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12-13-2016, 05:08 PM   #31
Tesscorm
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Will she drink the shakes as a drink with her meal? Downside is the shakes can be filling on their own, so might impact the amount she eats??? Am only suggesting this because when my kids were young (pre-dx for S), I used to take one Carnation Breakfast shake, dilute it with milk and give each of them half the Carnation with their breakfast. I did it only to boost their vitamins/nutritional intake... but they thought it was great that they got chocolate milk every day! Perhaps you can try something similar by diluting half a shake for each meal? She'd end up having one and a half shakes per day??
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
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
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
12-16-2016, 09:12 AM   #32
polly13
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Hi there pilgrim - Lucy does her mtx on Friday and humira on Monday and that seems to work pretty well. Good luck with it hope she feels better soon.
12-16-2016, 11:20 PM   #33
Pilgrim
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Thanks Polly. We had the 2nd mtx tonight and first week with Humira as combo on Monday. I hope your daughter gets some relief soon, too.

Tesscorm, she has asked for Ensure each night before bed over the past few days. She is still eating well. I'll see if she starts gaining again in a few weeks.

I am wondering about her low albumin. The GI is watching it, and is ordering an ultrasound of her liver in the spring when we go for the next appointment. I thought the albumin was just a bowel absorption thing but now I wonder if he thinks it's a liver function thing.

Has anyone dealt with this?
12-17-2016, 10:11 AM   #34
crohnsinct
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Albumin is definitely a liver test. Low albumin can indicate liver stress or could just indicate inflammation. Hard to flesh out the real cause given you know she has active IBD inflammation but she also just started on mtx so it could be her body adjusting to the new med. This is why I mentioned to you that testing is frequent at the beginning to watch how the liver is handling the mtx.

T's albumin dipped at the beginning but came back up as her body got used to the drug.

I would hope the GI is going to pull another test soon to monitor because if it is the mtx then adjustments will have to be made. I am not comfortable with waiting until spring.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
12-17-2016, 11:33 AM   #35
my little penguin
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Yikes spring is a long way off
And it's just an ultrasound
When is the next blood draw ??
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12-17-2016, 12:11 PM   #36
Maya142
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Albumin can also fall with malnutrition. My daughter had low albumin when she was very underweight - she was monitored very carefully (weekly blood work).
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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
12-17-2016, 10:10 PM   #37
Pilgrim
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Sorry guys, I wasn't clear. When we went in last her albumin was very bottom number of normal then dropped a few more points before starting MTX.
I think the number we're at is 32. So he mentioned this liver ultrasound before we started the methotrexate.
We're getting weekly labs for the first month of MTX. Then every other week and so on.
She's not skinny but she's not really been gaining for a few months.
I'm just putting two and two together that this might be a liver issue. It just takes me awhile to process negative stuff.
They called last week to discuss labs. It's usually something bad when they call. But everything was ok except the albumin. So, I'm worrying.
12-18-2016, 07:05 AM   #38
Farmwife
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Grace's low albumin was due to malnutrition.
She had it for a year or so.
Her numbers were between 30 to 25 for that year.

But given what your girl has, I see why it's good to be careful.
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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
12-18-2016, 08:21 AM   #39
Pilgrim
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Thanks FW. Good to know! I hope it's "just" malnutrition.
12-18-2016, 12:13 PM   #40
Maya142
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I'm glad she's being monitored carefully.

My kiddo's albumin was also in the range for quite a while. It went back up once we started tube feeds.
12-18-2016, 12:40 PM   #41
Pilgrim
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Thanks Maya, that is good to know. I file these ideas for what has helped other kids so I have something to work with if something needs to change.
12-19-2016, 09:33 AM   #42
crohnsinct
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We have a history of bad livers in our family so I totally understand the worry. However, there are at least three other tests that they generally routinely run that would also indicate liver damage. AST, ALT and Alkaline phosphatase are also part of the Comprehensive Metabolic Panel and are used to evaluate the liver. If only one number is off try not to worry too much. It could simply be inflammation, mal nutrition or adjustment to the mtx. In other words, do as I say not as I do.
12-19-2016, 11:18 AM   #43
Pilgrim
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Good luck with that! I wouldn't worry but for this ultrasound he has put out there regarding her liver. But it could just be a precaution. The other liver numbers are fine as far as I know.
Thanks again CIC.
01-07-2017, 09:27 AM   #44
Pilgrim
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Just to update here. Her albumin kept dropping and so she started another course of Entocort which after a few weeks has stabilized her numbers. Labs are looking much improved.
We're on our 5th week of Methotrexate injections at 15mg and she takes Zofran on injection day. That usually manages the vomiting and nausea for the first 24 hours. But 24-48 hours after injection she has been vomiting. We have permission to use Zofran on the 2nd day now so hope that will help this week.
I won't know if MTX is helping until we taper Entocort in mid February.
The other interesting thing I noticed is that she has been dreading her Humira shots more. Now that she has "easy" shots, the difference is amplified!
01-07-2017, 09:53 AM   #45
my little penguin
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Lecovorin can be taken 12 hours and 24 hours after the mtx injection to help with side effects
Might be worth asking about
Ds just switched back to mtx pills last night from injection since the high dose mtx(25 mg) injection did not slow down his seeets syndrome and was just making him sick .

