Claire Update - Scope Weds

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AZMOM

AZMOM

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Sorry to have been absent a few days, my friends. The good news is a promotion at work but golly, I've been hopping!

I just wanted to let you all know that Claire is having a scope on Wednesday morning. We start the prep tomorrow night. She had some crazy labs indicative of inflammation specific to the GI tract so we scheduled this over a month ago. Her crazy mother was hoping it was "just" her arthritis. No such luck. Over the past 3 weeks or so, she has become symptomatic for the first time since diagnosis. While I'm thankful for the months of remission, I'd be lying to you if I said I wasn't worried about what our "next step" is.......and I know it is likely coming sooner than later.....

Thanks for listening.

J.
 
Awe I'm so sorry to hear that Claire isn't feeling well again :yfrown:

I went looking through posts the other day to see if you had been around.

congrats ! On the promotions ... that's wonderful !

I feel for you starting the "prep" tomorrow night...oh my! Does she get to do the Miralax and Gatorade? It's so much easier on the little ones.

Best of luck to you and Claire! Try not to worry too much Mom ! :rosette2:
 
Sorry things are acting up Julie!! I have a feeling Claire can handle the prep pretty good! These kids are tough as they come!! Has Acra mentioned what he's leaning towards? EJ goes back this Friday to start Humira.

Congrats on the promotion!! I hope it's not too much more headache:)
 
@T - Thanks. I'll take the encouragement. Dr. Acra's prep is Mag Citrate (Claire prefers lemon - lol) and 2 suppositories. Ack. Yes, some bribery is in order and I have already been to Walmart. Ha ha. You and Gab have been on my mind. I need to get caught up!

@Dex - Thanks again. :) She IS tough as nails. :) The new job is crazy but good. I the Manager of Distribution so it includes the warehouse and stat room at the hospital. Who knew there was so much to it???? Not me! We parents shouldn't take all those supplies being at our kids' hospital besides for granted......I'm preaching to myself on this one!

He mentioned Methotrexate if this proves that the 6MP is failing. She was on Methotrexate at age 4 for the arthritis. Honestly, it didn't do jack squat. I'm trying not to be pessimistic though - I realize that we have too many blessings to count.

Love to my "peeps" :ybiggrin:

J.
 
Hey J, hope it's going good for Claire!! Good luck tomorrow! Let us know what Acra has to say....that won't take up too much space!!:)
 
Dex - We are in the hotel. Rounds one and two of prep complete. She's a lean mean machine that girl of mine......... She's sleeping soundly so all we have left in the morning is the last suppository and we should be in business.

Save me pages and pages for my Acra report. ;-) I'm assuming he will come out and talk to me and not send a minion. If he doesn't, I'll be getting arrested for barreling into the suite. ;-)

This cleanout, while I hate it, tells me we aren't in the hemisphere we were two years ago. For that, I'm thankful........

J.
 
Wow Julie...Claire is one tough cookie. We've only done one bowel prep and daughter is still talking about it 3 years later. Great big giant hugs to that precious girl of yours...and to you as well. I'll be thinking about you both often.
:ghug:
 
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Hey J,

I hope all goes well with Claire's scope and yep, she sure is one tough cookie......:cookie: :ybiggrin:! Barrelling in sounds like a plan to me, I reckon if Matt's GI hadn't called me in I would have done the same thing!

Thinking about you guys and let us know how things go when you get a chance.

Big hugs to Claire, :hug::hug::hug:

Much love, :Karl:
Dusty. xxxxxxxx
 
Good luck tomorrow Julie and Claire!
I hope everything goes well and please let us know how it goes. Kids are so resilient! I hope you got her some good bribery gifts :D
:goodluck:
 
We are ready to roll. Just for Keona, here's a math equation that demonstrates my willingness to bribe:

7 oz of mag citrate = one Monster High doll (which Mom HATES)
Suppository 1 = one Pictureka card game
Suppository 2 = one coveted Squinkies bracelet

She's not cried or fussed a bit. The bribery worked TOO well. Love her heart.

