# Here we go again...?



## Mehita

DS has been doing great since his resection in January... until now. I don't know if I'm just paranoid or if my unease is truly warranted. I'm open to opinions on the matter 

He is on day 14 of a cold/virus and is feeling ok, but I think it might have triggered something inside. His BM's have changed from 1-2 normal ones a day to 3-5 mushy, colorful ones with urgency. During and after he has complained of minor stomach aches, but they are short lived and he says nothing like when he had his stricture. Other things to note is the need to have a BM in the middle of every meal and he started a new probiotic about a week ago. His appetite is normal. Aside from the cold and change in BM's, he says he feels fine. 

The post-surgery plan was to remain on Pentasa for now and do 6 month scopes and a MRE this summer. Then start either 6MP or Remicade as a maintenance med. 

I'm a little hesitant to do labs right now because of his cold... and because I'm not sure if I'm making something out of nothing. What do you think? And if we take a wait and see approach, how long should I wait?

Last question, if we were to start Remicade sooner rather than later and this is the start of a flare, would the Remi be enough to take care of inflammation or would he likely be put on pred as well? He's just starting to grow again and I'd hate to have to bring pred in again. 

So, paranoid or justified?


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## my little penguin

hmmmmm......
I would think the cold could have thrown a wrench into the mix. This is how DS presents at the end of a remicade cycle or after stress /cold etc...
IF it is truly a flare- the earlier on the remicade the better for getting it under control without pred.

For ds at least the next infusion reboots his system and symptoms go away without pred , but realize this is after being on maintenance remicade- It would take at least 6 weeks to get past the loading doses.
 Was there a reason for waiting till summer?
or was that just a wait until symptoms show up sorta thing then treat


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## Mehita

Waiting until summer was because his GI said he doesn't like to go in too soon and poke around in case things haven't completely healed yet, so he typically waits 6 months before scoping and imaging.


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## Sascot

This is a difficult one.  I would give it a couple weeks after the cold is gone to see if things settle.  Then you could always phone the GI and get his opinion at which point you can then let him make the decisions about whether it's a flare and needing treated sooner.  We've not used Remicade so not sure about the Pred. Hope it turns out to be a virus!


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## crohnsinct

Justified!  

How long has this new BM pattern been around?  Is it getting worse daily? 

I would agree with MLP, if they are eventually going to use Remicade or 6MP best to get on it as soon as possible and maybe you could avoid the prednisone.  Unless they were hoping to get away without having to resort to Remi and 6mp altogether.    

Sounds like the cold is mucking up the works, I have heard of that happening for a bunch of kids. 

Hopefullt he has caught a little bug along with the miserable cold.  

I am a caller.  It doesn't hurt anyone and will put your mind at ease if doc says don't worry.


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## Dexky

I agree with CIC!  Can't hurt to get the doc's opinion.

EJ's bowel habits are often up and down.  When he's home on weekends, 4-5 times a day isn't uncommon but he rarely goes at school.  After 3.5 years of this, as long as there's no blood, we've learned not to worry…as much!

Hope it's nothing Mom!!


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## Tesscorm

Yep, I'm with above...  there's no harm in calling and getting GI's opinion.  But, having said that, Stephen's had times when he's felt 'off', change in BMs, feeling 'different' in his abdomen, maybe a bit less appetite and/or tiredness, but it's always passed after a few days...  Like Dex, I've learned to wait and see for a few days...  Between the cold and new probiotics, his system may just be a bit off.  :ghug:


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## CarolinAlaska

Nothing new to suggest, but just letting you know, I feel your frustration.


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## Mehita

Normal poop this morning! Lets hope it stays this way. Never in my wildest dreams did I ever think poop would be such a big part of my life. 

If I ever forget what day of the week it is, I'll be sure to check in with EJ 

Do IBD kids just get hit harder with colds and viruses? It sure seems like it here. His brother had the same cold and he was done and good within 10 days. DS's is still hanging on and he was sick first. And we're not even on immunosuppressants yet!


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## Tesscorm

I don't think I've noticed much of a difference since Stephen's been diagnosed...  he rarely caught colds before and it's been pretty much the same, both in frequency and duration.  Now that we've started remicade, we'll see if things change...


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## my little penguin

colds were the same here for DS through 6-mp, mtx, and remicade
only saw a slight increase in strep - but that could have been just a fluke
glad he is doing better


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## Sascot

Since going on the 6mp, Andrew does seem to be taking longer to get rid of his colds - the stuffy/yucky nose tends to last for a couple weeks after the actual cold/feeling ill stage is over.  I remember reading somewhere that kids that take immunosuppresants are likely to take normal bugs harder and for longer.  I suppose it also depends on the individual child too. Yay for normal poop :ylol:


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## Mehita

I just got word from the top of the stairs, "Bristol #4, light brown"! Two days of normal poop. Thank goodness!

I need to stop freaking out at every little thing. 

Is it possible for us parents to have the Crohn's version of PTSD?? I just live with this constant anxiety that a flare up is right around the corner. Maybe it's from seeing DS suffer for so long and not ever wanting to have to experience that again. Or maybe I'm just nuts?

Right now I'm leaning towards nuts.


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## Tesscorm

OMG, I totally agree with the PTSD!!!  It took MONTHS, if not over a year, after Stephen's that any little thing threw me into a panic!!!  With me, I think what I felt was that once Stephen was diagnosed with an incurable illness, I lost that 'it can't happen to me' security blanket!  All of a sudden, anything was possible because 'it did happen to me' already, so why couldn't something else happen?!?!  

But, things have gotten better... either I've gotten used to life without that security blanket or I'm hiding beneath another one - 'it can't happen to me AGAIN! :facepalm: Regardless, I'm no where near as panicky as I was... I still question LOTS and am always on the lookout for 'anything' but I don't immediately assume the worst.

I think the longer your son feels well, and the more times he has a blip but quickly comes out of it, the less panicky you'll be. :ghug:


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## Dexky

Mehita said:


> Right now I'm leaning towards nuts.


Yeah, but it helps keep us from going insane!!


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## DustyKat

PTSD? Welcome to nut bowl where I have been residing for 7 years and there is no sign of me moving out! :lol2: 

Sending loads and loads and loads of luck that all stays settled! :goodluck: 

Dusty. xxx


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## Mehita

Now entering our fifth day of diarrhea. Well, maybe not diarrhea, but definitely loose stools. I heard DS at 4:00am this morning... not only did it wake him up, but he didn't make it to the toilet. He has no other symptoms, just this, and still says he feels fine. I asked if he has any concerns about the urgency and going to school today or his tennis match tomorrow that is an hour long bus ride and he said no. He says he can control it when he's awake.

Time to call the GI.

I would think that the change in probiotics two weeks ago would have worked itself out by now, right?

Well, it was a nice ride while it lasted.


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## Mehita

Do you ever do some labs or tests and just think, "Ok, this is stupid," because you just know what the results will be? I understand that doctors need to rule things out first and have to admit I enjoy the "told you so" moments when I'm right, but sometimes I feel like we're just wasting time while DS progressively gets worse. 

... and then it's the weekend.

We've been offered antibiotics, but I'm pretty sure we're not dealing with an infection here. Frustrating.

And it's flippin' snowing AGAIN!


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## Brian'sMom

My son doesn't seem to do well on probiotics. Either does his Dad. Seems to add symptoms for us.


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## Tesscorm

So sorry he's dealing with this!  And, I hear you on the 'waiting' after the tests - especially to just be told what you already knew!!!!

I hope the weekend goes a bit better for him!


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## Johnnysmom

Probiotics can take a month to get things regulated and they can cause gas, bloating and urgency.  My GI put me on them and I waited because I was in my sister in laws wedding in the next 2 weeks and my GI told me I might get very bloated and have a funky stomach for a while and I really didn't want to deal with it for the wedding.  

As far as being sick an on immune suppressants, Johnny was much worse before he was put on them then after.  My guess would be that this cold sticking around has more to do with the resection in January and his body healing up.  Once he is on immune suppressants, if he is pretty careful about washing his hands etc you will be amazed at how well he does.  There was a nasty cold that everyone in the house got except my son.


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## Sascot

It's difficult to know what to do when it comes to antibiotics.  Maybe it's worth trying if the docs think it will help.  I know something like Flagyl is supposed to have anti-inflammatory properties as well, so that might be a good option?  I know what you mean about tests - I just used to roll my eyes whenever they used to make Andrew have them - they have never showed anything!


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## Mehita

The diarrhea continues. He's exhausted from waking up several times a night.

All the stool tests came back negative. Fecal Cal will still be another couple of days. We are seeing the GI today after school and doing blood work.

Goodbye, remission. Nice meeting you...


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## Mehita

I guess DS had some vesicles (?) in his mouth so GI is still thinking it's a virus and rattled off five different kinds it could be. Ever hear of echovirus?? The sores aren't the typical Crohn's ones though. Poor DS donated 9 vials of blood. I guess we're covering all the bases!

We're starting 14 days of Flagyl to see if that clears things up. If not, then we'll scope and see what's going on. If inflammation shows up in labs or scopes we'll be moving on to a very short 2 week pred course along with 6MP. I was a little surprised at that, but GI said he still believes DS only has mild Crohn's and doesn't want to use the biologics just yet. Very interesting appt - our second with this new GI. I like him a lot and DS loves him. 

So... here's hoping for a virus!?!?!?


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## momoftwinboys

Sorry your son is having a rough time. 

I have read coconut macaroon cookies can help with D. There are recipes for gluten free ones if u google it. Do not know if it will work but maybe worth a try. 

http://www.crohnsforum.com/showthread.php?t=48693


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## Tesscorm

Hoping with you that it's just a virus!!

It does seem your GI is looking at all possibilities! Hope all clears with the flagyl! :thumright:


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## Mehita

Whoa! Just got labs back. 

Sed rate is 30 (range 0-15)
CRP is 50 (range 0-8)
Also slightly anemic.
Still no fecal cal results but I'm going to wager they're not good.

In the five years DS has had Crohn's his numbers have never been this high. My paranoia is justified.


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## DanceMom

I'm sorry his numbers aren't good.  On the bright side, at least his labs reflect what is really going on in there (and labs are simple enough to do).  My daughter's labs are always perfect despite having inflammation discovered through biopsy.  Guess maybe we will be doing the Prednisone thing together, lol.


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## Tesscorm

So sorry the results weren't better! :ghug:

Flagyl does have anti-inflammatory properties so, hopefully, the flagyl and pred will quickly get things under control!!


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## my little penguin

Huge
Hope your time on pred is short and 6-mp is strong enough
To get things under control


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## Twiggy930

Sorry to hear the blood work came back high.  Hope the 6MP works quickly.  Our docs also favor doing the azathioprine/6MP before jumping to the biologics.  I see advantages and disadvantages to both routes.  

BTW  I too am waiting on fecal calprotectin results and all this waiting is making me CRAZY.


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## Mehita

Goodness, we are just having a miserable day! GI never called today even though the labs are in. The Flagyl doesn't seem to be doing anything... maybe even making him feel worse?

DS has spent most of the day in the bathroom. Alternates between diarrhea and stomach aches. He's gone 7 times in the last 12 hours. Every time he even nibbles on something it sends him directly to the bathroom again, yet he says he's hungry. He's trying to stay hydrated but even that is upsetting his stomach.

Just now he told me his eyes hurt and are watery. Is that normal?? He said he thinks it's from too much screen time since he's been reading a book on his iPad all day, but I don't know?

He also asked for a Zofran and Ralph (our vomit bucket). 

He's getting pretty frustrated and cried for awhile. I just cried with him. I don't know what to do. Overall, he is worse than yesterday, but stable. I don't know if calling the on call GI will solve anything since they tend to usually say "I'm not familiar with his case, but come to the ER if you need to".

Any suggestions?


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## Mehita

And we can add a 102 fever to the mix


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## Dexky

Does your hospital have an online messaging system?  Can you e-mail him?  I hate to read about him this sick and you with no contact!


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## Jane and Nick

It must be so very stressful! I am sorry you are both having to go through this horrible time. I hope tomorrow brings a better day. Sending love and positive thoughts.


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## Tesscorm

I'm so sorry, Mehita, that he's going through such a tough time. 

How is he this morning, any improvement at all?

If the eye pain doesn't improve, it could be related to inflammation.  There is some eye inflammation associated with crohns, I believe it's called uvietis (not sure of name or spelling ??).  You can probably find some info under the EIMs subforum.

Hope last night and today are better! :ghug:


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## Brian'sMom

What's he basing his theory of it being mild on? Scopes?
I hope things get better soon.


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## Mehita

GI's (we're on our third!) have always said mild Crohn's because the only area that has ever showed disease was at his stricture, which has since been removed. All previous MRI's and scopes have always been clean everywhere except that one affected segment. But to me, if this is truly a flare, to have symptoms just two months after being "clean" with the highest inflammatory markers he's ever had is not mild. I'm not accepting mild anymore. I might even punch the next person who tells me it's mild. I think "mild" is why I'm having trouble getting GI's take me seriously when I say Pentasa isn't working and they're slow to try other meds.

Scopes are scheduled for Friday morning. Part of me thinks, "Yeah! Finally!" and then I think, "Two more days of this?"

Last night with that fever and erratic breathing, I had every intention of taking him to the ER... and then I fell asleep!! I didn't mean to fall asleep and I recall _dreaming _of taking him to the ER, but in reality, I never did. I woke up so confused this morning! Thankfully, he slept through the night as well.

