Crohn's Disease Forum » Parents of Kids with IBD » Little Pilgrim's First Overnighter


05-14-2018, 09:10 PM   #1
Pilgrim
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Little Pilgrim's First Overnighter

H and I are in hospital tonight. She has what seems like a virus and just can't keep food in her. She had her consult today, so she is staying in pediatric hospital at least tonight. She has lost 5 lbs in the past week.
Her vomiting is worse in the morning when she wakes up. She was vomiting green today.
They are giving her fluids.
05-14-2018, 09:13 PM   #2
Maya142
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Poor kiddo!!! How is she doing? How did she do with the IV?

That sounds like bad bug. Green means bile. Are they worried at all about an obstruction?

I hope they can get her feeling better SOON. Typically, they will give anti-emetics too to control the nausea. Usually IV Zofran.
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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
05-14-2018, 09:19 PM   #3
pdx
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Sorry to hear this. Hope that she's on the mend really soon--being in the hospital is so hard, for both kids and their parents.
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Daughter E (16) 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
05-14-2018, 09:55 PM   #4
my little penguin
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Hugs
Hospital stays are the worst
Especially for the mom and lack of sleep
Dh and I switch off since docs round during the day
I take morning till 7 pm and he takes 7 pm to 7 am so I sleep at home and deal with the rest of the family stuff
Took a few years to figure out that combo

Hope she gets better and you get sprung soon
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DS - -Crohn's -Stelara -mtx
05-14-2018, 10:06 PM   #5
Maya142
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Another rule of hospital admissions -- if your child is fairly sick and you prepare ahead and pack an overnight bag, you will not be admitted.

Conversely, if your child is fairly sick and needs to be hospitalized, you will not have packed an overnight bag to go to the hospital.

My daughter swears these rules are true .
05-14-2018, 10:17 PM   #6
crohnsinct
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Awww. Poor H! I hope the fluids help perk her up a bit. That is a lot of vomitting. I am sure she is spent. Poor pumpkin.

Hang in there!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
05-15-2018, 12:31 PM   #7
Maya142
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How is little H?? Any better?
05-15-2018, 02:29 PM   #8
Farmwife
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How is she? Poor girl.
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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
05-15-2018, 05:26 PM   #9
Jelly loves Peanut butter
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Hope H is feeling better soon. Keep us updated...sending hugs.
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Mom of Lincoln (age 11)

Dx. Crohn's 9/2016 (age 9)
Dx. Juvenile Spondyloarthritis 9/2017 (age 10)

6-Mp 9/2016-10/2017
Remicade started 9/2017
MTX started 9/2017
05-16-2018, 09:20 PM   #10
Pilgrim
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She is doing ok. We stayed the one night and as soon as she could tolerate liquids they weaned her off the iv.
They found out while she was in that she has a vitamin k deficiency and ran some through her iv.
She started eating a bit today. So no worries, I think.
05-16-2018, 09:24 PM   #11
Pilgrim
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Poor kiddo!!! How is she doing? How did she do with the IV?

That sounds like bad bug. Green means bile. Are they worried at all about an obstruction?

I hope they can get her feeling better SOON. Typically, they will give anti-emetics too to control the nausea. Usually IV Zofran.
They ran zofran through the iv in the night. She did ok with the iv. The nurse who placed it was great. H said she didn't want to be tricked and that's why she watches the placement. So the nurse treated her like an adult and talked her through it.
05-31-2018, 01:48 PM   #12
Pilgrim
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This is a post gastro virus question:
H went off of her methotrexate for a few weeks running (dose is 10mg weekly) during her illness (ok'd by doc) and when I reintroduced it she was up in the night with nausea a few times.
We also had a headache issue crop up a couple of days afterwards (we had successfully weaned off the headache med some time ago).
I'll be honest. I hate Mtx. I would love this to be a reason to lose it. Does anyone have info supporting Humira monotherapy?
We do it with C. I was under the impression that you only needed meds to prevent antibodies for Remicade because of the murine vs human proteins.
05-31-2018, 02:06 PM   #13
crohnsinct
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you could build antibodies to humira also so many gi's use mtx for that. However, there has been a lot in the news over the last year that if you have been on mtx for 6 months to a year it is safe to come off without risking antibodies. Idk how true that really is. It is just what I see gi's talking about at conferences and such. Both of my girls came off mtx after a year or more and they haven't developed antibodies and it has been over a year now. That being said, sometimes you need the added bump from dual therapy to keep the ibd in check so if you go off you have to be prepared to accept that you might have to add it. I think Pdx's daughter had to add it back in due to antibody formation.
05-31-2018, 02:58 PM   #14
pdx
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I think Pdx's daughter had to add it back in due to antibody formation.
Yes, we tried to take E off mtx after a year of dual therapy (based on the studies that CIC referred to), and she developed Remicade antibodies about 6 months later. She went back on the mtx and now she hasn't had any detectable antibodies for more than a year.

It's possible that just an increase in Remicade would have had the same effect though. Based on levels testing, it seems that when my daughter is on mtx, it bumps up her Remicade levels, which may be what causes the drop in antibodies.

We are fortunate that E doesn't have too many side effects from mtx because she does better when she's on it. We did bump her folic acid dose from 1000 mg to 2000 mg a day, and that really helped with her nausea. I'm sorry that your daughter feels so sick when she takes it.
05-31-2018, 03:38 PM   #15
Maya142
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You can absolutely build antibodies to Humira. Going MTX was our big mistake with my younger daughter. She could not tolerate it so we stopped it. She flared big time. It took us over a year to get her arthritis under control and ever since then it's been much more aggressive.

