3 year old has never slept!

[shadowraiths]

Thanks for this info, LR. I'm not even remotely familiar with Arnold Chiari Malformation, though I would expect to see some sort of physical signs for someone who has not slept for 3 years straight. As far as Fatal Familial Insomnia? From my read, the onset of this very rare disorder is between 30 and 60 years old, with an average onset at 50 years old, and a 7 to 18 month prognosis, at which point, the individual dies. So, I'm not really sure how that particularly relates to this case.

As for this case? While this child may very well have Arnold Chiari Malformation, I am simply skeptical that he has spent all 36 months of his life awake. Again, esp considering his seemingly very alert, physically unaffected appearance. I am also skeptical wrt these parents' claims regarding his alleged behavioral problems. He is only 3 years old, after all. Yet, they claim he's had behavioral problems from birth. That claim, in and of itself is, to my mind, quite suspect. Although I may be quite wrong, this really seems to me like it might be a case of MSBP (munchausen syndrome by proxy) as opposed to an actual medical condition. And, if so, I don't see his "medical" problems going away, with the swipe of a carefully placed scalpel. But that's just my take.

 

[ckhagen]

Although I may be quite wrong, this really seems to me like it might be a case of MSBP (munchausen syndrome by proxy) as opposed to an actual medical condition. And, if so, I don't see his "medical" problems going away, with the swipe of a carefully placed scalpel. But that's just my take.

So, then what you are suggesting is that the Dr's who are about to perform experimental surgery on him, didn't do any EEGs or sleep studies (which are videotaped) before deciding to slice into his brain?

 

[LionRun]

Thanks for this info, LR. I'm not even remotely familiar with Arnold Chiari Malformation, though I would expect to see some sort of physical signs for someone who has not slept for 3 years straight. As far as Fatal Familial Insomnia? From my read, the onset of this very rare disorder is between 30 and 60 years old, with an average onset at 50 years old, and a 7 to 18 month prognosis, at which point, the individual dies. So, I'm not really sure how that particularly relates to this case.

As for this case? While this child may very well have Arnold Chiari Malformation, I am simply skeptical that he has spent all 36 months of his life awake. Again, esp considering his seemingly very alert, physically unaffected appearance. I am also skeptical wrt these parents' claims regarding his alleged behavioral problems. He is only 3 years old, after all. Yet, they claim he's had behavioral problems from birth. That claim, in and of itself is, to my mind, quite suspect. Although I may be quite wrong, this really seems to me like it might be a case of MSBP (munchausen syndrome by proxy) as opposed to an actual medical condition. And, if so, I don't see his "medical" problems going away, with the swipe of a carefully placed scalpel. But that's just my take.

You're welcome, shadowwraiths. The only reason that I compared Rhett's case with Michael's was to offer info that showed that in some cases a person lose the ability to sleep. It just sounds so impossible for some to believe that, understandably.

I understand your skepticism; this is an unusual case. Just because I think that something may be true doesn't mean I believe it is factual. I am a major facts monger, but I am also open minded.

I wonder if the parents simply aren't describing things in a way that is understandable. A young child can have signs of behavioral issues at a very young age, and long term sleep deprivation can result in profound symptoms for children and adults. I wonder if they meant that Rhett initially didn't seem to develop typically when it came to what other children do at the same age.


I also wonder if it is possible that Rhett does sleep, albeit for very short periods of time. It may have been that the brain that slipped through the opening occurred gradually and that he began sleeping for less each day over time. So, in the long run it has not been a full three years without sleep.

Or, is it possible that for some reason a very young child can live for longer if deprived of sleep than an adult? There may be little info on this because the very rare Fatal Familial Insomnia occurs in adults between the ages of about 30-60, generally. I would think that a child would suffer more and not last as long when sleep deprived, though. This is because healthy adults need less sleep than children. But, who knows?

I think that if this young boy is scheduled for major brain surgery that the story is true. I doubt a team of surgeons and hospital staff would be performing any procedure, especially major brain surgery on any person, especially a small child without it being warranted.

With Munchausen Syndrome by Proxy the person either makes their victim sick (i.e. shoots them up with urine and feces, smothers the victim to the point of unconsciousness or death, etc...) or the person tells tall tales about false symptoms that the victim had without actually physically hurting the victim. But, I think it would be very difficult for either of Rhett's parents to find a way to force the child's brain through the spinal column. And, I think that the symptoms that Rhett reportedly has fit with the brain stem and/or the hypothalamus being compressed.

 

[Boyz_Mum]

Before my surgery for Chiari type 1, sleep didn't come easy, I would awaken several times a night and nearly gag to death in my sleep. That is what it felt like to me. The neurosurgeon explained that the gagging and choking sensation were caused by the Chiari and that I was pretty lucky to have waken up at all. Apparently, you can just pass away in your sleep with the Chiari malformation. My herniation of the brain is still there, but I no longer have the first vertebrae up near my skull. They removed that and "shaved" the second to make room for my droopy cerebellar tonsils. Chiari type 1 is a rather common thing BUT the size of the heriation and being symptomatic is when a doctor will usually order the MRI to diagnose. (My herniation was the biggest that my neurosurgeon had ever operated on and he had only performed about 50 of these types of surgeries in the 10 years he was at a major hospital in Detroit.) And yes, the lack of good sleep definately made me half crazy, as well as the MD who prescribed me every drug known to man because he was convinced it was "all in my head"... it was all in my head and drooping down into my neck! I wouldn't want to do it all again, but NOW being able to sleep for a whole night without waking up 20 times and no headaches made the surgery well worth it!

With Chiari type 2, the brain malformation is usually found in early childhood, such as with this little boy. Type 1- usually not discovered until a person is in their 30's. I feel badly for this little boy and his family, and pray that he has the surgery and it's successful.

There is a website about a little girl and her battle with Chiari:

http://www.baylieforbrains.com/

(The website has pictures and stories, the little girl has been raising money for Chiari research and is quite an inspiration.)

 

[JBean]

They have done many sleep studies on him. This video says he sleeps a couple hours every night.

http://cosmos.bcst.yahoo.com/up/player/popup/?rn=3906861&cl=7757591&ch=4226723&src=news

 

[JanetElaine]

Boy sleeps for first time after surgery

A 3-year-old boy from St. Petersburg, Fla., has fallen asleep for the first time in his life after doctors performed experimental surgery to fix a rare brain condition.

http://www.local6.com/news/16276040/detail.html

They removed pieces of bone from his skull and spine.

 

[Boyz_Mum]

Boy sleeps for first time after surgery

A 3-year-old boy from St. Petersburg, Fla., has fallen asleep for the first time in his life after doctors performed experimental surgery to fix a rare brain condition.

http://www.local6.com/news/16276040/detail.html

They removed pieces of bone from his skull and spine.

Bless his heart! I hope and pray that he doesn't need many surgeries for this. I also pray that his parents are able to sleep without fear in the future.

Thanks for the update JanetElaine.

 

[LionRun]

Boy sleeps for first time after surgery

A 3-year-old boy from St. Petersburg, Fla., has fallen asleep for the first time in his life after doctors performed experimental surgery to fix a rare brain condition.

http://www.local6.com/news/16276040/detail.html

They removed pieces of bone from his skull and spine.

JanetElaine, thank you for the update!

I hope that Rhett can now have a happy and healthy life.