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Crohn's Disease Forum » Parents of Kids with IBD » PPI - What is too high?


 
06-12-2013, 09:00 PM   #1
Farmwife
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PPI - What is too high?

Grace is struggling.

Now her acid reflex is causing all sorts of havoc.
She's on a PPI (Omeprazole) 20 MG/10ML Oral Suspension.

I had high hopes a couple weeks ago, that I could get her off of PPI's since she's been on them for a year plus.

Now with the pain she's been having, I wonder if we can up her dose.

1-Have your kids been on PPI's long term and
2- how high can GI's go and
3-did the kids have problems health wise to the higher dose????

Plus did their acid reflux run parallel to their disease?
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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
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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
06-12-2013, 09:22 PM   #2
my little penguin
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DS was on them for over a year- when his ibd got under control he moved down to a milder reflux med ( zantac) which works most days.

Your GI would have to answer that one.
I know my kids have had very high doses- it depends on whether the gI is letting some acid there for digestion or stopping all acid production.

There can be vitamin issues if you dont supplement the right ones while on a ppi for a child.

The problem is you can have severe reflux / EGID independent from IBD in Grace's case.
From the sound of your post her ibd is not really under control at all at the moment.

I think you should talk to your GI on how to get that fixed first since the reflux would stand a better chance of being fixed if the cause is fixed KWIM.

ALso remember Grace is on mostly liquids so those tend to slosh up a lot.
have you tried non med methods to help
inclining the head of the bed
limiting feeds so many hours before bed.
not laying down during feeds

Let us know what your GI says.
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06-12-2013, 09:31 PM   #3
Farmwife
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MLP her acid reflex has been all day. It's been building up to this for a couple weeks.
Elevating the head and such have NOT helped one bit.

I will be calling the GI and taking her to the ER tonight if it doesn't stop.
No meds are helping and I'm one tired mama.

Off for some sleep while dear hubby has Grace watch.
06-12-2013, 09:43 PM   #4
Tesscorm
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Stephen's been on 40 mg nexium since May 2011. He takes it bcz (we were told) the ng tube leaves the flap btwn stomach and esophagus partly open allowing acid to escape up.. Plus he has the formula while lying down (he has it only on the nights he has the formula). He's so much older that side effects may be different?? but so far, he hasn't had any. He was told to take a calcium supplement to offset the impact on bones. Also, if Grace doesn't take it everyday (ie only when needed), my understanding is that it can cause a rebound effect when stopping it.

A bit of info the ID specialist told me re nexium (imagine this applies to other similar meds)... The acid in your stomach kills off some of the harmful bacteria on food that you may ingest. When you take nexium, you actually leave yourself a bit vulnerable to these bacteria. She recommended S stop taking nexium a day or two bfr going to Dominican (and while there) to avoid this vulnerability (unless, of course, he had discomfort from the heartburn).
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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
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06-12-2013, 09:49 PM   #5
Jmrogers4
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Jack was on 40/mg a day for a couple of years
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
06-12-2013, 10:12 PM   #6
Johnnysmom
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Johnny was prescribed 20 mg from his pediatrician before his diagnosis. His GI upped it to 40mg right away. He was on that dose for about 7 months.

He was 11 years old at that time and I would guess quite a bit bigger than Grace.

((((Hugs))))) FW, I know you must be weary. Praying your princess turns the corner soon!
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06-12-2013, 11:33 PM   #7
poppets mum
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Poor princess. I hope she is doing a little better. Amy had heart burn one night she was crying and begging me to do something. I felt so helpless as she was up most of the night. Of course at that time I had run out of prevacid so I gave her Tums. Might as well have given Smarties for all the good they did. Along with so many things, I never thought I'd be giving Heartburn relief tablets to a child.
06-13-2013, 02:46 AM   #8
Sascot
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Not really sure about doses - I know Andrew was allowed up to 40mg, but can't remember if that was due to weight or not. It might be worth asking if she can take one longer acting one and then a shorter acting antacid that you can give her at shorter intervals throughout the day to keep the acid at bay.
Hope you get some answers soon.
06-13-2013, 04:00 AM   #9
Farmwife
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Just got back from the ER.
Grace has a UTI they think.
The x-ray showed her GI track full of gas.
No stool that they could see, just gas.
What causes that?

They released her crying in pain and said theirs nothing more they can do.
I'm to upset to type. I'm off to get some sleep if Grace will let me.
06-13-2013, 05:24 AM   #10
Dexky
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Is she back on food? Any diet changes you can think of?
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06-13-2013, 06:52 AM   #11
Farmwife
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Dexky
No, no new foods.


Grace seems better.

Is there any other illness that will cause white blood cells in the urine?
06-13-2013, 08:02 AM   #12
Catherine
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Has she had a UTI before? If so has she been checked for renal reflux

http://www.betterhealth.vic.gov.au/b.../Kidney_reflux
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
06-13-2013, 08:22 AM   #13
Farmwife
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Her urine has come back before like this but after they do the culture, it's always negative for UTI.
Just called the GP and asked if we should have a referral to an Urologist.

