15yo with rapidly growing brain lesion

[UncleBen]

My nephew is a 15yo male.  He has battled a neurological disorder since birth that has affected his vision and coordination.  His condition was pretty static for most of his life.  He developed but has always been a little slower than the kids his age.  But he was functional enough to be mainstreamed in with the rest of the kids in his class.  He has always had a slight tilt to his head since birth due to the disorder.  It has never really been diagnosed but he has had numerous eye surgeries to try to help his vision.  In or around December or January 2008-2009 he started experiencing narcoleptic episodes.  Finally one day his mother found him slumped over the sink in his bathroom sound asleep with his toothbrush in his hand.  They took him to the ER where they admitted him into Texas Children's hospital in Houston.  An MRI showed a lesion on his brain stem.  They originally though this was an inoperable brain tumor and he may not have much longer to live.  However, an MS specialist diagnosed it as a demylenation lesion and treated him with high dose steriods (predisone 1000mg at a time).  Thinking this would show immediate results.  However his conditions worsened.  He is now experiencing difficulty breathing, swallowing, staying awake, and his motor skills are severely worse.  The only way I can describe it is that he appears extremely intoxicated and lethargic all of the time.  The doctor's are now trying to figure out if it could be a metabolic disorder.  Please if anyone has any experience in this area, any help, referrals, or reccomendations would be greatly appreciated.  The lesion is growing rapidly and has developed tentacles.  We are fearful that we are watching this outstanding gentle loving kid die slowly and there's nothing we can do to figure out what the problem is or how it can be treated.  The doctor's are confident that it's not a tumor right now due to the rapid growth but they still don't know how to keep it from growing or shrink it.  Thank you in advance for your help

[Lulu54]

Hi Uncle Ben,
I wish I had some magic answer to give you - what a helpless feeling your family must have right now watching him deteriorate before your eyes.  Unfortunately I have no answers or clues but perhaps someone else here will know somehting.

Also, be sure to post this on the neurology board and the MS expert board if you can get one on there.  Keep searching high and low for the answers.

Please keep us posted, if you can.


I'll hold your nephew and family in my thoughts,
Lulu

[Lulu54]

Here are the forums I would check-

the ask an expert neurology forum is
http://www.medhelp.org/forum_disclaimers/show/135

the general neurology forum is
http://www.medhelp.org/forums/Neurology/show/74

the MS expert forum is
http://www.medhelp.org/forums/Multiple-Sclerosis-MS/show/322

the MS forum only takeso ne free question per day, but you can post additional ones for a fee of $25.  Keep trying to get the free one in, ok?

the rare disorders forum is at
http://www.medhelp.org/forums/Rare-Diseases/show/294

Copy your question to us and post it at all of these - someone may have some wise advice.

Lulu

[Steven Y Park, MD]

Sorry to hear about your nephew. Based on your description, it sounds like his narcoleptic episodes are due to the brainstem lesion, and not primarily from classic naroclepsy. By definition, if you have a brain lesion such as what you're describing, it's not officially narcolepsy. Keep searching, work with your doctors, and hope for an answer.

[UncleBen]

Thank you for your support, encouragement, and prayers.

[Lulu54]

Please post your question at those other forums too and see what answers you might receive from others.  

our best hopes for your nephew,
Lulu