Peter Lively 2 - Ellie seizure - infantile spasm.mov

Here, Ellie is having a 'spasm' seizure. She often has these in the mornings and has had the condition since April. Medication isn't fully inhibiting her seizures (obviously) and as such, we're being advised by our Neuro-Surgeon and Neurologists to consider a hemispherectomy for Ellie.

A hemispherectomy is where they separate and/or remove the half of the brain causing the most seizures; in Ellie's case, the right half. I most cases the surgery is successful in dramatically decreasing seizure activity, if not eliminating it entirely. However, it also will case hemiparesis (motor weakness) on her left side and eliminate her left field of vision. This may not matter as much, though, as she is already weak on her left side and is also legally blind.

A little context:

A month after Ellie was born she suffered a hemorrhage from an until-then unknown aneurysm on the right side of her brain. This caused a massive stroke and put her in the hospital for two months. She very nearly died several times, but pulled through. However the right side of her brain was severely damaged by the stroke, hence the weakness on her left side. She developed cortical visual impairment from the damage making her functionally blind. Hydrocephalus and Brachocephaly also followed leading to the need for a shunt in her brain relieving the ongoing fluid pressure and the pink helmet to reshape her skull. The brain damage and subsequent seizures cause her uncontrollable vomiting while impairing her ability to eat, leading to the g-tube.

The reason our doctors so strongly urge us to do the hemispherectomy is that there's a good chance the surgery, by eliminating the seizures, would prevent further cognitive loss for Ellie. Apparently, if the seizures, particularly the spasms, are left uninhibited it will lead to severe mental retardation, and possibly, cerebral palsy and other conditions. She may contract these conditions anyway, but the surgery, at least, could give some hope of a better future.

We're still not settled on the surgery. 'Comfort' with the removal our daughter's right hemisphere would be an to us utterly alien response. The permanence of the procedure's outcome is daunting, but what choice do we have?

Category:

People & Blogs

Tags:

• Infantile spasms
• Ellie
• Aneurysm
• dayinalife
• seizure

[clawsoshark]

I cried. my sister got almost same this

[vanillamilfshake1]

This made me cry....it breaks my heart. Is she in pain in this video?

[gbishop123]

Why is she wearing a helmet?  Is it for plagecephaly?

[rancidpetals1]

Bless her little heart.

[tydees]

I am sorry for the challenges you have faced and have yet to face with your little girl. Have you learned any more about the surgery, prognosis, etc. There are cases where children go on to lead normal lives after hemispherectomy. Being so young, her brain is so plastic (ability to change), that it can make necessary changes and compensations afterwards. However, I can imagine the information is daunting and overwhelming. I do wish you all the best for a successful outcome.