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International Organization of Glutaric Acidemia

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Cristobal PDF Print E-mail

The following is a rough translation of a letter written in Spanish sent to IOGA from Raul Villanueva -father.

My son Cristobal has a normal life as any child  his age. He is 1.1 meters tall and weighs 26kg. Cristobal attends preschool and has almost normal physical and intellectual development.

It's been 6 months since they changed his diet from special food to normal food after showing normal levels in a blood test done by Dr. Goodman. We have doubted the diagnosis of GA1, beside the medical exams when he was 7 months old and the symptoms and signs in his body were identical to the ones of the other parents that had the unfortunate experience. Cristobal grew until he was 2yrs, 8months under extreme care in a routine of feeding and medicine. His development was very slow but reached his normal level finally after much help. Through our search to learn more about the sickness of our son to reduce dangers, we made many contacts/inquiries all around the world, especially the USA. We took Cristobal to Dr. Goodman and Dr. Morton to carry out new and more advanced exams. Prior to this, Dr. Goodman asked us to send a new blood test, the result was normal, hardly any gene change was found and that told us that we could give Cristobal a normal diet.

The doctor couldnt give us an explanation because the previous exams didnt show systemic activity and now they did, he said the he would like to continue invesitgating Cristobal's case.

Cristobal had well known symptoms and effects for the last 34 months aprox.  and afterward they rapidly disappeared, but his development-principally intellectual was very slow and delayed in relation to other children his age. After 36 months his learning was improved greatly and our worry lessened to know that it was past. Because of that we prepared our trip to USA that never materialized because Dr. Goodman decided it wasnt necessary. Our doctor in Santiago de Chile also didnt have a clear explanation of how Cristobal could have gotten better or it became dormant. We monitor very closely Cristobal's development, primarily during his times of common illness that affects him. Something very important is that we never left his fever go above 38degrees C however we can, because when sickness manifests itself at an early age, these periods of fever.

 
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