My preemie twin, Mallory, was diagnosed with juvenile myoclonic epilepsy back in March of 2011. Since it was considered “juvenile” they said there was a good chance she’d outgrow it. So at her neurologist appointment on May 11th, 2015, we decided to decrease just one of her epilepsy meds to see how she’d do as she hadn’t had a full blown grand mal seizure since August 2011. We decreased her Zonisamide from 200 mg daily to 100 mg and kept her Lamictal XR level at 400 mg daily (the highest allowable dose thus why the Zonisamide was added, but Zonisamide causes “foggy brain” so we really wanted to get her off of this drug).
On June 11th, 2015, exactly one month after we decreased meds, Mallory had a grand mal seizure at work. Luckily she works at a hospital! Deciding that she obviously hasn’t outgrown the epilepsy, we increased her meds back up again. The seizure scared her so much that she said she’d consider having a Vagus Nerve Stimulation (VNS) device (similar to a pacemaker) installed that our neurologist had been recommending. A high percentage of VNS patients have been able to reduce medications, some even are able to be medication free. We made a consultation appointment, but couldn’t get in until November.
Fast forward to last week (August 2nd, 2015). I was in New York City for a conference when I got a call that Mallory had yet another grand mal seizure! This time she was at a bridal shower and fell so hard that she broke out a tooth and got two black eyes (photo from above). She was transported to the hospital to make sure she didn’t have a head injury. They did a CT which was normal so released her. I immediately called the neurologist asking if we can get in any sooner since now her meds were level again. There was cancellation for today, so we took it. We planned to discuss getting the VNS procedure done. That was until last night…
The hospital called last night to give Mallory her blood work results (I hadn’t realized they even did blood work while she was in the ER). The nurse practitioner wouldn’t talk to me directly since Mallory is an adult, but Mallory gave them consent to let me listen on the other line. I’m looking into seeing if I can become her power of attorney or personal representative to advocate for her.
Mallory’s prolactin levels were off the charts.
The NP said the only causes of high prolactin levels are pregnancy (she’s not pregnant) or a brain tumor (which those are words that nobody wants to hear). She said we should see our general practitioner as soon as possible. It was after 5 pm, so our doctor’s office was already closed. So I decided to do some intensive research about high prolactin levels (as all super sleuth moms would do).
Prolactinomas, short for prolactin-producing adenomas, is the official medical diagnosis term. These are benign (non-cancerous, thank God) tumors of the pituitary gland that cause higher than normal blood prolactin concentrations.
When I started reading symptoms of proactinomas, I was astonished as Mallory has had some of these symptoms for years!
- Breast Discharge – She’s had this for years. We initially saw a GYN who referred us to a dermatologist. The first dermatologist said it was nothing and to start wearing white bras. The second dermatologist did a biopsy that showed nothing out of the ordinary.
- Headaches – She’s been treated for headaches for years and currently sees another neurologist that specializes in headaches.
- Sebaceous Cysts – She’s had a recurring sebaceous cyst on her scalp for years as well. She’s had it removed by two dermatologists, two general practitioners and just recently (May 19th, 2015) by a plastic surgeon that put her under and removed a golf ball sized cyst.
- Seizures – So now I’m wondering if a pituitary gland tumor is indeed a cause of Mallory’s seizures.
- Personality Changes – All of Mallory’s friends and family noticed a big change in Mallory’s personality after her first seizure back in 2011, so much so that the doctors ordered her to have a psychologist evaluation.
- Vision Changes – She has complained of excess blurry vision as of lately, and her prescription for glasses has continually changed over the years.
I couldn’t believe how Mallory has had all of these symptoms for 5+ years and seen several specialized doctors during this time, yet not one of them tested her prolactin levels? So at today’s neurology appointment, I told them of her high prolactin level. They are ordering an MRI (have to get the okay from insurance first) and agreed that it sounds like she has a pituitary gland tumor. They are going to hold off switching her meds or even considering the VNS implant until after we get those results.
If that is indeed the case, we will then see a neurosurgeon about surgery to remove it. If it’s small enough, they can remove via the nose. If bigger, they actually have to go through the skull. So while a diagnosis of a possible “brain tumor” sounds super scary, I’m actually super excited that maybe, just maybe we will be able to get our old, healthy Mallory back again!
I’ll keep you updated!