Skip to main content

insider seizure parenting tip of the day

Always...



Always...



Always...



Ask for copies of your child's records!




Don't be like me. And wait (because it's easier than facing nasty office administrators) until you NEED it!



EEGs come on a disk. As do PET scans & MRIs. The notes from the neurologist are typically in paper format. I request being "cc-ed" into those. Which usually means...an envelope in my snail-mail box a month later. You can also ask for a print-out of the EEGs. I find it super handy to actually see with my lil' eyeballs what Trevy's brain waves look like. With all the data my brain is trying to process...I need to have information in every way, shape & form possible to help with absorption!



Anyway...



If you're not sure how to collect your child's records...my suggestion?



Ask the person with whom you have the best rapport! He/she'll know how to get you the copy in the easiest way possible! And save you the stress headache of asking the resident meanie. Cause it's been my experience that meanies tend to moniter all the important record jazz. What's up with that?



Which is why this morning...in my desparation to get everything together for Dr. Rockstar...I asked the fill-in nurse how to do all this mess. Her tone was warm & friendly. And she was more than happy to help me out! And even agreed that the people in the records depot are meanies!
Labels:

Comments

Adesta said…
I've never had to get a copy of records for the girls, but I have called doctors for test results and such before and even those people are meanies! It's like they are thinking, how dare you interrupt my day with your little request! grrr...glad to hear that you got someone nice to help you out!
May 18, 2009 at 10:07 AM
blogzilly said…
We got copies of everything in our latest round of trying to get records, except the CD with MRI images on it. Not sure how to get that.
May 18, 2009 at 10:57 AM
Sophie's Story by Elaine said…
For all of you going to see Dr. Rockstar soon...You can get copies of the PET scans, MRIs, EEGs on CD by going to the records dept that is in the same hospital you will be at (just a few floors up) and filling out a request form. They will do it right then and there but sometimes it will take awhile to get it all burned so you can either come back or fill out an envelope and they will mail it to you. They have a great records dept.
May 18, 2009 at 5:41 PM
Holli said…
What a great tip! I never understood the importance of having them at my fingertips until I had to get them sent to Dr. C. It took weeks for our local hospital to get them over.

Plus, all records were automatically sent directly to me from our tests in Detroit. What a new insight I got from having them all where I could read them myself...instead of my scribbled notes from listening to the doctors!

You bet I'll make a point to ask for them from now on!
May 19, 2009 at 8:45 AM
Pink Daisy Photography said…
Ok who is Dr.Rockstar? haha!!

Lisa
Kali's mom!
May 19, 2009 at 9:12 AM
Anonymous said…
Excellent advice!

Barbara
May 19, 2009 at 6:08 PM
Mrs. M said…
GREAT Tip!!
I haven't done this as of yet, but will.
Thanks D!
May 23, 2009 at 5:49 PM
Post a Comment

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...
23 comments
Read more

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...
14 comments
Read more

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...
27 comments
Read more