Let's get this going!!!!

J.
 
Ok we are home. In short active disease but small area, few inches in bowel on right side. He wants a CT next week. If small bowel is clear, adding "non systemic steroid (I'm thinkin entocort??????). He said though, that will only address the rt side disease. Help me, Dusty!

If small bowel is involved, we'll have to pitch the 6mp and make some decisions. So, sports fans, more next week.

She was m-a-d about waking up with no underwear..... I'm just trying to not address that one!!!

She has to be npo before the CT scan. I didn't think to ask but do you all think there's more sedation coming? I'm going to contact the doc tomorrow with all my random questions.

Love to all,

J.
 
Thanks Julie! That doesn't sound too bad, though I'm sure you'd have loved to hear all clear.

I know as soon as I hit the submit button it will dawn on me what npo is...but until then what the heck does npo mean?
 
Nothing by mouth - no eating. :) Technically nothing per oral I think. LOL

Claire is in here. She says to put this :crabby1: on here for you all. :ybiggrin:

J.
 
Hey J,

She was m-a-d about waking up with no underwear..... I'm just trying to not address that one!!!
Click to expand...

More bribes???? Awww poor little love, it's often the little things, not that this is little, that really hit home ay.

I reckon you are spot on with it being Entocort......right area, right drug.

By pitching the 6mp do you mean get rid of it? Is he thinking that if she still has disease in the small bowel then the 6mp isn't working and the area in the right side is a skip area caused by problems further up?

My kids have never had sedation with a CT Scan but then they are significantly older. They usually have both oral and IV contrast, they always have IV but have had it without oral contrast and water only. The scan itself is over very quickly. It is normal to fast for 4 hours prior.

Please give Claire a big hug and mega gold star from me!

Love always, :wub:
Dusty. xxxxxxxx
 
@Dex - the crab was directed at me talking about "npo" AGAIN. She and I are both tired tonight and we are too much alike! Just wanted to be sure you knew it wasn't at you!!!

@Dusty - I should've clarified. Pitch the 6MP and go to Methotrexate. She's on a subtherapeutic dose of 6MP ever since her liver decided to get as crabby as her mother. :). We've been at a lowered dose since January....just long enough for the stupid Crohn's to creep it's way in again....

I'm not whining (yet!) because she really is doing well. But that doesn't mean I have to like any of this for her or any of our kids for that matter.

Hugs,
 
Awe J, you get to be as :crabby1: as you want ! Maybe we can find an "I'm just plain Bit**y" Icon you can save for later if things get worse ! :ybiggrin::ybiggrin:

I'm glad there's is only just a "little" (not that it makes it better); ah hell...you know what I mean.

Bless you and Claire !

about the 6mp...I have had several specialist say that with this particular one...it will either work, or it won't and there is no grey matter in between with 6mp.

:hang: and hopefully you can snuggle up and have a movie night :) Has she seen Tangled yet? I think I am going to try and watch it this week. I just still LOVE the kid movies, even when I have to watch them alone now! LOL

I'm glad to hear that she did so well through the procedure tho! (well...besides that:rosette1:)
 
Well she's averaging 3 bloody loose stools a day now..... Frankly I found a pair of bloody stained underwear in the laundry just moments ago and I'd like to go crawl in the closet and cry. Is it the end of the world? No. Am I okay? Not really. I just flippin' hate it. I really really do.

CT is scheduled for the Thursday. I need a plan of action. I'm an action oriented Momma you know........

Thanks for checking in on us.

J.
:crabby1:
 
Awe Julie....
:ghug::Karl::ghug::Karl::ghug::Karl:

:hang:


my thoughts are with you :rosette2:
I understand all too well :(
 
Oh man J, my heart goes out to you and Claire. :(:(:(

How heartbreaking for you hun. I understand the need to have an action plan, to know that things are being looked at and investigated. Good luck for Thursday and let us know how things go when you feel up to it.

