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


 
01-27-2017, 09:49 AM   #61
Sascot
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What great news!
01-28-2017, 12:11 PM   #62
CarolinAlaska
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May it continue!
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*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
05-15-2017, 10:02 PM   #63
kimmidwife
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We did not have a good appt today at all. My little one lost three pounds and the doctor is insisting we start Humira.
She has had marked improvement in her ankle pain and has nor been complaining of stomach pain as much. I asked him if we can check one more fecal calprotrectin prior to starting and he said okay but he is pushing us to start it anyway.
I told him she had joined a new sports program it is a kids triathlon training program and she has been much more active because of it and maybe that was why she lost the weight. He didn't think that's the reason he is sure it is the Crohn's.
I am just not ready to go done this road with her yet.
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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
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LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
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05-15-2017, 10:08 PM   #64
my little penguin
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Kim
Regardless of athletic training
Kids are designed to be growing machines
I know you don't want to hear this but

The body protects itself
When there is so much inflammation that weight is lost
Then growth stops
Then the brain is deprived of nutrients needed for childhood growth
Then organs shut down

I am not sure why you are so hesitant to follow your child's doctors advice
Losing weight is a big red flag
She has had high fecal cal
For a while now

If you don't trust your GI then by all
Means get a second opinion quickly


But one child reaction and success with a drug do not have any bearing on how the other will react or even need to be treated

Every child is different even siblings


Sorry she is doing so poorly
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05-15-2017, 10:18 PM   #65
Maya142
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I'm sorry she's not doing well. I think Humira is smart - you don't want her to need many surgeries later, like Caitlyn has. And weight loss at that age is a big red flag - she needs to be gaining and growing!

My girls did GREAT on Humira. Yes, the shots do hurt, but there are things you can do to make them less painful. We iced before and after and using the syringes instead of the pens really helps. We did them while the girls were distracted - watching TV or even just asking them questions helps.

Plus, the new formulation of Humira should be released very soon and it will hurt much less.

A high fcal means inflammation, which over time, will mean scar tissue. You don't want your little one to go down that route do you?

If you treat early and aggressively, you might be able to avoid complications later.

If you don't want to do shots, you could always ask about Remicade.

I know it's tough to hear, sending big hugs.
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Mom of S (23)
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05-15-2017, 10:43 PM   #66
awmom
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Hi Kim, I can certainly understand your wanting another fcal before starting the Humira....the last one was done several months ago and had come down, so I see no harm in it as long as you can do it soon. This way if it's still high you will start the Humira with a more peaceful feeling. The one thing I am convinced of, is that if it's not within normal limits, the more aggressive (Humira) the treatment early on, the less chance of damage. In N's case, it was the doctors that dragged their feet, and N ended up needing surgery, and even now, is unable to maintain a good weight. How difficult to be constantly needing to make these decisions!!!! Hang in there and let us know how she does!!
05-17-2017, 06:41 PM   #67
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kimmidwife,
I am really sorry to hear this about dd#2. Keep us posted.
05-28-2017, 12:09 AM   #68
kimmidwife
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We did all the protesting and are waiting for the results. The Humira is supposed to come in the mail on Tuesday. Meanwhile she started having high night fevers and bad stomach pain. I am trying to figure out if the fevers are definitely Crohn's related or if she is just getting sick. She doesn't really have any other symptoms and the fact that the fevers are coming at night make me think this is Crohn's related. If it is Crohn's then this is definitely the worst flare she has had. Caitlyn never had fevers from Crohn's except for when she had the severe allergic reaction to Imuran which caused her to get very high fevers but it was from the imuran.
It seems like neither of my girls can catch a break.
05-28-2017, 12:33 AM   #69
Maya142
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Sending hugs Kim - it is so hard!!

Hopefully Humira will get everything under control. My daughter has fevers from Crohn's/arthritis, but they are low grade. If your kiddos are high fevers, I'd tell the GI because they may want to make sure she doesn't have an abscess before starting Humira.

Honestly, I know putting a little one on a med like Humira is hard, but considering your girls have such aggressive Crohn's, it makes sense to treat very aggressively, so that your younger daughter can avoid the complications Caitlyn has had.

We found using the Humira syringe instead of pen helped a LOT with the pain. We also iced before and after the shot and did it while they were distracted (while watching TV). It does hurt, but they get used to it and the new formulation will hopefully be out soon.

I will tag my little penguin since she has lots of Humira tips.
05-28-2017, 07:50 AM   #70
my little penguin
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Humira
We use lidocaine and add it to the humira syringe
Leaving the med out to get to room temperature helps
Shot blocker helps
Buzzy bee for shots can help as a distraction

Lollipops during the injection (sugar blocks the pain receptors)
Asking thought provoking questions helps
Again pain receptors

Ds has been on humira for over 5 years
Good luck
05-28-2017, 08:59 AM   #71
my little penguin
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One note injection site reactions are common
They don't mean your more likely to have a systemic reaction
Ds takes another med by injection (daily ) which caused 1/2 dollar or more size welts that lasted for days
Double check with the allergist who confirmed
Localized reactions do not indicate that the next reaction will be systemic
At all

Ds occasionally gets hives or welts with humira but nothing more
05-28-2017, 09:03 AM   #72
kimmidwife
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Thanks MLP,
I asked about the lidocaine and our doctor said absolutely not as it can cause arrhythmia's if you accidentally hit a vein with the needle. Even though I am a retired nurse he still wouldn't do it.
Buzzy bee is a good idea. I think I am going to order it.
05-28-2017, 01:05 PM   #73
Maya142
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We use Buzzy too. My older daughter is on Humira and she refuses to do the injection without buzzy and ice.

