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AZMOM

AZMOM

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Well crap. 3 doses of the allo/6pm combo + 1st of labs = unwelcome ER visit :(. Claires labs checked in BG this AM. Ped GI from Vandy called before I could get home. H&H is critically low at 6.5/18.7. The question is if her bone marrow has stopped producing cells or if she has a bleed somewhere. I'm nervous.
 
Darn it all Julie I am at a loss here girl what else is the Dr. Saying? Why the ER visit was she symptomatic or did the Dr. Call you in to be seen? How is Claire doing feeling? I am worried with you!!!! I am guessing that those are the 2 things he is worried about???? Please keep in touch here. I am sure the rest of the crew will be along! My thoughts are with you! Lay low with Claire & find quiet things to do. I know that's easier said than done with a young one! At least till they out rule a bleed! Hugs!!!!!!!
 
OH J...I'm so sorry :(

I have no advice, just lots of love and support !!
:ghug::ghug::ghug:

Hang in there momma! We're all here for you
:Karl::Karl::Karl:
 
Julie, does Acra think the med combo is causing the bloods problems. I'm sorry J, I'm scared with you!! I hope you all get a handle on whatever's causing this soon!!
 
:hug: I hope they figure out whats going on! Worried along with you and my thoughts and prayers are with you and your little one
 
I just noticed she is on 6mp which can cause cell death and bone death if her bone have stopped producing cells I would say thats the culprite
 
Okay. Labs showed critical low h&h. When we got here and the rechecked, she was still falling. Down to 5.1&17 from 6.5&18.7 this morning. Orthostatic bps consistent with blood loss. They type & crossed her and started transfusion. I the meantime ran another measure of reticulocyte activity to see if her bone marrow was trying to replace the loss. The activity was next to nothing so the concern is why is the bone marrow not producing reds.

My initial thought was the med combo but hematology and ped gi say allopurinol normally shuts down the white production (that was the biggest risk for combining the two) and ironically her white count is NORMAL. checking for two weird viruses that I'm about to read up on - parvovirus & cytomegalovirus. hematologist told me that he is going to spend tonight doing homework. Oddly enough that was comforting.

I'll let you all know more when I do. The girl is significantly perkier after just half a bag of blood.

J.
 
Thanks for the update J :)
I'm so sorry you and Claire are going through this!
I wish there were something I could say or do.

The only thing you wrote that I know anything about is the cytomeglavirus (CMV). This is the virus that started Gab's downward spiral when she was 16, and is also the virus (ironically) that has me running her brother (Austin) to the doctors after only a few weeks of being ill. From what I understand about it, it can be very serious indeed. But it didn't/hasn't done anything of the nature to my kids that it (if that's it) to Claire.

Oh how I wish I knew something to help here !

luv you..hang in there !!
~T~
 
Oh my J, this is just awful for you and Claire and your family, my heart goes out to you...:hug:

They will get to the bottom of it J, in the meantime I hope Claire gets a much needed boost from the transfusion. I know that the WCC is the biggie with the combo but 6mp has the ability to reduce any of the blood cell types, so I would imagine the combination could be capable of targeting any of those.

I hope they have answers for you sooner rather than later hun and that those answers are simple and easily fixed.

Sending all my love, luck and healing thoughts your way my friend. I know full well that through all of this Claire will be doing and saying things that will make your heart sing and burst with pride.

Here for you, :rosette2:
Dusty. xxxxxxxx
 
I hope things are looking brighter this morning J!! Have they kept her overnight? In BG or at Vandy?
 
Dex - we are at Vandy. Numbers at midnight were 7.5/23 (I think - I was a little groggy). just drew again. Waiting for doctors.

J.
 
Thanks for the update J.

Thank goodness the numbers are on the up again!

How is Claire?

Much love and best wishes...:hug:
Dusty. xxxxxxxx
 
Julie I am glad they have her in the hospital & are watching her closely! That Dr. seems like a keeper! Going the extra mile! Yes I know it's his job but not all Dr's are like that! It's good to here the trans perked Claire up a bit!
Thanks for taking the time to keep us in the loop! Know your on our minds & in our Hearts!!!!
:hug::ghug::hug::ghug::hug:
 
Julie,
I am so sorry for what you both are going through. I hope Claire continues to improve while you and the drs figure out what is going on. :ghug:

Take care,
Vicky
 
Thinking about you and your family :)
Hope Claire is improving already and you're getting some answers !

much love !
~T~
 
Holy cow, Julie! Hoping things get figured out FAST! That is scary stuff. sending strength and healing thoughts.
 