Loads of love and hugs to you both, :hug::hug::hug:
Dusty. xxxxxxxx
 
Just a cyber hug , from one mom to another. Keep up ur strength. Best wishes for a great outcome in the near future.

**Phyllis
 
Just popping in J to wish you both good luck for Thursday
and sending a big squashy hug for Claire
xxxxx
 
Tell Claire that I think NPO stinks! Makes me crabby, too.

Julie, you and Claire are in my prayers. Make sure you ask if she is going to have "I have pee'd on myself" feeling so you can prepare her.

Hugs!
Wendy
 
Well I emailed the doc today with all my worries. We are starting the entocort tomorrow with the understanding that a new strategy might be needed after the CT results are in.

I am better today. Sorry to be so "low" last night. So many of my dearfriends on here have had SO MUCH more to cope with than I have. I appreciate you all not lining up to kick my bahooky :).

Thursday can't come soon enough for me!

Love,
 
Don't you be apologising J! :nonono::lol2:

Seriously though hun, you don't need to be sorry, we're your mates and that's what we're here for. We'll cry with ya and we'll laugh with ya and that's just the way it is. :)

So great to hear the doc listens to you J and I'm with you...roll on Thursday. Now if you got your patootie down here Thursday would come around so much quicker! :lol:

Loads a love, :wub:
Dusty. xxxxxxxx
 
Aw Julie
I don't know what a bahooky is but I don't wanna kick it!
As Mums we gotta get up and shout for our kids, be low and unhappy when they're ill, scream and be proud when they've done something amazing, (and they look at you like you've gone mental)
if we don't, who will?
It's our job, and you're doing a bloody good un luv!

In fact, you all are, I pop in now and then to see how you're all doing, and you're all just bloody marvelous!
And you too Marky!

xxxxxxxxxxxxxxx
 
Awe Joan, does that make me an honorary mum? Hey!!!! Dads love their kids toooooooo!!!!! This one sure does!!


I'll be thinking about you and Claire tomorrow J!! Let us know!!
 
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Good luck for today J. I have everything crossed for Claire and a little Koala to cheer her up......



Thinking of you both, :hug:
Dusty. xxxxxxxx
 
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Thanks everyone. She was a champ as usual. I should post the picture of her smiling drinking her contrast. LOL.

They said 48 hours for results. I'm guessing nothing from Dr. Acra tomorrow but you know me, I'm calling anyway. :)

Dusty - After all that BS runaround (pardonnez ma Francais) on the telephone with three people, the scan was both oral and IV contrast. Claire was quite irate about that IV only because I hadn't told her that. Gotta love apologizing for your failure to know all information to your 8 year old daughter. She can do anything when she's prepared but all she was prepared for was the drink. Oh well, water under the bridge.......

She's very pale and tired tonight. I'm guessing it's just the whole ordeal. Any thoughts on that???

Love to all -

J.
 
Awww, Claire is such a trooper, what a honey...:hug:. I'm surprised they didn't mention the IV contrast, without it a scan is of little value when dealing with IBD and inflammation. Hmph.....bunch of dorks!

My two cents worth, and that's about all it's worth...:lol:. I reckon the scan has taken it's toll on her...oral contrast, IV constrast, the procedure, fasting, waiting and geting to from the appointment...I don't imagine the bleeding has had a great impact but perhaps coupled with the other it has just made the whole thing a little harder for her body to bear.

I hope she has a good nights sleep and is feeling refreshed come the morning.

Always thinking of you both...:Karl:
Dusty. xxxxxxxx
 
Ok great news first. CT did not reveal ANY small bowel inflammation. So the flare is isolated to the large bowel. We started the entocort yesterday and are hopeful hopeful hopeful.

