I am a psychotherapist who has a patient who has been diagnosed with "De George Syndrome". I am looking for information concerning the symptoms and the management as well as prognosis of the syndrome.

AWC59

Hi,

The not speaking, we went through that. It took two years with a speech therapist. Our son can go almost 48 hours without sleep and still function, then he crashes. Its been like that since he was little. E. would lash out when he was upset, we never had the bumping of the head, but he would rock, and rock to the point we would get dizzy.

We have gone through motor skill problems, he would tip to the left when he walked, sometimes falling over. If you can manage it, make sure that her hearing is tested and if she is old enough her vision. E's hearing was good, but we found his vision was so poor that what we thought was his motor skills getting worse, was that he was not seeing very well. For years he walked on the balls of his feet. Children with this problem also have problems with their red blood counts, sometimes they drop to unhealthy levels. The problem can involve the spleen holding the red blood cells. E. becomes fatigued and you can pick it up right away.

So many things come with this package, and each group is different.

When they did the original test did they also do a physical examination, like measuring her head, the bridge of her nose, the shape of her eyes and the position of her ears. The Doctor that first picked up the problem was a psychologist who specialized in children. The benefit is that he did a rotation at Hershey Med. Ctr in the genetics department and noticed the anomalies just watching our son and speaking with him. Needless to say he pointed us in a different direction away from his field. When they do the test again, question that it is a test specifically for chromosome damage. The test can only be done by specific certified labs, and the results take sometime. We have only one lab in our area and it is within a hospital setting, after that the next place was Philadelphia or New York. I don't if any of this helps, but I will certainly add you to my buddy list. We have been through alot and maybe something we have encounter will help you and others in this group. Just look at that adorable face you have there with you, they can tell you alot of things without even talking. Their movements, their fascinations with things, the things they only touch once and will never again. Oh yes, they have an adversion to certain materials and foods. E will not touch or wear material similar to polar fleece, no jello, nothing carbonated. If you watch you will see reactions. Like I said, a whole gambit of things. Let me leave you with this, E is now 17 going into his senior year in high school, plays HS Soccer, the guitar and will be learning to drive soon.......are we over it all, never, but there is light when you know what you are dealing with. Not the ADD or ADHD or any of the cover all basis labels. Push ahead until you get a definitive answer from the doctors.

angelcin07

Just wondering how old he is. We have an 11 month old with like not full degeorge. He was born at 33 weeks and has a heart disease. In the future he will have either one or both values to the heart repaired. He had heart surgery back in Jan. so the balloons would not be a waste of time. He had two done before this surgery. He sees the heart dr every few months. We have noticed his hearing is not what it should be. He goes to the ENT dr. this coming week. You can snap your fingers and he really does not respond to it. If he is not facing you or can not see you and you call him does not act on that either. He is behind on many things like sitting up alone, crawling, walking. One thing he does have though is 7 teeth. His sisters didn't have that at this age.