Also called the GI nurse and filled her in and she said she was going to call the hospital and get all the reports and x-ray.

So I've been told by all to sit tight and wait.

The good news is Grace is doing well for now.


House work calls. Do y'all remember when I said it will be nice to have a normal summer? I'm still waiting!
06-13-2013, 08:32 AM   #14
DanceMom
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A just started 20mg of Prilosec this morning actually. Hoping it does the trick for her. She only gets heartburn a few times a week, but when she does it is stabbing pains that cause her to double over and scream. Poor Grace. The pain can be excruciating.

Just a thought....and this may not be the case for Grace....but my non-IBD child had silent reflux when she was much younger and was on Prevacid and then Nexium. Her symptoms started getting worse so the GI upped her Nexium dose and still no relief. At that point he decided to take her off the Nexium altogether and her symptoms resolved. Apparently taking the medication when it is no longer needed can actually cause the symptoms you are trying to prevent.
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06-13-2013, 01:53 PM   #15
ChampsMom
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Just wanted to send you hugs.... Glad to hear she feels better today. I pray you get answers soon...

(((((((((HUGS))))))))
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06-13-2013, 03:27 PM   #16
Farmwife
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Thanks everyone,

She had a BM today. Liquid poo and blood. I'm not surprised, just not happy.
Oh and of course she's fighting a sinus infection (due to allergies).

I'll be going back to the ER tonight if things don't improve.

Still no calls back from any doctors.
06-13-2013, 03:55 PM   #17
my little penguin
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Hugs
Did you let them know about the BM and blood?
06-13-2013, 04:22 PM   #18
Farmwife
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Tried MLP! No answers.

Well she perked up a bit.
I had to put her Asthma Action Plan into place and the meds seem to have perked her for a bit. Maybe she was dealing with more asthma than I realize. Nothing is normal with her.
06-13-2013, 07:10 PM   #19
Dexky
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Can asthma cause bloody D?
06-13-2013, 07:15 PM   #20
Farmwife
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Her asthma is considered mild.
Her asthma gets flared when her reflex does.
We have to do the increase asthma meds because with the reflex she has runs the risk of pneumonia. That's at least how her allergist told us.

Last edited by Farmwife; 06-13-2013 at 07:58 PM.
06-13-2013, 07:20 PM   #21
Dexky
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EJ will on occasion have a little blood. That's the one thing I can point to that tells me he's never achieved 100% remission.

Is it common for Grace on occasion?
06-13-2013, 07:37 PM   #22
DanceMom
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What asthma medications is she on?

We just weaned A off QVar80 and she seems to be doing okay for now. Even handling her cold okay. The Prednisone probably has something to do with that but one less medication makes me happy.
06-13-2013, 07:57 PM   #23
Farmwife
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DanceMom
Cromolyn, Singular, Arbuterol and Budesonide.
She only need the Arbuterol and Bud. during flares.

Dexky
Ya, she's had a little even during her good few months. We too have question if she ever was in full remission.
06-13-2013, 08:29 PM   #24
my little penguin
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Make sure the allergist knows about her latest asthma flare.
Increasing flares sometimes can cause a change in meds from
Intermittent to daily controller meds .
Hope it clears.
06-13-2013, 08:58 PM   #25
crohnsinct
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We too have question if she ever was in full remission.
I'm guessing not! Not a doc just have an opinion and everyone is entitled to it
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06-13-2013, 09:03 PM   #26
my little penguin
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Sorry FW but I am with CIC
Based on what you have posted - your little has not reached remission yet at all.
06-13-2013, 09:15 PM   #27
Farmwife
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Yes MLP and CIC but she'll get there.
06-14-2013, 07:51 AM   #28
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Jumping way back to the original question, Apologies for being so late responding.
Liam is now on 40 mg PPI per day plus 30 mg Motileum (Liam is 10 and almost 30kg).

We have a new pediatric GI. We went in expecting to not do anymore investigation at this stage, but new GI was uncomfortable.

He says the PPI dosage is fine from a safety perspective, but that if heartburn is still an issue at that level, we need to rule out other possible causes (stop calling it reflux for the time being) as reflux is generally very responsive to medication. He commented there are a lot of organs close together in the chest, so need to be very careful to make sure we aren't mislabelling/mistreating a different problem.
06-14-2013, 08:09 AM   #29
Farmwife
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Good point Maree. Did you find out what other things it could be?

GI nurse called and feels it's Gastritis of a viral nature.
Soooooooo it will be a fun week-end.
06-14-2013, 08:19 AM   #30
killcolitis
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So sorry about your little girl and all that she's dealing with! Just curious what the nurse is basing her viral theory on? Where is her IBD/EGID located? Are you sure it's confined to the colon? I would be asking for upper/SI scopes and imaging if they've not been done lately. Perhaps some of her seemingly disparate issues are actually not and are more related than they think. Maybe not but it might warrant investigation. Anyway, I hope it is just a bug but if it doesn't improve very soon maybe they could do some further testing?
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