Puzzling news is mild to moderate hydronephrosis of the right kidney. Dusty???? They said not to worry and they will ultrasound the kidneys at the visit in a couple of months. I haven't googled yet but will.

She is back to being "Claire" today. Wahoo! Good appetite and just a little bit of bleeding.

As for her crazy mama, I'm better since there's a plan!!!!

Love J.
 
Julie, Dr. Deb says it means water backing up in the kidney. Doesn't sound too worrisome:) Way to go Claire!!!!
 
Dex is right about the hydronephrosis. Gab had the same thing before her surgery, but hers was caused by the mass pushing against her ureter tube. Dusty's Sarah had it also, but not sure exactly what caused hers. I am finding tho it seems to be common for some reason with CD, just not sure of all the exact causes and why. Gabs is beginning to heal now we believe, and Sarah's did heal as well. (Dusty can correct me if I am mistaken here..LOl)

I see on here quite a bit that when the inflammation is confined to the large bowel it is referred to as "good news'; as opposed to when it is in the small. Can you, or anyone, explain that to me? Why is it better ? I'm lost....LOL

I'm so glad she is back to being herself and the bleeding has slowed ! Hopefully now you can breath just a little easier for now :)

Much love, and always thinking of you all ! :rosette1:
 
Excellent news J! :hug:


@T, you are spot on about Sarah! :medal1:


As T has said, Sarah certainly had it and it was also picked up on one of Matt's scans as well, although not to the extent of Sarah's. In their case it was directly related to inflammation of the bowel. Since Claire's is located in the ascending colon I could well see that swelling of the bowel, caused by the inflammation, could quite easily cause it push against the ureter. This causes the ureter to partially block which slows down the draining of urine from the kidney. The back up of urine then causes the kidney to swell, hydronephrosis. Once Claire's inflammation is brought under control the problem should resolve itself. Sarah's kidney was back to normal when she had an ultrasound 3 months post op. Matt's was recognised on the scan taken 15/2/11 (two weeks after discharge from hospital). His scan on the 28/3/11 showed his bowel inflammation had improved significantly and as a result the hydronephrosis had resolved.

I don't know about the large bowel thing T. Is it perhaps not so much that it is the large bowel but that it is confined? (((shrug)))

It makes me so happy to hear J that you are both feeling better, :):):)

Much love, :Karl:
Dusty. xxxxxxxx
 
T & D & M & everyone else - thank you!!!

T for us the large bowel news is good for a couple of reasons. 1. It is nowhere as extensive as at diagnosis (nor should it be!). 2. Since we are limited on med options due to a neuro diagnosis, we need 6MP not to fail. We had to lower her dose around Christmas because her liver is grouchy. I believe this is when things started to change. Soooooooooooo Dr Acra said if the disease activity was large bowel only that we could continue our 6MP strategy and just add entocort. Entocort (from what I understand) would not have adressed sm bowel issues.

T are you sorry you asked yet??? That is my long and rambling way of telling you why it was "good news" for us. If I wasn't doing this from my phone, I'd have rambled more. :thumright:

Hugs for everyone -

J.
 
AZMOM said:
T & D & M & everyone else - thank you!!!

T for us the large bowel news is good for a couple of reasons. 1. It is nowhere as extensive as at diagnosis (nor should it be!). 2. Since we are limited on med options due to a neuro diagnosis, we need 6MP not to fail. We had to lower her dose around Christmas because her liver is grouchy. I believe this is when things started to change. Soooooooooooo Dr Acra said if the disease activity was large bowel only that we could continue our 6MP strategy and just add entocort. Entocort (from what I understand) would not have adressed sm bowel issues.

