Update and Non-IBD kid

[Sascot]

Hi all, just thought I would update. Andrew is still doing well, blood tests all looking good and Mercaptopurine at therapeutic levels. He's doing exams just now - all going well too. Thanks to whoever it was who suggested the Cetaphil for his acne - still quite a few spots but no big cysts and inflammation and bleeding spots have reduced. My only gripe is his lack of growth but apparently he is still "in range".
Not quite so convinced about my daughter though. She is growing (nearly as tall as Andrew), hit puberty normally and is a good weight (if slightly overweight). However she is getting tummy pain regularly - bouts of bad pain for a week or two then just a "normal dull pain" almost daily. She gets joint pain, severe chest pain which the doc assumes is heartburn, tiredness, headaches and the odd nosebleed.
Her calprotectin was 40 so have been told "it's not IBD then".
She is terrified of needles which is one of the reasons I haven't pushed the docs. However why would a 12 year old have severe heartburn, etc? I don't allow fizzy juice unless out at cinema or dinner and we don't have spicy food. Is it okay to just "live with sore stomachs"? Don't know what to do

 

[FrozenGirl]

Have you tried Tums or Zantac for the heartburn? If that works but only temporarily or partial I would say she needs something stronger. Maybe a PPI. I would not say it is okay to live with that.

 

[Clash]

I would want to investigate further to be on the safe side. Daily tummy aches and heartburn are not the norm so I'd want to get to the bottom of it.

Glad to her Andrew is doing well!

 

[crohnsinct]

"Not IBD then"???? Well that narrows it down doesn't it! I hate it when we take siblings to the doc and they assume that just because we have another child with IBD that we are barking up that tree for our other child.

NO! It is not normal for a 12 year old to always be in pain like that! I would nicely explain to the docs that you understand that based on the tests that IBD is unlikely but that she is still suffering and that the GI system is complex and you would like things to be investigated to find the actual cause.

It many things. A particular food, stress, hormones, motility, and on and on.

Did they do a Celiac panel on her?

Something simple you can try while you wait is up her water intake. Most kids don't get enough and dehydration can lead to headaches and stomach aches especially in pubescent girls.

FWIW - I had been mentioning my younger daughter to the docs ever since O was dx'd and I was shrugged off. She was a fine weight and height wise just constant tummy pain. Finally, in November, an FC showed high numbers and she was later dx'd with Crohn's.

A mother always knows. If they say it isn't IBD then make them look until they find what it really is.

Gosh I hate tummy issues. They are so hard to figure out.

And BRAVO for Andrew! Keep crushing those tests...blood, stool and school!

 

[Tesscorm]

Glad Andrew is doing so well!

I too would try to continue following up. As was said above, if it's not IBD, what else could it be? It must be 'something'! And, whatever it is, needs to be treated. FWIW, both my husband and his brother have IBS and suffer quite a bit from acid reflux (neither have IBD). Both have been on PPIs for years. However, my husband does take care of his diet and does take his meds faithfully; his brother, on the other hand, was not as careful and ended up with severe damage in his esophagus. This actually led to a serious surgery where they had to remove his esophagus and recreate it from his stomach! My point is that it's not only untreated IBD that can cause damage, other 'less serious' issues can also eventually lead to consequences. So, I'm also with the camp saying keep searching for an answer. :ghug:

 

[Worried mama]

I don't have much advice to offer since I still feel so new at this, but just wanted to send some good, happy, healthy thoughts your way. I hope it's nothing, but I'm sure you will worry until you have some more answers. I know she's afraid of needles, but perhaps some blood work could provide more clues?

Does she worry a lot? That can cause belly pain and chest pain....

 

[CarolinAlaska]

Sascot, I'm glad to hear Andrew is doing well. I hope the answer to your daughter's problem becomes apparent quickly.

 

[Jenn]

lactose intolerance?

 

[Sascot]

We did try dairy free when she was 5 and had a few issues. It didn't make any difference. Might be worth trying again

 

[kimmidwife]

Sascot,
Sorry you are Going through this I agree with the others though. Itsounds like she needs a workup.

