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Crohn's Disease Forum » Your Story » My journey with my 11 year olds illnesses


12-23-2017, 07:22 AM   #1
Momof3amazingkids
 
Join Date: Dec 2017
Location: Ventura, California
My journey with my 11 year olds illnesses

So glad to find this forum!

In 2016 my daughter was hospitalized with severe stomach pain, nausea for 5 days. Unfortunately in our area there isnít a GI specialist so she didnít get scoped. They ran all tests possible. She tested positive for h pylori and they released her with a whole lot of medications and recommend seeing a specialist. We never did. She was better and we attributed this to anxiety and stress from school. The antibiotics helped but her diet suffered. She is a poor picky eater. Finding foods that satisfy her isnít easy.

She started getting migraines in June of this year. In August she came to me telling me she has diarrhea. My daughter is a very private person so who knows how long she had it before she told me. Since August to today she has lost 5 lbs, went from a very active 11 year old to a sickly, frail little girl. We have done blood test, stool test, attempted antibiotics but her tummy couldnít tolerate it, and we finally saw a specialist at UCLA. Last night I got the call that one of her test came back really elevated and it was concerning. I went into a daze after she said those words. She mentioned IBD and she wants to scope her. Everything else she said is a blank to me. She is putting in for the referral and sometime next year she will have the procedure.
The past stool samples I had to get her poop didnít appear like diarrhea and she is not acting as lethargic. Could she be getting better without any treatment? Do we continue with the scope?

Thank you for reading!
12-23-2017, 08:04 AM   #2
my little penguin
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Sorry you had to find us
But she really needs a scope to figure out what is going on
There is a lot of things in GI land that can cause kids issues
Scopes are the way to figure that out
Ds was dx at age 7
Complete surprise for the GI he was thinking something else and we were in shock
Ds is now 14
Ibd in kids tends to be more aggressive than adults and does need treatment even if you have minimal signs on the outside
Weight loss is a huge red flag
A kids body is designed to gain and grow
When it stops and starts losing weight
That means the body is trying to protect the organs

Ds never had diarrhea at dx
He had constipation
But still has Crohns
A lot of kids donít
They will do scopes (upper and lower is standard)
Plus imaging (mri woth enterography) of the small bowel

Tagging the parents here
We have a parents group
http://www.crohnsforum.com/forumdisplay.php?f=49

Take someone with you to the appt/scope so they can hear what the doctor says when your mind zones out btdt

Tagging
Crohnsinct
Maya142
Mehita
Jmrogers
Farmwife
Pilgrim
Tesscom

Great big hugs
She may just have something else
If not we are here to help you learn and navigate ibd

My other kiddo was sick
Everyone worried about Crohns due to Ds
So GI scopes quickly
No Crohns just severe lactose intolerance from a kid who drank milk by the gallon
The GI was again shocked
So it can be something else
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12-23-2017, 08:50 AM   #3
Squirrel#1
 
Join Date: Sep 2017
Location: Abilene, Texas
So glad to find this forum!

In 2016 my daughter was hospitalized with severe stomach pain, nausea for 5 days. Unfortunately in our area there isnít a GI specialist so she didnít get scoped. They ran all tests possible. She tested positive for h pylori and they released her with a whole lot of medications and recommend seeing a specialist. We never did. She was better and we attributed this to anxiety and stress from school. The antibiotics helped but her diet suffered. She is a poor picky eater. Finding foods that satisfy her isnít easy.

She started getting migraines in June of this year. In August she came to me telling me she has diarrhea. My daughter is a very private person so who knows how long she had it before she told me. Since August to today she has lost 5 lbs, went from a very active 11 year old to a sickly, frail little girl. We have done blood test, stool test, attempted antibiotics but her tummy couldnít tolerate it, and we finally saw a specialist at UCLA. Last night I got the call that one of her test came back really elevated and it was concerning. I went into a daze after she said those words. She mentioned IBD and she wants to scope her. Everything else she said is a blank to me. She is putting in for the referral and sometime next year she will have the procedure.
The past stool samples I had to get her poop didnít appear like diarrhea and she is not acting as lethargic. Could she be getting better without any treatment? Do we continue with the scope?

Thank you for reading!
Get the scope definitely. I was told all my through my childhood I had a nervous stomach. I wish I had been told to get the scope back them. Possibly could have avoided the last 2 years. I had a major surgery and now have an ilieostomy bag. I'm now 45 and my life got disheveled. My parents are always saying we should have gone to specispecialist. Mine went into remission for several years, we all thought I had outgrown the nervous stomach thing. It's best to find out now then when it's so severe.

12-23-2017, 09:36 AM   #4
Maya142
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Hi and welcome!
I agree that your daughter needs to be scoped. It's really hard to say what is wrong without more testing. She needs both an upper endoscopy and a colonoscopy with biopsies to figure out what is going on. Plus an MRE/pillcam to look at her small bowel.

Every kid seems to have different symptoms of IBD - not everyone has the "typical" diarrhea and bleeding. We honestly thought we were ruling out IBD when my daughter was scoped. Her only symptoms were weight loss, abdominal pain and occasional constipation.

No diarrhea or bleeding at that time.

We were shocked when the scope showed ulcers in her colon and red, inflamed terminal ileum that bled when it was touched (the TI is the last part of the small bowel - Crohn's is often found there). We were again shocked when her GI called us a week later to say biopsies were back and she had inflammation and granulomas through her colon and TI.

It does help to have someone come with you to doctor's appointments, just for the first few visits. While you are figuring out the terminology and what is going on.

The best advice someone on the forum gave us is that this is a marathon and not a sprint. It is a process to get diagnosed and then a process to find the right medications for your kiddo.

But it will happen and things will get better. Hang in there!!
__________________
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
12-23-2017, 10:07 AM   #5
Farmwife
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Location: Michigan

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Welcome
I would also do the scopes. My Grace never has loose stool.
They scoped her and told me all look fine but the biopsy shower a very different story.
Once started on the right meds and her ibd went near remission within 4 months.
For us is about Grace's quality of life.
She had near none but once dx'd we started seeing who she once was.
__________________
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 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
12-24-2017, 10:07 AM   #6
Momof3amazingkids
 
Join Date: Dec 2017
Location: Ventura, California
Thank you all for the very informative replies! Iím so scared and sad we have to do this procedure. I guess Iím still in denial she really does have something wrong. It has been a long journey without answers. I will for sure have the test done.

Happy Holidays to all of you!


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