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PPI - What is too high?

Farmwife

Farmwife

Grace is struggling. :confused2:

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.:yfaint:

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?
 
my little penguin

my little penguin

Moderator
Staff member
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.
 
Farmwife

Farmwife

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.
 
Tesscorm

Tesscorm

Moderator
Staff member
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).
 
Johnnysmom

Johnnysmom

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!
 
poppets mum

poppets mum

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.
 
Sascot

Sascot

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.
 
Farmwife

Farmwife

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.
 
Farmwife

Farmwife

Dexky
No, no new foods.


Grace seems better.

Is there any other illness that will cause white blood cells in the urine?
 
Farmwife

Farmwife

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.:yfaint:

:smile: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!:ymad:
 
D

DanceMom

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.
 
Farmwife

Farmwife

Thanks everyone,

She had a BM today. Liquid poo and blood. I'm not surprised, just not happy.
:yfaint: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.

:ymad::ymad:Still no calls back from any doctors.:ymad::ymad:
 
Farmwife

Farmwife

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.
 
Farmwife

Farmwife

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:
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
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?
 
D

DanceMom

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.
 
Farmwife

Farmwife

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.
 
my little penguin

my little penguin

Moderator
Staff member
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.
 
Maree.

Maree.

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.
 
Farmwife

Farmwife

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.:yfaint:
 
K

killcolitis

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?
 
Johnnysmom

Johnnysmom

This is probably completely unrelated but Grace's symptoms sound a lot like what my DS (non crohn's) went through last summer. I thought she had a UTI based on symptoms, she even had blood in her urine. They found tons of WBC in her urine and put her on an antibiotic. Once the culture came back clean they said to take her off it. That was 4 days into the antibiotic. She had one night of vomiting on the 3rd day. So we took her off of it and she had low appetite and on and off stomach pain for about 2 weeks after. She would say she was hungry for dinner and then not eat and say her stomach hurt. She was also tired and cranky. Johnny had something similar around that time, but no vomiting and he never said it hurt when he urinated. Just stomach pain on and off and decreased appetite. I just figured it was a virus, something they ate, since they both had similar stuff. Johnny's fecal cal was very high around that time. It could all just be small things that had nothing to do with each other but our DR. too suggested it was a weird virus. It hung around for several weeks on and off. They felt like the pain Brooke felt while urinating was from constipation. I am not sure about that one!

Hoping Grace is feeling better soon and she can enjoy her summer!!
 
Farmwife

Farmwife

I too hope it's a bug but bugs can get bad in kids like Grace.
I will be watching her like a hawk.

killcolitis,
Grace's EGID's is everywhere but her esophagus. She also has colitis. Whether it's UC or Crohn's Colitis is yet to be determined by scopes.
She's had no imagining in the way of MRE or pill camera.
Scopes only right now tell the story. We will be talking about more testing at next appointment.

Her GP called and said we may need to consider another round of Pred. We meet with the GI next week and I guess we'll know by then.
 
Clash

Clash

Goodness, yikes, I hope every thing is ok! Poor Grace.

I thought the majority of her inflammation was in her TI, did that change?
 
Maree.

Maree.

The GI raised heart, lungs and kidneys as possible areas of concerns.
He definitely wanted to rule out the possibility that we we're confusing angina with reflux.
 
Johnnysmom

Johnnysmom

Ugh.... You must be beside yourself FW. Poor Grace, I hope they can get her settled so she can rest up and get past this bug. Certainly it is difficult to figure out any of her symptoms when a virus is present.

((((Hugs))))))
 
my little penguin

my little penguin

Moderator
Staff member
Hugs FW
Make sure you keep the old button so if it happens again you have something to keep the whole ( stoma) open until you get to the ER
 
Farmwife

Farmwife

We're back. Thank GOD our local hospital could do it.
Of course her asthma became worse but she was a trooper with everything.
They were impressed that she didn't need to be sedated.
 