His GI said to stop the Flagyl. He thinks it's contributing to the diarrhea and causing the nausea since things got worse after starting it. It's been 7 hours since his last dose and he's sitting up doing homework and had only two bathroom trips (still D tho). He even ate a little bit. Overall, better than yesterday, but that's not saying much.

GI is still thinking this might be viral, particularly if he perks up in the next day. Can a virus cause high CRP and SED? If this is "just" a virus, it's really doing a number. My gut is telling me it's not viral. Unfortunately,  we haven't known this new GI long enough for him to figure out that Mom is always right. I'm only half kidding


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## crohnsinct

Oh Mehita!  So sorry to read all this. 

I think a virus can elevate sed and CRP.  Any inflammation in the body can raise those.  Did you get his fecal cal numbers back yet?  Those are usually more reliable for intestinal inflammation.  

Weird question and maybe not even a good one given Flagyl didn't work but did they test him for c diff?  Since he was recently in the hospital and given his symptoms I would think they did but just putting it out there.  Sorry if you mentioned it already but I am not on home computer and having trouble navigating the forum. 

It sounds like to me momma is right!  But holding out hope for virus or bacteria.


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## Mehita

No fecal cal numbers yet. Two c diff tests. One last Friday and one last Monday. Both negative.


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## crohnsinct

Sorry was hoping.   :ymad::ymad::ymad:


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## Brian'sMom

I'm sure they'll do biopsies at scope, but make sure they do. Our GI immediately after scope said, crohn's is still only affecting his sigmoid colon and rectum...and the transverse isn't involved anymore and its NO where else! We were sooo happy ONLY to be told 2 weeks later that the biopsies told another story. Inflammation in every biopsy she took!!! Only his esophagus is unaffected. She was surprised herself.


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## Mehita

Thanks for the tip, Brian'sMom. I will definitely ask for biopsies.


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## Brian'sMom

I always request pictures too! I'm getting to be more and more a skeptic. I'm like, I want to see what you see!!
Good luck Friday. I'll be praying for you and your son. It could very well be a virus. Fingers crossed. At least you'll know soon


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## my little penguin

Hugs
Second the biopsy
DS looks clean but biopsies tell a different story
We were told that DS was "mild"
While on 6-mp despite still having on going inflammation.


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## Dexky

I'm glad they're scoping Mehita.  I hope his cleanout and procedure goes smoothly.  Good luck!!  I know you'll let us know.


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## Mehita

Oh my... can a fecal cal of 1332 be right???

Normal is less than 50, 51-120 elevated, 121+ high.


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## my little penguin

Yep
That high at least we were told would indicate a flare.
They expect elevated in Ibd kids.
Some gi's like to keep fecal cal below 300.
Our Gi explained a flare is typically in the thousands
So 1300 sounds about right


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## Twiggy930

Yep, we've been told that during a flare FC numbers can be in the thousands.  What is the plan now?  Is he still feeling a bit better?

Still waiting on the FC results around here.


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## upsetmom

Good luck with the scopes...:ghug:


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## Maree.

Good luck with scopes, hope you get some answers.


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## crohnsinct

Unfortunately, yes.  Inflammation!  Time for you to start singing your I told you so song...also time for our dear friend stabbie :voodoo::voodoo::voodoo:

Are the FC numbers alone enough for the GI to act on and maybe avoid scope?  Probably a moot point now that he has done the cleanout...they will make you go through with it. 

Good luck!


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## Tesscorm

Sorry that the FC numbers are confirming the inflammation! :ymad:  But, hopefully, acting on it quickly will bring quick results!!!! :ghug:


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## Mehita

Hey, guess what?? DS has Crohn's disease and is currently flaring. Doh! Score one for Mom.

Here's a summary... if anything stands out as a red flag, please let me know!

Biopsies and pictures were taken. Biopsies back in a week. Endoscopy showed "no gross lesions in the esophagus, stomach or duodenum." Yeah!

Patchy inflammation in the colon and terminal ileum with a few ulcers, erosions, erythema, granularity and mucus. Still "mild". Yes, he used that word, but no, I didn't punch him. Thought about it though! Slight concern that this flare seemed to come on so quickly.

Starting 40mg pred today for 7-10 days, then stopping cold turkey (?) if he's doing great. If not, we'll do pred another week and then taper. Starting Azathioprine tomorrow alternating between 25 mg and 50 mg every other day with bi-weekly labs until further notice since DS doesn't have the greatest TPMT score (15). GI wanted to do 6MP, but because of the low dosing and DS's weight, I'd be cutting a tiny pill into thirds. We could do the liquid 6MP, but he said it's not as effective. So that's how we ended up settling on Aza. 

Though he couldn't see it, he believes the small intestine is likely inflamed as well. He even wanted to try and get an MRE done today, but decided the scopes gave him enough evidence to start treatment today no matter what, so no MRE until late this summer or if Aza doesn't work. Also, decided DS has stricturing disease that can be controlled if we can keep the inflammation in check.

I think that pretty much sums it up. Any red flags? Any questions I should follow up on?


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## Tesscorm

I'm sorry that all the tests have confirmed a flare :ymad: but, at least, you can get on top of it right away and he can feel better quickly.

Sounds like you've covered everything!  I can't really think of much else I would ask...  I imagine GI will be looking to see if symptoms disappear and how labs look to determine if Aza is working but, since you have a current FC, I would ask when would be a reasonable time to expect results from the Aza and could another FC be scheduled to confirm it is working (maybe mid way between now and when MRE will be done??)

How did they decide he has 'stricturing disease'?  Were there signs of stricturing now?

Hope he's soon feeling better! :ghug:


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## Mehita

I will ask about a follow up Fecal Cal. Good idea, thanks, Tess.

He didn't see stricturing today, but used the phrase several times. After the third time, it caught my attention. I think he's basing it on DS's history with the resection. That was when and how we met him, so DS is "the kid with the stricturing". Silly, I know. I will ask again to clarify.


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## ChampsMom

Glad you got some information (clarification) - sorry you were right (not surprised - Mom's rock!)  Hope everything starts to settle down.  

I have never heard of stopping prednisone without tapering - that one was new to me... Would seem drastic.  

Praying for you all!!


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## Tesscorm

Stephen's never used pred so not from personal experience...  but I have read here that very short courses of steroids can be stopped without tapering.


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## DanceMom

My youngest daughter has had Prednisone for 3-7 day periods (for croup) many times with no taper.  She didn't have any withdrawal symptoms, even doing it once a month (stupid croup).


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## Sascot

Sorry to hear about the confirmed diagnosis - don't know why doctors don't listen to us mom's more!  Good luck with the meds, hope they work quickly.  Not dealt with Pred (we did the 8 weeks EN) so no advice there, sorry.


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## my little penguin

It is called a pred burst.
It is often used in asthmatics to calm the airways( inflammation).

It can be used in Ibd but usually for "mild" stuff.

Hope its enough in your case.
DS has only had the tapering kind for his Ibd.
He has had multiple "bursts" over the years for asthma.


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## Johnnysmom

Johnny was on a short course of prednisone with no taper but it was a very low dose for poison ivy.  

We did 3/4 of a 6mp pill for about a year.  It is a pain to cut every night.  But if you think  it is a better med for DS it really wasn't too bad.  

Johnny also got an MRE about 2 weeks after his scope, Dr. didn't want to wait.  I would think with DS's history and that fact that things look mild but fecal cal is high it wouldn't hurt.  But I am sure the GI has good reasons.  Just a thought.  

Hope that short burst of Pred gets things better quick!
(((((Hugs))))))


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## my little penguin

We cut DS 6-mp pil into 1/4 when he was on it with allopurinol.


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## Catherine

There should regular blood tests I would expect the first one to be about a week after starting aza.

Good luck.


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## Brian'sMom

When we did Pred it was over 6 weeks...Since pred is used to stop the flare...the wean is used so that the immune system doesn't flare again when you stop the pred. So the gradual wean is to not upset things. I think that's right but I could be wrong, anybody else? I don't have much knowledge of prednisone because our GI doesn't prescribe it much. It only worked for ds the first time. Other times he flared right thru the whole 6 weeks.


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## Mehita

Oh, the joys of pred! Already experiencing the mood swings and uncontrollable crying. Thank goodness for You Tube, stupid people and funny videos. That finally got him out of his funk and now he's back to being Superman. 

On a positive note, he had a nice, regular looking BM today and is down to only two bathroom visits so far. Just two days ago he had 14 diarrhea trips, so I guess the pred is doing its (black) magic already.

So, which would be better - stopping the pred burst after this week because it is simply evil or doing a taper and being on pred for 6 weeks... yet closer to Aza kicking in? While this is somewhat trivial, all the fun end of the school year stuff is starting to happen and DS doesn't want to miss any more school. That might be a benefit of tapering, no? I'm sure our GI would go either way since he hemmed and hawed while writing the script.

I think we'll stick with the Aza for now, but his GI said we could switch to 6MP anytime we want. He'd prefer DS to be on 6MP, but also said by starting with Aza it gives us one more choice in the med hierarchy. If there are side effect, we'll just switch and make it work. It would help if DS put on a few pounds so he wouldn't be in between dosages. I'm totally open to splitting pills in halves and quarters. Nice even numbers, but thirds seems awfully tricky with a round pill.

It may be a mute point anyway. I just have this weird feeling Aza/6MP aren't going to be our wonder drugs. Absolutely no logic or reason for that, just a feeling.


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## Farmwife

Yup the love hate relationship with pred......we have it to. Grace is struggling and my first thought was oh goody let's get her back on pred and I'll have my baby back. The next thought was I hate that stuff.:ymad:

I think the tapper might be a good idea but that's up to you guys. 
Also on a side note ask your Pharmacist on how they cut pills. The might be able to give or show you something. We have a pill cutter. I love it!

I hope all goes well.


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## Dexky

Are you confident in your GI?  He just seems a little wishy-washy!  Maybe that's better than a god complex but I'd rather he seem a little more confident in his decisions!  Let us know what you decide as to pred.


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## my little penguin

Hugs - we have seen both types of GIs . Once you understand what is going on
The work with you type is better at least for us.
Good luck on the pred.
I would ask the Gi what he sees as the risk for doing short vs taper for your child.


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## crohnsinct

I can only comment on our experience.  Only a very slow taper worked for O while waiting for Remicade to kick in.  But she didn't get any of the awful side effects so it didn't bother us.  If your GI would go for a taper, why not try to give the Aza every chance to work...would hate to abandon a drug because of too agressive a withdrawel of Prednisone.  Also, you want him healed!  A slow taper will give him that time to heal!  No back and forth if you know what I mean.


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## Johnnysmom

^^^^Yeah that!

I think the less inflammation you have when you start AZA the better chance it has to work.


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## Sascot

Hope the Aza starts working asap.  I can understand him not wanting to miss stuff at school, so I suppose I would be inclined to do the longer course and let him have some fun!


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## Mehita

Dexky said:


> Are you confident in your GI?  He just seems a little wishy-washy!  Maybe that's better than a god complex but I'd rather he seem a little more confident in his decisions!


I attribute the wishy-washy to the fact that we're still "dating". We've only seen him twice so far so he's still figuring DS out. He strongly believes that pediatric IBD is it's own world and doesn't always fit neatly into a box so philosophically we get along quite well. He just completely won me over today by responding the the email I sent him earlier... on a Sunday no less!

GI just said we could drop to 35mg of pred tomorrow to see if that helps with the uncontrollable crying and hefty mood swings. I think I'm leaning towards a taper... get us to the end of school, add poundage, give Aza more time.

Thanks for all of your input, everyone. I got a little sentimental today thinking of all the Forum moms (and Dex!) out here and how much I appreciate your knowledge, kindness, and friendships. Happy Mother's Day!! :ghug:


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## Dexky

Mehita said:


> I attribute the wishy-washy to the fact that we're still "dating".


Great way to put it


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## DustyKat

Hey Mehita, sorry for the late chime but I just wanted to raise a couple of points. :hug: 

As you know, it is possible to have high doses of Pred over a short period without tapering but the tapering required for a longer course isn't just about treating the inflammation. Normally Pred is prescribed at high dose for at least 3 weeks. It would be expected that over that 3 week period most of the inflammation, if not all, would be brought under control and reduction of acute inflammation or remission is achieved. The taper has much to do with preventing steroid withdrawal/adrenal crisis as anything. When you take steroids for longer than a couple of weeks your own body's production of the hormone cortisol is suppressed. The tapering of the Pred is to allow the body to start producing the hormone again. 

Re: the mild disease. I know it is difficult to comes to terms with the label mild disease and what you see happening in front of you but mild disease can be present and still complications arise. Although my children don't have stricturing disease I have been in the same situation, they have fistulising. My son was diagnosed very quickly and his disease was rated as mild to very mild and yet he developed one complication after another. Certainly not what I would have expected after receiving such a promising pathology report. In his case it obviously only took one deep ulcer to cause no end of bother. I only say this Mehita because I don't want you to get caught up in labels that can be misleading and disappointing. :ghug: 

Thinking of you, :heart: 

Dusty. xxx


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## Mehita

I wish I could freeze time right now. Normal poops. Good energy. Great appetite. No pains, no nausea, no vomiting, no fevers. Can we just hold steady here? Forever? 

Life would be perfect if it weren't for the fact that prednisone is the source of this taste of normal life that we're experiencing. 

Who was it who said, "Love pred, hate pred, love pred, hate pred"? Farmwife, maybe? That pretty much sums it all up.

Let the tapering begin...


