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Less than ecstatic

AZMOM

Moderator
I have far less to deal with than so many of you that I hate to complain. So........I'll just whine I guess.

Called Rheumatology because Claire is nearly refusing to use her right hand, crying etc. The consensus between the GI and the Rheumatologist is that since all her numbers are good EXCEPT fecal calprotectin (crept back to 577) and some borderline anemia that the joint pain is secondary to the gut problem.

GI put the kabash on EN because he feels it is most effective for small bowel disease and Claire's has always been "diffuse". After some debate we agreed to a 5 day "burst" of steroids and a bump in methotrexate since she's 85 pounds.

The black dog, Dusty, is sniffing around my porch. :ack:

Love you all - hugs to all of us that would take it all away from these kids in a MINUTE if we could.

J.
 

my little penguin

Moderator
Staff member
Hugs
Don't apologize for posting
We all have issues and when its your kid well its important .
Hope the Mtx bump and steroid burst help.
Poor kiddo
 

Tesscorm

Moderator
Staff member
Absolutely what MLP said... we're all here to support one another, big or small! :ghug:

Sorry that Claire's having to deal with this! :( I hope the steroids and increase in metho relieve her pain quickly!!
 
Tell your girl there's a 4 yr old in Michigan that knows how she's feeling.
I hope you find meds to make her pains go away.
Who would have ever thought that our young ones would have more joint pains then us.
Hugs
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
J, I wonder if Dr. A ever prescribes EN? He said we could try it …but!! He's just not on board with it seems to me. Hope Claire feels better soon!
 

AZMOM

Moderator
I think he is on board when he thinks its clinically appropriate. We had discussed it as an option in the past. He did not, however think it was appropriate this time. Sigh.....

J.
 
This is where we come to whine and everybody understands, she's in pain and you want to fix it. I don't think that is whining. Hope the "bump" takes care of it.
 
Whine away. I'll bring the cheese and crackers. The chocolates are for me however.

Regarding the EN. Um.

A certain rebellious parent who shall remain nameless has been known to do what she felt best when she was certain there wouldn't be any negative ramifications from doing what she felt best. In defiance of a (or maybe more than one) doctor.;)

IE - I'd try EN using OTC products anyway. Should know if it will make a difference in about 2 weeks.

Could do it with the pred or after the pred if the symptoms don't resolve.
 
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CarolinAlaska

Holding It Together
I had my pity party yesterday. I'll come to yours today, if I'm invited :p !

I'm sorry your dd has to have pred. I hope she gets better quickly and stays that way.
 
I hope the bump up helps too! We are with you! My avatar speaks for itself. I usually supply a different kind of punch. :biggrin: since I am one of "Those moms." Keep us posted. I hope her arm quits hurting her. Poor kiddo!
 

AZMOM

Moderator
Call from the school. Chest pain (heartburn). Doing Prilosec with the steroids but not a great sign after 2 doses. Sigh...... Minor.....yet not......

J.
 

crohnsinct

Well-known member
Did someone say wine??!!! Oh right whine:(

J - really whine away. It is totally justifiable. So hard when you are sailing along and hit a setback. I think we all suffer a bit of PTSD. Setbacks bring us to THAT place. And we will all go there with you! We travel as a pack good or bad! With wine, punch and cookies of course!

I really hope the burst works out. Poor pumpkin.
 

CarolinAlaska

Holding It Together
ILove you all - hugs to all of us that would take it all away from these kids in a MINUTE if we could.
J.
When trying to get Jaedyn to try inserting the NG tube again, I asked her if it would help her if I got one and did it with her. She looked at me in amazement, and said "You would do that?!" I told her I would if it would help. Then she said no. She wouldn't try it again even if I did it too. Wish I could have done it instead of her.

Patricia, I read that you have chocolate and you're keeping it to yourself. Is that milk chocolate or dark chocolate? If it is dark chocolate, I might have to wrestle you for it! But if you won't share it, you better not bring it to the party... could be dangerous!

Carol
 

Crohn's Mom

Moderator
Awe man J ~ I'm late to your whining party ! :(

How's Claire's heartburn today ?
Poor little love.
Is the Pred helping with her hand pain yet ? Or anything ?

:ghug:
 
That would be milk chocolate Carol.

But I suppose I could be persuaded to bring some of that dark stuff too.

I might even be convinced to share the milk chocolate.

But it would take a lot of convincing since it would definitely include those chocolate cream filled ones, chocolate turtles and those fabulous chocolate drenched coconut ones from Sees.
 
