hoping Jae has a good time at camp oasis and they both have a really good year.
Have you decided what homeschooling program you are going to use? We use time4learning as our core curriculum and then add writing and other fun stuff. My high schooler is not crazy about the history so we are going to try a more charlotte mason approach to history this year using books.
Wishing You guys a great year!
We are going to use time4learning for English. For history we are going low-keyed with A History of the U.S. books (suggested in Sonlight and I got them used) with a Charlotte Mason approach. I found a book that has multiple choice questions covering the chapters. I'm looking for some books to do science in the same way with ecology, marine biology, astronomy, etc. She and my husband who is undergoing an ankle replacement soon, will do the reading and discussion together. Life of Fred math has worked well for her in the past. When she finishes Algebra 2, I will have her use Khan Academy to study for ACT. I think her extra learning will be technology and figuring out how to set up a business online. I wanted her to do PE and choir with our local private school she went to last year, but transportation and cost are proving prohibitive. What grade will your high schooler be?
08-19-2016, 12:08 PM   #10
kimmidwife
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My high schooler will be in tenth grade. We use CTC math for the math becuase my daughter wasn't crazy about the math on time4learning.
For science I would reccomend either the quark chronicles which we might try this year or elemental science the sassafras twins. They are both Charlotte Mason based. We used the elemental program. I liked it a lot but found it to be a lot of reading for me.
08-20-2016, 08:51 AM   #11
CarolinAlaska
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My high schooler will be in tenth grade. We use CTC math for the math becuase my daughter wasn't crazy about the math on time4learning.
For science I would reccomend either the quark chronicles which we might try this year or elemental science the sassafras twins. They are both Charlotte Mason based. We used the elemental program. I liked it a lot but found it to be a lot of reading for me.
I'm not sure what ctc math is, and I haven't heard of the other two recommendations for science. I will check them out. She has had physical science and biology already.
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