----------



## Farmwife

Mehita said:


> Who was it who said, "Love pred, hate pred, love pred, hate pred"? Farmwife, maybe? That pretty much sums it all up.
> 
> 
> QUOTE]
> 
> 
> :smile:Yes, that was my pearly words of wisdom.
> Rules on using Farmwife Quote..................
> The first use will be free of charge.
> The second quote will be a $1000 dollars and an act of God himself for me to say anything else smart (hush crohnsinct:ymad.
> 
> 
> :lol2:


----------



## my little penguin

rder: FW


----------



## Twiggy930

Pred, our frenemy.  Got to love/hate it.


----------



## Mehita

First set of labs back - CBC and hepatic panel all normal with only slightly elevated neutrophils. Pred taper is going well so far and no Aza side effects to speak of really. 

Is it too soon to feel hopeful? I really want the Aza to work for... oh, a hundred years or so.

Next appt/labs are June 9th.


----------



## Mehita

Last day of school and DS just went from excitedly bouncing on my bed to a gloomy, doomsday puddle of tears. Lots of "I don't know's" and still sniffling as he left for the bus. Hormones? Pred? Mad at me for making him brush his teeth a second time WITH toothpaste?

What a lousy way to start what should be a fun and happy day.


----------



## DanceMom

A woke up very grumpy too, wouldn't even look at me.  In her case I think she is getting a cold.  She's complaining of a sore throat and being tired (and the rainy windy weather certainly isn't helping).  We just weaned her off her daily inhaler so I hope this cold doesn't set her back.  Our poor kiddos.


----------



## ChampsMom

Mehita said:


> Last day of school and DS just went from excitedly bouncing on my bed to a gloomy, doomsday puddle of tears. Lots of "I don't know's" and still sniffling as he left for the bus. Hormones? Pred? Mad at me for making him brush his teeth a second time WITH toothpaste?
> 
> What a lousy way to start what should be a fun and happy day.


Oh Mehita.... I couldn't help but laugh and think to myself that one day you both will look back on this day and laugh too...  In my family it would have been the fault of having to brush a second time... that is so funny...

I hope he comes off the bus with a big smile for the Summer!!


----------



## Maree.

I'm sooo jealous we've got too weeks of school to go.  I hope the toothpaste incident was the low point of the day and it turned out well.


----------



## Jmrogers4

:ylol::ylol: Yep, I've had to send them back to brush with toothpaste as well but I think I live to embarrass my kids now.  It is so easy with tween/teenage boys.
On my recent chaperoning trip that was how I convinced the 7th grade girls to keep in contact with me.  If they didn't I told them I would hang out with them the entire time and embarrass them.


----------



## DustyKat

@Mehita...I hope the day ended better than it started?? :hug: 

@DanceMom...I hope A's day was a good one too and that she isn't coming down with a cold.  

Dusty. xxx


----------



## Mehita

Betty Crocker saved the day with gluten free chocolate chip cookies after school.


----------



## Johnnysmom

Thank you Betty Crocker!!

I am amazed at how many gluten free options there are now.  How do they compare with non-glutin cookies?


----------



## my little penguin

gluten free just doesn't have the "Stick" so
it really depends on finding the right flour combo

adding a ton of chips also helps "melt" it together.


----------



## Mehita

Let's just say Betty Crocker is convenient. Fresh out of the oven they're not bad, but after a day they get pretty crumbly. I'm not GF and think they have an odd after taste, but DS likes them. Then again he doesn't remember what "real" cookies taste like. 

Just picked up Pillsbury's new gluten free cookie dough today. DS is excited to eat it directly out of the bucket. Five years ago we could hardly find a good tasting loaf of bread and now we have cookie dough. Pretty exciting stuff for us kitchen challenged folks!

Really, I do feed him healthy foods on occasion  .


----------



## Mehita

Happy, happy, happy! Normal labs today.

A little iron deficiency anemia, but we can work with that.

Still waiting on 6TG and 6MMP results. Not expecting much news there since he's still at a very low dosage. Will likely increase his dose this week to start building to therapeutic levels. 

Letting my guard down just a little...


----------



## Clash

:banana::banana::banana: That is awesome news!!! It is always such a relief when those results come back looking good!!!:banana::banana::banana:


----------



## Jmrogers4

Yahoo!! What great news.


----------



## ChampsMom

**woohoo**!!


----------



## Tesscorm

So good to hear!!! :banana:



> such a relief when those results come back looking good!!!


  OMG, isn't that the truth!!!


----------



## upsetmom

Great news!!!!


----------



## Mehita

:banana: I've decided I really like dancing bananas!:banana:


----------



## DustyKat

So happy for you and your lad Mehita! 

Dusty. xxx


----------



## Brian'sMom

Great to hear!!


----------



## Mehita

Another set of good labs today! Typically his WBC and neutrophils are slightly high, but even they came back in the normal range. Liver is holding steady. Aza is at therapeutic levels. Life is *gasp*, dare I say it? ...good?

Going on 15 pounds and 1 1/2 inches in six months time. It's nice to be back on the charts.

Labs again in a month. Check in with GI in two months. Hoping not to post on this thread for a very long time!


----------



## Clash

Wow, sounds like things are moving right along!!


----------



## Kimberly27

Yeah!

Kimberly


----------



## upsetmom

I hope everything continues to be good..:dusty::dusty::dusty:


----------



## DustyKat

Thanks for the fab update Mehita. May it keep on keeping on! 

Onwards and Upwards! 

Dusty. xxx


----------



## Dexky

Mehita said:


> Hoping not to post on this thread for a very long time!


Hey now!!  We like *good* news too!!


----------



## Crohn's Mom

Love, love LOVE the good news !


----------



## crohnsinct

AWESOME news!


----------



## Tesscorm

Great to hear!!! :dusty:


----------



## my little penguin

:dusty: Awesome!!


----------



## Mehita

I hate Crohn's.

DS has been constipated. I optimistically attributed it to the iron sulphate, but deep down had "a feeling". You all know that feeling.

He's on a super low dose of Aza and his AST liver number keeps creeping up. Today it was above the normal range. Not by much... it was a 38 and the normal range tops out at 35. What kinds of numbers do you need for the plug to be pulled on Aza? His ALT was still in the middle of the normal range, but that too is creeping up with each blood draw. Sed and CRP are elevated above normal as well. 

Could is be a mini flare? I'd hate to give up on Aza so soon. So frustrated right now.


----------



## CarolinAlaska

Jaedyn's went up a little at first then came back down.  Not too alarming yet.  Hold on tight!


----------



## my little penguin

for Ds they pulled at 3X the normal limit. They let it creep for two blood test but by the third it was way above normal ( I think 90 - ish ) for both AST/ALT. It had been barely above 35 for the other two.


----------



## Sascot

Sorry to hear the numbers are creeping up.  Same for us - 3x the normal limit is the top end of what they will allow.  Hope things stabilize again.


----------



## Mehita

What do you think about the CRP and Sed being elevated? I just read that inflammation can cause AST to rise also. Maybe that's the cause?

And with the inflammation... now what? Would they put him on pred again? Increase Aza? Add something else?

Too many questions running through my head and, unfortunately, it's the nurse's clinic day so I won't hear from her for awhile.


----------



## Tesscorm

Stephen was never on 6mp or Aza, however, his ALT and AST levels were always a bit high (this was while he was on supplemental EN only, no meds).  Our normal levels seem to be a bit different from yours but, last May (2012), Stephen was at his 'usual' ALT 55-60 (norm high is 50) and AST 40 (norm high is 36), then between his May and July bloodwork they both almost doubled!  There were no changes in treatments, nor diet nor symptoms (not even CRP or ESR).  And then, since last July, they've both just gradually dropped to normal levels (even before he started on Remicade in Feb.)???

Have no idea what caused them to go up so suddenly???  One suggestion that came up when I questioned it was a connect with exercise...  I looked into it and found a study that showed a connection between weight-bearing exercise and ALT/AST (and S had started lifting weights at the gym at that same time) but the impact on ALT/AST was supposed to be transient...  so as it took six months to return to normal, still really have no idea if that could have been the cause.  GI wasn't overly concerned at the time.

  Sorry you have this worry now. :ghug:


----------



## Dexky

Mehita said:


> And with the inflammation... now what? Would they put him on pred again? Increase Aza? Add something else?


Hopefully things will settle Mehita, but from our experience I'd say all 3 of these are possibilities maybe even at the same time!  Sometimes I swear they're just guessing!!


----------



## crohnsinct

Ah yes!  Time for another round of our favorite game "Out guess the GI".  I'll take Prednisone for $300.


----------



## DanceMom

A has only had 1 set of labs since starting 6-mp but her numbers were a little off too.  Her AST was normal, but her ALT was 43 (8-24 norm).  Her GI thought that was fine initially, but did pull the med for 2 days while she was in the hospital just to be sure it wasn't making her sick.  It wasn't.  I hate that we have to worry about this stuff.....


----------



## Mehita

In the game of "Outguess the GI"...

Not concerned about the AST.
Stopping the iron sulphate.
Status quo on Aza.
Stick with the Miralax another 3-4 days. If no improvement, hello pred... or Flagyl, but Flagyl didn't go so well last time.


----------



## kimmidwife

Did he at least say they would keep an eye on the numbers? What did he say about the CRO and SED rate? Was he concerned about those at all?


----------



## Mehita

kimmidwife said:


> Did he at least say they would keep an eye on the numbers? What did he say about the CRO and SED rate? Was he concerned about those at all?


He said we'd watch it (another appt in Aug) but right now he's "not ready to modify the long term plan based on this". But this makes me a little nervous and is essentially why we fired GI #1 and GI #2 who also allowed simmering inflammation... which I believe is how DS ended up with a scar stricture/surgery.


----------



## Catherine

Pred may bring the inflammatory markers down giving the aza longer to work.


----------



## Dexky

Maybe pred, maybe Flagyl?  Talk about guessing!!


----------



## Tesscorm

Will he be doing blood tests again before his next apptmt?  If tests are not scheduled before the GI apptmt, can you ask to have them done?  This way you and GI can discuss recent tests, not those done a month earlier.


----------



## Mehita

Yes, I will schedule labs a couple days before. I have to see what his current standing orders are.

So, why would they be thinking Flagyl? Just because of its anti-inflammatory properties? What is it typically used for?

I'm still keeping my fingers crossed that this is all just a blip from the darn iron.


----------



## DanceMom

A is on a short course of Flagyl too.  She was initially started on it in case she had c-diff, but when that came back negative the GI felt it was still beneficial because of the anti-inflammatory properties.

It did stop her diarrhea fairly quickly but now it has returned.  She also has bloody stools now and didn't prior to starting Flagyl.  Not saying the Flagyl caused the blood, just saying it hasn't completely helped the situation.


----------



## Tesscorm

When Stephen was in hospital, while being tested pre-diagnosis, he was put on IV flagyl for a week.  It dropped his CRP huge - went from 136 to 4 in that week.

I don't think he had any side effects (ie diarrhea) from the flagyl specifically but hard to say as he was in the hospital because he was already sick.  Also, keep in mind, he had it through IV.


----------



## Brian'sMom

Our ibd coordinator said lots of kids are on flaygl for lengthy periods of time cause it helps them. Brian always seemed better when being on it. He only did it twice for 6 weeks each time.


----------



## DustyKat

Flagyl is used for both it's antibiotic and anti-inflammatory properties. 

When you are flaring doctors often believe that there is a degree of infection present, hence the Flagyl. As you know Crohn's causes inflammation that attacks the lining of the bowel wall. When that attack takes place it breaches the lining, now the intestine is not a sterile environment but beyond that wall it is, so when it is breached it is very likely that that an infective process will take place. So it often prescribed as a first line treatment, with or without other meds, to bring things back into line as it treats the infection and the inflammation. 

Matt was on Flagyl for 6 months. 3 months pre op and 3 months post op. Pre op was to keep him stable in the lead up to surgery and post op as the Crohn's specialist is of the belief that it helps to establish and maintain and longer remission. 

Matt did not appear to suffer with any side effects from it. He did much prefer the brand over the generic due to the taste issues. 

Dusty. xxx


----------



## Mehita

Very interesting on the infection thought. Up until DS started the Aza his WBC has always been just a tad above the normal range, even when feeling great. 

Six days of Miralax and BM's are still a mess, but the visits are getting shorter. DS says its helping...?


----------



## Dexky

What?  Miralax, or did you start flagyl??


----------



## Mehita

No Flagyl yet. DS says the Miralax is helping. I'm not so sure, but...


----------



## Mehita

And he's back to having accidents at night. Doesn't make it to the bathroom in time. Last night even pooped while asleep. Woke up and there it was. Nice, huh?

Waiting for a call back. Any one want to take bets?

I have no proof, but my gut is telling me that if we run labs today we're going to find the inflammation markers a little higher still, not alarmingly high, because they never are, but higher. Again, no proof, but I think something is going on in his colon. He hasn't had a normal, solid BM since early June.

He's been going to the bathroom 5-8 times a day. Sometime productive, sometimes not. 

This week is three months on Azathioprine. He's been at therapeutic levels since the first month. I really don't want to give up on Aza, but it doesn't seem to be working. Just in the last month, two weekends of night time pooping? 

Just bummed...


----------



## Johnnysmom

Not to confuse the situation further but....
Miralax can cause stool leakage.  It did for my DS but once he was on it for a prolonged period and we got the dose right that stopped.  

It also has something to do with retraining the bowel to "learn" not to get overly full before emptying.  Stool can also leak if it moves around a large impacted stool but that would not be a regular size BM it would just be a bit.  

6mp didn't work overnight for Johnny, the pred handled the inflammation quickly but any healing after that took a long time.  Probably a year before we hit good solid remission.  But, things never got dramatically worse either,  just slow improvement overtime. 

