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Crohn's Disease Forum » Parents of Kids with IBD » MTX and maybe Humira for The Little Farm Girl


 
12-19-2013, 12:34 PM   #61
DanceMom
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Yes, A has used it. It is an IBS medication. It did nothing for A; no side effects either. I may as well have been giving her a sugar pill.
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Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

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12-19-2013, 12:43 PM   #62
my little penguin
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DS used it .
If it was a minor pain ( not daily ) it stopped the spasms .
But if it was daily stomach pain - not useful at all.
It did cause constipation for DS but only if we used it multiple days in a row .
Just make sure your consistent with miralax while on it .
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12-20-2013, 11:53 AM   #63
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Brian tried it. It didn't really make a difference for us. It also made him dizzy. I have a friend that swears by it for her son with crohns.
12-21-2013, 07:25 AM   #64
Farmwife
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Another formed stool. YA!!!!
But still a lot of pains (abdominal and joint).

Off for the last Christmas week-end. Looking forward to it. Such a wonderful time of year.
Oh to be a child again and think I'll get all I wish for. lol
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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
12-26-2013, 09:37 PM   #65
Farmwife
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Third dose of mtx.
She is still having regularly bowel movements. First time in years. Yay!
However she is hurting during bm's now.

JRA is now acting up in her arms. Poor girl.

Also she's complaining of teeth pain since starting mtx.
Has this happen with anyone else?
12-26-2013, 10:39 PM   #66
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By teeth pain, do you mean jaw pain?
Glad mtx seems to be doing something!
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dx with JIA at 14
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12-27-2013, 07:29 AM   #67
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Lucy never had teeth pain but she has got mouth ulcers wonder could she be mixing up teeth and gums if they are close to each other
12-27-2013, 07:54 AM   #68
Farmwife
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I have TMJ. Had surgry in my teens on my jaw. It was and still is a bother.

I've asked and Grace says teeth but it seems like it's more of the gums and jaw.
I know it's the shot doing this.
It starts a few hrs after the shot and last 4 days than fades away and the back with the next shot.
It's nothing bad enough to not do the shot though.
I have to call and update the Rhuemmy and will ask.

Grace is sick this morning. Caught a cold.
Will be starting her Asthma plan this morning.
No need to get pneumonia if we can help it.


Any advice on mtx and viruses? Do you notice if it gets worse?
12-31-2013, 08:44 PM   #69
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Another new year comes to an end.
What a year.
The good report is she still going poo regularly.
The third through the fifth day is her best days after her mtx shot.
I've called multiple times to her rheumatologist about her newest symptoms
But i've been told to be patient and let the shot work.
Bad news is her tummy pains are getting bad.
Almost thinking about having her go back on full EEN.
I'll talk to the GI next week.

Have to say that I love my new tablet. I can write by sliding my finger and it tells me what word to put their.

Hubby just got in from chores. I'm making the most unhealthy dinner on the planet but it will taste good.
Happy New Year.

Last edited by Farmwife; 12-31-2013 at 09:00 PM.
01-01-2014, 03:36 AM   #70
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Happy New Year to you and yours FW!

Wishing, hoping and praying that this brand new year brings much better days ahead for Grace and all your family.

Dusty. xxx
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01-01-2014, 06:41 AM   #71
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Happy new year! Hope this year brings you a treatment plan that can give Grace mostly good days. Hope your boy feels better too.
01-02-2014, 08:05 PM   #72
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Fourth shot of mtx down.
Grace told me that she rather do the shot once a week than
pills everyday.



On a happy note, my baby Grace is turning five at the end of the month.
We're throwing a big (growing bigger by the day) birthday party for her.
She's planning the whole thing.
She wants a wedding cake at least three tiers, flowers on all the tables and
A princess/dinosaur/fairy theme.
It's just nice to think of something else for awhile.
01-03-2014, 04:42 AM   #73
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Wow, 5 yrs old! Good luck with the party . I made a 3 tier wedding cake once, it was certainly an experience!
01-03-2014, 08:43 AM   #74
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I LOVE the party. Grace sounds like the sweetest little girl. I'm sure she will remember it forever, and especially the love behind it. Keep us posted on it!
01-03-2014, 11:13 AM   #75
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Hope 2014 brings lots of steady improvement for both Grace and your little boy!

