Wednesday, August 14, 2013

It's (not) all Greek

Remember that time someone told you that your red head / super fair child might have a genetic disorder that typically runs in Greek / Mediterranean families lines and you were all, "huh?!" and they were all, "yeah. I think so." and you said, "so what does that mean?" and they were like, "well, not much...unless he falls in love with one of those olive complected beauties and wants to have babies with her...I mean...he doesn't have any other symptoms of the disease...right?"

Enter description of symptoms:
bone deformities
brain damage
slow to gain milestones
signs of poor oxygenation
frequent severe illness
immune suppression

P.S. - the above isn't from Google - it was actually brought up and discussed during Everett's first and second blood draws.

Then that someone added:
"because his white count looks ok so I don't *think* it's Leukemia...but it might be lead poisoning so let's see how that test comes back...I'll get back with you in a few days on that one"

and then you were like, "wait...I just wanted a 12 month check up and am a little late..."

and they were all, "well, you should probably see a specialist."

Remember that time?

So, you cried and cried and stared at your sweet little *deceivingly* healthy baby for a few days before harassing the specialist's office to give you a dang appointment 5 days after the last blood work was done...because, let's be honest, 3 weeks with all of those possibilities would likely end in you stress eating yourself to death. "Therefore," you said, "the continuation of your family unit depended on you getting your bumpkin in there, like, asap?"

What about that time? Remember that?

Sadly, I do.

Letterhead with "HEMATOLOGIST / ONCOLOGIST" across the top that contained explicit instructions about the exact number of family members (2) that could enter the room with the patient and that they were to be adults - absolutely NO other children allowed during appointments (as well as the intake paperwork for new patients of course) arrived at our house over the weekend. I dreaded filling it out. I dreaded having another doctor contact in my phone. But most of all, I dreaded having a conversation with the man whose name was on that letterhead. I just didn't want him as part of our medical family. I'm not sure how else to describe it. I was shutting down. I just didn't want to hear anymore. Everett looked healthy (still does) and I flat didn't want to know anything else.

But, we went to the appointment.

We arrived in the parking lot of the specialty center, got Everett out of his seat - grinning, but worried as he'd just ridden an hour in the car with *only* his momma and daddy. (Mary Louise and David were home with Mommom who popped over after visiting family in Lafayette.) Kiddo knew something was up. I caught a glimpse of something pink on the parked car beside us: "In Memory of Meghan" with an angel underneath the wording. We were there...this was it.

I walked in and shuffled down the longest isle ever to bring the paperwork to the receptionist. (no seriously, the design of the waiting area, I swear, would insight panic in even the calmest of parents...maybe not...I'm high strung...there it is.)

I turned and went to the restroom. 1 private stall with a suspiciously comfy antique wooden chair in the corner. It appeared completely pristine but wreaked of vomit. This could not be our new home...

We were called back quickly and the nurse was amazingly sweet. Everyone was relaxed and caring. Everett was completely freaked out -but I did manage to get him interested in a few super cool toys that were around...and I'd brought markers - always a win!

The doctor sat down calmly. He looked over the paperwork and test results I'd brought (a good thing because the proper history sure wasn't faxed even though I'd confirmed with our pedi office it had been...they faxed blank results sheets???)

He asked me the following:
Why are you here?
Why were blood tests run in the first place?
What were the circumstances of Everett's birth?
What was his birth weight?
Any concerns before this?
Do you even have Greek or Mediterranean heritage?
How are you giving his medication?
Does he take it well?
How much is he getting?
Are you sure that's the concentration?

He went over the blood work step by step with me with this funny little smirk and SUPER calm demeanor the whole time. Then he said those golden words, "here's why I think Everett is just severely iron deficient...and why Thalassemia isn't likely"

Reasons stated:
He had a severely traumatic birth which included extreme stress and bleeding
He was slightly premature which means he missed out on at least 3 more weeks of iron stores he would have gotten from you (Heather) during a full term pregnancy

Me: so what about his age? Isn't it true that most 1 year olds are at least slightly anemic?

Dr.: yes - growth during the first year literally uses everything your body has...when else are you going to double (almost quadruple) your weight? Never...I mean, if you were 150 pounds and you suddenly grew to 450 pounds, you'd probably be anemic too, yes?

The doctor continued:
I see you gave the iron supplement for 2 weeks and saw minimal improvement. Everett is 9.9 kg today. The CORRECT low dose that I start severely anemic children at is 3mg / kg.

(Everett has been getting 15mg total per day. He SHOULD have been getting twice that per his weight.)

Please start him on 30mg and we'll recheck him in 3 weeks. Expect to keep him on the iron supplement for 3 months AFTER his blood work comes back at low normal - which I would expect to be at the 3 week mark. We can go up on his iron supplement dosage again if needed. He can have as much as 6mg /kg. I suspect his iron stores are nonexistent at this point so the 3 months following normal result should help his body to recover from this. What he is experiencing is something I would consider to be as normal per his history, age and growth. His red cells will remain small and deformed until he has healthy iron stores again (and wouldn't, alone, indicate Thalassemia).

See you in 3 weeks.

I wanted to hug him. Literally. Hug. I didn't. But I thought about it...and thought about yelling, "WTF" really loudly as well. Instead, I just sighed, kissed Everett on the forehead, hugged him closer and smiled at Brent.

The doctor also asked me if Everett was the baby of the family and if Mary Louise and David ever had anemia. (they didn't believe it or not) He said he did a study in 1995 and 9 out of 10 anemic children were the youngest in the family. He couldn't find the reason - it just was.

*Sigh*. I seriously couldn't make this stuff up if I tried. We'll go back to that same office in 3 weeks for repeat blood work. As long as it's normal, I believe we'll have another recheck 3 months later then done.

Thank you so much, again, for all who have checked on us and offered gracious thoughts and prayers. It is all very very much appreciated. I promise.


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