((((hugs))))


----------



## Mehita

Thanks, Johnnysmom. Going to drop to 1/2 a capful of Miralax today and see how that goes. Fingers crossed. This retraining of the bowel... the Miralax does that over time? 

Maybe we just haven't found the perfect balance yet.


----------



## Johnnysmom

It was explained to us like this...

The large stools actually cause the nerves in the rectum that 'signal' they need to be emptied less and less as they stretch and the bowel expands.  Constipation  can be a vicious cycle because having large stools and a stretched rectum makes it more difficult for them to tell if they have to go, and to have the pushing strength to get the stool out. If you start miralax the loose stool can leak through around the harder large stool.  The retraining is actually just the amount of time it takes for the bowel to shrink back to its normal size and for those nerves to start working properly again.  It took several months for johnny but his stools where huge.  He could go 8 days without a BM.  If we didn't stay on the miralax consistently everyday he had the leakage and things didn't stabilize.  Johnny does one tablespoon, which is less than normal amount.  He is 5'11" and 140 lbs.

Also, don't have him drink it at the same time as taking oral meds.  The miralax will inhibit the absorption.  This was something our Pediatrician talked to us about, she hadn't seen any studies but if you read about how it works, it makes sense to avoid taking it with other meds. 

Hope it works


----------



## crohnsinct

Oh man...you guys are bringing back my nightmares.  I had this with my older non IBD daughter.  I don't remember so many of the specifics but yeah it was about a year before we were able to get my daughter completely off the Miralax.  The GI had her on a dose that kept everything nice and soft for a long while until her body retrained itself and she regained muscle control.  It is quite the balancing act at the beginning though to find the magical dose and she didn't have the complication of IBD.  I feel for you!


----------



## Jmrogers4

Goodness, hope adjusting the miralax works, he deserves a break.  Nothing to add but support and hugs


----------



## Mehita

Have I ever told you guys I love you? The retraining makes sense. The change in dosage makes sense. 

MLP reminded me that it needs to be taken daily too, which we weren't doing consistently. If we knew we weren't going to be near bathrooms cuz we were out having fun, we'd skip the dose that day. I didn't know.

DS is only 4"11, 85 lbs and been doing the full 17 mg of Miralax. Think it's better to underdose and work our way up? Or the other way, and work our way down?

What dose worked for your daughter, crohnsinct? I know everyone is different.

He's been doing the M at 6pm and Aza at 8:30pm. Maybe that's not ideal. We could switch the Aza to the morning.

Thanks for calming me down


----------



## Johnnysmom

I think the M at 6pm and the Aza at 8:30 pm is fine.  I just wouldn't take the glass full of Miralax with the Aza.  That spacing should be fine.

I would try the 1 tablespoon, which is up to the first line on the cap.  If he is soiling, the dose is probably too high.  But, when I had my colonoscopy I had to drink the whole large container so I know it won't hurt him to take too much.  I think the starting and stopping is what causes the most problems.  I only know this because we did it for years before Johnny was diagnosed.  We occasionally miss a day (we never miss 6mp) and it doesn't seem to make a difference but you want to be pretty consistent.  If you see loose stools just lighten up on the dose.  My son would know the next day if he had too much the day before.  

I am sure you will get there!


----------



## my little penguin

As far as dose DS takes 1.5 capfuls at 76 lbs. right now we are lowering that dose I think
..... He had D x4 today so far and its early .

Always a balance.
I will say if there is inflammation in the rectum
Miralax daily will not retrain the bowel .
Btdt for over a year - no difference .


----------



## Mehita

GI nurse said she thinks it may be a flare, mostly because of the BM while sleeping and that we were having the same issue 3 weeks ago before starting Miralax. The BM at night is a red flag in their book. She's checking with the GI to see what he wants to do and will call back. 

My bubble has been popped


----------



## DanceMom

We are in the same boat, yet again.  Stooling accidents....waking to have BMS......

Let me know what your doc says.  I haven't harassed mine yet this week, lol.


----------



## Mehita

He's back on pred   20mg for five days. If the pred fixes things, then we'll know it's a flare. Also dropping to 1/2 a cap of Miralax. 

They seem pretty determined to keep him on Aza as long as possible, which I get. It's just frustrating. If I'm putting these poisons in my baby, is it too much to ask for them to actually work?

Sorry, bit of a pity party going on here.


----------



## Farmwife

Oh:hug: we thrown many a pity parties around here.

I'll bring the cookie dough and some punch. (I found that I have to bring my own beverages because crohnsinct spikes everything else.:stinks

:smile:Well back to the point...When Grace did Pred we were able to stop the Miralax and everything went back to normal, for awhile at least.


----------



## DanceMom

A is on 40 mg and things still aren't great.  What the heck does that mean for her?

And I totally get you on the "poisons" bit.  A is taking 13 pills a day now plus the liquid Bentyl and I don't feel like we're making much progress.  It is frustrating.  I'm still waiting on that magic pill.....


----------



## Johnnysmom

Maybe a little Pred is all he needs to get that inflammation settled and then the Aza can do its magic?

Then you can return to your bubble with the rest of us!!


----------



## crohnsinct

Cookie dough and fruit punch:stinks:...I will bring the chocolate and wine!  Now we are talking pity party!  

Mehita: I was thinking this was all down to flare.  So sorry the road has been so long and hard.  Two steps forward one step back.  The key is to keep on stepping!  

Dancemom: chocolate, wine and hugs for you too!


----------



## crohnsinct

Oh yeah and I will bring my pool float patch kit for the bubble!


----------



## DustyKat

Oh Mehita, I am so sorry to hear this. :ghug: 

Unfortunately for many with Crohn's nocturnal diarrhoea is a sign of flaring.  

I hope more than anything the Pred is able to pull things back into line for your lad, bless him. :heart: 

Dusty. xxx


----------



## kimmidwife

Just wanted to send hugs! And hope if it does end up being a flare you guys get it under control quickly


----------



## Mehita

Thanks for your support everyone. I just wish DS could catch a break. He tries really hard not to let it get him down. It sure would be nice to go more than 3 months without a round of pred though! 

I'm just flat out exhausted having to keep my guard up all the time. Just when I think I can relax and breathe... boom.

We were watching Star Wars the other day. You know the line "The force is strong with this one"? Well, under his breath DS says in the same tone, "Yes, the inflammation is strong with this one." He glanced at me and just burst out laughing. God bless him.


----------



## Crohn's gal since 1989

Mehita said:


> We were watching Star Wars the other day. You know the line "The force is strong with this one"? Well, under his breath DS says in the same tone, "Yes, the inflammation is strong with this one." He glanced at me and just burst out laughing. God bless him.


LOVE IT! Just proves to you how resilient kids are!:hug:


----------



## Niks

:hug: Mehita and Dancemom..  Really hope you get your guys sorted soon .  Hope the pred works for both and quickly!

(((HUGS))) to you both xxx


----------



## Mehita

Argh! Neighborhood block party. Gluten free lemon bars right next to regular ones. Guess which one my Celic boy ate? 

Ever have one of those weeks?

Boom!


----------



## Farmwife

Yup! I'm having one of them now. HUGS


----------



## my little penguin

Welcome
Join the merry go round
They let you on
But you can never ever leave .......( insert evil laugh)


----------



## Mehita

Finished five days of 20mg pred today. It kind of worked...? But not quite well enough. Of course the gluten exposure didn't help. No more nocturnal diarrhea, fewer bathroom trips overall during the day, a couple of semi-formed stools but the lose ones still outnumbered good ones, and still has cramping and decreased appetite. Since he did respond positively to the pred, they're calling this a flare. The nurse, GI and I are all thinking it's his colon that's not happy right now. So...

They bumped him up to 35mg for the next three days to fully knock out the inflammation and then I'm supposed to call with an update early next week and we'll go from there. 

I asked the nurse how many flares before we decide that Aza isn't working for him. She said typically one to two once at therapeutic levels and he's been therapeutic for two months now. She said I shouldn't be surprised if the GI starts talking about Remicade at our next appt on the 20th. I took that as my hint to start researching and putting together my list of 20 questions.

She also said the GI's immediate goal is to get DS in a good place for the start of school (which, unfortunately, means the pred and taper) because the GI knows how important school is to DS. I was happy to hear this! At our last appt the GI had asked DS what is the worst part of Crohn's is and DS said missing school. He obviously listened and made a note of it!


----------



## Dexky

Mehita said:


> The nurse, GI and I are all thinking it's his colon that's not happy right now. So...


I hope he doesn't need a full pred taper and things get sorted quickly!  Just wondering why you all think it's the colon??  When was he last scoped?


----------



## Mehita

Dexky said:


> Just wondering why you all think it's the colon??  When was he last scoped?


He was just scoped in mid-May and out of everything they saw his colon was the area in the worst shape. He hasn't had a formed stool since shortly after his last pred taper in June. The nurse said something about water in the colon and if his colon is inflamed, stools don't form.

It's also the area where he complains of cramping.

Think we're missing something?


----------



## Tesscorm

Glad you're seeing a bit of an improvement.  Hopefully, the higher pred dose will knock out the inflammation!!

And, it is good that the GI has obviously kept in mind that your son doesn't like to miss school, nice that he seems to be remembering the 'whole' person, not just treating the disease.


----------



## CarolinAlaska

Sorry he's flaring again and had to go back on pred.  I hope the new dose settles him back down and you can find a more successful solution...  How long has he been on AZA all together?  I've heard it can take up to 6 months for some to reach therapeutic levels.


----------



## Dexky

Mehita said:


> He was just scoped in mid-May and out of everything they saw his colon was the area in the worst shape.
> 
> Think we're missing something?


With scopes that recent, I'd say they'd have a pretty good handle where the problem is.  Has there been any discussion of budesonide since they believe it's in the colon?  For some like Claire, it does the good of pred w/o the outward side effects.  My son still gets the facial swelling with it but it does have him doing well otherwise.  If they mention a full pred taper, I'd at least bring it up and see what they say.


----------



## Mehita

Carol, he's been on Aza since May 10. Surprisingly, he was at therapeutic levels on June 10, so it's been a good two months since being therapeutic, yet things haven't gotten better. Worse, even. He tested in the intermediate range for TPMT, so I've wondered if that has any impact on how well Aza is (or isn't) working.

Dex, I'll bring up budesonide when I call this week. Thx.

Went to a wedding last night. DS spent most of it in the bathroom. On a positive note, after spending the weekend with him, my family and extended family got a taste of what living with Crohn's is like. I didn't really care for the looks of pity, but I'm glad they saw it firsthand. I'm not making it all up, folks! Really, this is our life!


----------



## Mehita

And now we've got blood in the stools. This is new. Bright red and sort of "attached" to the stool and also on the toilet paper.

We've been doing 1/2 a capful of Miralax every day for two weeks. He's been on 35mg prednisone for two weeks. Things seemed to be improving, but very, very slowly. Tonight he had a massive, though soft and mushy, BM and now he's on the toilet again with more and there is also blood.

I checked his bottom. There is nothing unusual on the outside, so I presume the blood is coming from the inside.

We have an appt on Tuesday and I have no idea what to expect. Up the pred? Up the Aza? Give up on Aza? Overall, things are getting worse.

And if I'm allowed a little mommy moment here... I'm just sick to my stomach about all of this. I'm so frustrated and mad and sad and urgh! The last two years have been a constant battle with this stupid disease with only very brief respites.  A year and a half with that stupid stricture and now these stupid flare ups that just don't stop. I don't think I can do this much longer, which makes me even angrier because I HAVE to keep going. I have to keep the brave mommy face on and it all just sucks. Sucks, sucks, sucks.

Okay, done now *sniff*.


----------



## upsetmom

I'm sorry things are getting worse.

YOU will get through this.:ghug:


----------



## Tesscorm

I'm so sorry you've had such a bumpy road!  You're certainly allowed to have a mommy moment!  :ghug: :ghug:  I know the nurse has suggested that remicade might be suggested but do you think the GI is ready to move onto to something else??  Stephen's never used aza or 6mp so no experience here but, I'm sure I've read that it can take up to as long as 6 months to show results.  Do you think the GI wants to wait longer?

I can only imagine how frustrating it must be when remission just isn't coming  but, hopefully, it is coming soon!!!  My aunt had a terrible time getting into remission when she was diagnosed, I don't know all the details as it was so long ago and in another country but, suffice it to say that she tried lots of treatments and, for a long while, nothing worked.  She was finally put on remicade (was actually one of the first patients on remicade in her country) together with imuran (plus a low dose of steroid).  This put her into remission!  She was taken off remicade after two years and has stayed with imuran and low dose steroid and has been in remission for well over 10+ years!  She travels regularly, eats out, feels good, etc.!!!  Not suggesting her treatment is the right one for your son, just that it did take a couple of years to find what worked for her but, once the right treatment was found, it has worked wonders for many years!

I hope you get some answers and reassuring guidance on Tuesday! :ghug:


----------



## Stephyjane

Just wanted to send my support. :hug:Sorry to hear about symptoms rearing their ugly head. I know it's easy to say but You will get there, it's so hard when it's your child you seeing go through this. But you are doing a fantastic job and need to remember to give yourself a break too. Maybe you could stand at the bottom of the garden and let it all out. 
I would if I wasn't in a built up area in the middle of town :lol:
I hope things settle down real soon and it's just waiting for the Aza to kick in.


----------



## Niks

Sending hugs :ghug:

Really hope your GI has a new plan tomorrow, will be thinking of you xx


----------



## Sascot

So sorry to hear things aren't improving!  At least you can vent on here to your hearts content so he doesn't see it.  Good luck for the appointment, hope they come up with a good plan to make all this better.