Well we are here at least one more day. On call GI doesn't want to start anything until Hematology has a plan. hematology still trying to figure things out. As a result, here we sit. But she's comfortable so I'm happy.

Ill let you know more when I do.

J.
 
Hey J, glad you guys are at Vandy! That makes me feel a little more confident:). Good she's feeling ok! I bet she's fit to be tied!!
 
Ah J,

Thinking of you two and hoping you have answers soon...:hug:

Much love, :Karl:
Dusty. xxxxxxxx
 
Ok some days I'm good at being superwoman but I just cracked and had another decent cry. I'm glad I got that over with while she's sleeping. :) I'm sure there will be forward motion today - they need this bed, right?!?!

Not sure if I told y'all hubby had surgery yesterday (it was already scheduled )and since things were stable here, I didn't let him cancel. So the dog is at the farm with my Dad, my Mom is in town taking care of hubs and I'm sitting here feeling like I'm doing nothing for nobody.

Yep, Jules needs a nap. I KNOW y'all can relate.

And here's a semi funny, she had the most normal stool she's had in months early yesterday. Literally 20 mins after we flushed they ordered stool studies. In response, she hasn't gone at all. It's been months since she's only gone once in a day. Colonic rebellion? Maybe. :)

I hope everyone is well. Thanks for thinking of us.

Oh and Dr dusty, hematocrit is holding at 22. However her sed rate is 126. Makes me unhappy.....you may remember that her crp is always normal and ESR is a good measure for us.
 
Awww J, wish I was there to give ya a big squishy hug! And hey, even superwoman cries!

No! I don't remember anything about hubby having surgery. Hell J, I hope it wasn't anything serious.

Oi...:nonono::nonono::nonono:...what's more important than looking after your baby??? You better get that snooze in before ya start believing you ain't doin' nuthin'! :lol:

Haha, good old Murphy's Law. Mind you, I'm surprised you didn't souvenir that one! :ylol:

Oh J, I feel your sadness and worry. :(. Sending you mega loads of (((love))) and (((squishy hugs))) across the pond...:hug::hug::hug:

Take care my friend, :Karl:
Dusty. xxxxxxxx
 
Is it still too early to know anything on the viral tests?

I hope she's still feeling ok. I know how much that can be worth! When they're asleep and you aren't can be tough!! Too much room for thought!! She'll wake bright-eyed and you'll feel better.

Hope C's ok, man when it rains it pours!
 
From the bathroom at Vandy, early in the morning, Claire yells, "FIRE IN THE HOLE!" lol. Her "sample" was ready. Unfortunately it was full of old blood (black). More waiting......

But she's funny. :)

J.
 
That's hilarious !!
And probably music to your ears to hear her being funny in the midst of all this!

WTG Claire! Did it sink or swim?? LOL

Hang in there J ~ Still thinking about you always
:ghug::ghug:
 
Ahahahahaha, Oh J what an absolute joy Claire is!

She must bring so much sunshine into your life, she does to mine!...:sun::sun::sun:

Much love and healing thoughts, :hug:
Dusty. xxxxxxxx
 
That got a chuckle out of me...'fire in the hole'....yes...if she is joking, she must be feeling better!

Now, make sure you take care of yourself too!
 
That is too funny. Glad she hasn't lost her sense of humor. Hope you both had a better day yesterday, and today as well.

Take care,
Vicky
 
Oh bless her, she's a funny girl!

Please look after yourself, I know it's hard, but you are very important too!

Love and hugs

Treena x
 
Hi J,

Thinking about you and Claire :rosette1:
Have they figured anything out yet ?

I hope she is continuing to get better and still making you laugh! :ytongue:

much luv,
~T~
 
Hi everybody. Doing this on my phone so count on typos. Yes, we are home and happy to be there. Although, her reticulocyte count yesterday was still 0 so she is still not making reds. And her sed rate, platelets, inflammation numbers we all know - are very high.

She got 2 whompin doses of steroids before we left the hospital :( and all other meds were stopped. We are going back to methotrexate/steroids. I need to updat my profile.

Blood counts next week. If all ok, repeat the following week and then see hematology in the office. If she's low, we'll have another transfusion that day.

The mystery to the docs is that she is making whites and platelets. Just not reds. To be continued........

J.

