Braven's Hemiplegic Migraine Diagnosis
In support of
The Burkett Family
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The Burkett Family
(Transfer from Caringbridge)
June 6, 2024: started out "normally" for us, just an early morning trip to see Braven's neurologist at Seattle Children' Hospital and have an afternoon sedated brain MRI.
June 6, 2024: started out "normally" for us, just an early morning trip to see Braven's neurologist at Seattle Children' Hospital and have an afternoon sedated brain MRI.
Braven's made incredible rehab progress since the Traumatic Brain Injury last summer, relearning to walk and run and feed himself.
However, we have been unable to limit what appear to be Migraine attacks for him to less than 2-3 days a week, which is a horrific amount for anyone, let alone a toddler.
Braven's attacks include severe light and sound sensitivity, pain, and dramatic balance issues due to right sided weakness and muscle tone issues. He's been having increased falls, and lately, even injured himself during the attacks, which is why he was having a brain MRI, to ensure there was no secondary diagnosis.
While at Seattle Children's, one of these Migraine attacks started and Braven went from racing the hallways laughing with his baby stroller, to using the stroller as a walker, shuffling and tripping and seeking out dark, quiet spaces with flat affect (zero emotion on face).
This is something we are used to, and can usually bring relief to within 6-8 hours, however, by the next day (Friday the 7th) he continued to struggle and we started to see symptoms ramping up.
MRI results came back clear thankfully, meaning no brain tumor or secondary issue missed in his Traumatic Brain Injury. Which led to Braven's official diagnosis of Chronic *Hemiplegic Migraine.
The same, rare subtype I (Elle) battle.
The same, rare subtype I (Elle) battle.
- A subtype so rare, only 1 in 10,000 Migraine sufferers ever experience one.
- So rare most headache specialists and neurologists have never seen a true case or have experience treating
- A subtype which cannot be treated with traditional Migraine medications and methods as those cause an increase stroke risk in HM patients.
- A subtype which presents exactly like a stroke, with no way to tell the difference, except Hemiplegic Migraine patients return to their baseline skills when the attack is over and stroke patients have to engage in rehabilitation.
- A subtype with very limited supports and medication options for adults, let alone for a preschooler.
The neurologist gave us this letter for his school and our hearts broke:
"Our current leading diagnosis is frequent Hemiplegic Migraines, occurring several days a week, and causing significant disability when they occur.
...He will have difficulty ambulating and, due to his developmental age has a hard time understanding his physical limitations during these events and is at high risk for physical injury."
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