I love Sees!!!! We did not have a store for many years here and of course this was before internet, so we would get the "BIG" box from family in California every year for Christmas. I don't think the box ever made it to Christmas day
 

CarolinAlaska

Holding It Together
That would be milk chocolate Carol.

But I suppose I could be persuaded to bring some of that dark stuff too.

I might even be convinced to share the milk chocolate.

But it would take a lot of convincing since it would definitely include those chocolate cream filled ones, chocolate turtles and those fabulous chocolate drenched coconut ones from Sees.
You're in no danger from me if you stick with the nasty sweet milk chocolate. Give me the pure, rich dark chocolate that goes straight to the veins! Lol:ytongue:
 
Well given all those years of deprivation I guess I would be willing to share some chocolate with you JM.

Sounds like I am going to have buy at least a 5# box.

So we would have chocolate, wine, crackers, cheese and two kinds of punch plus some cookies.

If we're going to be really self-indulgent I think we should also have some creme brulee.

Who wants to use the torch to melt the sugar on top?

We could also use the torch to light a fire under a doctor or two or maybe burn an effigy labeled Crohn's. What do you think?
 
Ooooh, me, me, me! I want to join in with all that yummy stuff.
Hoping the heartburn is easing off and she is feeling a bit better!
 

AZMOM

Moderator
Dr Dusty - pain just under rib cage on right??? Only thing I can think of is liver. Any ideas?

J.
 

CarolinAlaska

Holding It Together
Liver inflammation, maybe, but could also be gastritis, ulcers, reflux, gall bladder, gas pains... Lots of things there.
 

CarolinAlaska

Holding It Together
For what it's worth. I know it sounds wierd and I don't understand it, but my daughter has found a very helpful, nontoxic thing that helps with her joint pains. She puts an oil on her knees when they are inflamed. It is called geranium oil and both times she used it, it took the pain away within minutes.
 

AZMOM

Moderator
Dex - latest labs were decent with the exception of her fecal cal. Checking everything again in about 1 1/2 wks. Im sure it was way to quick to be of significance but she had her increased dose of methotrexate this weekend. Im sure Im worried about her liver and this "new" complaint put me on high alert.

It had only been a few hours so Im sure Im unjustifiably paranoid.

Claire told me yesterday she feels like a "walking pile of poop". I told her at least she doesn't smell like one. ;). How's that for bad parenting???

J.
 

AZMOM

Moderator
ESR AND CRP are fine. WBC high at 15.7. Urine had some protein but other than that, normal. Chest xray normal. LFTs are fine. Pediatrician's theory is that it's just something viral so she feels "crappy".

He said that because she's "complicated" (understatement of the century lol) that if she gets any worse and he were me, he'd just drive her to the ER at Vanderbilt.

And folks....there you have it.....

J.
 

Crohn's Mom

Moderator
So with the high WBC did they prescribe her antibiotics?
I'm confused - how do they determine "viral" with a high WBC?
Is it possible she has caught her brothers virus ?

Big hugs - poor kids! And momma J!
 

AZMOM

Moderator
Hell, T, I don't know. He did not prescribe her anything and while we were in the office said he's not comfortable throwing drugs into Claire without a clear picture. I appreciate his honesty but I'm at a loss. I have a kid who's hardly functioning who's usually hell on wheels. And, she has never really perked up with the prednisone this team. It all adds up to a nervous Mom.

I emailed the GI nurse with what he said about Claire and also the ER advice. I told her I avoid ERs unless I think we're circling the drain and that I'd touch base with her tomorrow. I'm hoping her doc will be back in - apparently he's sick too!!!!

Oldest child dx today was pneumonia - walking. He's afebrile. I'm mystified by that one because he is sick as a dog. Claire isn't coughing. NO signs of upper respiratory issues.

What will tomorrow bring? Thunder snow? Indoor outbreak of poison ivy? Full blown anxiety attack for Mommy? Sasquatch discovery? Trips to the liquor store? This day, surely hasn't been weird enough?????

J
 

my little penguin

Moderator
Staff member
Hugs...
Hope the Gi gets back to you soon.
More than once we have gotten the your kiddo is complicated " so I don't know what to do " drug wise speech .
Last time it was just strep.
Hope her "virus" leaves soon.
 

AZMOM

Moderator
Hey MLP & T - Just to add to the funhouse, pneumonia kid shouts from the xbox "Moooooo-oooooooooooommmmmmm can you check my temperature again?"

He's no longer afebrile. :mad2::mad2: 101......

Gotta keep laughing......here's to complicated kids.

:heart: J
 

Crohn's Mom

Moderator
I vote for the liquor store !