Ps. She's always too funny. 2 days before we left she squinted at the nurse putting meds in her IV and said,"Excuse me....are you a professional???". Then proceeds to check the RNs ID badge. Ha ha
 
Ps. She's always too funny. 2 days before we left she squinted at the nurse putting meds in her IV and said,"Excuse me....are you a professional???". Then proceeds to check the RNs ID badge. Ha ha
Click to expand...

Classic! I love it ! Not only is she funny, but she's intelligent, and independent as well! :ghug:

I wish for you that you had more definitive answers J, but I am so glad you're both home and can rest comfortably in your own beds !
Hang in there momma !
Thank you so much for updating...even from your phone...and no typo's that I caught! :lol:

luv you,
~T~
 
Hey J,

Fab to hear you're home,YAY! :)

I am hoping and praying that the problem with the red blood cells resolves itself and if not the answer is an easily managed one.

Sending you all the love and luck in the world, :hug::hug::hug:
Dusty. xxxxxxxx
 
Brians Mom - Parvo & CMV is a "no". That would have been a "neat and tidy" answer according to the Hematologist. But you know, we hate neat and tiday. :ywow: :ywow:

Latest nugget from Claire......heard us refer to the "GI team" in the hospital. Like the nurse would say, "The GI team should be here by noon." I would say, "Hopefully the GI team will let us take this IV out". Etc.

So before we left she said, "What does the GI team do anyway?" I launched into my long explanation of the GI system. She shook her head and said, "Mostly, Mom, they like to dig around in poop." Yes, Claire, I'm pretty sure you're right. :)

J.
 
Oh, :lol: When I read "Latest nugget from Claire" I thought you were going to start talking about her poop!

I reckon she's right too! What a trooper she is, never fails to bring a big grin to my dial! ......:sun::sun::sun:

Dusty. xxx
 
Julie,
You need to make sure you write all these quotes down in a journal!! Claire could write a humorous crohn's book for kids! Kids could really benefit from something like that!
 
Julie I totally agree with Kathy!!! You have to write these down! "Claires humorous GI Journal"!!! I told Daniel about her quotes. Daniel likes to be the class clown & make people laugh! He totally loved her humor! Even though she probably isn't intending all we are getting out of it! That's why you need to write them down! She seems to have impeccable timing without intending too! A wonderful gem you have!!!
 
I'll just share the good. :). Counts at one week are stable. Platelets back to normal (thank you prednisone) MY analysis of reticulocyte count is that her bone marrow is producing. However not enough to yet raise the H&H. First round of methotrexate was also without incident.

More blood next Weds and see the hematologist Thursday.

Sorry I'm such a crappy forum contributor right now. I seem to have lost the wind from my sails. I love you guys. :)

J.
 
Oh man J, no apologies needed amongst friends mate. You have far more important things to devote your energies too and we understand that and know the feeling well.

I'm so glad to see there is some good J but I know you are still going through tough times. Sending mega loads of love, hugs and healing thoughts your way hun and I will carry Claire in thoughts and my heart...

:hug::hug::hug::hug::hug::hug::hug::hug:

All my love, :wub:
Dusty. xxxxxxxx
 
Anybody's kids have crazy itching scalp while on prednisone? This is a new one for me. 2nd day of crazy scratching.

Her energy is pretty good and the "guava" isn't bad either. But she is still complaining a lot about her belly. Sigh.

Hugs,

J.
 
Not here J.

Sending Claire all my love and hugs...:hug::hug::hug:. She truly is a special angel.

:hang: J, you are doing an absolutely fab job Mum...:hug::hug::hug:

Much love, always...:Karl:
Dusty. xxxxxxxx
 
Julie, you've been there for all of us in this forum many many times!!! Hang in there!
Could the methotrexate be causing the itchy scalp?
 
Thanks K. I emailed her doctor because she was digging and digging today. Short answer is yes, could be methotrexate, especially if it is jacking up her liver already. Praying and praying that isn't it. We are headed to the lab when I get off work to check liver function, bilirubin, sed rate, etc, etc, etc. I asked if it could wait until we have our weekly hematology labs Weds. You know the answer was no. She is going to be ready to kick my a-- when I tell her were are going twice this week. Love her little heart........

J.
 
Just catching up J! Sounds like bad to good then back to so-so! I hope today went well! Looking forward to your update!!!
 
My daughter when recieving a high dose of prednisone itched her scalp so much it started to hurt her lol i think it is because the dryness that the pred causes. glad to hear claire is doing better
 

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