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Crohn's Disease Forum » Parents of Kids with IBD » Young Pilgrim's Headaches


 
12-28-2017, 05:16 PM   #91
Maya142
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Humira levels are done pretty routinely here for kids now. I haven't heard that about the cut-off before. My older daughter has had them done. She had normal levels and no antibodies so we tried to keep her on Humira despite her flare. Her arthritis calmed down for a bit, but then she flared again several months later and ended up with a lot of inflammation in her joints.

At that point her rheumatologist said we needed to give up on Humira because she had adequate levels but it clearly was not working anymore. She is on a new biologic and is doing much better.

As for MTX, did she have side effects on the higher dose? If she can manage the higher dose, I'd ask to go up. I think H needs all the help she can get right now...
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Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-28-2017, 05:26 PM   #92
Pilgrim
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Maya142 She had been on weekly pediatric dose, then up to biweekly adult dose plus mtx, now weekly adult dose plus nxt.

We moved mtx down to 10mg to see if it affected her headaches.

Her fcal has been as low as 250. Once.

MRE in a month. Fcal in 4 months, sooner if she gets worse. Monthly blood draw = She is not being ignored. But, I am chewing on your advice as I trust your opinion and experience.
12-28-2017, 05:42 PM   #93
crohnsinct
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UGH! I know how hard it is for you to get to GI but sorry 250 is still high enough to consider no remission. Where is her disease? If small bowel that is high. If all colonic they can stand a little higher but it would still get some action from our new GI.

There are very definitive guidelines for cut offs of Humira. I recently read the guidelines from various societies. I am on the way out but will send you those papers.

I just don't get increasing dose and waiting 4 months when you have no idea of where her levels are. PLUS she is rarely symptomatic. But he has the degree and experience so I will give him a short leash on this one.

I wouldn't do two MRE's in one day but again I know you come from far so I guess it is a necessary evil. Pack change of clothes for both and maybe bring an older sibling etc to help you get the barium down, run to bathroom etc?

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12-28-2017, 05:43 PM   #94
Pilgrim
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I'm not clear on the whole reticence to do levels/antibodies. Humira did them for us once a few years ago.
12-28-2017, 05:46 PM   #95
Pilgrim
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UGH! I know how hard it is for you to get to GI but sorry 250 is still high enough to consider no remission. Where is her disease? If small bowel that is high. If all colonic they can stand a little higher but it would still get some action from our new GI.

There are very definitive guidelines for cut offs of Humira. I recently read the guidelines from various societies. I am on the way out but will send you those papers.

I just don't get increasing dose and waiting 4 months when you have no idea of where her levels are. PLUS she is rarely symptomatic. But he has the degree and experience so I will give him a short leash on this one.

I wouldn't do two MRE's in one day but again I know you come from far so I guess it is a necessary evil. Pack change of clothes for both and maybe bring an older sibling etc to help you get the barium down, run to bathroom etc?

Thank you. When time allows I will be grateful for the links. More later....must cook.
12-28-2017, 05:55 PM   #96
my little penguin
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Woth fecal cal that high and higher
Has she been scoped recently to see how bad things are ?
I understand imaging
But per Ds GI even without symptoms scopes /MRE are a given every year or two
Woth symptoms high fecal etc.. it’s right away to assess the damage


I also thought she was switched to weekly humira plus mtx a year or so ago due to high fecal cal then

Has she ever been below 250?
I know that is the cut off for most Crohns kids

Yikes
Plus 4 months is a long time
For a slight bump

Is she on 20 mg or 40 mg dose ?
How much does she weigh?
There is a low weight when they switch

Just very concern that her inflammation has not been under control for years

Any second opinions available at all???
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12-28-2017, 06:07 PM   #97
kimmidwife
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Pilgrim,
I think everyone else has given you very sound advice. We are also having a lot of issues with Humira. It seems to be working for my little daughter but she now has an awful rash on her leg that won’t go away.
Sending you lots of hugs and hoping you can figure out what works the best for her.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
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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.
12-28-2017, 06:14 PM   #98
Maya142
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MRE in a month. Fcal in 4 months, sooner if she gets worse. Monthly blood draw = She is not being ignored. But, I am chewing on your advice as I trust your opinion and experience.
I don't mean at all that she is being ignored. But sometimes a second set of eyes helps. This is a kid who has severe Crohn's and has never been in remission.

And your GI has been doing all the right things - upping her Humira, adding MTX. But they aren't working. Her FC comes down but goes right back up. She's never been in remission. That means there has been simmering inflammation all along. Which increases the likelihood of abscesses, fistulae, strictures and surgery. And in the long run, colon cancer.

VEO IBD is harder to treat than regular early onset IBD. So I wonder if you need someone else to look at the whole picture with fresh eyes and see what other options there are.

There are new meds - Stelara and Entyvio. And you still haven't tried Remicade, which typically gives you more freedom than Humira, since you can up the dose and frequency more easily. And it is dosed by weight, which really helps for a growing kid.

I'm not one to say that you should give up a medication easily - my 20 year old is basically out of options because her AS has been so hard to treat. And that is terrifying.

But permanent damage to her bowel and surgery is even more terrifying to me...

Sending hugs. It is a very tough situation to be in.

And H is certainly very tough to accept Humira shots so easily. She is one very brave kid!!
12-28-2017, 06:20 PM   #99
Maya142
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As for MREs - pack clothes!! I always tell people to pack a change of clothes and then we forgot one when my daughter had her SBFT .

BIG mistake. She threw up all over herself and her shoes!!

Also, if they can't drink the barium, I'd ask for an NG tube. My daughter used her G tube last time since we didn't want a repeat of the throwing up with the SBFT, and we found that she got much less nauseous when the barium was given through her G tube. It made the MRE basically painless.

We also asked her GI beforehand if she could take Zofran with the barium for the MRE. Her GI said yes and that helped her keep it down.

Also pack some sort of entertainment - a book or toy or ipad or whatever. There will be a lot of waiting around.
12-28-2017, 06:38 PM   #100
my little penguin
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Ok just read your next posts
That makes much more sense on what I was fizzy on remembering
On humira and dosing

But I agree with the others
Constantly high fecal
Plus no scopes or imaging except at dx
Is scary for Damage issues

We did scopes back to back days for the kids and that was insane
MRE shouldn’t be too bad
But hours of hand holding for both kids would be tough
Ds is allergic to the contrast /barium so MRE are a very long 24 hour overnight stay prices for him

Zofran a must
Prizes for drinking barium at various times (extra pick due wgats for dinner or desert etc..)

Extra clothes for everyone including you

Ds had an allergic reaction with his a few years ago after being fine
So having extra handsis always good if there are two kids
12-30-2017, 09:39 AM   #101
Pilgrim
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Just to clarify, she had diagnosing scopes and scopes again 2 years after, about a year ago. It showed that the disease activity had moved to terminal ileum, and into small bowel. Also confirmed that fcal correlates to what is seen on scopes.
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