And just wanted to tell ya - the first time Gab ever had pneumonia she had ZERO respiratory signs. I took her to the ped because she just wasn't feeling good, and kind of lethargic.
When I opened the car door to get her out she ended up vomiting in the parking lot.
Took the doc just a few minutes to tell me she had pneumonia! I was shocked :/
Hopefully the GI gets back to you soon and Claire doesn't get worse :(
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hey MLP & T - Just to add to the funhouse, pneumonia kid shouts from the xbox "Moooooo-oooooooooooommmmmmm can you check my temperature again?"
Probably didn't even miss a beat with his game, did he?

Wow, you guys are getting more than your share J! I hope C's problems are just some bug. Lord knows there's enough of 'em going around!
 

CarolinAlaska

Holding It Together
A white count of 15 isn't unusual with kids who are on prednisone. Were there a lot of lymphocytes or neutrophils? Maybe it was a reaction to the MTX? Hugs and prayers for both of you and your dear son too. I hope they both make a quick turnaround.
 

AZMOM

Moderator
Thanks Carol. Her 5 day "blast" is over but makes sense to me that it would still be elevated. The concern that started it all was the school called because she had a fever and when I say the child could barely put one foot in front of the other - Im not exaggerating. I hope this is a one time event and not how wiped she's going to be with the increased MTX dosage.

Last night she was still complaining that deep breäths hurt her abdomen and she can hardly stand for anyone to touch her belly. I don't get it.

I hope today is MUCH BETTER for everyone.

J.
 

Tesscorm

Moderator
Staff member
So sorry Claire's going through so much! :(

I hope today brings some relief and improvement! :ghug:
 

AZMOM

Moderator
She's ba-ack! Literally! Like someone flipped a switch! Her joint pain is virtually nonexistent. Belly still tender but improved. Im so thankful!

Now - it will be interesting to see if we have a repeat with the next dose Friday. I will be happy for today!!!

Hunter's fever is gone, T. Still doi g a lot of coughing and having chest/back pain. Im praying Claire has no part of this pneumonia!!!!!

J.
 
Glad things are better for you. If you don't mind me asking a question, our GI is recommending a switch from 6mp to MTX. I see you had done 6mp and allopurinal. Was the allopurinol added due to 6mp not getting to therapeutic levels? Did that not do it either? We haven't tried adding allopurinol yet but I'm pushing for that before switching to MTX. My son plays hockey and if the mtx is wiping out your daughter like that I really would like to avoid it.
 

my little penguin

Moderator
Staff member
Allpurinol is added to devert more of the 6-mp from the liver and to the body instead.
My son had high liver levels so 6-mp + allopurinol was added to see if enough could be diverted away without getting too much in the rest of his system.
Gi cut his 6-mp dose to 1/4 of what it had been .
This caused his liver levels to go back to normal.
But also decreased his 6-mp levels.
We tried to increase his 6-mp levels but this raised his liver numbers again.
This led to lower the 6-mp again which left him with symptoms.

So for DS after playing switch the dose for 4 months all the while DS being miserable we decided to try Mtx.
Our theory was we wanted DS to completely FAIL 6-mp before we moved on to the next drug.
On paper this is good but having a kid still in pain well.....
Mtx was tried with pred to give the Mtx time to build up in his system.
He did have fatigue with it. But not every shot.
He was also weaning pred so not a good comparison.
He was never able to get below 20 mg of pred without having increased symptoms. For DS this included vasculitis - which can be dangerous.
After eight weeks it was agreed to start remicade in order to wean him from pred.
You give the Mtx on Friday to avoid the side effects during the week.
Also most have no side effects especially if folic acid is taken.
The goal is to get to a healthy kid.
Unfortunately how each kid reacts to a drug can't be known until they actually try it out.
Wish it was easier .
Hugs
 
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AZMOM

Moderator
Okay ALoTtoLearn.......

Yes, Claire could not get to a therapeutic level on 6MP. Even after a year. She became symptomatic and liver numbers on a dramatic rise. So, the GI recommended the Allopurinal/quarter dose of 6MP. As MLP explained so well, the idea is to change how it's metabolized. There is still a little danger in that. For Claire, it shut her bone marrow down and she quit producing red blood cells at all. Because she's such a trooper, she was critical low (hemoglobin 5.1) before we figured out what was going on. SOOOOOOOOO - my advice if you go allo/6mp route when you start is weekly or at least bi-weekly labs at least and to err on the side of caution if you suspect things are amiss. Do I regret giving it a shot? No. I regret not asserting my suspicions when she started acting tired between routine labs. Don't let my story make you afraid.

