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07-31-2017, 09:25 PM   #1
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
Twins with Crohns

My 8 year old daughters have both been diagnosed with Crohns. Emma was diagnosed at 7 and Abby at 8. In wondering if there are any other sets of twins out there who have the same diagnosis?


07-31-2017, 10:59 PM   #2
pdx
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Join Date: Dec 2014
Location: Portland, Oregon

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I can't think of any other sets of twins whose parents have posted here, but there are several families with 2 or more kids who have been diagnosed with IBD. I'm sorry that your kids are having to deal with this at such a young age.
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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
08-01-2017, 07:33 AM   #3
Maya142
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I can tag crohnsinct who has two daughters with Crohn's.

Both my girls have a form of juvenile idiopathic arthritis (JIA), which is also autoimmune, but only one has Crohn's.

There are several families with siblings who have Crohn's but I can't think of any sets of twins...
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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
08-01-2017, 09:00 PM   #4
Mehita
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Join Date: Nov 2011
Location: Minnesota

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Not twins, but jmrogers son and husband both have Crohn's.
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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
08-03-2017, 12:11 PM   #5
Jmrogers4
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Yes, Some studies show a genetic link for Crohn's and we have had several parents with at least 2 of their children with Crohn's I don't think many are active on the forum much anymore. I know of another family with twins but I think only one of the boys has Crohn's at this point. I'll see if I can find the study showing the increase in the likelihood of having siblings with Crohn's. I think for a parent that was diagnosed it was a 20% for a child and sibling was a little higher than that.

Mehita is right my husband and oldest child have Crohn's. Husband was diagnosed 25 years ago at age 25 and my son was diagnosed 8 years ago at age 10. I will say when our son was diagnosed at least we didn't have the steep learning curve anymore, we just had to learn the differences for a pediatric patient.

Off to see what I can locate. MLP do you have your handy research fingers?
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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
08-03-2017, 02:45 PM   #6
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
I have read some info on twins with Crohns and talked to our GI specialist about it. I'm just hoping for stories on what meds work for one will work for the other. Our daughters are identical. Thanks!


08-16-2017, 08:32 AM   #7
jsmith5532
 
Join Date: Aug 2017
I have identical twin girls who were both diagnosed last year. One daughter was diagnosed in March 2016. Her twin was diagnosed in June. Their symptoms were the same but appeared different. One had diarrhea day after day. The other one would have diarrhea for a period of time and then be fine for a period of time so that I mistakenly thought it was a stomach bug. It would come and go. The first one would have it and it wouldn't go away.

For the first one diagnosed, we were going to do the feeding tube but during the training we couldn't push past inserting the tube to do it so we switched to Remicade.

When my second one was diagnosed, we put her on Remicade. Their GI doctor said their scopes were very similar. Both have Crohn's in the terminal ileum.

Both take folic acid and methotrexate as well although the first one was on metho/folic acid first for a bit of time. She did injections but was able to move off that to pills. The second one we started on pills right away.

They are doing great and I am very thankful. From age 9 to 10 they only grew and inch but from 10 to 11 their grew about 3 inches each.
08-16-2017, 09:26 AM   #8
pdx
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Join Date: Dec 2014
Location: Portland, Oregon

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jsmith: Welcome to the forum, and I'm glad to hear that your daughters are doing well!
08-16-2017, 09:30 AM   #9
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
It's nice to know another mom with diagnosed twins. Were they 9 when they were diagnosed?
I'm glad to hear the MTX is helping that gives me some hope.

My daughter Emma has more ulcers and inflammation in her colon and small intestine and TI, her sister Abby had ulcers throughout her esophagus and her small intestine. Emma has started the MTX but Abby is strictly on ET right now.

Welcome to the group. I'll make sure to follow you.




08-16-2017, 09:32 AM   #10
jsmith5532
 
Join Date: Aug 2017
Thanks, PDX. I've lurked for a bit but finally jointed.

I should have mentioned that the girls' father has Crohn's as do two of their half-siblings.

Their father was highly allergic to Remicade but was a successful course of treatment for many years for their half siblings.
08-16-2017, 09:35 AM   #11
jsmith5532
 
Join Date: Aug 2017
It's nice to know another mom with diagnosed twins. Were they 9 when they were diagnosed?
I'm glad to hear the MTX is helping that gives me some hope.

My daughter Emma has more ulcers and inflammation in her colon and small intestine and TI, her sister Abby had ulcers throughout her esophagus and her small intestine. Emma has started the MTX but Abby is strictly on ET right now.

Welcome to the group. I'll make sure to follow you.
They were both diagnosed at 9 within months of each other. I kick myself that the second one wasn't diagnosed as soon as the other because I was wrong about what her symptoms really were.

How old are your daughters now? How are they doing? If I can figure out the follow, I will do that same!!
08-16-2017, 12:17 PM   #12
Maya142
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Hi and welcome jsmith5532. Glad both your girls are doing well on MTX and Remicade! That is wonderful!