----------



## DustyKat

Oh Mehita, I am so very sorry to hear that your lad is still having issues, bless him. :heart: And such a worrying and heartbreaking time for you...:ghug: 

Sending you loads of luck and well wishes for the appointment on Tuesday. :goodluck:

:hang: 

Dusty. xxx


----------



## Jmrogers4

Thinking of you Mehita, sorry things are not improving.  Hope all goes well at tomorrow's appt. and you can get some answers/a plan in place.


----------



## kimmidwife

Thinking of you! Just wanted to send a hug!


----------



## Brian'sMom

Mehita said:


> And if I'm allowed a little mommy moment here... I'm just sick to my stomach about all of this. I'm so frustrated and mad and sad and urgh! The last two years have been a constant battle with this stupid disease with only very brief respites.  A year and a half with that stupid stricture and now these stupid flare ups that just don't stop. I don't think I can do this much longer, which makes me even angrier because I HAVE to keep going. I have to keep the brave mommy face on and it all just sucks. Sucks, sucks, sucks.
> 
> Okay, done now *sniff*.


I hear ya sister!! If it helps at all...we're ALL with you. It does SUUUCK!!!!!

Sending HUGS your way!! I hope things get better soon  And you get some answers and a plan tomorrow.


----------



## Mehita

We went to the GI appt this morning and DS was really tired, a little moody. Typical of late. Laid on the exam table the whole time yawning. We chatted with the GI, discussed all that's been happening, and decided that the Aza isn't working. He's been therapeutic for two months and the GI said it should be working for him by now. We decided to switch to Remicade and the nurse started making the calls to get it all set up. We ran the basic labs plus the extras for starting Remicade (tb, titres, etc). Great, we have a plan. A fresh start.

On the drive home, the GI calls and says that ALL of DS's labs came back normal. ALL of them. Everything. Not even a speck of inflammation. WBC, RBC, neutrophils, everything. Normal. He said because of this, he thinks the bathroom issues are two things. One, IBS and to stick with the Miralax and two, anxiety. DS is anxious in general and he said especially in kids who've had surgery and have cyclical diseases like IBD, whether they know it or not, they get anxious about when the next flare will hit, where the bathrooms are, what new meds are like, and if they'll have to have surgery again. He said it's actually quite common and thinks that's the core of our current issues.

Since Remicade doesn't treat anxiety or lack of inflammation (note the sarcasm here!), the revised plan is to stick with the Aza at the same dosage, start tapering pred, and call child psych.

And I'm thinking that darn boy has me wrapped around his little finger. He says poop and I jump. Am I the only one who does this? I don't mean to belittle his feelings and situation, but I wonder how much I'm contributing to it all? The helicopter needs to land. 

This is where you guys all jump in and say this is what you were thinking all along... she's totally off her rocker.

I'm off to look for an anxiety forum :ybatty:.


----------



## Jmrogers4

Crazier then a long tail cat in a room full of rocking chairs.  but then aren't we all.  I think the same thing, always on pins and needles waiting for the next flare.  Jack has had a few days of "soft" BM's 2-3 a day which is different then his 1 solid every day or so.  So I'm trying NOT to helicopter and sit back and see if it is just school starting (at a new school) and the random little stresses that come with it but it is SO HARD not to keep asking how he is feeling, watching with an eagle eye every morsel that goes into his mouth (appetite is dropping again!).  Can I build my bubble out of concrete so it doesn't Pop?
Glad all labs came back normal!  That is great! and at least it is giving you some kind of answers but one little thing to remember not that I'm saying it is the case.  Things can be going on inside that are not reflected on labs.


----------



## Tesscorm

OMG, that's such a tough to call to make!!! Ugghh!

Did he mention what might have caused the blood in his stool?  And, I'm sorry if this has been brought up and discussed before but, how about fecal calprotectin?  Can you ask to have one more test done just in case inflammation is not showing up in his bloodwork?

I'm a big believer in positive/negative thinking and its impact and do think there may be 'some' value in what the GI said, HOWEVER, I also think this very often is the answer given when nothing immediately shows up (ie in labwork). :ywow:  With or without the FC, for now I would go along with the GI, as the alternative is giving up on a med that 'may' be working, and to rule in or out his theory but I would keep an eye out for things that are symptoms that cannot be 'controlled' by negative/anxious thoughts (ie blood in stool).

As far as that helicopter...  BTDT... still there and doing that! :lol:


----------



## Mehita

Fecal cal has crossed my mind. The GI nurse is supposed to call with a psych referral so I will ask then, just to dot the i's and cross the t's.

I showed him a picture of the BM with blood and he said it was likely from the massive BM that day. Just irritated things.

It's just sinking in now... Labs are NORMAL!!! Woohoo!


----------



## araceli

Mehita. I am very late in this conversation so I don't know the whole story. My son was prescribed miralax for constipation, 1/2 a cup every day, but it gave him loose stools for days and he complained about pain down there and inside. He has internal hemorroids so all the going to bathroom made it worse, he had bright blood once and I believe was from hemorroid. I give him miralax every other day or if he has loose stools I stop miralax until he gets better. It just occurred to me that miralax may be causing the problem for your son. I have plans to take my son to a pain clinic that includes evaluation from a psychologist. Sometimes when he tells me about his pain I wonder if it is real or is just that he is anxious or afraid. So I guess that visit will be good for him and for me. I hope your son gets better soon.


----------



## DanceMom

A's labs were ALWAYS normal prior to starting meds.  Now they are a little wonky but nothing to be outrageously concerned about.  The GI explained it to me like this...."A child can be in a flare and have inflammation that is not reflected in blood work.  If there is blood in the stool - there is a problem.  If the labs look okay then maybe it isn't a huge problem.  But still a problem that needs to be dealt with."

That being said, both of the GIs A has seen lately think she has IBS and IBD.  She is an anxious kid at times, though I think she is learning some coping skills and doing better with that.  Honestly, being vocal about her illness and joking about it with others seems to have relieved a lot of stress and anxiety for her.  But from what I'm told many kids with IBD also have IBS and it can be difficult to differentiate which one is acting up.  In your son's case I hope it truly is the IBS so you don't have to move up the medicine ladder just yet!


----------



## Mehita

Out of the mouth's of babes...

DS just said maybe he's getting hidden gluten from something. While we're pretty strict here since he has Celiac, I suppose it's possible. Time to tear apart the kitchen, I think.


----------



## Farmwife

Is it possible he's getting some when mom isn't watching???
Like when he's out with friends.


----------



## my little penguin

Did his labs usually reflect his inflammation ?

The whole its just Ibs thing gets me


----------



## Mehita

He's pretty scared of gluten (anxiety problem, ya think?!) and he's been a homebody all summer so I'm pretty sure he's not sneaking. Not his personality either.

GI emailed back and said fecal cal isn't going to tell us much. Yes, he likely has calprotectin, but with his improved labs, the info won't be useful. He did ask the lab to run a celiac panel at the last minute. The only thing I can think of that he's eating every day is his Aza pill so I'm going to have the pharmacy call the manufacturer to check ingredients again. The answer is always the same though. There are no gluten ingredients but we can't guarantee anything. Maybe in ten years we'll have a labeling law?!

I cringed at hearing IBS after all I've read here on the Forum, but it also kind of fits too. 

In the past his labs have indicated inflammation, but it's always been just slightly elevated. Nothing that any doc has ever gotten excited about. That's why we've always struggled to get treatment and we're on our third GI. He said fecal cal, Sed, CRP are the only ways we're going to know the difference so if this doesn't work itself out soon, we'll just do regular monitoring. Also mentioned low dose Elavil for IBS?  Confused on that one.


----------



## my little penguin

Elavil works to relieve stomach pain in Ibs. It is also a mild antidepressants .
We tried it for DS a while back . It did nothing.


----------



## DanceMom

Our GI mentioned elavil but we never tried it.  Bentyl does seem to help a bit though.  Maybe you could look into that? A takes it as needed.


----------



## Dexky

I read these last posts and thought they had changed his dx to IBS!!  IBS caused by anxiety over IBD and celiac...hmmm!  So all stress related symptoms of IBD are really just IBS??  Personally, I'd be happy to follow the docs advice here for a bit to see if he can stick with the aza but I never want to change meds.  I hope things settle soon.  Are you going to try the therapist??  Elavil?


----------



## Mehita

I woke up at 2am wondering how the heck am I supposed to tell the difference between IBD symptoms, IBS symptoms and Celiac symptoms? They're all the same.

We're going the child psych route hoping talk therapy will be helpful. Best of luck to the new doctor... moody, male, introverted, anxious teen with a chronic illness. Those will be lively conversations! Not. Hope he's well versed in Star Trek, Clash of Clans and MadTV.


----------



## Tesscorm

:rof:  I can just imagine those conversations!   Maybe they'll hold the apptmts over instagram or twitter!  With a max of 140 charac per post, it must have been designed by a teen boy!!

I think I mentioned it on another thread but, my daughter had lots of anxiety with school, tests, etc.  She finally asked to see a psychiatrist to learn how to deal with it and it truly was the best thing ever (wish I'd done it sooner)!!  She only saw her for a short time but, whatever she said to her, helped tremendously.

But as for challenging patients :redface:...   I had to see a child psychologist when I was quite young...  and, boy, did that poor doctor have a challenge!  I had juvenile osteoporosis at 5-7 years.  Hard to diagnose (especially way back! :lol and very rare so not on the radar at all.  On top of it, my best friend had something wrong with his legs and couldn't walk...  so easy to understand why doctors thought it was 'all in my head' when I said I couldn't walk.  So, nothing on test results = send to a psychiatrist.   By this point, I'd met with LOTS of doctors and was fine with all of them BUT I understood that they were sending me to his doctor only because they didn't believe me and I wasn't happy about that. :ymad:  At that age, few people will really take you seriously (although, credit goes to my mom because she always insisted it 'wasn't just in my head').

So, in I go and throughout EVERY appointment I would ONLY speak Portuguese to him (even though we spoke fluent English at home, school, etc.)! :lol:  My parents would watch through a two-way mirror and my mom said it was so frustrating because eventually I did begin to answer all his questions BUT only in Portuguese!  :devil: I was mad that they didn't believe me and was determined to not make this easy for them!  This poor doctor, I remember he brought out every toy imaginable to try to engage me and I think I do remember 'playing' with him but every response was in Portuguese.  :ybatty:  After a number of apptmts, his final report was that he didn't know what was physically wrong with me but that I knew exactly what I was doing so, in his opinion, it was NOT in my head.   Smart a-s that I was, I probably said "good-bye" in English!


----------



## Mehita

Good Lord, Tess, I hope this psych speaks Klingon!


----------



## Tesscorm

:rof:


----------



## Farmwife

:rof::rof::rof::rof:

........Said good by in English:rof::rof::rof:

Thanks I need to laugh.:hug:


----------



## Tesscorm

Some other time I'll tell you about my hunger strike while I was inpatient. :lol:  _(I feel for my mother now... :yfaint_


----------



## Dexky

Well, I'm gonna ask the obvious question here...

Why do you speak Portuguese??  Brazilian??


----------



## DustyKat

Because she can. Sheesh...você é bobo. :ybiggrin:


----------



## Tesscorm

:rof:  Born in Portugal...


----------



## Dexky

DustyKat said:


> Because she can. Sheesh...você é bobo. :ybiggrin:


....e você é uma vadia!!!, he said with the utmost affection.  I can use google translate too


----------



## DustyKat

:kissgrits:


----------



## Tesscorm

Lmao!!! :rof:


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## Dexky

You mean "beijar meus grãos"


----------



## Mehita

We've been sitting at a gas station in the middle of no where Wisconsin waiting for DS to work out almost 3 days worth of poop. We went camping this weekend and he decided he didn't want to use the campground bathrooms because of spiders, so... he hasn't gone (even with daily Miralax) and here we sit. We are still three hours from home and he's pretty miserable. Tempted to just rent a hotel room for the night


----------



## Mehita

"On the road again. Just can't wait to get on the road again..." - Willie Nelson

We've gone an hour and a half now with no stops. We might make it!

Someone please tell me that your lives are like this too. That you have moments and stories like these.


----------



## DanceMom

Oh, we've been stuck in the grocery store more than once!  Sometimes you have to laugh to keep from crying.


----------



## my little penguin

We got the where to wee app
It rates bathrooms
And find all of them near where you are currently at 
It saved us

For our last big trip
We have learned to just laugh about it 
I tell DS everyone goes that is why there are bathroom there to use.


----------



## Mehita

Soooo... been a month now. DS seems to be holding steady. Almost afraid to say that! Seems like eveytime I report good news it goes down the toilet the next day, KWIM?

He has two more days of 5mg pred and then he's done. Still doing Aza at the same alternating dose and been on it for five months now. Labs look good. Poop is improving. I'm starting to wonder if the gluten exposure in early Aug was really the source of his problems. Saw a child psych in mid-Sept and is going to go in every other week to work on anxiety, poop training, and his fear of pain/medical things. Hoping for a growth spurt once the pred is done. Next appt is in early Nov. It's funny because we never make it to the next appt. Always seem to have issues and need to go in earlier. I should just schedule them at two months instead of three.

Okay, fingers crossed for tomorrow. Knocking on wood, salt over the shoulder, worn out the rabbits foot, and waiting for 11:11pm to make a wish.


----------



## araceli

I hope everything keeps improving.


----------



## Jmrogers4

four leaf clover, horseshoe all the above.  Hoping it lasts a looooooong time!