T are you sorry you asked yet??? That is my long and rambling way of telling you why it was "good news" for us. If I wasn't doing this from my phone, I'd have rambled more. :thumright:

Hugs for everyone -

J.
Click to expand...

:ywow::ywow:eek:h no no, not too much info at all :ywow::ywow: LOL
Actually, it makes sense now. I think I get it :)
I am going to have to go stalk your posts tho because I guess I have missed something, somewhere about "neuro diagnosis". Or I'm just an air head after all :ytongue:

I hope Claire is feeling good today still, and you're not working yourself too hard !
Much luv,
~Tracy~
 
I think I have stalked you plenty now, and am all edumecated on Transverse Myelitis and Claire's history LOL.

Wow...that poor girl has sure been through a lot in her little life :(
 
Awww T, thanks for giving enough of a dam- to stalk us.

And Dex, yep, you've got her pegged!

:thumright: :thumright: :thumright:

J.
 
Just caught up on your thread Azmom. Wow - Claire is certainly one tough cookie! It's amazing what kids can cope with.

Hope she is doing well and have a lovely weekend.
 
(((Julie and Claire!)))

Awwww I am so sorry to read all of this Julie! I have been MIA for quite some time and just had to catch up. I hope that the entocort is the answer for this recent development!

HUGE HUGS, happy mommy's day, and congrats on your promotion! Hug Claire for us!

Love Kel
 
Thanks for checking on us. :). I wanted to tell you all that while everything isn't "perfect", I'm back to cautiously optimistic. She's back to only going once a day and seems to feel better. I think the amount of blood is decreasing also.

Crossing fingers and toes.......

J.
 
Julie,
That's good news that she's feeling better! Only going once a day is great news. Now she'll start to heal. I'll keep praying she continues back to remission.
Kathy
 
Hey J, :bigwave:

Fingers, toes, legs, arms and eyes crossed here!!!

Sending mega loads of (((HUGS))) and (((HEALING THOUGHTS))) your way...:hug::hug::hug:

Much love, :Karl:
Dusty. xxx
 
And then she started running a low grade fever.......... Tell me it's a coincidence. It has to be!:crab: :crab: :crab:

J.
 
Ach, Julie! I hope things settle back to "normal" soon! Any chance fever is a known side effect of Entocort?
 
It's a coincidence, it's a coincidence!!! Hell, I don't know J but I'm with Dex...is it side effect of the Entocort?? I know it is a side effect so is that what you are thinking? I'm guessing Claire is otherwise well, you know what I mean.

Loads of love, :wub:
Dusty. xxxxxxxx
 
How's Claire doing hun? Was it just a coincidence with the fevers ?

Hope you are both doing ok....thinking about you often! :rosette2:
 
You know, T. She is very up and down..... I get on a "high" for a day or two that she is doing so well. Then something strange happens, like the fever. This morning it was big stomach crying drama, no eating, tearful, etc but then tonight, she's good - although I did find a yucky sore on her little bum after her shower. I feel like we are doing two steps forward, one step back but overall I think we are moving in the right direction.

I'm just watching - and waiting - and watching. I don't think there's anything to do but wait and watch until something else appears.

Then again.....isn't that what we all do.....all the time? I just came to that realization when I was typing. LOL.

I think instead of worrying tonight, I'll rejoice for you, Gab, Dusty, Matt, Kathy, Brian, Rachel, Luc, Kelly, Ant, everyone I'm forgetting and heck, even Dex. :) (Dex for the record I rejoice for EJ all that time - lol)

Hugs,

J.
 
Julie,
My heart goes out to you and Claire. All the names you mentioned...all 10yrs or older. Don't you think that plays in? Little Claire is only 6 (and a tough little 6yr old). I think Brian sometimes down plays the degree of cramps because he is old enough to know what 'might' happen if he tells it all...more tests...maybe worse than 1 shot every other week. (He knows that some have to do weekly shots of Humira). You're so right on the 'wait and watch'. You can't hide from it...Crohn's Disease just stinks!! I'll be praying for you both. Did you ever see the article about the research they are doing with probiotics? In Chicago, they deleted a gene from the probiotic and then gave it back to mice...the mice then had reduced inflammation. The word, 'cure', was mentioned in the article. Oh please let it be!!!
 