Since you posted in this thread, you are "following" it - you'll get emails when someone posts in it.

You can also start a new thread if you have a specific question.

Hope your girls continue to do well!
08-18-2017, 11:21 AM   #13
crohniekid
 
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Join Date: Mar 2014
Location: Edmonton, Alberta
I have identical twin boys. R was diagnosed at age 9 with severe crohn's in his colon and terminal ileum after a year of diarrhea, night sweats, headaches, weight loss and lack of growth. He is one of the kids who has perfect bloodwork and stool tests despite flaring. He failed both nutritional therapy and imuran in the first year and had his worst flare ever. At this time he was also diagnosed with arthritis and psoriasis. He moved up to a remicade/MTX combo at 10. It took about 8 months for it to really kick in. He is doing very well on it but we continue to stuggle to keep his levels in theraputic range.

T was diangosed with moderate crohn's found throughout his entire digestive tract. His primary symptoms were joint pain, weight loss and fatigue. He had very, very few gastro symptoms and those would come and go. But his blood and stool tests were extremely abnormal and he was diagnosed in 3 months. He did very well on nutritional therapy, gaining back all the weight he had lost (10lbs). Because he is considered asymptomatic, his age (puberty is right around the corner) and the fact that his brother did so poorly on immunosuppressants, his GI decided to also put him on remicade/MTX. T is doing fabulously so far.
We have no family history of IBD.
08-21-2017, 09:13 AM   #14
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
Hi Crohniekid,

Sorry to hear son R has had a hard time. My daughters disease also targeted different areas. Emma's was mostly in her colon and TI. Abby's was esophagus and small intestine. Kind of interesting how it was so different. Their diagnosis was 1.5 years apart and Emma was diagnosed first. Both had symptoms of diarrhea, weight loss, low energy, anemia, fevers,etc.

So far ET has worked for both my daughters- at least for weight gain. For Emma it didn't heal any of her GI problems, in hoping it will for Abby.

How do your kids handle having this disease? I've heard "why me's" "it's not fair" "I hate my body" remarks from my 8 year olds and it breaks my heart.

I do plan on having them see a psychologist this year off and on. They have talked to the school counselor, but I think they need more.



08-21-2017, 10:53 AM   #15
Maya142
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My kiddo has done really well with seeing a psychologist. Having a chronic illness is HARD and having it as a child or teenager is even tougher. She was very against seeing a psychologist (she was 16 and a very stubborn teenager!) but within a couple months, she realized how much it helped her and now she reminds me to make appointments!

Both my girls have a form of juvenile arthritis. In some ways it is tough because one of my girls has more severe disease than the other. But in other ways, it helps, because there is always someone who really "gets it."
08-22-2017, 09:15 AM   #16
crohniekid
 
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Join Date: Mar 2014
Location: Edmonton, Alberta
bethhall3434

R definitely had a harder time adjusting to his diagnosis. In the space of 9 months (the time it took to get a diagnosis) the boys went from being the same height and weight to a 3" difference and 25lbs! R resented his brother for being healthy and started hiding symptoms thinking that if he didn't acknowledge them they would go away. He saw a psychologist at 10 after his big flare, because at that point he felt he was never going to get better and fell into a pretty significant depression. For him the accompanying arthritis was the worst to deal with as he is a very competitive athlete and at that point he could no longer participate at all. R was VERY VERY against seeing someone and only went for 6 months before he flat out refused to go any longer. At that point he was feeling significantly better with the remicade and I agreed that he could stop.
T is much more easy going than his brother. Where R is the strong, silent type, T is more open. Getting diagnosed was much easier and so much faster for him. And he felt almost instantly better on the nutritional therapy (which R failed twice). R was upset that T got sick, but like Maya said, felt better that he was no longer 'alone' despite having very very different symptoms.
Now that they are both feeling better they find it more of an annoyance that an a burden...although they like getting the day off school and going for ice cream or cheesecake after their appointments! They will be going for remicade at the same time for the first time at the next infusion and are planning to have a lot of fun with the nurses and their doctor (who has also never had them together).
08-23-2017, 10:01 PM   #17
Farmwife
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Join Date: Apr 2012
Location: Michigan

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Lol, my twin and I use to pull so much stuff....... it's probably best I not tell you. LOL

My girl also loves her infusion because she gets spoiled rotten.
She also likes all the doctor's appointments because she knows that will stop at the gift shop and maybe buy her something (oh who are we kidding, we always get her something).
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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
08-23-2017, 10:32 PM   #18
kimmidwife
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I have two daughters diagnosed with Crohn's but they are not twins. They are 10 years apart in age. My o,dear was diagnosed at age 11 and the younger at age 7. It is not easy having two with Crohn's but like you guys said I think my older one feels it's nice not to be so alone with this.
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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.
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