Crohn's Disease Forum » Parents of Kids with IBD » Talk me down again !!!!!!!

02-28-2018, 07:07 PM   #1
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polly13's Avatar
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Location: Tipperary, Ireland

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Talk me down again !!!!!!!

This is not my first talk me down thread, but really worried about my 8 year old son Luke tonight. For those that donít know me my 9 year old dd Lucy has crohns so hence the stressing out. About 4 years ago Luke had an episode of blood in his stool(v loose) cleared up within 24 hours, brought him to Lucyís Gi who felt no need to worry but if happened again would need to scope. Roll on today complaining of sore mouth, had a look could see 2 fairly large mouth ulcers, gave ibrufon for pain and he has stayed asleep..... am freaking out thinking at very least needs bloods but status red weather alert so wonít get to gp until Monday (snowed in). Have a worry since last episode - he poos a lot and is really skinny - on the other hand never stops eating and is really active ... talk me down please
Think Iím feeling helpless as I have to wait till Lindsay
02-28-2018, 08:03 PM   #2
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AW hun! It is so hard when we have one already diagnosed...a bit PTSD from the been there done that. The good news is he is doing fairly well and is not in E.R. status so you can probably wait until you can get out of the house and to a lab etc.

Sometimes I think we just know too much.

Plenty of kids without IBD get mouth ulcers.

There are enough little niggling things though to ask for a fecal calprotectin at least. If that is normal and blood markers are normal then maybe you can stand down for a while.

He is thin but is he on his growth curve?
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
02-28-2018, 08:30 PM   #3
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I agree that plenty of kids get mouth sores and it's not always IBD.

I would ask for a Fecal calprotectin though, just to be sure. It sounds like he doesn't have other symptoms right now like diarrhea or constipation or fatigue - that's a good sign.

I'd take a picture of his mouth sores to show Lucy's GI. I can't believe she is 9 already, wow!!

My younger daughter has Crohn's and my older one does not. However, any time the older one has GI symptoms - anything from a stomach ache to weight loss, I worry. But we've had her Fecal Calprotectin checked 3 times and it is always very low and thoroughly normal.

Hang in there!! I agree there is absolutely no harm until waiting till Monday - 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
02-28-2018, 08:49 PM   #4
my little penguin
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Same here
Younger ibd
Older without
Any GI symptoms and we get scared
Fecal cal is soooo much easier than scopes

I try NOT to go there but itís hard
Oldest was scopes 6 years ago (riot to fecal cal stuff available)
But still you worry

As far as mouth ulcers
Normal kids get them
Sweets Syndrome
And and and
Long list

Hugs 🤗
DS - -Crohn's -Stelara -mtx
02-28-2018, 10:11 PM   #5
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It's so easy to go down that path... It's been years now and it's still always a niggling thought at the back of my mind every time my daughter has a symptom of something or other. I've followed up lots of worries and all has been fine every time with her. But, you know... once bitten, twice shy...

But, as was said above, he's not in any sort of crisis situation now... if you're all snowed in, you can keep an eye on him, make sure he rests, etc. Easier to say than to do but try to keep the worry down as much as you can until you can see the dr on Monday.

Tess, mom to S
Diagnosed May 2011

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
03-01-2018, 01:19 PM   #6
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Location: Boise, Idaho

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I feel for you, it's so hard when we know from this forum that there are a few siblings that also have crohn's but so many do not. I don't think I'll ever have a time where I feel my other son is "out of the woods" but every time those "symptoms" come up they either quickly go away or are caused by something else.
Doesn't mean don't do any further testing especially for your peace of mind but try not to worry too much until you can see the doc. Have had younger son tested by FC, labs when he was having lots of diarrhea and stomach pains daily when he was much younger I, of course, thought "here we go again" turns out it was lactose intolerance which I have and a lot of my family has but of course that wasn't my first thought. I just think with our experiences we get PTSD and can't think of anything else.

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-03-2018, 09:42 PM   #7
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My 9 year old son had a stomachache that wouldn't go away, and didn't lose weight but just ate so very much without gaining.

In the end it was Crohn's (like you I have a dd who is 7 now but diagnosed young, at 3).

It's terrible but I am glad we went to scopes because his labs were fine (we didn't get fcal though). Without the scopes we'd still be chasing our tails.

Stay in and be cozy, but in a few days get things started.
*ETA Your thread said to talk you down! I am sorry....but there is a stronger genetic link associated with VEO kids and siblings.

Crohn's Disease Forum » Parents of Kids with IBD » Talk me down again !!!!!!!
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