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Medics seek cure for one-and-a-half year old 'Sleeping Beauty' girl who hardly wakes up

By The Siberian Times reporter
05 June 2017

Doctors say little Anya is 'healthy' but she sleeps for days at a time; they cannot find any abnormalities to account for her condition.

By seeking publicity for her case, the family hope experts will come forward who understand her condition and can offer advice to her doctors. Picture: Ural Media Holding

Anya one day first fell into a long sleep aged around six months as she had her lunch. She dozed off in her chair, and didn't wake for almost a week. 

The day after she fell asleep her worried parents rushed her to hospital - and for a year or so she has virtually lived there as medics struggle to explain her condition.

Mother Alexandra Metyolkina said: 'How can you not think about the Sleeping Beauty fairy tale? A princess fell asleep there - and no one could wake her up.

'But our Anyutka (Anya) didn't prick her hand. I was feeding her, and all of a sudden she fell asleep.' 

sleeping beauty


sleeping beauty


sleeping beauty
'The medics established that Anya's heartbeat and breathing dramatically slow down when she sleeps.' Pictures: KP, Ural Media Holding


Alexandra said: 'At first I was afraid she was in coma, but doctors assured me that my little one was sleeping.'

On the first visit to Pervouralsk Children's Hospital, she woke suddenly and made clear she wanted food. 

'We took her home, but next day she fell asleep again and we couldn't wake her,' Alexandra said. 

For the past year, there pattern has been that she sleeps for days on end, and wakes for only a few hours. 

'It is not coma, it's normal sleep,' said her mother. 'We are now practically living in reanimation.

'After sleep she has fever, her face turns red, and she starts shivering.'

sleeping beauty


sleeping beauty


sleeping beauty


sleeping beauty
There is a condition called Kleine-Levin Syndrome (KLS), a rare and complex neurological disorder characterised by recurring periods of excessive amounts of sleep, altered behaviour, and a reduced understanding of the world. Pictures: Ural Media Holding


Doctors are keeping her in hospital to monitor her, and in the past year she has spent only four nights at home in Pervouralsk, near Ekaterinburg, in the Urals.

Anya's diagnosis is 'Hypersomnia of unclear origin' - in other words, doctors say that she sleeps too much but do not understand why yet. 

'The medics established that Anya's heartbeat and breathing dramatically slow down when she sleeps,' said Alexandra. 'But no one can explain us why that happens. 

'Doctors are telling us they don't know what's happening to Anya. 

'At first they thought she's suffering from meningitis or encephalitis.

'But checks suggest that her brain and nervous system are fine.

'Then they thought it could be because of problems with heart, but it turned out to be normal.

'There have been dozens of other checks, including those on genetic diseases, but all the results came negative.' 

She said: 'Doctors came to the conclusion that it is a beginning of epilepsy. But the tests have not proven this.'

Pervouralsk Children's Hospital, Pervouralsk, Kleine-Levin Syndrome


Pervouralsk Children's Hospital, Pervouralsk, Kleine-Levin Syndrome


sleeping beauty
'Sleeping beauty' Anya with mother Alexandra. Pictures: KP, Ural Media Holding


It is impossible to wake the girl when she is asleep. She does not go to the toilet, nor eat or drink.

Her pulse slows, and temperature falls to 35C from a normal of 37C.

By seeking publicity for her case, the family hope experts will come forward who understand her condition and can offer advice to her doctors.

There is a condition called Kleine-Levin Syndrome (KLS), a rare and complex neurological disorder characterised by recurring periods of excessive amounts of sleep, altered behaviour, and a reduced understanding of the world.

'KLS robs children and young adults of big pieces of their lives, one agonising episode at a time,' says website http://klsfoundation.org/what-is-kleine-levin-syndrome/.

This condition appears to be far more prevalent in males than females, and exceptionally rare among children as young as Anya.

'The cause of Kleine-Levin Syndrome is not known,' states the website.

Comments (18)

je peut traité le cas de anya c'est un problème paranormal contacter moi par mail :lelib338@yahoo.fr
bilel dekar, algeria
18/06/2017 01:26
0
0
Si quelqu'un peut traduire

Il faut lui mettre un collier d'oeil de tigre et attendre de voire sa réaction.

Cette petite est hyper ampathique ou electrocensible dans le monde scientifique. Elle se fatigué car elle absorbe trop les énergies des gens autour d'elle. L'oeil de tigre à la capacité d'absorber les énergies négatif. Donc à essayer !