Sorry she needed more entocort
Are there plans to switch to another biologic ??
01-07-2017, 09:54 AM   #46
my little penguin
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Tips for kids on reducing shot pain

http://saidsupport.org/how-to-reduce...nra-injection/

Ds changes it up and now hums with a lollipop (sugar reduces pain signals )
01-07-2017, 01:13 PM   #47
Maya142
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I would also try Leucovorin. It's folinic acid and is used as a "rescue" drug for cancer patients when MTX is given in much higher doses. For whatever reason, rheumatologists seem to use it more than GI's but it's worth asking about.

We gave it 12 and 24 hours after MTX. It definitely helped my daughter.

We also gave Zofran for 2 days after MTX, sometimes more than once a day.

Good luck!!
01-07-2017, 02:12 PM   #48
Pilgrim
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Lecovorin can be taken 12 hours and 24 hours after the mtx injection to help with side effects
Might be worth asking about
Ds just switched back to mtx pills last night from injection since the high dose mtx(25 mg) injection did not slow down his seeets syndrome and was just making him sick .

Sorry she needed more entocort
Are there plans to switch to another biologic ??
Good question. She isn't building antibodies and her levels were fine when we tested (in June at scopes which showed active inflammation).I think he wants to see if methotrexate will do whatever the Humira isn't doing. He hasn't said too much about the next step. He could still bump her Humira up to weekly or even 5 days (like your ds) and then could still play with the mtx dosage.
H just started to use the lollipop! It was an accident but glad there's science behind it. We'll add humming. Thanks for the idea.
01-07-2017, 02:17 PM   #49
Pilgrim
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I would also try Leucovorin. It's folinic acid and is used as a "rescue" drug for cancer patients when MTX is given in much higher doses. For whatever reason, rheumatologists seem to use it more than GI's but it's worth asking about.

We gave it 12 and 24 hours after MTX. It definitely helped my daughter.

We also gave Zofran for 2 days after MTX, sometimes more than once a day.

Good luck!!
They told us not to give her more than one dose of Zofran in a 24 hour period - but I don't know why. They said we could break it in half to make the med more spread out though. As in two half doses per day.

If things don't improve I will ask about Leucovorin. Thanks!
01-07-2017, 02:53 PM   #50
my little penguin
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Zoffan might be a weight thing
Ds can take it every 8 hours
It gives him constipation dose try not to take it
01-07-2017, 03:39 PM   #51
crohnsinct
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It's still early to call mtx a no go. It can take up to 12 weeks for it to build to therapeutic levels. Glad the Entocort seems to be helping. Hang in the mama! Your doing a great job!
01-07-2017, 04:59 PM   #52
Maya142
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It must be because she's so little . Poor H!

My daughter was allowed to take Zofran 3 times a day - and is still allowed to. She doesn't have any side effects from it.

Does H have the kind of Zofran that dissolves under her tongue? We found that worked better (and faster) for my daughter than the regular pills.

Poor kiddo. We had a very hard time with MTX, but it worked REALLY well for my daughter.

With shots, we found that open ended questions help with distraction. We also used to do Humira while the girls were watching something on TV. Buzzy helped a little but more for the poke and not so much for the burning with Humira .

I was told at the Juvenile Arthritis Conference that the new Humira formulation was supposed to be released in the US (and I assume Canada) in early 2017. I hope it happens soon!
01-07-2017, 05:23 PM   #53
Optimistic
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I heard new Humira without the burning citric acid could be available in US as early as late Jan. Wonder if it takes a new script or they try to use up old formula first? Would love for little Pilgrim to catch a break in some way!
01-07-2017, 05:27 PM   #54
my little penguin
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We were told the distributors need to use up the old stock first
No new script required -same stuff
Given humira is good for over a year
It might be a while even once it gets here
01-07-2017, 05:31 PM   #55
Maya142
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We were told the same thing last summer - they will use up the old stock first, but they were expecting people to get the new stock in early 2017.

At least, that is what the plan was back then.

I wish they would at least give little kids the "no sting" formula.
01-16-2017, 12:17 PM   #56
Pilgrim
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This week she vomited on injection day (methotrexate) even though she took the zofran. Then she was awake for 2 hours afterwards with upper right quadrant pain, which she indicated was toward her back. We ran labs today so I am waiting to see if anything shows up. The pain was unusual. Does anyone know if a med issue would show up on labs three days later?
01-16-2017, 12:22 PM   #57
my little penguin
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Didn't she have pancreatitis with aza or 6-mp?
Have you called her GI since it's new pain /vomiting for her ?
Given her history and location of pain -always good to touch base with the staff since what they look for may not be in her routine labs .
01-16-2017, 12:37 PM   #58
Pilgrim
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Didn't she have pancreatitis with aza or 6-mp?
Have you called her GI since it's new pain /vomiting for her ?
Given her history and location of pain -always good to touch base with the staff since what they look for may not be in her routine labs .
Yes! She did have pancreatitis with aza and while this pain is nowhere at that level it could be escalating. So I did call and leave a message with my concerns but they may still wait on the lab results to call back. I'm not injecting on Friday until there's been contact.
01-16-2017, 12:45 PM   #59
my little penguin
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Hope they get back to you soon
01-16-2017, 02:49 PM   #60
Pilgrim
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Do people get pancreatitis from mtx?
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