Love the princess/dinosaur/fairy theme! Post some pics of the decorations and the cake!!
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May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
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01-03-2014, 11:41 AM   #76
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I can imagine the fairies hiding for there dear little life's on the top of the cake, as the big bad dinosaur climes his way up to eat the delectable fairies.

Thank God she wants it to be friendly dinosaurs.

For the first time in months Grace is bent over in pain. Poor kid, when will this end?? I might be taking her to the ER if she gets worse. It doesn't help that she looks puffy in her face, like when she was on pred.
01-03-2014, 12:05 PM   #77
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Poor Grace I just can't imagine how tough it is for you to keep seeing her in pain. I hope something settles the pain and it goes away before you need to actually take her to ER.

No doubt you've tried but maybe some distraction will help her... you can make her some magical dinosaurs that are pink and have wings for her birthday!

pink dinosaurs.jpg
01-03-2014, 12:12 PM   #78
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Oh poor Grace, hope she feels better soon.
01-03-2014, 12:16 PM   #79
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Just an idea for her birthday... can she eat jello? If yes, you could make some dinosaur shaped jello desserts. An old school project I made with my daughter just popped into my mind.... make pink jello in a flat pan (sort of a deep cookie sheet, a little less than an inch deep) and then, using dinosaur shaped cookie cutters, cut out dinosaur shapes from the hardened jello.

My daughter once did a medievel times project and we made stained glass 'sheets' from jello - I made a sheet of yellow jello, one of green, blue, red and then, with cookie cutters, cut out shapes from the jello sheets and interchanged into other colour sheets(ie cut out diamond shapes from blue and red and put blue diamond into red sheet, etc. - am I making sense??).

I think I need to find some little kids so I can do this stuff again...
01-03-2014, 12:44 PM   #80
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I'm so sorry to hear she's doubled over in pain. Has the ER been helpful when she's had abdominal pain like that before? Well, I'm assuming it's happened before. Please keep us posted. I really hope your sweet girl feels better very, very soon.
01-03-2014, 06:40 PM   #81
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Sorry to hear that. Hope it eases off and doesn't need a trip to ER
01-03-2014, 06:42 PM   #82
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Have thing settled at all for Grace?

Dusty. xxx
01-03-2014, 06:59 PM   #83
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Yes, she's watching Tangled for the hundredth time.lol
She did ask for the medicine up her bum-bum.
So apparently she's getting backed up again.
So I guess that can or could be the cause.
Time will tell I guess.


Then to top this day off. Grace sprained her ankle tonight.
Her ankle was already inflamed.
Of course she's limping and asking to stay up late with daddy.
So it's possible she's milking it.
01-03-2014, 07:07 PM   #84
DustyKat
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Thank goodness things have settled but I hate it for you that it may now bring up issues for your little princess again.

Thinking of you both.

Dusty. xxx
01-03-2014, 07:23 PM   #85
Farmwife
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Just an idea for her birthday... can she eat jello? If yes, you could make some dinosaur shaped jello desserts. An old school project I made with my daughter just popped into my mind.... make pink jello in a flat pan (sort of a deep cookie sheet, a little less than an inch deep) and then, using dinosaur shaped cookie cutters, cut out dinosaur shapes from the hardened jello.

My daughter once did a medievel times project and we made stained glass 'sheets' from jello - I made a sheet of yellow jello, one of green, blue, red and then, with cookie cutters, cut out shapes from the jello sheets and interchanged into other colour sheets(ie cut out diamond shapes from blue and red and put blue diamond into red sheet, etc. - am I making sense??).

I think I need to find some little kids so I can do this stuff again...
Thanks for the ideas.
She can't have jello.
She would love a stuffed dinosaur. Good idea.
01-03-2014, 07:40 PM   #86
my little penguin
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You can make" top=eight free" jello- I know a place to get you the recipe if you need- it
01-03-2014, 07:46 PM   #87
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Is the gelatin from beef???
01-03-2014, 08:28 PM   #88
my little penguin
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http://www.pennilessparenting.com/20...ical-free.html


whole foods should have gelatin from other source than fish or beef
http://www.mnn.com/food/healthy-eati...ke-vegan-jello

use a safe starch

http://allrecipes.com/recipe/vegan-gelatin/
01-03-2014, 11:29 PM   #89
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Gelatin is derived from many domesticated animal sources…beef, pigs, chicken, horses and also fish.
01-05-2014, 09:27 PM   #90
CrohnsKidMom
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Horses?!!!
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