An Intractable Attack
In support of
The Burkett Family
View Support Registry
The Burkett Family
(Update transfer from Caringbridge)
An Intractable Attack - June 8/9/10 2024
June 8/9/10 2024: It feel somewhat ironic that June is Migraine Awareness month and here we are trying to explain one of the most rare forms of Migraine there is.
A few technicalities to start:
- When we refer to Migraine we are referring to the neurological disease, not a bad headache.
- A Migraine Attack has 4 stages, Prodrome, Aura, Headache, Postdrome.
- Hemiplegic Migraine can be genetic, but we don't know if that is the case here yet and it doesn't change treatment. We do know Braven's HM, as well as Elle's, were jolted into existence in our family with their separate Traumatic Brain Injuries.
- It's not helpful right now to ask if Braven got HM from Elle. Hemiplegic Migraine presents in two ways, genetic (familial) or sporadic. While it is extremely rare to have HM, let alone BOTH Elle and Braven be diagnosed with it, neither suffered from HM or any kind of headache disorder or Migraine before their separate, traumatic brain injuries. IF there is a recessive or dormant gene triggered by the TBI's, it doesn't change care plans or play into emergent needs or conversations right now.
- Migraine is typically treated with a daily preventative (to lower the amount of attacks a month) and an as needed abortive (to stop an attack in its track)
- Preventatives and abortives are very limited for Hemiplegic Migraine patients due to their increased stroke risk. Even more limited when you are not even 3 and weigh less that 40lbs.
- Migraine is considered episodic if under 15 days a month, chronic if over 15 days a Month and Intractable if unresponsive to abortive medications for over 72 hours.
Normally, although Chronic level (2-3x a week), we can control Braven's attacks within 6-8 hours. But by Saturday, we were 48 hours in and Braven was expressing symptoms we had never seen with him.
Drooling, slurring, unable to walk due to the right sided weakness, having pain spikes so bad he would be writhing backwards trying to crawl out of his head.
I called the Urgent Neuro After Hours at Seattle Children's (2 hours away) and they directed us to our local ED and coordinated care with the ED department regarding treatment protocol.
The treatment lowered Braven's pain enough to relax and we were discharged. His eye was becoming noticeably droopy and we went to his OT for some distraction and play therapy. That evening his pain spiked up again and he became inconsolable.
We returned to the ED knowing he was officially Intractable now. They repeated protocol and pediatrics came by to let us know they were not comfortable admitting a child with Hemiplegic Migraine, as they had no knowledge of the rare condition or comfort with overseeing the level of medications he was needing to manage.
Because Braven was in a drugged sleep from the medications, he was considered improved enough to discharge and the local ED sent us home. AGAIN.
It was early Monday morning, so we crossed our fingers that two rounds of medication cocktails would prove enough and left a message for his neuro team to receive when they got in for work.
Comments