Bon courage aux parents .
Estelle Olivier, France
17/06/2017 16:55
0
2
Bonjour moi j'ai une toute autre approche pour aider le problème est problème est relié a des blessures intérieur qui semble profonde hypersomnie semblerais bon comme diagnostique parce que sa signifie dormir a plus souvent et plus longtemps et je crois que sa pourrais être relie a la peur de vivre, peur des responsabilités c est relié a des blessure de l âme a mon avis elle c est inconscient et PT que sa viens d une vie antérieure . Elle devra travailler sur c'est peur profonde c est un manque d amour de soi manque de confiance en elle et en la vie elle a peur de faire face a cette vie la fièvre est relié a l irritation a la colère qui viens du passé elle devra apprendre a communiquer ou d exprimée ce que elle ressent elle devra s accepter et s aimer pour que son visage redevienne normal c est mon opinion bonne chance
Dominique Bolduc, Trois -rivieres quebec
14/06/2017 20:54
0
5
Si mon vécu peut aider les parents d'Anya, j'ai eu des pertes de connaissances durant un peu plus de trois ans avec des passages à l’hôpital + traitements pour un problème que les docteurs n'arrivaient pas à cerner et des séquelles jusqu'à 8 ans environs (chaque jour, basculement des yeux vers le haut durant plusieurs secondes : ça, ça inquiétait fortement mon entourage ! ). Une des particularités de ceux qui ont vécu cela, c'est que nous avons tous la même boite crânienne mais aussi, bien d'autres choses que les parents devront apprendre à décrypter rapidement de manière à ne pas fausser l'avenir professionnel de leur enfant, car il est sûr à 100 % que cela débouchera sur une TDAH prononcée.
Sisco, France
13/06/2017 18:35
0
0
To the parents of Anya ; even if you desperately need some help please check everyone out first. There are plenty of weirdos out there, like Eric Eznouses above. Only contact neuroscientists or other doctors with diplomas and an attachment to the medical world that can be proven. Unfortunately cases like this are interesting to professionals and nutcases alike. I wish you all the best!
Sara, France
13/06/2017 17:59
1
0
Ayant eu traits pour traits, les mêmes symptômes que Anya pendant 6 ans environ, je peux vous dire qu'il n'y a aucune comparaison possible avec une autre maladie, tel que la LEUCYNOSE, ça na rien à voir ! Seuls ceux qui ont vécu ce problème sont à même de savoir précisément comment va évoluer l'enfant !
Sisco, France
13/06/2017 17:27
1
0
Pour moi, ça fait vraiment bizarre de lire cet article, car j'ai l'impression de me revoir quand j'étais bébé. Moi aussi je dormais énormément, même à l'école jusqu'à la fin de la grande section. Lorsque les autres enfants apprenaient, découvraient, s'enrichissaient de nouvelles choses instructives pour le bon développement de l'enfant, moi je dormais et lorsque l'on essayait de me réveiller, les instituteurs ne réussissaient pas. Je me réveillai après de longues heures de sommeille. Ce qui est curieux, c'est que si je passais mes journées à dormir à l'école, je me souviens de nombreux moments de cette période de l'école maternelle !
Sisco, France
13/06/2017 17:16
1
1
Pour moi, ça fait vraiment bizarre de lire cet article, car j'ai l'impression de me revoir quand j'étais bébé. Moi aussi je dormais énormément, même à l'école jusqu'à la fin de la grande section. Lorsque les autres enfants apprenaient, découvraient, s'enrichissaient de nouvelles choses instructives pour le bon développement de l'enfant, moi je dormais et lorsque l'on essayait de me réveiller, les instituteurs ne réussissaient pas. Je me réveillai après de longues heures de sommeille. Ce qui est curieux, c'est que si je passais mes journées à dormir à l'école, je me souviens de nombreux moments de cette période de l'école maternelle !
Sisco, France
13/06/2017 16:55
0
1
As suggested in the article, this is most probably KLS. Lithium may be a reasonably good drug to prevent the next episode.
Bo, israel
13/06/2017 15:31
0
2
(2/2)
Reeducation means repeating a procedure, during a well chosen protocol with the baby lessoning (with headphones) a head to a special musique with special sound encrypted to influence the brain working.
some special sounds (theta wave or delta) can force some people to sleep juste after few minutes et there are also special sounds who can force you to be really awake, lucide with a full attention (Alpha wave).
Usually the doctors who studying this kind of subject are researchers in consciousness domain or all about modified states of conscouness. Maybe the brain of this little princess is blocked in a theta wave mode and can't easily change to wake in alpha wave mode.
I hope that maybe this information will be a way to help the parents and Anya.
Larby, France
13/06/2017 10:07
1
2
The first part (1/2) of my comment didn't published,
here it is again :

Hi,
Maybe you can try to meet a brain wave specialist (neuroscience)and try a reeducation of the principal waves of the brain with special sound, Theta wave, Alpha wave, Beta wave, Gamma wave etc ...
You can find a lot of video presentation about this subject in youtube.
For exemple : https://www.youtube.com/watch?v=kKwD7oYnYmM
The brain is like a radio reciever and is very sensible to some frequencies
Larby, France
13/06/2017 10:06
0
1
(suite)

Reeducation means repeating a procedure, during a well chosen protocol with the baby lessoning (with headphones) a head to a special musique with special sound encrypted to influence the brain working.

some special sounds (theta wave or delta) can force some people to sleep juste after few minutes et there are also special sounds who can force you to be really awake, lucide with a full attention (Alpha wave).

Usually the doctors who studying this kind of subject are researchers in consciousness domain or all about modified states of conscouness. Maybe the brain of this little princess is blocked in a theta wave mode and can't easily change to wake in alpha wave mode.

I hope that maybe this information will be a way to help the parents and Anya.

Larby, France
13/06/2017 05:21
1
1
URGENT !! Si quelqu'un peu traduire et relayer l'information. La fille d'une connaissance à présenté les même symptôme que Anya. La maladie est la "LEUCYNOSE"



Je dit pas que c'est forcement ça qui touche Anya, mais puisque c'est les même symptôme ca peu valoir le coup de transmettre l'information à ses médecin.



J'ai également posté le message sur tweeter

https://twitter.com/sim_drey/status/874365275721916417



N’hésitez pas à me contacter via tweeter si vous avez besoin des coordonnées.
Simon RAMBEAU, France
13/06/2017 04:05
2
2
Did you tryed sleep her seated (+ refresh head) ? Fooding changes ?
xavier, france
13/06/2017 01:08
1
1
Read about similar case of Connor Price who is 12 from England. If the parents of this little girl want to contact his family they could contact The Mirror (newspaper) in the UK. Maybe they could support each other through Skype or something. It might help them to know that they are not alone. Also you never know but perhaps the story of sleeping beauty comes from someone like this, many fairy stories have a basis in reality.
Maree, Scotland
09/06/2017 12:03
1
1
12

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