With the MTX, she has been on 0.6 ml/25mg vial injections for about 20 months and done relatively well until recently. No significant side effects other than an occasional headache relieved by Tylenol. Last weekend we increased to 0.8 ml/25mg vial so I'm trying to decide if that's what wiped her out early this week. I erred on the side of caution for early labs since she was acting funky. :) It is one of those time will tell things......I will let you all know how this weekend goes.

MLP - I'm sure you've heard me say it before but I so wish we could try a biologic!!!!!

Big hugs,

J.
 
Hope things keep getting better and the Methotrexate doesn't make her too tired again this weekend. Life's never simple is it ;)
 

AZMOM

Moderator
Shot last night. Felt good but pale this AM. Overindulged her with a Justice shopping spree for about an hour. Now for the last four hours, this is it.....

image.jpg

Comments? Does 2 weeks a trend make? I don't know.....
 

my little penguin

Moderator
Staff member
Two weeks- 2 Points makes a line .at least in data analysis.
A true trend can only be seen after three or four .
However
Given she is a kid I would talk to your Gi and maybe based on their experience
They can say yep btdt with other kids time to try something else or adds xyz kwim.

Can your Gi try a lower dose but higher than her usual ( like 0.7??)
Hope the rest helps
 
She is out, hope you get it all worked out, I honestly can not remember if Jack was extra tired with MTX or not just remember the awful cough.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
No experience with MTX but I do remember in talks with Aura about it, she would always mention being wiped out by it. Hi K!!
 

DustyKat

Super Moderator
Hey J...:hug::hug::hug:

I have missed so much, I'm sorry. :(

I agree with Dex re the Meth. I have read of Aura and others experiences on here with it and for some the day or two after was a wipe out. :(

Harking back to the EN. Although it does appear that small bowel disease responds best to this treatment there are reliable studies, don't ask me to pull them up now! :lol:, that contradict this and have found that large bowel disease responds equally well. Whether it works for UC is what still seems to be stumbling block.

How is Claire doing now?

In my thoughts, :heart:
Dusty. xxx
 
J, Do you know if there is different side effects with MTX injections vs the pill form? How is Claire doing lately? It'd be hard to see your bundle of energy sleeping when she normally wouldn't be. I hope its all evened out.
 

AZMOM

Moderator
Kathy - there can be issues with absorption with the pills. We heard that back in the arthritis days too and that was before the gut issues. Both rheumy and GI agree that the injections are her best chance.

Last weekend, the malaise was marginally better but still noticable.

Labs this week look good overall but she has had SIGNIFICANT bleeding today.

Sigh........

J.
 

AZMOM

Moderator
Thanks T. :dance:

Up early while all the chillins are sleeping in..... Praying for a blood free, pain free, post methotrexate headache and nausea free Sunday......we'll see what I get!

J.
 

AZMOM

Moderator
Thanks for checking. We are 14 days from MRE and 17 days from appt. Im sitting on my hands to keep from dialing the doc.

We are seeing daily blood. Her counts last week were good though. And she bounced back better from the MTX this weekend.

Here's a question for you all. Do your kids complain of pain under both sides of their ribs ever? She complains it hurts when she takes deep breaths. At first it was a rt side complaint now it's bilateral.

She is adamant about not wanting prednisone. Not sure we're gonna dodge it this time.

J.
 

Tesscorm

Moderator
Staff member
Sorry she's not doing better... :( I hope the MRE gives you some answers. :ghug:

Stephen's never had pain like you describe...

Lots of hugs :ghug: :ghug:
 

AZMOM

Moderator
Thanks Tesscom. I was reading online and I have an irrational fear of lupus. Not sure I've ever shared that on here. Anyway she has some + antibodies (ANA, Smith, etc) that are usually consistent with lupus. She's just never shown signs. So when I was reading about pain with deep inspiration I started getting paranoid.

Whew. Now that I said it out loud, surely we aren't heading down that road.

On doc day we see both rheumatology and GI so Im going to pick the rheumys brain. He's fabulous.

J.
 

Tesscorm

Moderator
Staff member
I just searched back to one of my old threads... my daughter was having some issues (all started with some pain in her pinky! :yfaint:), one thing let to another and our GP tested her ANA level. It came back slightly high! :eek: and she was referred to a rheumi. I was also worried about Lupus (and I believe RA can also cause a higher than normal ANA)!

In the end, after additional testing, there was no RA nor Lupus... rheumi explained that it is not unusual for someone to have a slightly elevated ANA if an auto-immune disease is present in the family and that this does not mean that they have or will develop lupus! :ghug:

Useless to say, I know :ybatty: but... try not to worry too much until you can get some answers! :hug:
 

AZMOM

Moderator
Thanks. :)

Yes I understand about the ANA. Claire was rheumatoid factor positive too along with the ANA at time of arthritis dx. Sigh. The concern was primarily due to the anti-Smith and another one whose name is escaping me. I'll have to look it back up.