Farmwife

Farmwife

Clash said:
Goodness, yikes, I hope every thing is ok! Poor Grace.

I thought the majority of her inflammation was in her TI, did that change?
Click to expand...
Yes she has damage (microscopic) in her TI and transverse colon. Her rectum also show scaring but no active inflammation at the time.
 
Clash

Clash

So glad to hear that all went well and she didn't have to be sedated!

I thought it involved the TI as well, I do know when C's CD was really active(TI) he had problems with acid reflux but the ppi did a good job with it. I hope you can find some answers.
 
DustyKat

DustyKat

Super Moderator
Good heavens! :yfaint:

So good to hear all went well, :) , and what a star Princess Grace is! :medal1:

I hope all is well today FW. :ghug:

Dusty. xxx
 
Farmwife

Farmwife

Grace woke up happy after a night of asthma attacks.:yfaint:

She will be place in her bubble for the rest of the day.:smile:

Also the puppy is being put up for auction, I'll start the bidding at 1 US dollar.
She's a 100lb one year old Shusky (Sheppard/Husky).
She has a love for ropes and cords. Beware, she doesn't care if the cords might be hooked to your child.:ymad:
 
Tesscorm

Tesscorm

Moderator
Staff member
I don't need ANOTHER puppy!!! I`ll actually bid someone to TAKE ours before FW`s! OMG, our 3 month old English Pointer is driving me crazy!!! I just tried to take him for a walk and getting the collar on him was an all out brawl, locked him between my knees, he started chewing on my butt!, grabbed him the other way, he got a hold of Stephen`s shoe, tried to pull him back, he tried to leap at my coffee cup and I still didn`t have his collar on! :ymad: :yfaint:

But, I`m so glad they were able to take care of Grace quickly! :D
 
Farmwife

Farmwife

:confused2:Sorry Tesscorm until your puppy thinks your sons g-tube extension is a play toy......my dog is first up for auction!!!!:ymad:

However, that was a funny story, so points there!!!:lol2:
 
Niks

Niks

Poor Grace!!! I don't know how I missed this, sounds like she coped amazingly well!!! Bless her, and you. :ghug:

Love the puppy auction. Shame we're in the UK and I'm allergic to dogs lol.

Xx
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Tesscorm said:
OMG, our 3 month old English Pointer is driving me crazy!!!
Click to expand...
Is there a bird hunter in the family Tess?? I had one years ago, Abbie. She would get in the corner of her fence, put her back legs on one side, front on the other and walk right up and over that sucker!! She'd go hunt all day! :(One of two dogs I can honestly say I ever loved!!
 
Farmwife

Farmwife

:cool2:Yes Dexky her puppy hunts birds!

:confused2:Now let me tell you about my wonderful puppy that needs a good home!!!!!!:confused2:
 
Jmrogers4

Jmrogers4

Hugs FW glad it was taken care of quickly at the hospital.
Sorry not taking any puppies here, we have finally gotten ours to rug mode (she lays around all day like a rug)
 
Tesscorm

Tesscorm

Moderator
Staff member
LMAO.... I feel a nibble, BACK OFF FW! :voodoo:

Yes, Dexky, my husband hunts (birds only) - has actually done very little over the last few years as the kids kept us busy :eek: but, now that they`re older, it`s something he`d like to do again... you know, guy bonding and all that! :lol: Him, his brother and a couple of friends have actually gone all the way to Saskatchewan and S or N Dakota to hunt! ::ywow: He ordered this dog from a breeder in Tennessee, breeder shipped the dog to Buffalo, NY and my husband and daughter drove to Buffalo to pick him up. :ywow: But, OMG, I can so see our dog getting through the fence in no time! He`s just not quite big enough YET. :)
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
Farmwife said:
:cool2:Yes Dexky her puppy hunts birds!

:confused2:Now let me tell you about my wonderful puppy that needs a good home!!!!!!:confused2:
Click to expand...
Well, you won't be giving me any more damn dogs…but I'll make sure I don't introduce you to my wife:)
 
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