Hi and an update

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AZMOM

AZMOM

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Hi friends - we are at the beach and having a wonderful time. I'll say this - if you gotta have a kid manic on prednisone - do it at the beach!

My good news from last week's Hematology visit is that Claires bone marrow is again producing. Hemoglobin up to 9.8 (full point from week before) and reticulocyte count is high - as it should be given how low she was. Now.....no one still knows why we had the crisis. Have to watch carefully as we wean the prednisone. And while I hate to torture her with lab visits, we have standing orders now (good for 12 months) for a CBC, ESR & retic count and I'm not afraid to use them!

Ill try to check in again. I wish I could prescribe sun, sand castles, shells and dolphins for all of you!!!!!! I mean that.

Hugs,

J.
 
Thanks J, hope you all continue to have a great vacation!! That's good news about Claire:)
 
Wonderful news J ! I hope it continues to get better and better !
Enjoy the beach :)

luv and hugs,
~T~
 
Oh wow J, fab news!

Awww, Claire is so precious, you must be delighted with the results! :mademyday:

Hmph, unless I go to tropical north Queensland, or where you, are I ain't touchin' the beach. I'll freeze ma tits off! :rof:

Much love, :Karl:
Dusty. xxxxxxxx
 
Nothing like a call from the GI nurse while you're on vacay. They check Claires 6MP metabolites while she was inpatient. Her levels were very subtherapeutic and so Dr A does not believe this caused her anemia/bone marrow crisis. He wants to see us in the office next week. Oh well, we'll be there and be tan. :)

J.
 
In typical Dr. A fashion, I'm sure he gave no clue as to his thoughts so....at least you and Claire will look good for the appt.:)
 
Dusty - I don't like my theories and they are muddied :). I'll see what happens when we get off the prednisone......

Claire woke up today with a large fever blister on her chin. The only other time she's had these (of course) was during a flare. Hopefully this is due to the sun.

Love u guys.

J.
 
She is doing pretty well J ! Never home..always running around with friends, working, and taking mini road trips :)
She's looking a bit worn down lately but refuses to admit it so I am sure she's about due for one of her sleep all day recoveries ! LOL

When is your appt to go back to talk w/ the GI?
 
T - I'm glad she's up and about. And Im equally sure you have one eagle eye trained on her. :). Dusty you have to use both your eyes love your heart....ever end up crosseyed? Lol

We see Dr A on Thursday....labwork Wednesday prior to.....stay tuned. :):hallo3: ha ha ha.

Dex I was royally pissed to see everyones face but his during that hospitalization and I have half a mind to let him know itbwoulbhve been nice. I know he was working with the GI team caring for her but still......

J.
 
Hey J,

Ahahaha, no, no crossed eyes here, they just head in totally opposite directions! Yeah, real nice look....not! :ybiggrin:

Okay, I'm probably not the best person to respond to this, what with Dr Teflon still rocking in the corner and all, but I would certainly say something. Like you say J, yes he was working with his team but he still should have had the decency to pop his head in and see how you were getting on. I firmly believe you can't fully treat a patient without eye balling them.

Anyway, if no one ever says anything to him he will continue to do it.

Much love and healing thoughts mate, :hug:
Dusty. xxxxxxxx
 
I think Dr A's bedside manner is due more to shyness than anything else. I'm no great conversationalist when it comes to small talk and it's easy to recognize it in him as well:) Still, he could poke his head in the door and say hi!!
 
The news is I was fried! Ha ha. Okay here's the short version....

He believes after talking with Hematology that her flare worsened after the scope (I agree with that part because I kept calling him) and that she lost more blood than we all realized through the stool (don't agree 100% with that). He believes that she got so dePleted at that point that her bone marrow shut down and reiterated all the other levels were too low for the meds to be the culprit.

He said "we will have to watch closely as we wean the steroids". You'll be happy to know I refrained from stomping his toe. ;). So labs in 3 weeks and seeing him in 6. Calling sooner if problems.

In terms of blood work, she is clearly on steroids. Glucose is a little high. But sed rate is almost back within normal limits. Shes still anemic but hemoglobon up to 10.8 which is close to where she normally rides anyway. My spider senses are on high alert about the liver enzymes though because the are at the very upper end of the range and the child had only had 3 doses of methotrexate.

This is a long dissertation to say that overall it was a good visit. I think we clearly have his attention but this was a hell of a way to get it. I do feel the same way about having not seen him in the hospital. Apparently I should have asked if I had that concern.

Hugs, J.
 
