Desmoplastic Infantile Ganglioglioma

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Desmoplastic Infantile Ganglioglioma

Postby mcuijten » Wed Apr 24, 2013 11:26 am

(First of all I want to apologize for my english as I am Dutch. I will try to do my utmost to define everything as best as I can in english)

My son was diagnosed with DIG on june 22th 2011. He then was at the age of 4 years. The days before diagnose he was ill, having headages, throwing up. Alarmbells began to ring as he was not able to stand on his left leg and holding his left shouders down. An MRI showd us a, what was later diagnosed DIG, huge tumor taking almost the whole right side of my sons head.

A day later on june 23th 2011 suddenly the situation became very unsafe, not stable, my son was screaming from a headage. Neurosurgeon decided to operate immidiatly. The tumor had been removed. The neurosurgeon expected he had removed everything but during later controle-MRI there was still a rest tumor. My son recovered well from his operation, having fysiotherapy every week and at school keeping up with children of his age.

Since januari 2012 uptill oktober 2012 the rest tumor has been growing. In that period my son has had several epileptic attacks due to the fact that the tumor is located in that part of the brain where epileptic attacks are triggered. From oktober 2012 uptill now the rest tumor has not grown. However the condition of my son is getting worse in the periods (after having no problems for several months) where he is ill, having fever of very low temperature, loosing his balance (not walking straight and his left leg and shoulder not moving well) and the epileptic attacks getting more and worse in that period.

Since his operation in june 2011 he has had 3 episodes of about 2 months each where he is not feeling well. Each episode begins with him getting furious/angry very quickly, not sitting still and being noisy in the classroom and having epileptical attacks at nigths, just within 2 hours afther going to sleep. In the periode he has epileptical attacks he has temperatures far below 36 degrees, somethimes even to 34,0 degrees (normal is about 36,4 degrees).
After having the worst part of such an episode he recovers, getting more energy, epileptical attacks reduces to about once a month and he is not getting angry as fast as the weeks before, doing well at school.

At this moment neurosurgeon is considering about whether he will operate again and remove the rest tumor. He can not guarantee that the epileptic attacks will dissapear after removing the rest tumor. We have had several conversations with neurosurgeon and neurologist yesterday and the day before. It looks like there is an operation comming up in the next few months. Meanwhile I want to learn, read as much as I can about DIG.
mcuijten
 
Posts: 1
Joined: Mon Apr 22, 2013 2:55 am
Cancer Diagnosis: Desmoplastic Infantile Ganglioglioma
Relationship To Patient: Son

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