u/GuiltyAd72

I posted previously about my daughter (13.) she had her MRI today which showed some markers of increased ICP and tomorrow is LP day 😬

Just something I was pondering:

Kiddo has pituitary failure, including puberty failure. Basically, she has normal anatomy, but something in the pituitary axis is not doing its job and she has not started puberty on her own. She, prior to treatment at age 12, had the hormone levels of a preschool aged child and zero development.

She started estrogen patches December-ish and that’s when her symptoms really picked up. Is estrogen possibly causative? I know birth control pills are possibly problematic so - could this be a trigger?

I don’t know how to square that possibility with the fact that she’s 13 and nowhere near actually completing puberty, but I guess that’s for her endo to sort out.

Crazily enough, my own case was triggered/drastically worsened by a totally different medication (thyroid) which, having no thyroid, I had to continue with (but changed formulations with excellent results.)

Truly feel like lightning has struck twice here.

I was diagnosed last year. I had a weird case - I probably had a subclinical case for years and then it suddenly became so severe I almost died last July due to cerebral edema.

In November or December my 13yo daughter began complaining of headaches and Alice in Wonderland Syndrome. She’s been treated for migraines since January with Z E R O improvement. I noticed her issues were highly positional. I brought it up a few times as a maybe but her eyes look fine on exam. (I even made the point that I have IIHWOP but ya know.) I let it go because the headaches weren’t that frequent or severe and she was mostly okay for a while.

Her neuro left the practice and she got a new one and thank goodness - this one has been much better so far, because about two months ago kiddo got a headache and it never went away. Baseline severity 5/10 pain, as high as 9/10. She has had absolutely no break from pain during this time. Many ER visits with migraine cocktails that knock it back to the baseline of 5 but never end it. She’s been sent home from school daily for 2+ weeks straight because nothing helps. We are putting her on homebound instruction for the remainder of the year now.

She’s having an MRI next week (we aren’t too worried about any nasty surprises here as she was just imaged last year for an unrelated condition - hypopituitarism - so it would have to be something crazy fast growing to cause this so suddenly) and the main thing they want to rule out is Chiari I. She saw a neurosurgeon during the pituitary diagnosis process and they were a bit concerned about that/tethered cord - and she’s grown a LOT since her pituitary was treated (she’s only on estrogen, no growth hormones.) If she doesn’t have Chiari I they will give her an LP the following day. She was also put on Topamax last week but had to stop it that quickly so we can make sure her LP is accurate.

Meanwhile she’s begun developing scotoma, crazy bad tinnitus… I’m as sure as I could be that we are finally figuring out what’s actually wrong.

Living this again through my child is hell. My experience was traumatic, but I am back to normal - I am on 3/4 of a 250mg diamox per day and 90% symptom free at that dose. I responded rapidly to diamox, too. I am desperately hoping for a quick diagnosis here so she can finally remember what it’s like to not be in pain and praying she responds to first line treatment as well as I have.

Any other familial cases out there? Based on MRI it’s strongly suspected she has a congenital cervical spinal stenosis as I do and I truly think this could be a factor here. Either way, this sucks. Thanks for letting me vent and please send some prayers for my girl. She’s a genuinely amazing kid - Honor Society, plays multiple sports, volunteers, supposed to be starting high school coursework next year and will graduate HS with her associates degree if all goes to plan. But mostly, she is the sweetest human being, the kind of kid who can’t stand to see someone else struggling, ever. This disease is so cruel, but I fought and won and have to be confident that she will too.