4q33 Deletion a rare disorder caused by a partial deletion of chromosome 4.
My son is 29 years old this Sept. When he was born and diagnosed, we had no information on this. His deletion is also somewhere near the 33 band (4q-). He is also autistic. If anyone would like to ask questions, I would be happy to help!
Hi I am a new member, my son is 11 years old, 4qdel, he is having a really hard time with managing his anger, any advice or experience to share with me ? I am desperate to help him and see him to be a happy boy as he used to be. Mara
Hi, my grand son has also 4q33 deletion. He is now 9. It seems condition varies - he did not have any internal problem but he has cleft pallet, over wrapping toes, pointed pinkies with double joints. 3rd grade work is getting difficult and still have hard time adjusting new situations and dealing with his emotions. I would say he is emotionally immature. Since there are few of them and the condition varies so much that we have no idea what to expect. I was hoping to find older children with the same condition but so far I have not. I think we are in a same boat - lots of questions with no answers! He sees regular docs, speech therapist and in a process for behavior diagnosis.
Hi, my name is Danielle, my daughter is 8 yrs old and has a interstitial deletion occuring denovo of 4q32.2-33. I have not found many with her similiar deletion. I also have not found a doctor who will see her and just do a general workup on her. She has urological issues that we have dealt with since she was an infant and just recently have found out she has a genital malformation and thats all we were told is that it was not normal and no other information. We live in the US, not sure if any of yall do. I was wondering really if yall had any info on anything. drs, behaviors, sickness, infections, education issues. I have lots of questions with no answers.
Hello, my name is Barton. I am the father of 3 boys. Our youngest Michael, was born with distal 4q 32-34. He is 15 yrs. this month and we are so proud. He has fought hard and is doing great. At the time of his birth there were only 22 reported cases. 15 of those died before 15yrs. Back then the doctors gave us little hope. He was born with Pierre-Robin syndrome (Small jaw and large tounge), a hole in his heart and unclosed ductess vein in lungs. Double hernya, deformed hands, and elongated feet. So far, he has had 2 Fundo placations, Cleft palet repair, Exploratory sergery, witch they found his appendex inflamed and in the wrong location. followed by appendectomy. One sergery on his hand, with no success. He had a traciostomy for 2yrs. and we fed him with a tube. Needless to say my wife and I were devistated. (pls excuse my spelling) Now some good news. He is doing great. He is ADHD and on medication. To look at him you would never know he had a problem. Everyone in town knows Michael. He is a little behind mentaly but otherwise he's a BOY. Hope this little bit helps you some. Makes me feel better just talking some about it.. All in all just LOVE THEM...
My grandson is now 9 years old. He has learning difficulty especially in math. Parenets held him back 1 year that seems to help. From beginning, he had bad temper but it is getting more obvious that he need help in managing his anger and frustration as well as care givers to deal with him. I am wondering if any of you with same situation and would like to know what helped. Thank you!
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