Saturday, August 24, 2013

Hemispherectomy: Cut My Son's Brain In Half? No Way .... Unless


I am not a neurologist, neurosurgeon or medical doctor of any kind.  I am not a psychologist or a certified behavior analyst.  I am a lawyer and a father of two sons one of whom has a severe autism disorder, profound developmental delays and ... in recent years has suffered a number of seizures including absence seizures and grand mal or tonic-clonic seizures.  He also suffered a life threatening adverse reaction to one of his anti-seizure medications.

With all that I can still not even begin to contemplate, with all the debates and lack of scientific confirmation of cause or cure that exists in the autism literature I have read over the past 15 years, the thought of surgeons cutting my son's brain in half. I am absolutely NOT second guessing the parents who have approved such surgery for their children.  I assume their children's seizures are much worse and much more frequent than what my son has endured. I believe the process is a last resort and is considered when severe seizures are identified as resulting from a specific location in one hemisphere of the brain. To those whose children have received a hemispherectomy I wish their children continued and total recovery and life improvement.

Apart from the kick to the groin that results from even contemplating such a remedy I am unsure from what I have read that the science of this radical procedure is solid.  I am aware that there are reported instances of success, and confirming studies,  as set out in the NBC News article "Taking out half a kid's brain can be best option to stop seizures, research confirms".  On the other hand there are also doubts about the process as set out in the Medpage Today article "Outcomes Mixed for Brain Surgery in Epilepsy".

I am not pretending to have any expertise whatsoever in assessing this medical procedure to deal with epilepsy.  I have advocated for many years for evidence based interventions for autism disorders because of my son's autism and have looked for the most authoritative guidance from genuine autism experts to do so.  I am simply trying to come to an understanding of epileptic seizures and possible treatments and came across this information about Hemispherectomy, literally surgery to remove half of a child's brain.  As a reader can probably tell, I am surprised, very surprised that such a procedure exists today and I understand that other people have faced these serious challenges before with the guidance of medical experts.  

If my son's condition worsens perhaps I would have to get over it and contemplate this option. Right now all I can say is no way! But .... I know I have probably not seen my son endure what other parents have seen their children endure.  I hope I am never forced by circumstances to make such a decision in my son's case and I admire the love for their children and the courage of the parents who have had to make such decisions. 

The Hemispherectomy Foundation web site is available to provide the information, child and family impact stories, and balanced perspective that are lacking in my emotional reaction to learning of this process. Personally I will continue to read more on this important subject.  If the day ever arrives that this procedure is recommended and necessary to help my son ... I hope the science is clear and I hope I have the courage to proceed with his best interests in mind.

3 comments:

farmwifetwo said...

1. There was a child that had speech with my youngest that was born missing one side of her brain. At 3 was doing amazing. Walking, talking etc. If you hadn't known.... you wouldn't.

2. They have been cutting the brain to deal with epilepsy for years. I remember reading about it long ago.

3. These are people who's brains never stop seizing. When you can't function, can't live, can't... sometimes drastic measures is all you have left.

We finally have our EEG appt, we go in mid Sept.

Roger Kulp said...

I do agree with you that the idea of cutting out part of the brain smacks of the bad old days of frontal lobotomies.I don't know much about cortical dysplasia,or Sturge-Weber Syndrome.These are serious malformations of the brain,that may have no real treatment.

I was very upset to see pediatric stroke listed as one of the indications for this surgery.As you know,I have cerebral folate deficiency,and am a compound heterozygote for the c677T and a1298c MTHFR mutations.I also have at least one MTRR mutation.Being a homozygote or compound heterozygote for MTHFR,is a very high risk factor for childhood strokes.

http://www.sciencedirect.com/science/article/pii/S0049384801002262

http://www.ncbi.nlm.nih.gov/pubmed/21270470

http://www.ncbi.nlm.nih.gov/pubmed/16814086

I had both seizures and stroke like episodes for many years,that no doctor could ever find a cause for.I once had so serious a reaction from an antiseizure drug,that I never took another one again.It was a combination of leucovorin and betaine in particular that stopped my seizures cold,after going on for decades.

Seizures due to CFD come under the umbrella of metabolic seizures.Metabolic seizures are considered seizures,but not truly epilepsy.

P E Norris said...

It's an incredibly easy decision to make and one I had to make in the past year for my son. He has CD in one hemisphere and had hundreds of seizures a day to the time he was 6 months old. When you boil all the emotion away from it, you come to these choices.
1. My child will continue to sieze after every known pharmacological treatment and never walk, never speak, and be completely dependent his entire live
2. Have this operation done, risk a 1-3% mortality chance and have a 75% chance at seizure freedom and a 95% chance of significant reduction and give him the chance to live a life.

It really is an easy choice.