Unless she'd been hiding it from you for quite a while, I'm with you! It'd take an awful lot of blood loss rapidly to cause the marrow problem I would think. Just my two cents...and in my case, that's probably being optimistic:)!
 
Yeah Dex I hear ya. At diagnosis, she was bleeding and going 12+ times a day.....sometimes just blood. This went on for days And the lowest she got was like 7.7 and no bone marrow issues. I think this is in the realm of "some things with our kids just can't be explained" category.
 
Hmmmm, I'm not totally convinced with the faecal blood loss either.

Can you refresh my memory as to where Claire was at with her meds when this happened?

I do feel the same way about having not seen him in the hospital. Apparently I should have asked if I had that concern.
Click to expand...

Okay, do I have this right? You mentioned to him that you didn't like the fact that he didn't come and see you and Claire when she was an inpatient and his reply was you should have asked to see him?

WTF! Hands up all those who expect to see your GI when you are an inpatient at his hospital, without asking?!

Thinking of you mate, :hug:
Dusty. xxxxxxxx
 
Dusty we were alternating 50/25 6mp and had been at that dose since fall. Her liver quit tolerating the 50mg per day. Sed rate started to rise in march. Had scope with l side inflammation in April and added entocort. Ruled out sm bowel issues with CT scan. I contacted them to say she had vomited and was complying more. Added zantac. Contacted ofc again at end of may because flare worsening - that was about the time she got out of the pool at practice and I saw the most blood of the whole flare. Upped entocort and started trial of allopurinol with quarter dose 6mp. At end of week one, had labs and discovered she had bottomed out h&h with 0 reticulocyte production and high ESR.

Hindsight being 20/20...... had been no labs since march. We were on a quarterly lab cycle. So I have no idea how far she fell how fast. Hematology wouldn't blame the med combo because whites and platelets production unaffected. GI says 6mp metabolites not even close to therapeutic levels and so low shouldn't have affected production.

This, my dear Dusty, led to the existing theory I guess. I feel guilty for not being hypervigilant about lab frequency. That will never happen again. :voodoo:

J.
 
So not your fault!

It should not be up to you to decide when bloods are drawn, the docs should have been more on the ball when symptoms reappeared and they started fiddling with the meds.

We have enough guilt in our lives without picking it up when docs haven't been doing their job! :eek2:

Thinking of ya mate, :hug:
Dusty. xxxxxxxx
 
I think we may be expecting a bit much from Dr. A. He's probably the single most referred ped GI for a population center of a couple million people. That does not excuse his bedside manner, or complete lack thereof:)! But to put it mildly, the man is extremely busy!

We've been very fortunate to not have any serious complications like Claire's so we haven't had the need for immediate feedback. I wonder, if you pinned him down on it J, what he'd say? Let him know that as a parent, you want him to keep a closer eye on Claire. She definitely warrants more attention, especially until she gets past this episode.
 
Not really J. Without having had the bloods drawn I think it is too hard pinpoint, I don't know that anyone can say for sure one way or the other what the cause was. I hope more than anything it was just a glitch and it never happens again!

Thinking of you and Claire, :hug:
Dusty. xxxxxxxx
 
Yes Dex he is busy. It's not necessarily a bad thing but when I need his attention, I need it. Oh well Claire is just still breaking him in anyway. :)

I'm thankful that things have been calm for a whole week!

J.
 
How's our lil Claire doing ?
Any new updates?
It's really quiet around the parent's section lately...I hope this a "no news is good news" sign for everyone :)

bug hugs and love,
~T~
 
That's terrific news! I sure hope you continue to have a wonderful vacation! :)
 
Thanks T and Andi. She went to JA week at camp and had a ball. As I told Dex, what better place for a girl juiced up on prednisone than camp? Lol. Overall she is doing ok. Complaining some. I think her ear is infected from a bug bite (addressing that tomorrow) and unfortunately her elbow has sprouted a bunch of warts secondary to the immune suppression.

She is such a light though and tougher than her Momma. I'm not at my best this week. Feel free to give ne a swift group kick in the a$$ - maybe it'll help.

Love you all-

J.
 
Maybe a group hug instead...if we aren't there right now, that same feeling is always right below the surface. I'd like to say don't dwell on it but I know you can't help it.

Are the kids ready to go back to school?
 
Oh J, my heart goes out to you hun. Fab to hear that Claire had a smashing time at camp! :) but so sorry to hear you are struggling at present...:(

No swift kicks up the arse here! Just loads of love of hugs...:hug:

Thinking of you mate, always, :wub:
Dusty. xxxxxxxx
 

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