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Alexia Tamara Godo - Batten disease(Argentina) Post on September 11, 2009


Name: Alexia Tamara Godoy

Sex: Female

Age: 12

Country: Argentina

Diagnosis: Batten's disease

Beginning Treatment Date: 2009-07-22

Discharge Date: 2009-09-03

Medical History:

Alexia is a lovely girl who was perfectly healthy up until 4 years old. Her father showed us several photos of her. In some of the photos she wore dresses that made her look like a princess and was seated at a table eating a birthday cake. She looks so lovely in these photos. At roughly 4 years old, Alexia was presented with walking difficulties and an overall weakness in all four limbs. She gradually reached the point where she could no longer walk and became bedridden. She was unable to speak, had difficulty breathing, as well as difficulty swallowing. This was accompanied by several epileptic seizures every day.

Before Treatment:

Alexia is 12 years old at present. Although she had undergone several treatments between the ages of 4 and 12, her condition continued to get worse. She had completely lost her motor ability. She could no longer take care of herself; she had difficulty standing, walking, and was confined to her bed. She had lost a lot of weight and her face was pale. She had suffered a lung infection; developed breathing difficulties and aspirated sputum every day. She had no response to light stimuli. She had difficulty eating by herself as well as problems swallowing and had to be fed through a feeding tube. Her vision was almost completely lost. She lacked the ability to react to external stimulation, poor mental state, and any facial expression was very faint. The tonic spasms in her lower limb muscles were very serious and the sagging of both feet was obvious. Both legs had abnormal flexion deformity. Both of her hands would seize up into a tight fist. She had several epileptic seizures every day and the seizures persisted for a long time, each episode. She had used antiepileptic seizure medication for a long time but there were no obvious improvements to her condition.

Treatment:

Alexia received a complete examination and was diagnosed with Batten's disease. She was given treatment in order to expand the blood vessels, given anti-epileptic seizure medication, medications to nourish the neurons, and had the neural stem cells activated. This was combined with rehabilitation. Because of her lung infection she had a recurring fever. After she was given anti-inflammatory medication and expectorant her condition improved.

After Treatment:

Alexia's infection has been controlled. The respiratory sounds in both lungs is clear, breathing ability has improved noticeably. At present, her weight is 31kg. Her state of mind has improved greatly. Her reactions to external stimuli have improved and she is more sensitive to sounds, and can turn her head in the direction of the source of the sounds. Her vision is better, with increased resolution, and can follow the movement of the people around her.  

When she heard her favourite music, she could make a few sounds to express her joy. Her father told us, Alexia's eyes became bright and was able to look directly at him after the fourth injection of stem cells. From this point on, her facial expressions have become more vivid and she smiles frequently. She can shake her head and use her hands to remove food out of her mouth that she does not like. She is also able to remove the atomization tube. After the treatment, her muscle spasms were reduced and the muscles throughout her body were relaxed. The muscle spasms in both legs have been noticeably reduced. The muscle tone in her legs decreased to almost normal levels. The number of Alexia's daily epileptic seizures has greatly decreased and the length of time of the attacks has decreased as well. Furthermore, we were able to successfully decrease the dosage of the anti-epileptic medication.



Related Information:

  • Yana Ruban-Batten disease(Kazakhstan)Post on May 30, 2011   
  • Santiya -Batten disease(Argentina)   
  • Benjamin - Neuronal Ceroid Lipofuscinosis (Chile) Post on November 27,2010   
  • Maresu Luis Eduardo-Batten disease(Argentina) Post on 2 February,2010   
  • Alexia Tamara Godo - Batten disease(Argentina) Post on September 11, 2009   
  • Evangelina Sharashkina--Batten disease( Russia ) Post on May 25, 2009   
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