Crohn's Disease Forum » Parents of Kids with IBD » Youngest daughter in a flare


 
06-11-2017, 08:43 PM   #121
kimmidwife
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Extra shot given. My poor baby. I am so angry!!!!
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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.
06-11-2017, 10:00 PM   #122
Maya142
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Did it go any better this time?

Poor kiddo. I am keeping my fingers crossed that the new Humira formulation will be out soon. We were told this summer, so hopefully in the next few months.
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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
06-11-2017, 11:32 PM   #123
kimmidwife
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It was worse this time. Hoping we can get the buzzy soon.
06-12-2017, 04:05 PM   #124
Farmwife
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Poor girl!
I think I told you with Grace, I had to just do it!
All the prep work (letting it come to room temp, numbing cream, buzzy. ..) just made her more worked up.
But still, you mention humira after all this time and she gets upset.
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I'm mom to............... Little Farm Girl 9 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
06-14-2017, 10:51 PM   #125
kimmidwife
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A friend got her a buzzy! She sent it as a surprise to us today! Hoping it helps with the next dose.
06-14-2017, 11:01 PM   #126
my little penguin
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Glad you got one
The wings (cold pack to freeze) are uselesss

Read the distraction. Techniques in the website
Remember the bee does not stop the medicine from burning
It distracts from the minor pain of the "stick"
Do you won't be disappointed

Add a lot of choice for her
She gets to decide where -what room what leg etc...
She gets to decide what movie to watch or lollipop to eat

Good luck
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06-14-2017, 11:27 PM   #127
Maya142
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Good luck!!

I agree on the choice - which thigh (or belly, if she wants to try that), which bandaid (we always got colored/cartoon band-aids and let them choose - they still do that!!), which TV show or movie, what treat after the shot (we'd usually make cupcakes or donuts or chocolate).

As MLP says, it won't take away the burn, just the needle poke. We ice before then use Buzzy - the wings were too small for us to make a difference.

Hope it really helps!!
12-20-2017, 05:34 PM   #128
kimmidwife
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My younger daughter has been having some issues from Humira. She has been getting migraines and rashes. The doctor ordered antibody testing and Humira levels.
I thought it was interesting that he said the next step would be Entyvio not remicade if she has built antibodies to Humira.
He said they are trying to use less Anti TNFs now with Entyvio and Stelara. That they feel they are safer.
I am just not sure they are as effective.
12-20-2017, 07:15 PM   #129
my little penguin
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Has she seen a dermatologist?
Neurologist
Given her age migraines are common especially among kids with inflammation issues
Same with rashes
There are ALOT of skin manifestations that appear with biologics
But wonít necessarily stop when the biologic is stopped
Some have nothing to do with the drug at all
We weee told various things by GI and rheumo on Ds rashes
Finally saw dermo who dx Sweets Syndrome

As far as entivyio
Most ped GI are no longer using it at ALL for Crohns
Since itís not effective
Itís very effective in UC

They do switch from remicade to humira and vice versus
Then switch to Stelara for kiddie Crohns

Is her Crohns flaring ?
How was her last bloodwork and scope ?

I would be very hesitant to change just due to migraines and rashes
Those can be handled
(Not by GI though)
12-20-2017, 08:09 PM   #130
Maya142
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My kiddo was on Entyvio. It is the only biologic she has ever had side effects on. Our GI does not like to use it on Crohn's patients - feels it is too "mild" and not very effective. She does think it works for UC patients.

So it may be safer because it's gut specific, but if it isn't as effective, then what's the point?

For what it's worth, my daughter developed drug induced Lupus on Entyvio...it took MONTHS for her to recover. It was absolutely miserable - horrible joint pain and fatigue. It is rare though - her GI had never seen it with Entyvio before.

So no drug is benign. Plus both Stelara and Entyvio take MUCH longer to work than anti-TNFs.

Given Caitlyn's history of severe Crohn's and multiple surgeries, I would expect your little one to be treated aggressively to avoid the same issues.

At our Children's hospital, Remicade and Humira are still used first. Usually Remicade first and then Humira. Our GI says in her experience, Remicade is the most effective for growing kids, because you have a lot of room to play with the dose and frequency.

Honestly, I would get a second opinion. And follow up with other specialists to see if the migraines and rashes can be treated without stopping Humira.

I would be VERY hesitant to stop a biologic that is working...there aren't very many options and she is very young.
12-20-2017, 09:38 PM   #131
kimmidwife
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He is only going to stop the Humira if she is building up antibodies. I was very surprised about the Entyvio vs remicade but he just came back from a pedi GI conference and said that was the newest recommendation.
Entyvio gave Caitlyn horrible side effects though. I am not in a hurry for try it with my younger one.
We get the blood done on Friday so I guess we will see next week what the results are and then follow up with him and make a decision.
We saw the dermatologist and she didnít know what the rash was which I was very surprised about because she is really good.
We are going to try and get in with a neurologist.
Six month wait list for pets neuro down here. It is crazy.
12-20-2017, 09:47 PM   #132
Pilgrim
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H had migraines that I would guess were Humira induced but who knows? Considering the wait for ped Neuro, our GP got a verbal recommendation to try a low dose of amitriptyline for migraine prevention.
It worked by day three and brought her pain down from an 8 (all day, every day pain) down to a 1. It's such a relief.
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