My teenage son is now almost 4 yrs post BMT for ALD. He continues to be well and very active with stable MRI's, he copes very well with his Addison's. He has been experiencing nightmares/bad dreams about how things might have been if he had not had a BMT. They are always the same... He falls out of his wheelchair and people just walk past him, no one stops to help. Does anyone else experience similar? Could counselling help? Thank you in advance.
Nightmares: My teenage son is now... - Leukodystrophy Su...
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Nightmares
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Hopeforthefuture
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Must be a difficult time for you all and yes whilst he is healthy there is always what if's!! I dream or wake thinking I can walk normally then reality kicks in, in the gut!!
Believe counselling will help so if you can get this then go for it.
TalKing about it must help and would encourage him to talk about his feelings on a day to day basis, how he feels before and after dreams and keeping a diary is always good.
Difficult with such a rare illness as most people do not understand what you have and are going through.
Good luck Sue x
Hi hopeforthefuture,
Thank you for getting in touch. I am really sorry to read about your son's nightmares.
We have started a Patient Liaison Service, if you would like to speak to someone in more detail. Please feel free to contact Kathy Hemestretch by email to kathy@aldlife.org.
Thanks,
Minesh
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