 

[my little penguin]

Has she had a scope upper and lower ?
Has she seen a Rheumo the chest pains joints headaches etc could be from a Rheumo auto immune disease ...
Since those tend to run in families .
Might be worth asking for a referral
Stomach /joint pain go hand in hand
So if her joints are the issue fixing them would fix the stomach
Just depends which is the primary issue

 

[DustyKat]

Ugh! I am so hating hearing of all you guys with other kiddos that are having GI issues. Always makes my heart skip a beat.

I have been once bitten twice shy as have others and I would say…Okay doc, you say its not Crohn’s based on one test well I say I need more proof than just one test. While we are ruling IBD in or out lets test for a bunch of other stuff as well because what she is dealing with on a daily basis is not normal and it isn’t something she should just have to put up with.

Re Andrew: Fabulous! So happy for you that all is going well for your lad and long may it continue that way. :dusty: I hope the growth side of things soon kicks in too. :ghug:

Dusty. xxx

 

[Sascot]

Thanks everyone. I did get a referral for the joint pain to the paediatrician that deals mostly with joint issues. He checked range of movement and felt a few joints and stated she doesn't have arthritis.
I told him about her tummy pain and "chest pain". He looked at the computer notes and said "I see she's had lots of blood tests and GI investigations, so there's no need to worry about that" :ybatty:
It's been over 2 years since any blood tests and the only "GI investigations" she had was a camera up the anus and into the bladder under anaesthetic - also over 2 years ago. She's never had a colonoscopy or endoscopy.
He gave her amitryptaline and omeprazole. Just seems silly treating with omeprazole without knowing what we are treating.

 

[my little penguin]

But can you get to a Rheumo ?

 

[Sascot]

Unfortunately that's not how it works here. You see the GP who then refers to a paediatrician who the runs tests, etc then decides if they need to see the specialist. Her paed doc decided she doesn't have arthritis so there's no way he would refer to a rheumatologist

 

[my little penguin]

JSpA does not show in blood work at all
DS saw a Rheumo multiple times for over a year and half prior to dx with JSpA which is very hard for Rheumos to dx .
Can you give the gp/ped handouts on JSpA

 

[Maya142]

JSpA can show in bloodwork but often doesn't. Kids often don't have swollen joints either. It generally starts in joints like knees, heels, ankles, hips and then later hit the SI joints and spine. Fatigue is very common.

I agree with MLP, I wish you could get her to a rheumatologist somehow. If she ever does have swollen joints, definitely take a picture.

The Spondylitis Association of America has good info that you could give your GP about JSpA.

 

[my little penguin]

Also JSpA tends to have subclincal inflammation in the gut -so not crohn's but not normal either kwim
Hugs

 

[CarolinAlaska]

Thanks everyone. I did get a referral for the joint pain to the paediatrician that deals mostly with joint issues. He checked range of movement and felt a few joints and stated she doesn't have arthritis.
I told him about her tummy pain and "chest pain". He looked at the computer notes and said "I see she's had lots of blood tests and GI investigations, so there's no need to worry about that" :ybatty:
It's been over 2 years since any blood tests and the only "GI investigations" she had was a camera up the anus and into the bladder under anaesthetic - also over 2 years ago. She's never had a colonoscopy or endoscopy.
He gave her amitryptaline and omeprazole. Just seems silly treating with omeprazole without knowing what we are treating.

I totally get your frustration. I wish we could get doctors that talk with you and listen to you. Ugh!

 

[Suzysu]

What is JSpA? Sascot I hope you get some answers soon for your little lady, it doesn't sound normal to me. Xxxx

 

[Maya142]

Juvenile Spondyloarthritis - type of arthritis that is associated with IBD.

 

[my little penguin]

JSpA
Is juvenile Spondylarthritis
It is associated with Ibd

 

[Suzysu]

Thanks - sorry to hijack this thread - could you get pain but no swelling?

 

[Maya142]

Yes, it's best to see a pediatric rheumatologist.