J.
 

CarolinAlaska

Holding It Together
I'm sorry she is still having blood. Is her rib pain worse after a meal? I know some meds can cause pancreatitis which organ is bilateral... Just throwing that out for what its worth...
 

AZMOM

Moderator
I wonder too CarolinAlaska. This morning it was within 5 mins of breakfast. It subsided and I took her to school. I know she wasn't angling to stay home because she was all dressed up in a new outfit complete with sequins on her skirt and flower in her hair to help lead the pledge at school. She took off her shoes, got in my bed balled up in the fetal position. 10-15 mins later she got up. Said it was bothering her but she didn't want to miss the pledge - God love her.......


J.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
I hope the pain's just a memory this morning! Did she stay at school all day yesterday? I'm sure she did, you'd have said otherwise. Hoping for a quiet day Julie:)
 

AZMOM

Moderator
Thanks Dex. We stay at school unless there's a fever. I sound like nazi-mom but Im trying hard to not keep her home for months whenever aomethinfs brewing. Since its still only 1-2 stools a day, Im sending her. And she LOVES school.

J.
 

AZMOM

Moderator
Left hand resolved with steroids. She mentions it occasionally but she's using it normally so I've put that worry on the back burner.
 

AZMOM

Moderator
Okay. I emailed the doc just now. Sitting on my hands wasn't working. At least I'll know he knows what I know until we see him in a couple of weeks. Dex - EJ must not be keeping him busy enough so Claire feels compelled.

J.

PS my email will probably guarantee she bounces out of bed in about 20 mins without a care in the world. Ooohhhhhhh I hope so. :)
 
Hi J,

I had questions for you a couple weeks ago regarding your experience with 6mp and allopurinol. In any event, my son had the pain you described about a month ago. I was worried the 6mp was causing pancreatitis since he always seems to have every potential side effect listed with the various meds. In fact I make sure not to review the side effects with him because I don't want to plant anything in his mind. The first time he just acted like it was more flu like stomach discomfort. It would be there for a bit, then 15 minutes later he'd feel fine. A day later he doubled over at breakfast with pain right where you describe under the ribs. Again, by the time we had to go to school he was fine. A couple days later tried to play a hockey game, but said it felt like his stomach was on fire so I had him ride the bench the rest of the game(in addition to being Dad, I'm also coach). By the time the game was done he was ok. I asked the GI about pancreatitis so they tested LIPASE which was normal. Pain was usually right in the middle under the ribs or more to the left side under the ribs. He also mentioned that it hurt to take a deep breath. That seemed to go on for a week or two and now I haven't heard about it for a couple of weeks. The only advice the GI nurse gave me after he tested normal for pancreatitis is keep a log of when he eats and when he experiences pain. Of course, now it isn't happening? Hopefully that's the outcome for your daughter as well.
 

AZMOM

Moderator
Thanks ALotToLearn! That helps. She complained less of the ribs today because she was limping around. Are we having fun yet???? NO! I appreciate you sharing though. Did I miss your 6MP/Allo questions??? I hope not! Please let me know.

Okay antibody geeks (MLP & Dusty - I'm picking on you! :kiss:) I pulled Claire's comments from the positive antibodies from last year. The consensus at the time from the docs was "We are all aware these are positive but aren't going to worry unless things change."

ANPcom: - Scleroderma (SCL-70) Antibody is seen in 20-60% of ♦ patients with scleroderma; 70% in diffuse scleroderma ♦ and less than 10% of patients with CREST. ♦ - SSA (Ro) Antibody is seen in 70-75% of Sjogren's ♦ syndrome and 30-40% of SLE patients. ♦ - SSB (La) Antibody is seen in 50-60% of Sjogren's ♦ syndrome and 15-25% of patients with SLE. ♦ - Smith Antibody is very specific for systemic lupus ♦ erythematosus (SLE) but only occurs in 15-20% of SLE ♦ patients. ♦

I really do not worry all the time until she comes up with crazy new complaints!

J.
 

Crohn's Mom

Moderator
:hug: J !

I have nothing for you re the antibiodies :lol:
Just want to say I hope the pains settle for your beauty, and you get some answers very soon!
 
Did I miss your 6MP/Allo questions??? I hope not! Please let me know.

No, you answered my questions. Looking back that was almost a month ago.
 

AZMOM

Moderator
GI wants to go ahead and check for c-diff. I'm pretty certain she's not positive but it never hurts to check!

I told my husband to get his spoon ready. :rof:

J
 
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