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Crohn's Disease Forum » Your Story » Methotrexate for Children


07-30-2017, 09:55 PM   #1
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
Methotrexate for Children

Hi, my twin daughters have been diagnosed with Crohns. Our first child was 7 years old and her twin was diagnosed a year and a half later at 8. They have both been on enteral nutritional therapy. Emma, who was diagnosed first, was also put on sulfasalazine, but her most recent scope showed that hasn't been helping. Her GI specialist wants to put her on Methotrexate. Could you please give me insight on Methotrexate and how it works for you. I really appreciate any responses. Also- anyone else with young twins or twins in general who have been diagnosed I would love to hear from you as well.
Thanks!



07-30-2017, 10:04 PM   #2
my little penguin
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We have a parents group here
So you may get more response if you post questions there
http://www.crohnsforum.com/forumdisplay.php?f=49

Ds is 13
He was dx at age 7 as well
He was placed in mtx (methotrexate) at age 8 but for him it wasn't enough

He currently takes humira plus mtx (over 5 years now )
And supplements with neocate jr to keeping his growth and eight on track

He did een a few times over the years

No issues with mtx
He just has to take two mg of folate a day
Ds does better with pills
Injection of mtx he had lots of side effects

He currently takes 17.5 mg once a week

Good luck
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07-30-2017, 10:05 PM   #3
my little penguin
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07-30-2017, 10:31 PM   #4
Maya142
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Both my daughters have been on MTX. One has juvenile spondyloarthritis and Crohn's and the other just has juvenile spondyloarthritis. They are not twins though.

My older daughter is still on MTX. She has been on it for years. She has no issues with it. She does the injection - it's a teeny tiny needle and a very easy shot. She does it in her belly and started doing it by herself as a teenager. She says she barely feels it.

You can use Buzzy to help with the pain - she says with Buzzy she can't feel it at all!
https://buzzyhelps.com

Ice can also help with the shot.

She does it on a Saturday night so she has Sunday to rest. She is usually a bit tired the next day and a little nauseous. If nausea is really bothering her, she takes Zofran.

Folic acid is also given to prevent side effects. We started off with 1 mg daily, but for my girls that wasn't enough. They started getting mouth ulcers and bad nausea, so we upped it to 2 mg daily. That took care of the mouth ulcers.

My girls both did better on the injections of MTX, but some kids do better on the pills. GIs sometimes prefer to use injections because the absorption is better since it bypasses the gut.

We started out with pills but switched to injections when they had side effects with pills.

My younger daughter had a hard time with MTX. She had extreme nausea and dizziness and fatigue with it. She would even vomit. We tried everything to make it work because it worked really well for both her arthritis and Crohn's.

But in the end, we switched her to another medication.

Her experience is NOT typical though - MOST kids do great with MTX. My older daughter has very minor side effects - honestly, it doesn't really bother her at all.

MTX is a safe medication that has been used for years. We have gone anywhere from 7.5 mg to 25 mg. Both girls also take a biologic.

Definitely check out the parents' forum - there are lots of parents there who have young kiddos.
__________________
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
07-31-2017, 08:09 AM   #5
Pilgrim
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Location: Ontario

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Our daughter started on Sulfasalazine at diagnosis (age 3) and it didn't help. We then did a few rounds on EEN and then started Humira at 4. She is 6 now and still on Humira but we added Methotrexate about 6 months ago at a 15mg subcutaneous dose (injections ). It was rough. She was really nauseated and vomiting from the medication. We would give it to her Friday night and she wouldn't feel well until Monday. In the end she needed extra folic acid and things went much better after we increased her folic acid to 2mg per day. After 3 months we asked to switch to oral mtx and we have had no problems with the oral dose.
To be honest , I think the Methotrexate could be working much better than Humira ever did, although Humira improved things quite a bit from where she started. She is doing very well right now. We also started the SCD diet at the same time as adding methotrexate, so not sure which plays a greater role.
It can be a long process of trying things out.
I'm sorry that both of your children have been diagnosed. Hugs.
07-31-2017, 02:19 PM   #6
OleJ
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Hi Beth + others.
I have learned that one has to check if the liver gets affected by MTX. I believe the tests to take are called ALAT / ASAT, maybe others. Your docters are probably 100% on top of this, I just wanted to mention it - just in case.
Also, at least in adults, vitamin D3 supplements have shown to be beneficial. I don't know if this is true for children, but maybe worth while asking the doctor about.

Finally, I think it would worth consider avoiding dairy and ground beef, as a precautionary measure, to avoid unnessecary MAP exposure. The proteins and fatty acids from dairy can easily be replaced with seafood / plant based sources.
07-31-2017, 07:31 PM   #7
Farmwife
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Hi and welcome.

My girl was dx at 3 but is 8 now.
She did well on mtx with no side effects.
However, she still needed something more.
Remicade was added with good results (not perfect but good).
She did in mtx injections. The needle is so tiny, she handled it like a pro.
I'm glad her doc is being active in her care.
Pediatric IBD trends to be more aggressive and longer to get into remission.

She's not a twin but I'm one! 😆
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I'm mom to............... Little Farm Girl 8 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 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
07-31-2017, 09:23 PM   #8
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
Thanks to all who replied. We have the pills form of Methotrexate. We haven't started them yet, I just wanted to do some more research first.


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