This is the worst case scenario but it is a possibility.

H hasn't really ever been in stable remission either, so I would not touch her meds except to add more! You really want her FC to normalize so you know there is complete healing. Taking away MTX could lead to her flaring as well as antibodies.
05-31-2018, 03:40 PM   #16
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For MTX side effects, how much folic acid does she take? Have you tried Leucovorin? When do you give her the pills? Remind me, has she tried the shot at a lower dose?

What are her main side effects? We tried MANY things, so I may be able to help.
05-31-2018, 04:26 PM   #17
Pilgrim
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She is down to 10mg per week orally, it's not a high dose. She takes 1mg folic acid per day whatever time pf day I remember.
The mtx is taken Friday night before bed.
05-31-2018, 06:59 PM   #18
my little penguin
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There is lecovorin for side effects
Or even higher folic acid
Ds takes 1 mg x2 day (morningbabd night )

Second the be careful stopping meds

Flares are so so hard to get back under control
And her numbers have not been normal yet

Ds did humira mono for a year -added mtx and has had to increase dose every year after that firclose to 5 years before it didnít work anymore

We were told it also increases the effectiveness of the humira

Ds is currently on Stelara and mtx
05-31-2018, 07:22 PM   #19
Maya142
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Yes, I would suggest those same things. We doubled folic acid from 1 mg to 2 mg. You can also try folate. We've never tried that but some parents say it works better for their kids.

Leucovorin is folinic acid. It is actually used as a "rescue drug" for MTX when MTX is given to cancer patients. Those patients get VERY high doses and it prevents toxicity that would come with MTX. Those doses are in the 1000s I believe - NOTHING like what our kids get.

In small doses, Leucovorin does help with the side effects that come with the MTX doses that our kids take. But because it is a "rescue drug" for MTX it does reduce its efficacy. So it is usually used with higher doses of MTX. Almost always above 20 mg. Often for 25 mg which is the max dose.

We did use it for M when she was on lower doses. We figured even if we lost some efficacy if we got any MTX into her, that would be a huge victory. So we used it at 15 mg and then at 10 mg.

At 10 mg the MTX +Leucovorin did nothing for M. But at 15 mg even with the Leucovorin she felt like the MTX worked. Unfortunately, it still made her sick. But M's side effects were extreme - extreme dizziness so she couldn't get out of bed for 2-3 days per week. Severe nausea that lasted all day for 2-3 days. Vomiting sometimes. Fatigue - extreme fatigue.

Leucovorin is better known by rheumatologists than GIs since they have been using MTX for much longer. But I bet your GP might even be able to prescribe it (though ideally it should go through your GI of course).

If H has severe nausea, we were allowed to give Zofran. One dose before MTX at night. For the next two days, she would get it 2-3 times a day. So if we gave it Friday night, she would generally need 3 doses on Saturday and on Sunday. Usually 1-2 on Monday too.

We also tried Ativan to see if her MTX side effects with anxiety related. If they were, we were going to use CBT to help her deal with them. Ativan just made her sleepy, it didn't help the nausea or vomiting, so they concluded it wasn't all caused by anxiety.

But that anxiety is quite common in kids. Kids to often develop an aversion to the color yellow after being on MTX (the injection and the drinkable solution were bright yellow). They get worked up if they smell an alcohol swab. Things like that. A psychologist could really help.
05-31-2018, 08:55 PM   #20
Pilgrim
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Ok. I'm talked down.
I bumped up her folic acid to 2mg. So, I will give it a few weeks to see what changes.
I don't think the nausea was at all anxiety related because it happened when she woke up in the night, although her brother did have that problem at 25mg subq where he would feel nauseated when I brought the vial out. It's a real issue.
I found some research articles that showed that the mtx could be making Humira work at less high doses so it pays to keep the med working.
Just hate to have her 7th day feel crummy every week.😕
There are a lot of trade offs with this disease.
05-31-2018, 10:48 PM   #21
my little penguin
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Was the shot worse in terms of side effects ??
My kiddo has a sweets spot dose for mtx
Has to be oral -injections he gets sideceffects (nausea/flu like)
And below 25 mg but he weighs 130 lbs

So he takes 20 mg orally

At 25 mg oral or injection he is sick like pilgrim

So might be worth duscussing with her doc if 7.5 mg etc makes her ill of folic acid doesnít help or if injection at lower dose is better side effect wise.
06-01-2018, 02:47 PM   #22
Maya142
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My two really did much better on the injection. So if she did seem to have fewer side effects on the injection, you could try injecting 10 mg weekly.

It seems very individual - some kids do better with the pills. Studies show that they're about equal in terms of side effects but more of the dose is absorbed if it's injected.

My older daughter also has a "sweet spot" like MLP said. She cannot take above 15 mg. And if she tries to get off MTX or even lower the dose, she flares. She tries about once a year but she is never successful. She can tolerate a higher dose (such at 20 mg) by injection for a short period of time. But otherwise 15 mg is her magic dose.
06-02-2018, 09:30 PM   #23
kimmidwife
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My daughter hated methotrexate also. Our doctor didnít recommend it with Humira only with the remicade and entyvio.
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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.
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