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Crohn's Disease Forum » Parents of Kids with IBD » How many of us here have a second child who is having stomach issues?


 
03-24-2015, 06:54 PM   #1
kimmidwife
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How many of us here have a second child who is having stomach issues?

This is becoming to familiar! We are taking daughter number two for a GI eval on Monday. I am pretty sure the doctor is going to order scopes. She is going on year two of stomach pains. We though it was lactose intolerance originally. We did a fecal calp and it was pretty low so we took her off dairy and she was better for a while then over the summer the stomach aches came back and have slowly been more and more frequent. They seem to be Occurring after eating and it doesn't matter what she eats. Seems like more and more of us here are having second kids with issues.
I am wondering in reality how common it is for families to have more than one child with IBD?
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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.
03-24-2015, 08:17 PM   #2
crohnsinct
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Well you already know we are in the multiples club here in CT.

How low was her FC? How long ago did they do the test? Is this her first GI consult?

I know I have heard the figure of 30% chance of Crohn's if you have sibling with the disease kicked around here...but our GI swears any child's chance is 1% and that if you have a sibling with IBD your chances increase to 5%. He goes on to say that even if you are an identical twin your chances are still only 40% (like that? only?!) of also getting IBD. In our center there are a little over 300 patients and there are only 5 families with multiples.

While we were in undiagnosed land with T, I did a lot of research and found out that stomach complaints are the number one reason for doctor visits for both ped and adult patients. I also found a plethora of other causes for stomach pain. Some that made me hope it was Crohn's.

I guess my point is there are many things that it could be so try to take a deep breath and take one day at a time. I hope it is something super benign!

P.S. I have three children and 2 have Crohns and one (20) has no stomach issues what so ever.
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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

Last edited by crohnsinct; 03-24-2015 at 08:18 PM. Reason: add p.s.
03-24-2015, 08:19 PM   #3
Rose
 
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My son has crohn's and my younger daughter does complain of an upset stomach often and takes Tums. Had bloodwork done on her, including C-reactive protein and everything was perfect. What the heck is going on here in NJ. No family history of IBD. Praying there is nothing more happening here.
03-24-2015, 08:21 PM   #4
Farmwife
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Yes we're in this land as well. We're waiting it out but my son is still seen by Grace's GI.

Hugs
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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
03-24-2015, 08:28 PM   #5
Clash
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Here. My older non ibd kid was having tummy and bm troubles. She had blood work and when her b12 levels were extremely low the GI wanted scopes so upper/lower and all was pristine. She has been supplementing with nasal b12(her choice over shots) and we just retested and she was up to 232 from the 30s, I think.

She's at college and busy, stressed, trying to eat healthy bit is a complete foodie so I think that has all created a perfect storm for her issues(or so I tell myself nightly) but she had been doing better
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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
03-24-2015, 08:45 PM   #6
Tesscorm
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Not trying to minimize the possibility but sometimes our worries can certainly be tainted with the crohns stain! My daughter constantly keeps me on edge... she tells me she has d or soft BMs 'regularly' but says she has always been like that (husband has IBS and is the same)??, over the years has had sore ankles, fingers, hips, etc. but she does lots of sports that would strain joints (soccer, horseback riding, taekwon do)??, random, seldomly understood rashes?? Often low HGB but she exercises alot and doesn't eat a lot of red meat. Headaches but she is a total type A personality and puts a lot of stress on herself... And, she has been like this her entire life.

Some of you may remember I did take her to a rheumo when she had a sore finger because a test which could signal an autoimmune disorder that GP ran came back slightly high but rhemo said 'no, indication too small, and the slightly high number can run in families but doesn't really indicate anything'... IDK... every few months there is something that puts me on edge because, of course, crohns comes to mind right away but... nothing is ever consistent or long lasting (as S's illness was before dx). Not saying that rules out anything but I realize no doctor is going to run every test I'd like, repeatedly, without more concrete signs... so I watch and try to remind myself that it could just be the way she is... <<shrug>>
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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
03-24-2015, 08:57 PM   #7
Catherine
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Three girls here

Eldest with Crohn's
Middle with her own special issues none stomach related.
Youngest low Vitamin D, low B12 and very high folate, normal calprotectin
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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)

Last edited by Catherine; 03-25-2015 at 12:41 AM.
03-24-2015, 09:28 PM   #8
kimmidwife
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Her fecal calp. Was done over a year ago I don't remember what the number was maybe a 30.
She has stomach pains and diarrhea on and off. She has some joint pain at times as well. I am praying it is nothing. She has dreams of being a marine when she grows up. We have bad stomachs in the family I am really hoping that is all it is.
03-24-2015, 09:55 PM   #9
Maya142
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Here too - my older one has complained of abdominal pain on and off, more in the last few months. Occasional diarrhea. She hasn't seen a GI yet.
Really really hoping it's 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
03-25-2015, 01:12 AM   #10
upsetmom
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My 23 year old son has a lot of issues with stomach and joint pain. He did have a blood test once and the DR told him he doesn't have crohn's so he refuses to get scoped.
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Daughter dx CD March2012...
(aged 14)

Currently on:
Remicade
125mg Imuran
3000mg Pentasa
600mg Calcium


Dx Premature Ovarian Failure 2014
On Estrogen and Provera


03-25-2015, 01:57 AM   #11
Sascot
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Yes, as posted, off to paediatrician tonight with youngest. She runs more to constipation ever since she was young, stomach pain and joint pain. Also crossing fingers it's not Crohns
03-25-2015, 06:16 AM   #12
CarolinAlaska
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Our ten year old also has frequent GI issues. Pediatrician started her on Zantac. Misses school about once every two weeks.
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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.
03-25-2015, 06:50 AM   #13
my little penguin
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Same here oldest GI issues - scope was clean
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03-25-2015, 07:25 AM   #14
crohnsinct
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Kim: A FC a year old would be to old for me to take comfort in. I would be running another one and hopefully before the appointment to add more to the conversation with doc.