We have also done questions during the injections so they're distracted. Some JIA parents we know use fast paced video games that kids only get to play on shot days as a distraction.
That is more interactive than TV, so it probably works better.

My girls HATED Humira at first. But once they realized they felt better on it, they didn't mind it. They were older when they started Humira - 13-14 - but you could explain it to your little one.
05-28-2017, 02:35 PM   #74
my little penguin
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http://saidsupport.org/shotblocker-b...njection-pain/

Shot blocker really makes it so you can't feel the needle stick at all
The med still burns
But at least you can't feel the pinch

Ds loves it
05-29-2017, 08:38 AM   #75
kimmidwife
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I ordered the shot blocker. Hoping it helps. I figure it is a lot cheaper then buzzy and if it doesn't work then we can get the buzzy.
05-29-2017, 08:59 PM   #76
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Ended up having to take my little one to the ER for severe stomach pain. Her CRP and Sed rate were both elevated and her iron low. She is in a full blown flare up. Her first. They gave her a dose of IV steroids and sent her home on steroids by mouth. Hopefully the Humira will arrive in a few days so we can start it.
05-29-2017, 09:12 PM   #77
pdx
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So sorry, Kim. Hope the Humira helps quickly.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
05-29-2017, 09:13 PM   #78
Maya142
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Good luck with the shot - I hope it comes tomorrow so you can start tomorrow. We used to ice for 20 minutes before and after the shot, till their legs were REALLY cold and numb. Plus we always did a treat after the shot (chocolate helps ).

The loading dose was the worst part - not sure not sure how it's done for little kids, but for big kids, it's four shots at once. That was not fun, but after that 1 shot seemed easy!

Hope Humira works quickly for her, so she feels better SOON. Poor kiddo!!
06-01-2017, 08:50 PM   #79
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I am so upset. The Humira didn't come. It wasn't even sent out yet from the pharmacy. It was out of stock and they had to order it and they didn't think to even call us and tell us!!!
06-01-2017, 09:43 PM   #80
my little penguin
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Isn't it from a specialty pharmacy
Regular pharmacy doesn't carry it
And specialty pharmacy sends you tracking etc the minute it ships

Hope it gets straightened out soon
06-01-2017, 10:20 PM   #81
Maya142
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We have to call every time to set up delivery with our pharmacy. It's a pain, but then they send us the tracking information and ship it overnight.

Hope you can get it soon!! Your poor kiddo.
06-02-2017, 12:39 PM   #82
kimmidwife
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MLP,
It is from a specialty pharmacy but they called us last week and set up the date of delivery.

Last edited by kimmidwife; 06-02-2017 at 07:05 PM.
06-02-2017, 12:40 PM   #83
Maya142
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Any news on when they are sending it Kim? How is your little one doing?
06-02-2017, 03:30 PM   #84
kimmidwife
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Maya,
She is a mess. The prednisone is making her so crazy. Her stomach is still hurting and everything is tasting gross to her or smelling terrible.
06-02-2017, 04:05 PM   #85
Maya142
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Poor kiddo. My daughter was a mess on high doses of Prednisone too.

Is she taking the liquid? My kiddo took it and said it tasted awful. She also finds the pills very bitter but the taste doesn't linger, like it does with the liquid.

Hope you get the Humira SOON . The pharmacy should be able to give you a date for it will arrive.

Tell her to hang in there!!
06-02-2017, 07:06 PM   #86
kimmidwife
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Maya,
We flavored it with strawberry and we pour it in grape juice and she has been okay with it.
06-03-2017, 09:12 PM   #87
kimmidwife
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My little one is having severe fatigue since starting the prednisone. Caitlyn always gets very energetic from it.
Just wondering how others kids do with it.
The Humira still didn't arrive.
06-03-2017, 09:44 PM   #88
Maya142
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We haven't had that with Pred. But it could just be disease activity.

Has she been checked for anemia/iron deficiency?
06-03-2017, 10:34 PM   #89
kimmidwife
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Maya,
She is mildly anemic not to the point that I would think it is causing this extreme fatigue
. I googled it and it seems like it may be a rare side effect.
06-03-2017, 11:19 PM   #90
my little penguin
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Honestly pred can cause you not to sleep well which makes you more tired
Add in inflammation and you have one wiped out kiddo
Ds gets very tired when he is inflamed enough to need pred

I think once she has been in humira a while things will calm down
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