----------



## Mehita

For the life of me I can't figure out how to post photos within a thread, but...

If you go to my profile page and look in the albums, I posted a before and after photo of DS. I was sorting through old photos this morning and came across these two and was just shocked. Since we see our kids every day, I think we don't always see the changes in them.

The before is from January when he had his resection (and he's only smiling because he had a therapy dog in his lap!) and the after is from August and three months into azathioprine.

Amazing.


----------



## Jmrogers4

Wow! He looks amazing.  I think sometimes we focus so much on the what next, what's happening now it is hard to see.
Handsome young man!


----------



## DanceMom

Oh my goodness!  His face has filled out and he looks so much older!  Yay for medicine that works!!


----------



## Sascot

What a difference! Looking good


----------



## Niks

He really does look amazing.  Gorgeous looking boy   xx


----------



## Clash

Such a big difference and what a handsome guy!!


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## Tesscorm

Ditto!! What a good looking boy!   And, wow, what a difference!


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## Brian'sMom

I can't see it for some reason. Only album is the xray. I want to see the before and after!


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## Mehita

I just added you as a "Contact & Friend", Brian'sMom. You should be able to see it now.


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## Johnnysmom

He is very handsome!!  And he looks great, the difference is amazing.


----------



## Brian'sMom

Wow!! He looks great!! It is quite a difference in a short time, amazing. And for those of us giving our babies medicine or surgeries...it is proof that they need it. Comforting to me as another helpless mom to crohns.
 *I love his smile* Admirable!


----------



## DustyKat

Wow Mehita! He looks fab! How very happy and proud you must be of your handsome young man!  

Dusty. :heart:


----------



## Mehita

Blood with his BM tonight. Nausea, cramping, and as mentioned in another thread, odd rash on his forehead that's about two weeks old. Has had some solid BM's this month, but now it's back to mush. I should probably check for mouth ulcers. Regular labs due on Nov 4th. 

Recap:
- started Aza in May
- therapeutic levels reached in June
- inflammation markers literally been up and down with each draw
- pred in Aug to knock down elevated July markers
- added IBS to the list in Aug
- finished pred two weeks ago

I do think the Aza has helped. Just hasn't helped enough. Frustrating.

Can't he just be a regular, healthy kid for more than two months at a time?


----------



## Brian'sMom

Mehita, So sorry to hear! I know your feeling- with the Inflammation markers up and down... Has your GI talked about what's next after Aza? Its so frustrating when crohns won't let go. Some kids get on a med...and smooth sailing (well, as smooth as it can be)


----------



## Mehita

At the visit in Aug, DS wasn't feeling great and we started all the prelim tests for Remicade, but then his labs all came back normal. His GI put the brakes on and sent us to child psych for anxiety. 

If his labs come back elevated again in Nov, he'll be switched to Remicade. Slight chance we could up the Aza instead, but GI is very nervous about that since DS is an intermediate phenotype. I'm kicking myself for not just going straight to Remicade after his resection. 

The other thing in the back of my mind... the boy simply doesn't poop well. He goes 2-3 times a day and poops for 30-60 min each time. And he really is pooping that whole time. It's very slow to come out, all mush, and usually a LOT. He's so little and skinny I seriously wonder where it comes from. If there is a day that he doesn't poop, it really exacerbates the problem. We did Miralax for 10 weeks, playing with doses, etc, but it didn't change anything besides add urgency.

Is there a medical condition for too much poop?? It's the massive BM's that bring the blood. 

And the rash on his forehead is grossing me out. It looks like heat rash, but when you touch it the skin is hard, crispy and flaky. Yuck. We've been using the same lotion that my other son uses for eczema and it seems to be helping a little, but I still want to know what it is and what caused it. Just reread this paragraph... I can do poop and vomit, but bring on scaly skin and I'm running the other way. *LOL* 

I haven't called the GI yet. Our IBD nurse is on maternity leave so I'm trying to only call when things are really, really urgent because I know they're overwhelmed right now. We can wait for the appt.


----------



## Mehita

I finally called the nurse. Waiting for a call back. I think he might have an abscess and/or fistula to boot as well.


----------



## Jmrogers4

Geez! Mehita hope he gets some relief soon and the nurse calls back quickly.  I absolutely despise waiting for the call back don't they know we are sitting on pins and needles just waiting for them.


----------



## Clash

Hope you get some answers quickly!


----------



## Mehita

Well, not sure what to think... GI thinks it's either an abscess, c diff, or just a lymph node/nodule kind of thing that will go away. I really don't think it's c diff. No fever, no D. The pus coming out his bottom is what's concerning. Yuck. Start Flagyl sometime after his next BM and go back in 10 days.

Frustrating.

And do you know how hard it is to find an open laboratory on the weekend? Sheesh. This is a large metro area. You'd think something would be open, but noooooo, need to go all the way to the hospital. And then they asked me to make an appt to drop off the c diff sample. Seriously? I don't know when he's going to poop next! 

Sorry, just a bit crabby... and did I mention frustrated?

On the positive side, he's gained 5 pounds in two months. Height has plateaued though and we'll be "monitoring" that. He's been 4'10" since February. GI said it could be due to all the pred. Hate pred.


----------



## Mehita

C diff came back negative, no surprise there. 

Hepatic panel and CBC all normal.

CRP is back up to 24, normal is 0-8.

Abscess is getting worse. Hoping Flagyl kicks in soon. 

Not happy


----------



## Clash

I hope the Flagyl kicks in soon! Hugs and support.


----------



## Tesscorm

Gosh, I'm so sorry he doesn't seem to get a long break from this!!! :ymad:  I hope the flagyl works quickly too!! :ghug:


----------



## my little penguin

Hugs --hope things improve


----------



## Mehita

Would it be totally crazy to just tell the GI enough is enough, let's just move on to Remicde?  I'm supposed to call him with an update.

I know we could play around with Aza levels, but 1) even the GI is hesitant to do this with DS's intermediate phenotype and 2) we are so desperate for some long term relief. The only two things that have truly given relief have been the resection surgery and prednisone. 

It's been six months on Aza, supposedly therapeutic for five of those months. Two flares, two rounds of pred, an abscess and possibly a fistula. Time to burn the bridge? Yes? No?


----------



## Catherine

I don't know, took Sarah's 21 months to get into range on AZA.  Three round of pred and an a bowel to bowel fistula.

It is also much harder to qualify for Remicade in Australia.


----------



## Jmrogers4

I don't know Mehita, What is your gut telling you? He deserves some relief and it doesn't seem like aza is quite getting the job done.  Sending you a load of Hugs!


----------



## my little penguin

Not totally crazy 
We changed DS for less .

He couldn't get off pred after we switch to Mtx due to vasculitis .
But for us it easier since Rheumo really wanted him on remicade due to the recurring vasculitis .
Similar issues with 6-mp for 8 months.
Loved remicade ( except for the recurring strep and skin rashes )
I can say DS most recent scope after remicade and humira was entirely normal 
Every where on a macro and micro level only mild duodenitis after two years of always seeing damage somewhere
I credit remicade /humira with that healing .


What does your Gi have to say ?
I think that is key


----------



## kimmidwife

Sending hugs your way! Not sure what to say but it rounds like might be time to look at something else such as remicade.


----------



## Mehita

My gut is and always has been with Remicade. My brain said we needed to try Aza so we won't question ourselves later for skipping it. My heart says it can't take much more.

Can the abscess be causing the elevated CRP? I really, really really don't want to put him on steroids again. Tried EN back in the stricture days and it didn't go so well, so not sure that's an option. 

Sigh.


----------



## Tesscorm

It's so hard changing treatments.   does his GI want to move ahead to remi?  Or does he feel aza needs more time?  

I don't know for certain but I think an abscess cud affect crp??  I've been told even a cold can affect crp so I wud imagine an abscess cud impact it as well.

:ghug:


----------



## Brian'sMom

We did 6 mos of aza...numbers kept going up. Ended up with abcsess. (And few other illnesses) Moved on the Remi (had reaction) and then Humira. It was only thing that gave relief for us too. 2 yrs 9 mos later...we're off to Mayo today. Even tho it looks like Cimzia isn't doing it either...he's better off than he was way back then when he was on aza. (At least that's how it seems to Brian and me and his Dad)


----------



## crohnsinct

Oh Mehita I am so sorry for all you both are dealing with.  Since the doc's first suggestion was Remicade, and that is what they are thinking now, I think I would wave the white flag.  So many (O included) have such success on Remicade and it is supposedly very effective for peri annal disease (if that is what is going on).  If you abandon Aza now, it is nor lost forever (like the biologics).  I think I would give Remicade a try but I know how hard this decision must be after investing so much time and effort into Aza.  :ghug:


----------



## araceli

Hi Mehita. I am sorry things are not good. My daugther was put on remicade due to perianal problems. So far so good. Hard decision but unfortunately we are the ones who have to make the final decision.  I hope everything gets better soon.


----------



## Mehita

Another long, sleepless night last night. The pus from his bottom kept him awake. Drainage, nausea and stomach aches today. He didn't go to school. While drainage is good, it sure is annoying. Any tips? Adding Cipro tonight. Not sure I understand why. Anyone?

We have an MRE scheduled for tomorrow. Going to be looking for the abscess, possibly a fistula, check out his anastomosis, and try to figure out what's causing his inflammation markers to be elevated. 

GI thinks either the abscess is just causing havoc or he is flaring (again). He said there are several things on his labs that are in the normal range but are trending in the wrong direction. Ablumin, alkaline phos, etc, so this might well be a flare, though early. Then he mentioned the dreaded P word, so I brought up Remicade. 

His thioprine labs are still pending and that will be a big factor on what to do next. This is where it all the "if"s come in. If his thioprine levels come back ok and there is only an abscess, then he wants to stick with Aza and play with dosages. If his thioprine levels come back as refractory, then we'll move to Remicade. If the MRE indicates a flare up, along with the abscess and especially if there is fistulizing plus his previous history of stricturing, then Remicade is a better option, but we could stick with Aza (no brainer there, no thanks!). GI is understandably concerned about burning through the meds too fast. Me too!

I also asked if DS is becoming pred dependent since it's only been two weeks since he got off of it. After a long pause... yes, it's very possible. Great.

I think my head might burst any second now. Ever feel like that?


----------



## DanceMom

We always seem to be in similar situations and they are rarely good ones. We are exploring treatment options as well and currently A is only on Pentasa. It definitely isn't enough!  Remicade seems so scary but our kids just can't keep going on like this! Have you sought a second opinion regarding medications?


----------



## Tesscorm

What a lot you have to think (and worry) about. :ghug:

Just something to keep in mind, my aunt used both imuran and remicade to induce remission.  She also uses a very lose dose of a type of steroid (not pred nor entocort though).  She was one of the very early patients on remicade so, perhaps, they were not aware of the antibody concerns but, after two years on both meds, she was taken off remicade (not because of any problems, just GI didn't think she needed it).  She had a really tough time getting into remission (her crohns involves her rectum and large colon... maybe small as well??), it took a good two years or more.  But, the imuran/remicade combo did get her into remission and even after dropping remi, she has stayed in remission - and it's been around 15 years now.  While she does watch her diet, for the most part, she lives a normal crohns-free life - she eats out, she travels, etc.  So, my point is that leaving the aza behind right now, does not mean that it'll never be an option again...  you may just need to get him into a solid remission, once there for a while, then perhaps maintaining that status quo will be easier. :ghug:

I've never read that EN can help with fistulas, etc., however, perhaps if he is beginning to flare, it may help stop that...  is there no way he would consider EEN???  Or EN as a supplement.  I recently reposted an article showing that EN can increase remicade's success rate by a decent amount (posted it in the kids articles forum).

I know it's very easy to say but try to take it one step at a time now...  it's so emotionally hard to deal with when you aren't even sure what you're fighting. :ghug: :ghug:


----------



## Mehita

Major download ahead... horrible, awful, terrible day.

DS was determined to drink the contrast for the MRE today and convinced me to let him try. He absolutely HATES NG tubes so he was pretty motivated. His NG tube experience has been... less than ideal. He needed 800 cc and only managed 400 before hitting the wall. He was hysterical for the NG. Crying. Screaming. They had a really hard time getting it in place. I was watching the x-ray thingy and it just wasn't working. Even the dr was getting frustrated. Twenty minutes later it was "good enough" and they pumped in the 800cc. Yup, full dose because all the stuff he drank had expired or whatever it is barium does. During this whole thing he threw up at least four times. His shirt was soaked and I didn't think to bring any other clothes. The chills kicked in and he couldn't stop shaking even with all the warm blankets.

After getting pumped full, he could hardly move. He was in the zone. No communication with planet earth. Totally checked out. They had to wheelchair him the the MRE. He did well until the glucagon. More vomiting. So much so they were concerned he might not have enough left. I've never prayed so hard in my life. Then he had to use the bathroom for diarrhea. There went another five gallons. All the while we also needed to take breaks to wipe the drainage from his bottom.

We were at the hospital for five hours. He left covered in vomit, dehydrated, nauseous, and a thousand times more miserable than when we got there. I seriously thought about having him admitted. And my little guy came home to an empty house. I thought we'd be home by then and didn't arrange for a babysitter.

Home now and he's a mess. Totally nauseous, wiped out. I'm trying to get him to drink to flush out some of the crap, but he can't even tolerate water.

I kept my brave mom face on all day, but I'm about to burst. The Hubster won't be home for another hour. Hate, hate, hate this stupid disease. To top it off, the MRE is only going to bring bad news. 

