Crohn's Disease Forum » Parents of Kids with IBD » 10y. old son newly diagnosed, sed rate high for months


 
09-18-2017, 08:07 PM   #61
Maya142
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It depends on the kid. Our rheumatologist preferred shots because she said they were absorbed better and in her experience, kids had fewer side effects with the shots.

My girls had trouble with the pills even at a lower dose - they got mouth sores and were very nauseous and dizzy.

For us, switching to shots helped a LOT. But for others on the forum, I have read that their kids did better on pills!

Also, studies actually show that the shots are not any better in terms of side effects - the pills are just as good. But the shots are easier to absorb, especially in an IBD kiddo.

My older daughter is still on 15 mg of MTX (0.6 mL) by injection. She occasionally takes Zofran with it for nausea, but doesn't usually need it.

At higher doses, generally shots are used over pills.
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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
09-18-2017, 08:59 PM   #62
pdx
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My daughter needed a tdap and meningitis vaccine before she started Remicade. Her first Remicade infusion was given just a few days later. (Neither of those is a live vaccine.) I hope your son won't have to wait too long.

We have always done oral methotrexate, just because my daughter really hates shots. I've heard that the methotrexate shot is an easy one, though, for most kids.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, 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, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
09-18-2017, 09:59 PM   #63
Jelly loves Peanut butter
 
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Location: Southern California

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Thank you PDX!
09-18-2017, 10:09 PM   #64
Maya142
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Pdx is right - the shot isn't bad. It's a teeny tiny needle - a very thin one too. The MTX does not burn when going in (but make sure to get the MTX with preservatives)- it's nothing like Humira shots. My daughters learned to do it by themselves when they were 13 and 15, I think.

My older daughter is still on MTX. She says if she either ices before the shot or uses Buzzy, she can't feel the poke at all.

With younger kids, you can ask them questions during the shot to distract them.
10-24-2017, 06:07 PM   #65
Jelly loves Peanut butter
 
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My son started methotrexate and has had two doses of remicade and sed rate is now down to 24...best it's been in over a year and he is feeling great! Sending my sincere appreciation to Maya and MLP for guiding us in the right direction!
10-24-2017, 06:10 PM   #66
Maya142
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I'm so glad to hear he is feeling better and his ESR is down!! How are his joints doing?? I hope the pain has gone away!!
10-24-2017, 06:17 PM   #67
Jelly loves Peanut butter
 
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Location: Southern California

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Hi Maya, I am surprised after two remicade treatments his legs are feeling great, having no pain at all! He had his first infusion, then again after two weeks. Now they will be every 4 weeks. We even did the Crohn's walk on Sunday and his legs didn't bother him at all!
10-24-2017, 06:23 PM   #68
Maya142
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Some kids respond very quickly. So glad he is doing well!
10-24-2017, 06:24 PM   #69
my little penguin
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That's such great news
Love ❤️ when a med truly works

Great job!!
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DS - -Crohn's -Stelara -mtx
10-24-2017, 06:50 PM   #70
Farmwife
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Awesome news!!!
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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
10-25-2017, 11:49 AM   #71
pdx
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So glad to hear this! Thanks for the update!
12-13-2017, 07:27 PM   #72
Jelly loves Peanut butter
 
Join Date: Nov 2016
Location: Southern California

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Just an update for my son...had his 4th remicade infusion Friday and just got labs back today. ESR is NORMAL for the first time since July 2016!! He is doing great with no gut or joint issues!! Many thanks to all the parents on this forum for all the support and great advice!
12-13-2017, 07:43 PM   #73
my little penguin
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Thatís wonderful
News

Love hearing that !!!!
12-13-2017, 08:32 PM   #74
pdx
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So glad to hear this! Hope it continues for a long, long time!
12-13-2017, 08:50 PM   #75
Farmwife
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Yes, awesome!
So happy for you you guys.
12-13-2017, 09:01 PM   #76
Maya142
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Wonderful news !! It's so nice to hear success stories!! I hope it continues for a very long time.
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Crohn's Disease Forum » Parents of Kids with IBD » 10y. old son newly diagnosed, sed rate high for months
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