Tuesday, May 03, 2011

so, let's go back to April 20th, shall we?

ashlyn's been battling chronic headaches for years now. headaches which the doctors always said were sensory related.

but 3 months or so ago, her pediatrician sent her to a neurologist to be evaluated since they've been persistent.

and the rest goes a bit like this:



  • neurologist diagnosed her with pediatric migraine and ordered a CT scan of the brain.

  • CT scan showed normal brain structure, but enlarged adenoids and mucousal thickening in the para-nasal sinuses.

  • neurologist referred us to an Ear, Nose, Throat doctor (ENT).

  • at the time she was on a 30 day regimen of steriods for her Morphea with verbal threats of wanting to die. :(

  • ENT decided that she needed to see an allergist to be tested because of her sisters history, and repeat CT scan in 3 months.

  • meanwhile, she gets allergy tested and has no allergies.

  • and we wait.........and start a new medicine to improve sleep and hopefully reduce frequency of headaches.

  • then on April 20th, she had her second CT scan.

  • less than 24-hours later i got a personal call from the ENT.

  • surgery to remove the adenoids is in our near future. :(

  • 7-10 day recovery, and more unpaid time off work. blah.
we found this out the day before spring break---AND, the day before her second dental procedure to extract a tooth and place a space maintainer appliance.

i just didn't have it in me to tell her. i mentioned it casually to a family member, in her presence, just two days ago but didn't call it surgery. but instead a procedure. she hasn't made the connection yet and hasn't asked about it.

she's terrified of being put to sleep, and she's seen her sister go through this surgery already. not even sure how to break the news.

Edited to Add: the adenoids being enlarged are completely unrelated to her headaches and migraines and removing them isn't expected to decrease the frequency or severity of them. so we still have neurology visits on the horizon.....one as soon as tomorrow.

maybe dr. sally will come to my rescue and come visit her prior to going back to the surgical suite. maybe? i can only hope. because she quite likes dr. sally.

i'm convinced that dr. sally (the dr. who performed her dental procedures) is an angel sent from Heaven. not even kidding. ashlyn has taken a liking to this woman and finds her irresistible. we think she's the bee's knees. so kind, and patient, and just delightful to be around.

dr. sally asked ashlyn if they could have a picture together so she could use it in a presentation to the dental residents to discuss and advocate for special needs patients needing sedation for dental procedures. of course, we agreed.

when she called later that evening to check on her and see how she was doing, ashlyn asked if they could be email penpals. :) dr. sally said "of course!"

so, we spent the first day of spring break at Children's Hospital with dr. sally, then came home and laughed at ashlyn's inability to hold her own head up while still looped up on the sedation meds. i so wish i knew how to share parts of the video. you'd all be smiling.

now that that's out of the way, i can continue on to sharing the next few days of spring break. coming soon.........

(in the meantime, any ideas or books out there on how to talk to an older child (with high anxiety) about surgery that you might suggest?)

4 comments:

  1. Oy - so much to go through! I have no good advice, but I know that you'll figure it out and that all will be just fine! It's a simple procedure and the thought of the headaches being reduced must be a huge hope for you! Good luck!

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  2. oh, ally! i wish that was the case. we're told the adenoids are completely unrelated to the headaches. only time will tell, though. thank you for your positivity! much appreciated. :)

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  3. Hey girl~ I'm just wondering if Ashlyn has any sleep apnea with her enlarged adenoids? Reason I'm asking is b/c we went thru that with Brae. She could barely breathe at night due to enlarged adenoids and later tonsils. So~ after having them removed she is like a new person. I know that sometimes sleep apnea can be linked to headaches. Just a thought. Thinking about getting Ashlynn and Madi checked now for their apnea/snoring issues. Thankfully they r nowhere near as bad but still don't like to see them pause breathing while they sleep. Always something. We will catch up on all of this~ love ya.

    ReplyDelete
  4. bran, that's a very good observation that i never considered. apnea runs in our family. she doesn't have snoring, but has had a weird rhythmic breathing since she was a newborn. odd. i'll consider that when we talk to neurology tomorrow. maybe we can hold further treatment until surgery is over. the ENT said surgery is needed because her adenoids are so large they are blocking the entire naso-pharnygeal passage meaning there is no way she is getting air through her nose alone. she has issues with cracked lips because of her mouth breathing.

    anywho. thank you for the insight. :) we'll chat tomorrow.

    ReplyDelete

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