Okay, done downloading


----------



## Tesscorm

Oh Mehita, I really am so sorry the two of you had such a horrible day.   It so unfair what these kids have to go through and what we have to watch them struggle with. :ghug: :ghug: Praying the nausea goes away soon and he has an easy night. :ghug: :ghug:


----------



## DanceMom

Our MRE experience was similar, minus the NG tube. A always vomits with that stuff.  Poor girl puked, peed, and pooped herself in the machine. I forgot a change of clothes as well. Our kids are tough though. Tougher than we are most times.  Hope your boy feels better soon!


----------



## Mehita

Surprisingly, I just got a call from the GI. I'm really starting to like this guy. He said he heard DS had a tough day... um, yeah.

MRE showed extensive inflammation in the small intestine, at the ileum, and at his anastomosis site. And get this... no abscess! He didn't have all the slides but the radiologist told him he didn't see an abscess. Tomorrow they are going to get together and poor over the slides. 

So what's with all the drainage? Possibly rectal inflammation or some sort of infection that we haven't tested for yet. More stool samples tomorrow and one more c diff test just to be sure. 

He gave three treatment options. 1) wait on Aza tests, then pred and Aza 2) pred and methotrexate or 3) Remicade and no pred. I said I know what my gut is telling me, but I want to hear what yours is saying first. He hemmed and hawed about mtx, but then ultimately said Remicade.

First Remicade infusion is this Friday. Is it totally wrong to be... happy... right now?


----------



## my little penguin

Woo hoo!!!
So glad you guys have a plan forward
And no it's not wrong to want your child to have a little peace and happiness with this disease .
I hope remicade works quickly and for a very long time for your child .
DS cheers anytime I tell him someone is starting remicade.
His words " they are really going to like it"

Good luck


----------



## Maya142

Only an IBD mom could be happy! My daughter also loves Remicade. She's flaring right now (a virus and then a sinus infection) but she still says all the time "Mom, I LOVE Remicade!" She's a different kid on it!
Your poor boy deserves some relief, I hope Remicade is your miracle drug!


----------



## Sascot

So sorry your poor boy is having such a hard time! Really hope the Remicade works quickly for him.


----------



## kimmidwife

Mehita,
Sorry he had such a rough time, so glad you guys have a plan. Will keep my fingers triple crossed that the remicade works for him !


----------



## momoftwinboys

Wishing your DS success with Remicade on Friday.  H has been on it a year now. Knock wood, he has felt great since the day after the first infusion.  He is living life well. He just got his black belt.  He did swim team this summer. He ran cross country this fall for school, He put on 30+ pounds and started growing again.:dusty:
I felt awful for what your young man had to endure this weekfor his tests. :ghug: Really hope the Remicade makes it all worth it. Hoping a year from now he feels great and is recounting what a great year it has been enjoying life as a teen.:goodluck:


----------



## crohnsinct

Oh Mehita!  I have tears in my eyes reading this.  

Are you crazy for being happy that there is some promise that your son might get relief? NO WAY!  

We are Remi lovers here as well.  I can not believe my daughter is the same kid I brought to the hospital almost two years ago.  

I am SO hoping that this is exactly what he needs. 

I hope you are able to get some rest and take care of yourself also. 

Welcome to the IV league!


----------



## Niks

Poor lad with his MRE experience , but at least you have got some answers and hopefully solutions from it!

It is such a relief to have answers!  Definitely should be happy!!  :dance:

:ghug::ghug:


----------



## Jmrogers4

I hope this is his magic medicine that puts him into remission and he has many decades symptom free


----------



## Mehita

...and we've been admitted and are here for the weekend. I knew I should have packed a toothbrush!

I was right.

We were supposed to be here for DS's first Remicade treatment. The infusion centers were full so they admitted him to a room "under observation". The GI finally came around wondering why we hadn't started yet and it was because we were waiting for him to check out DS's lump on his bottom. So he checks, his eyes pop out and says it's an abscess. A big abscess. Great. Now we're waiting to go down to ultrasound to see if it's an abscess for sure, if it's filled with anything (I'll take a gander here and say PUS!), or if maybe we lucked out and it's just inflamed tissue under the skin. Either way, it postpones Remicade.

After the ultrasound they're starting IV Zosyn and Vancomycin and keeping him overnight.

Surgery is going to stop by also and, based on the ultrasound, determine if he needs it drained. Not exactly what we had planned for our weekend, but we'll just go with it.

Supposedly, he's still getting Remicade soon. Maybe not until 3am at the rate we're going, but still getting it.

My dear, dear DS said in front of three doctors and two nurses, "You nailed it, Mom." Love this kid.


----------



## Jmrogers4

Things sure can change quickly around here.  Hubby has had a couple of those, turns out I'm a pretty good nurse and the surgeon complimented me on my "packing" the abscess after surgery.  Lucky (knock on wood, etc.) that we have not had that with Jack.
Hope it all gets taken care of quickly and he gets relief.


----------



## Mehita

Confirmed abscess and fistula draining thru rectum. Surgery said as long as it's draining, they're happy. GI disagrees and says it's not draining fast enough. The battle of the egos. GI hinted that we might be here for 7 days for the antibiotic treatment. Fun.

Bad reaction to Vanco. Stopped that and switched to Clindomycin. Still no Remicade.

How did we go from a Remi appt to a seven day stay? My head is spinning.


----------



## Farmwife

I have to sit down because my head is spinning.

Poor kid. I saw your other thread so is home IV still an option??


----------



## Maya142

Your poor boy just can't get a break! 
You both will be in my thoughts. Hope the GI and surgeon can agree and you guys get to g home soon!


----------



## ronroush7

The cold may have started a flare but I don't know.  Wishing you the best.

 2


----------



## Mehita

They're testing him for sepsis!!!


----------



## Tesscorm

OMG, Mehita, I can't believe how quickly things have changed!!!  I am glad that they've admitted him and that they certainly seem to be on top of all possible problems!  But I'm sure your head is spinning...  I'm so sorry you both have ended up at this point.   

I hope he's feeling alright though...  he seems to be such a trooper (and I love his comment about you!!)!  Use his strength!  I know when I was in the hospital with Stephen, it was seeing him deal with it all so calmly that very often gave me the strength I needed!  :ghug:


----------



## ronroush7

I tend to freak out sometimes.


----------



## my little penguin

Hugs
He is in the right place so they can see what is really going on.
Hope things calm down quickly


----------



## ronroush7

My prayers will be with you.

 2


----------



## Sascot

Wow, how stressful. At least something is getting done. Hope the antibiotics start to help soon.  I agree with your GI, when Andrew had his abscess they left him far too long on oral antibiotics that were doing nothing, ended up having a lot of tissue removed. Best to have surgery to drain it earlier, although IV antibiotics will probably help a lot more than by mouth.


----------



## DustyKat

Good grief Mehita! :ghug::ghug::ghug: 

I was so relieved that Remicade was the final decision. From reading your posts my feeling was there had been enough water under the bridge with Aza and it was time to move on, also the dependence on Pred needed to stopped if possible. 

The problem with Aza and Pred is they can also mask symptoms of infection and therefore the situation for some can be quite serious before anyone realises. This certainly was the case for Matt. 

Once they get the infection under control then they will be able to move with the Remi. Biologics are generally contraindicated when there is a severe infection present and abscesses normally fall into the category of severe infection. My general rule of thumb when it comes to surgeon versus GI is that surgeons are very good at what they do, cut and close, but they are not in the habit of treating chronic conditions. I know this isn't always the case but I would tend to listen to the GI regarding ongoing treatment of the Crohn's. 

I so hope your lad is starting to improve Mehita, bless him. Sending tons of luck and well wishes your way. :heart: 

:hang: Mum, you are doing fab! 

Dusty. xxx


----------



## Mehita

Blood cultures for sepsis are coming back negative. What a scare!

Still on IV abx. Will decide Mon morning if they're taking care of the abscess. If yes, then they send us home with a PICC line and we do abx at home. If no, then surgery and we stay here awhile longer. I was ready to go home yesterday. Possibly keep us here all week just for abx too, especially if they try Vanco again.

It's amazing what a couple bags of fluids will do for a boy. He's back to his normal self aside from minor pain with the abscess. Tylenol helps with that.

GI has already scheduled his next Remicade appt and we're looking forward to it.

What a week. I'm tired.

Thanks for all your comments and support. It really means a lot!


----------



## DustyKat

Phew! Thank goodness he isn't septic and it so good to hear that he is picking up.  

I hope things continue to settle for him Mehita and he will be allowed home. Good luck! 

Dusty. xxx


----------



## momoftwinboys

So happy to hear he is feeling better and sepsis not an issue.  Was thinking of you guys all day yesterday.


----------



## Mehita

Why must everything be such an adventure??? DS got his PICC placed yesterday and we were all ready to go home. Discharge papers in hand, bags packed, ready, set...LOCKDOWN.

The nurse said there was a crazy guy in the lobby with a knife yelling and screaming. Said it happens all the time and offered us apple juice. We probably should have been scared or something. Instead we took our apple juices and turned cartoons back on.

Eventually we did get home and met with the home services nurse. I got trained in on how to administer the abx and so far it's going well. Next Remicade infusion is the 15th.

I'd like some plain, boring, nothingness now, thankyouverymuch.


----------



## Clash

As shellshocked as you are "there is a threatening, knife wielding man in the lobby right now, would you like some apple juice?" probably didn't phase you! I on the hand just had coffee come out my nose when I read that phrase!

So glad to hear y'all are home! Hoping for some plain, boring nothingness for a long time for you!


----------



## Jmrogers4

Me too Clash, 
Oh crazy man, we'll just have apple juice and watch Spongebob :eek2: 
Glad you are home.  Fingers crossed for the 15th and Remi.

(I've decided I'm done with 2013!  Bring on 2014 and some healthy kids!)


----------



## yellowamc

Ya that's pretty high, bein new here im a bit reserved on what to say. I do know I can say I tested out once with a crp of 76 so yes that is high. I have been on and off both 6mp and remicade. And I can say im sry someone so young is going thru that ive been there.


----------



## Jenn

Went through the same thing with my son a few years ago, the abx with PICC line healed the fistula/abscess and Remicade kept it away. Best of luck for a quick recovery!


----------



## araceli

Mehita, When it rains it pours, On top of everything you guys are going thru, you have to worry about a crazy man. I hope that remicade works well and gives you a break.


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## Johnnysmom

Well, now I know the appropriate response to the awkward social situation of a knife wielding crazy man.... offer apple juice.  Makes perfect sense!

Hoping you get a long stretch of plain, boring, nothingness!!  

Fingers crossed for the Remi on the 15th.

((((hugs))))))


----------



## kimmidwife

Mehita,
Have been away for a few days just got back. Sorry to hear about the craziness! Sending healing prayers!!!!


----------



## Niks

Plain boring nothingness sounds amazing!  Everything crossed for that.

Really hope everything settles down now :ghug:  xxx


----------



## Mehita

Jenn - How long was your son on the abx? How did you know the abscess was gone? I think in another thread you mentioned 6 weeks?


----------



## ronroush7

Jmrogers4 said:


> Me too Clash,
> Oh crazy man, we'll just have apple juice and watch Spongebob :eek2:
> Glad you are home.  Fingers crossed for the 15th and Remi.
> 
> (I've decided I'm done with 2013!  Bring on 2014 and some healthy kids!)


Amen

 2


----------



## Jenn

Yeah, sorry, split the threads! He was on them 6 weeks, he had a followup MRI to determine the fistula was closed internally, was smaller externally within a few days. Hasn't had another so far, since starting biologics.


----------



## Brian'sMom

Mehita!!! I caught up on your thread from last few days of October to now. OH MY GOODNESS!! You and your son have been thru so much!!!! I'm so sorry. This awful awful crohns!!!


----------



## yellowamc

Mehita said:


> Waiting until summer was because his GI said he doesn't like to go in too soon and poke around in case things haven't completely healed yet, so he typically waits 6 months before scoping and imaging.


that is true my doc did the same thing after my resection. Has he had his crp ckd recently that's a pretty simplem one to do and see if inflammation is up


----------



## Mehita

Day 14 of IV antibiotics.
GI visit this AM.
Second Remicade infusion this PM.
PICC out today??
Fingers, toes, and elbows crossed, please!

Not sure why I'm a nervous mess right now. I'm packing a toothbrush today. If I see any doctor, nurse, or staff person with a first, middle or last name of Murphy, I'm not responsible for my actions.


----------



## my little penguin

Breathe


----------



## Farmwife

.............................in deep and exhale.

hugs


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## crohnsinct

:rof::rof: I can see it now...Hospital on lock down due to a toothbrush wielding crazy crohns mom:rof::rof:  You better get the ball vice from Mary...much more effective. 

Good Luck!


----------



## Mehita

:rof::rof::rof: Oh, goodness!

Mostly good things today. The abscess is still there but has shrunk from prune sized to pebble sized. The GI wants it gone though, but knows the IV abx schedule is brutal, so we're switching to oral Augmenten for 14 days and stopping the IV abx. If oral abx doesn't finish it off, then it's back to IV abx. Confused yet? We're keeping the PICC for another week, just in case. That was DS's choice. I'm going to go out on a limb here and say PICC lines and volleyball are a bad mix, so no gym class for awhile still.

Also tapering to 25mg of Azathioprine every other day this week and then dropping it.

One hour left on his Remicade infusion. Very uneventful, thank goodness.  Any wagers on how many more levels of Candy Crush I can get through before he's done? 

Turns out this is an adult cancer care center and not the ideal situation for kids. Next time we're going to the children's hospital instead. A little too... depressing... here. Just want to walk around and hug everyone. They don't get many kids here so they sure are enjoying him!