How is claire doing... I know all too well about those tests and preps. Did you get any results yet??
 
Oh J, thinkin' about ya hun. The watching and waiting sure is familiar to us all ay.

Sending oodles of love and hugs to you both and hoping more than anything that it all settles for your baby.

Dusty, :hug::hug::hug:
 
There are days I swear you and Dusty are psychic. Today has sucked. Well that's not exactly true but it hasn't been stellar.

Claire got out of the pool halfway through practice. After 5 mins I went to the bathroom to see why she hadn't come out. Well she was on the toilet crying. She finally let me in. There was more blood in the stool than I've seen since she got out of the hospital two summers ago. It was bright red and i would describe it as large pockets of blood. Sigh...... She felt awful and quite frankly I think it scared her.

She rested up this afternoon because of course, her birthday Party was this afternoon. Anyway she ended up having a good time at her party. It was low key - painting at the local pottery place - but still. I took her shopping afterwards which Im pretty sure is her favorite sport :)

I know one day does not a crisis make but I was discouraged to see all that blood.

J.
 
Oh Man J !! arrrgghhhh!! :(

I'm so sorry Claire had such a bad day!
But...Happy Birthday to her !!
Is your local pottery place Mudd Monkey by any chance ?
We had one here for a few years and my kids have done the most fabulous projects!

I'm sure she was scared to death over the blood...that poor girl !
As I am sure mommy was just as scared, if not more :ywow:

What is your plan of action now? Is it still a watch and wait situation ?

I sure hope she gets better quick !!

much love to you both!
~Tracy~
 
Psychotic maybe! Nah, just concerned J!! Was Claire in pain or just distraught over the likelihood of more doctors and tests? So sorry for you both J! Let us know!!
 
Oh J, for that to happen to Claire on any day is heartbreaking enough but on her birthday just makes its all the worse...poor little love and Mum! :(:(:(

I hope the retail therapy helped to ease her fears and get things back on track.

How are you both today?

Thinking of you and hoping this finds you and Claire in a better place...:hug::hug::hug:

Much love, :Karl:
Dusty. xxxxxxxx
 
This update about Claire makes me want to cry... No child should ever have to go through things like having Crohn's. I'm extra emotional from my 6 week old niece being in a children's with bacterial meningitis and my son's crohn's is horrible too. It's just not fair... Praying for these kids to get better... Hang in there too mommy!
 
Julie,
I am soooo sorry to hear about Claire. I go every Wednesday to Adoration (a silent hour before the blessed sacrament) at my church and I'm dedicating the hour to her.
Please us keep updated.
Lots of love coming your way
 
The poor little thing. And poor mum...we try to make everything just perfect for their birthday, don't we? So sorry things are rearing their ugly head but hope for the best. Thinking of you.
 
AZ mom...I am so said to read your struggles. Kids are more resilient than we are...unfortunately. But, I notice they are alternating the 6mp with doses. I have trouble with mercapurine (sp) which I believe is 6mp. SO I take about 10 mg a day with Allopurinol to help the body metabolize it and get the best "kick" from the mercapuririne. My dr told me this is a pediatric dose! I'm in my mid 40's (shhh) and petite in size. I am wondering if that would help. Before, 6mp did nothing for me and I had a collectomy. Just a thought? I don't know. I wish I could help you and your kid. (((HUGS)) Sue
 
Sue!!!! You'll have to read my "guesses anyone" thread because we are trying just that. You MADE my night to read that his combo has made a difference for you. We start the "new drill" on Monday. :)
 
Julie wow you have been through it all! I know the blood scared Daniel. But I am sure as you describe it his was nothing compared to your little Claire!!! I hope you get answers & relief for her soon!!! NO child should have to go through this! I hope your Birthday girl will be feeling better soon! Special Hugs to You! It's so hard as parents to keep the worry & frustration from our outer being! It's a very tough path as parents we have to follow!
 

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