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Here we go again...?

Mehita

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

my little penguin

Moderator
Staff member
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
 
Mehita

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.
 
Sascot

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!
 
C

crohnsinct

Well-known member
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.
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
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!!
 
Tesscorm

Tesscorm

Moderator
Staff member
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:
 
Mehita

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!
 
Tesscorm

Tesscorm

Moderator
Staff member
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... :eek:
 
my little penguin

my little penguin

Moderator
Staff member
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
 
Sascot

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:
 
Mehita

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.
 
Tesscorm

Tesscorm

Moderator
Staff member
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:
 
DustyKat

DustyKat

Super Moderator
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
 
Mehita

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.
 
Mehita

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!
 
Tesscorm

Tesscorm

Moderator
Staff member
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!
 
Johnnysmom

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

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!
 
Mehita

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...
 
Mehita

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!?!?!?
 
Tesscorm

Tesscorm

Moderator
Staff member
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:
 
Mehita

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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D

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.
 
Tesscorm

Tesscorm

Moderator
Staff member
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!!
 
Twiggy930

Twiggy930

Location
Canada
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.
 
Mehita

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?
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
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!
 
Jane and Nick

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.
 
Tesscorm

Tesscorm

Moderator
Staff member
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:
 
Mehita

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 :)
 
C

crohnsinct

Well-known member
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.
 
Brian'sMom

Brian'sMom

Location
Midwest
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.
 
Brian'sMom

Brian'sMom

Location
Midwest
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 :)
 
my little penguin

my little penguin

Moderator
Staff member
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.
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
I'm glad they're scoping Mehita. I hope his cleanout and procedure goes smoothly. Good luck!! I know you'll let us know.
 
my little penguin

my little penguin

Moderator
Staff member
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
 
Twiggy930

Twiggy930

Location
Canada
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.
 
C

crohnsinct

Well-known member
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!
 
Tesscorm

Tesscorm

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

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

Tesscorm

Moderator
Staff member
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:
 
Mehita

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.
 
ChampsMom

ChampsMom

Location
North East Coast - USA
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!!
 
Tesscorm

Tesscorm

Moderator
Staff member
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.
 
D

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).
 
Sascot

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.
 
my little penguin

my little penguin

Moderator
Staff member
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.
 
Johnnysmom

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))))))
 
Catherine

Catherine

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

Good luck.
 
Brian'sMom

Brian'sMom

Location
Midwest
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

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

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.
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
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.
 
my little penguin

my little penguin

Moderator
Staff member
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.
 
C

crohnsinct

Well-known member
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.
 
Sascot

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!
 
Mehita

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!
Click to expand...
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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DustyKat

DustyKat

Super Moderator
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
 
Mehita

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

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:
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Mehita

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

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.
 
D

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

ChampsMom

Location
North East Coast - USA
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.
Click to expand...
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.

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

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

DustyKat

Super Moderator
@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
 
Johnnysmom

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

my little penguin

Moderator
Staff member
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

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

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

Clash

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

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!
 
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