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Help a child with Epilepsy Lennox-Gastaut Syndrome
Filed under Family HealthMar 24Our 17 years old daughter Spasimira Lyubomirova Hristova is diagnosed with Epilepsy ” Lennox-Gastaut Syndrome. The illness has been found when she was only 8 months old. During the recent years she was treated with all kinds of drugs in different doses and combinations without any long term effect on the seizures. Her overall condition got a lot worse when she entered the puberty. That happened when she was almost 10. She had seizures every day, lots of them, but until puberty they were lighter and the duration of the seizure was shorter. She was having mioclonic seizures (slight movements of the head similar to nodding) usually 60-100 in a row couple a times per day and more severe seizures (with falling and loss of consciousness for about 20-35 seconds) 1- 3 times per day but every day, every single day. After her 10th year she started having the severe seizures more often and the loss of consciousness this time was with duration of about 50-60-80 seconds. There were many days when she wasnt even able to say a single word, she wasnt reacting when were calling, no facial expressions whatsoever, no smiles no nothing because of the storm of seizures and the stiff drugs that she was taking. The loss of consciousness that was going with the seizures led to a lot of injuries all-over her body. Broken nose, lots of smaller injuries on her face, tons of bruises and I mean tons of bruises, broken teeth, (she lacks some of her front teeth now and she needs expert dental help, but thats another story).
This constant storm-like state of the brain led to serious mental retardation, lack of speech (she doesnt speak at all), and serious damage to the way she moves and handles her everyday needs (she is not able to even get up from the bed or eat on herself).
She has never attended school because of her illness.
After a consultation with professor Elger in the clinic in Munich, Germany it became clear to us that surgery is not a solution because it will have no effect in her case. She has disturbances in the electrical activities in both hemispheres of the brain. Thats why the only solutions in her case should be the drugs. This type of treatment in her case is not successful or at least not in the long term. The type of Epilepsy that she has is strongly resistant to medications. They have good influence on her condition initially but after time her body gets used to them and they have almost no effect.
They only reasonable and trustworthy alternative to drug treatment to this kind of epilepsy is the ketogenic diet. This type of treatment is widely used in the USA. There is a whole branch of the food industry that is dedicated to producing Ketogenic diet products. There is a movie dedicated to the Ketogenic diet treatment of drug resistant epilepsy ” First do no harm with Meril Streep.
This diet can be applied only under a very strict supervision from expert dietologists. Here in Bulgaria we dont have such specialists. Noone here is able to apply that kind of treatment. For Spasimira to be able to try this diet, this alternative treatment that can relieve her sufferings, she needs to either go to this clinic in Munich or search for alternative in the USA. But as we are situated in Europe it will be cheaper to undergo that treatment here in Munich. Even though, she will need 2 personal assistants for the period of the treatment. One of them will be 24/7 next to Spasimira as she is not able to take care of herself and to make sure she is taking her pills regularly as the drug treatment will not be cancelled during the time she will be on Ketogenic diet. This person (most probably her mother) will have to prevent her from being injured while having seizures and also will have to attend lessons which will teach her how to apply the ketogenic diet later on when they will have to do it at home.
The second person that will have to take care of everything else: transportation, food, hotels, luggage, information, translation services ( a translator will be needed as well as neither one of the parents of Spasimira speaks German.) All this requires serious financing for example just the stay of Spasimira in the clinic in Munich will cost 450 EUR per day. Apart from that the people that will have to assist her (probably her parents) will need to have spare cash for the transport and food, hotels and translation services. The translator will have to attend the training everyday and make sure the information is being relayed correctly. As that is crucial for the further application of the diet in home environment.
After she starts to get better we will hire massagist to help her start moving her legs, hands, to start walking again, otolaryngologists to to help her start speaking again…
We plan to start a blog here on this website to keep you updated with whats going on so all of you kind-hearted people who decide to help us will be able to keep track of her condition.
God Bless you all! We thank you, the ones that help us from the bottoms of our hearts. Thank you for all the kindness and understanding. We will keep you in our prayers. Love and Light! From Spasimiras Family
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