O had dreams of going into the military also. Oh well. Then had dreams of running for a D1 college on scholarship. Just found out that she has to disclose her Crohn's and once she does that not likely any D1 school will pay her to run. Which is silly because she has been running for three years with Crohn's and all her times are post dx but apparently no school will want to pay her and take the chance she will flare for a big meet. At least she can still run on the team. No big deal. I told her to try for an academic scholarship...more of those out there anyway! Also seriously encouraging her to consider a D3 school with a good running program.

I really hope your younger one's issues are a super easy fix.
03-25-2015, 10:32 AM   #15
Pilgrim
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H's next oldest sibling (she has 6 sibs) has had lots of tummy complaints, and tends to more frequent bathroom trips over the past year or so (but not usually more than 3X day). I haven't taken him in to our family doctor. He seems to be growing. But I'm watching him closely as he seems like the most likely candidate.

Everyone else seems ok but I did take our eldest daughter in for labs because she seemed quite tired all the time - all was well.

I hope your daughter doesn't have Crohn's. One is more than enough! Keep the updates coming.
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
03-25-2015, 10:37 AM   #16
kimmidwife
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Thanks everyone!
I am really hoping it's just teenage stomach issues! I will keep you all posted.
CIC,
I was thinking of asking for an FC but I am going to wait and see what the doctor says.
03-25-2015, 10:37 AM   #17
Mehita
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I've posted my concerns about DS#2. He's tagging along to DS's summer GI appt and doing a Celiac panel then, but I'm hoping to talk the GI in running more. We'll see. It's so hard to distinguish between normal kid stomach aches and big time stomach aches. I've taken to logging everything for DS #2, hoping for a more comprehensive view over time.
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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
03-25-2015, 10:51 AM   #18
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Probably should add myself to this pile. DS (11) has Crohn's, we fear we'll be going down that road for DD (8) but are still keeping our head in the sand for a bit longer. Had her calprotectin done last summer after a virus that she was either taking too long to recover from or had two back to back. Test came back elevated but bloodwork was fine. I had the ped do the first test but then showed the results to the GI. She ordered another test a few months later (winter) and test was still elevated and higher than the first one We did a hydrogen breath test for lactose as she sometimes complains of stomach aches if she eats too much dairy. That was inconclusive at best. We have a script to do another calprotectin before we decide if scopes are in order. She rarely complains of anything (although she is a rather gassy child) and is growing and gaining, not anemic and bloodwork is fine. I hope it is a fluke (head burried) but know the possibility is all too real. We're not ignoring it for sure.
03-25-2015, 11:01 AM   #19
lenny
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I had perfect digestion (no gas, pain, constipation, no worries and could eat anything) when I was young and none of my kids are like that, which is part of the reason that I didn't think anything of my youngest child's early symptoms.

As a child, it took me less than a minute to go and my children always took 20 minutes +.
And they ate healthier than I had.
03-26-2015, 11:03 AM   #20
araceli
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Older kid with no problems, middle one with crohn's, younger with GI and joint issues that started 2 years ago.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
03-30-2015, 10:30 AM   #21
kimmidwife
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We had our appt for daughter number two today. It went well. She is concerned. She is starting with a bunch of blood work and stool tests. Of course daughter number two is very unhappy with this as she hates needles!
Once she gets the results we will decide the next step.
03-30-2015, 11:58 AM   #22
Sascot
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At least they are taking things seriously. Don't blame her for not looking forward to it, my daughter hates needles too!
03-30-2015, 12:28 PM   #23
Maya142
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Glad it went well. Hope the blood work goes smoothly! Could they use EMLA cream or something?
03-30-2015, 11:08 PM   #24
kimmidwife
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She is supposed to call in a scrip for emla. Hopefully she did.
04-03-2015, 11:32 AM   #25
kimmidwife
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So finally got daughter number two to do the bloodwork yesterday. She used the emla cream. It helped I think but I think she had an allergic reaction to it. Her arm turned bright red and she told me this mor in that she had some heart palpitations last night.
Got the stool cultures this morning and unfortunately I saw blood and mucus in it which I am not happy about it. 😔
04-03-2015, 04:22 PM   #26
izzi'smom
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Thinking of you. so unfair, but still wishing for the best. Ds complains of belly pain a few times a week. I have a history of ibs, so I try not to take it too seriously ( unless he's getting labs for something else, in which case I beg for crp lol)
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
04-05-2015, 05:48 AM   #27
DustyKat
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Thinking of you and yours Kim.

As to your original question…would I be stating the obvious in saying I have two kids with Crohn’s?

Always makes my heart skip a beat when someone mentions another of their children having GI issues. Goes without saying that I automatically wish with all my heart that their problems turn out to be something that is both easily explained away and treated.

Dusty. xxx
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04-13-2015, 11:34 AM   #28
kimmidwife
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The assistant office manager told me all the blood work and still tests are back for but she is not allowed to give me the results. Hopefully the doctor or nurse practitioner will call soon with them. Waiting anxiously.
04-13-2015, 12:52 PM   #29
crohnsinct
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That is so weird I woke up this morning and your little one immediately popped into my head and I was fixin to ask if you got any results. Impatiently waiting along with you.
04-13-2015, 05:59 PM   #30
kimmidwife
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The doctor didn't call. 😟
Hopefully tomorrow
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Crohn's Disease Forum » Parents of Kids with IBD » How many of us here have a second child who is having stomach issues?
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