----------



## Jmrogers4

Glad it is shrinking, hope the oral stuff finishes it off.
Hope the Remi brings more fabulous results...


----------



## Brian'sMom

Mehita, It sounds good. I hope Remicade is just what he needs. Sounds good so far!!


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## Mehita

I think that was the most uneventful GI appt we've had in years!

The abscess is pretty much gone. DS says he can still feel it, but it's tiny. The GI couldn't feel it at all and was quite happy. We need to finish off the last week of Augmenten and then he's done. Stopped Azathioprine over the weekend. PICC line came out today. CRP has been in the normal range for the last three weeks. Still a touch of anemia, but GI said it's not due to lack of iron. More likely a residual from the inflammation earlier this month. Got approved for Remistart and 3rd dose of Remicade is December 13th.

I actually feel... calm. Even a little hopeful. It's nice!


----------



## Tesscorm

That's so great that all is going well!!!  I hope the remicade keeps the good news and calmness all around for a long, long time!


----------



## Brian'sMom

That's FANTASTIC news!! So happy to hear  YAY Remicade  It's a miracle medicine for so many


----------



## my little penguin

Woo hoo
Now soon around three times and spit somewhere 
Enjoy!!!!


----------



## Maya142

Great to hear! So glad things are calming down!


----------



## greypup

I've seen this thread for awhile and just now sat down to read it all.  It sounds like our kids have had some very similar experiences starting w/strictures, resection, Imuran and now constipation for us.  

We're heading to your neck of the woods in two weeks for a consultation w/Mayo.

LMK if you want to meet up!


----------



## Clash

Uneventful sounds great!! Glad to hear it!!


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## Sascot

Good news!


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## ronroush7

That's great news.


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## Mehita

"Mom, I decided that starting today I'm going to be in remission forever."

Ok, then. Sounds good to me.


----------



## Mehita

We're at the hospital for infusion #3. The nurse said that #3 and 4 are when reactions tend to happen, if they happen. I didn't know that. Good thing they're not checking MY pulse and blood pressure right now. DS said his radio alarm woke him up this morning with the song, "Best Day of Your Life" so I should stop worrying. Apparently, it was a sign. 

They are much more attentive at the children's hospital here than the adult cancer center from last time. The nurse comes in every 15 minutes and they take vitals every time. Last time, we pretty much sat in a room by ourselves for four hours. Definitely coming here for all future visits! And they just stopped by to see if we wanted slushies. Nice. 

And there was this sweet woman in the waiting room who's older teen son has cancer and was handing out handmade ornaments to all the kids. It made me count my blessings.

Couple of questions...

We had labs run when we got here and all is good except liver numbers. AST is 53 (0-35) and ALT is 55 (0-50). Both were in the 30's a month ago. The only other thing that caught my attention was Alka Phos jumped up significantly from 170 a month ago to 332 today (130-530). The Alka Phos can just be indicating a pending growth spurt, right? What about the liver numbers? Same thing?

CRP continues to be normal. Woohoo! That's like a record for us!

So, thoughts on labs?


----------



## kimmidwife

I just googled it and I don't want to alarm you but you definitely need to discuss that with the doctor. All three of those lab studies elevating can mean the remicade is adversely affecting the liver. Here is the link:

http://livertox.nih.gov/Infliximab.htm

Remember though I am not a doctor so you need to discuss this with your doctor.


----------



## DanceMom

Those liver numbers are still okay (according to our GI). A's AST was 41 (12-32) and her ALT was 38 (8-24) with only Pentasa.  He thought those numbers were fine although I would have preferred to have them within the normal limits set by the lab.  He said they don't start to worry until they become double the normal limits and even then they just monitor more closely.  We had to stop 6-mp when A's AST was 92 and her ALT was 327 (just for a comparison).


----------



## Tesscorm

Stephen also had ALT and AST steadily climb over a couple of months (ALT from 56 to 100 and AST from 38 to 62) for no reason (no remicade at that time).  Asked the GI and he wasn't concerned, said they would just watch it.  They then just gradually decreased again over a few months, to lower than they'd ever been...  with no changes at all (to meds, diet, etc.).  I wouldn't worry overly right now, just keep an eye on it.


----------



## Sascot

Glad things are going well.


----------



## DustyKat

We haven’t done Remicade here but the ALT and AST numbers aren’t too bad so it would be something that I would trend tracking at this point in time. They may well be a one off glitch. As far as I am aware they are not sensitive to growth. 

Alk Phos on the other hand is definitely something that responds to growth spurts in children and puberty in adolescents and often normal reference ranges are increased in paediatrics to reflect this. Both Matt and Sarah had significantly increased levels in the months following surgically induced remission. 

Sending loads of luck and well wishes for continued success! 

Dusty. xxx


----------



## Brian'sMom

So glad you are doing so well on Remicade. Our GI's have always said that is the best biologic. We had the reaction on the third time. But we kinda had signs. After the 2nd infusion ds wasn't feeling as great as after the first. The cramps were coming back. So I think it was already showing signs "his" body didn't like Remicade. This is all just a guess of course...but it seems like when the drug is fixing things and you're feeling great then the reaction thing doesn't happen. Just a thought of mine  Hugs and best wishes for some peace and long lived happiness on Remicade


----------



## Mehita

I still haven't heard back from his GI, but I'm guessing we're just on the wait and see plan. He goes back in a month and I'm sure we'll just re-test then.

I should mention that in October when he wasn't feeling well and was admitted, he lost five pounds. Since then (roughly 6 weeks now) he's gained those five pounds back and added one extra. He's also grown about 1/4" in that same time period. I think that explains the alkaline phosphatase. Hoping, the liver #'s are just a fluke. The last time they were elevated it was in a similar situation, just shortly after his resection when he was feeling great. Everything normalized a couple weeks later.

I never ended up calling the endocrinologist since we noticed he was gaining and stretching. We'll see what the GI says next month.

We are so desperate for Remicade to work. I'm sure you all know the feeling! Thank you for all the feedback.


----------



## Mehita

Hmmm... nothing alarming, but we are six and a half weeks since the last Remicade infusion and the poop is a changin'. Starting to get mushy again. He says he feels fine. No stomach aches, appetite is the same, still 1-2 BM's a day. Could be anything, right? 

Do I just wait and see how the week goes? What would warrant bumping up infusions? Would his GI make him wait it out? This is his first on the eight week schedule. 

We're on high alert after the strep throat exposure this weekend, but so far everyone is doing fine, I think? Little brother has a slightly pink eye that I'm watching, but otherwise everyone seems to be fairly well.

Nine more days... fingers crossed!


----------



## Jmrogers4

Fingers crossed.  Hope it's nothing.  Jack has pretty much 1 BM a day and he had 2 on Sunday and completely freaked himself out thinking the remicade wasn't working.  Made him think about everything he ate on Saturday (a bunch of junk it turns out).  Been fine since then I think it was a little bit of a wake up call though that if you just eat crap it comes out pretty much the same way.


----------



## Maya142

That happened to M and her GI did a Remicade levels and antibody test at the next infusion. I can't remember exactly but I think her levels must have been low because we moved to a 5 week infusion schedule after that.


----------



## Mehita

Does the test have a specific name? Just antibodies test? Did you get results back that day or does it need to go out?

And she went from eight weeks to five?


----------



## crohnsinct

O never made it to 8 not even right after the loading doses.  Few kids do.  They metabolize Remicade and some faster than others so it isn't that the Remi isn't working it is that there isn't any left in their body.  

I would watch over the next day or so and if things keep sliding give a call and they will probably slip you in for an infusion and change the interval.  

The levels test is very expensive ($2,500) and many insurance companies won't cover it.  They used to as O was getting levels pulled frequently.  It takes a few days to a week to get back.  They want docs to treat based on symptoms and blood results. I know, I know...just plain stupid because in some cases it could be Remi not working at all and you spend months fiddling around with schedule when all along there were adequate levels and the drug just doesn't work.


----------



## SupportiveMom

Cinct when did you get the test? We had it last May and the price had just dropped to $250 (was $750). Not covered by insurance either. I'm on the east side of canada and they still ship the test to california.


----------



## Tesscorm

Mehita, S was tested for remicade levels and antibodies the day before his first 8 week infusion and they found no remicade in his system (nor any antibodies).  He was then moved to a six week cycle and they tested again, this time there were adequate levels of remicade (and, again, no antibodies).  Test is sent to Prometheus labs and it takes a few days (week or so??) to get results back.

I have always heard the test is very expensive - my friend has paid twice for her daughter - once it was $250, next time approx $2,000.  Neither time insurance covered it (and can't remember what the reason was for the increase in cost).  I have not paid for Stephen but I believe that it may be because he is enrolled in a remicade study???


----------



## Maya142

Mehita- M was never had infusion at 8 weeks, what I meant was she started having symptoms around week 5 after her loading doses and her GI moved the infusion up to 5 (or really 5.5) weeks and we did a Remicade levels test then. After that we did infusions every 5 weeks for a while and then every 4.
We were also told the Remicade levels test is very expensive but our insurance covered it.We did it twice, once then and and then later when we trying ti decide whether to switch to Humira.


----------



## crohnsinct

I never had to pay for our tests but that was because O had them before they changed the policies and after we met our out of pocket max. I remember the $750 figure but now I hear the$2,500 figure thrown around by the other parents and nurses at the infusion center so maybe it started after last May.  From what I understand they used to be able to send the test out to a few different labs but now only Prometheus does it so they have a monopoly.  

Our doc isn't happy with the decision but opts for shortening interval and then upping dose to see if it helps.  If not then draws level/antibody test with patient permission and agreement to pay.  

O has been so good for so long and with the addition of MTX I asked to extend out.  He agreed to go from 5 to 6 weeks.  I asked at last appointment if we could do 7.  He said not without a levels test and gave me the $2,500 quote.  Needless to say I agreed to stick with the 6 week schedule:/


----------



## my little penguin

Never got to 8 week schedule here either.
Only every six weeks at a higher dose.
We are still fighting insurance to cover the cost the antibody test that was done over a year ago .$2500
DS didn't have a reaction until 7 months out.
Not on infusion 3 or 4


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## Jmrogers4

Jack's GI said we would do the antibody test since his bloodwork is usually not a reflection of disease activity and no big outward symptoms (besides failure to grow) but at $2500 we'll have to figure something else out.


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## crohnsinct

Info about the test. 

http://www.marketwatch.com/story/pr...nd-antibody-levels-monitoring-test-2013-04-30

http://www.anserifx.com/about.aspx


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## crohnsinct

O.K. you all peaked my interest and I called Prometheus.  The very lovely rep explained the cost is $2,500.  They bill the insurance company.  If the insurance company denies the cost they will appeal on your behalf.  They will go through as many appeals as possible to exhaust the whole procedure.  If they exhaust all options and it is still denied they will reduce the cost and bill the patient $250.  Depending on household income they have a patient assistance program also but the most you will be on the line for is $250.  

Phew!  So getting an extra week wasn't worth $2,500 but I might go ahead and approve $250 to get an extra week!


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## Mehita

Is it just me or is that whole process just silly? Why not just charge $250 and skip all the appeals and save patients stress? And a $2250 difference? Sheesh!


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## Jmrogers4

Thanks CIC, that certainly makes a difference in what we will decide if it comes down to that


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## Mehita

Three more days, three more days, three more days. 

If I wasn't so emotionally attached, this would be fascinating. It's like watching a balloon deflate in slow motion. BM's have held at 2-3/day this last week but now fatigue is creeping in. Maybe he's growing? Too many factors to really know anything. Very frustrating. He ate a whole gluten free pizza last night by himself and topped it off with ice cream so I'll say his appetite is fine. 

I think I'll send his GI a recap of the last couple of weeks and see what he says about testing for antibodies. 

Can someone explain what the normal range is for the test? What's low? Can it ever be too high?


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## Mehita

Never mind... found what I was asking.

http://www.prometheuslabs.com/Resources/HACA/HACA_Data_Sheet_DX06042.pdf


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## Jmrogers4

Hope those 3 days go by quickly.  I'm sure I'm going to be the same way.  Already eagle eye about how much he is eating, appetite is still there.
A whole Pizza and ice cream - sounds like  a teenage meal.  Isn't it lovely to see them eat like a normal teenage boy, I certainly don't mind when I go to get something out of the pantry and it's gone because at least he is eating


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## Mehita

He made it to eight weeks and they ran the basic labs. Hope you're sitting down for this... all his labs, everything, came back normal. He has not had completely normal labs since June, 2009!

We didn't test trough levels because everything was normal. His GI said had the basic labs come back with something, then he would have tested.

I have no words to describe how happy I am right now, so let me describe it with bananas...
:dance::dance::dance::dance::dance:


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## DustyKat

Wow, Wow, Wow!!! That is brilliant Mehita! :dusty::dusty::dusty: 

I am SO happy for you and your lad and sending MEGA loads of luck and well wishes that it lasts forever! Onwards and Upwards! :yoshijumpjoy::yoshijumpjoy::yoshijumpjoy:

Dusty. xxx


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## Sascot

Wonderful news!


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## Maya142

Great news, hope it last forever!


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## araceli

:congratualtions:That's great.


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## Tesscorm

Fantastic news!!! :medal1:


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## my little penguin

:wine::wine::wine:

Long may you enjoy this !!!


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## greypup

:applause::applause::applause:Yay!!!


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## Gmama

Such great news!!! remission forever!!!!!


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## SupportiveMom

Fantastic for you all! Congrats.


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