Hello, I am new to this forum. My son Elijah was diagnosed Oct. 2009 and is not scheduled to genectic until June 2010. He is 18months old. He is dev. delayed at around 6-8 months old as of Feb. 2010. He is currently not walking, talking. Lately we have been noticing uncontrollable spasms. He goes to get an EEG done on Tuesday next week. My husband and I have several questions about this diagnosis but the one that we want answered more than any other is what our sons future? Will he ever walk or talk. Is our journey just begining. I am so frustrated with the ped. doctors here because they have absolutely no clue about this and they chop everything up as another symptom. What should we do and to top things off because he is our foster to adopt son there are so many htings we can't have done because we have to wait for DSS to sign off on it. We feel like because they are being slowfull he is suffering and going through some of these things longer than he should have to. Also what do you guys think about vaccines are they a good idea or not?

My son is going to be 2 soon. He has the same diagnosis. He began walking around 18months, he had low muscle tone but the PT worked with him and his motor skills have improved so much! Your son will get there at his own pace but I would encourage you to use any community resourses that you can, as soon as DSS will sign off. Although our son is not yet talking he has been making improvements with his communication skills, he also has speech therapy. He is home with me all day and not in daycare so he doesn't get as much interaction with other kids as I would like so that may also contribute to him not talking. He was born with a cleft palate, which is repaired now and fine. At 6months of age they found a benigne brain tumor (DIG) in him which was completely removed. He may also be a little behind in his speech because he spent a month in the hospital then and had a lot of catching up to do. Despite all this our son is doing great and noone we meet can ever tell he has a "syndrome" or had a brain tumor, etc. Like I said he is behind in talking, however he is improving. Just keep working with your son, he may be behind now but he is still so young and has pleanty of time to catch up. Feel free to email me if you ever have questions or want to chat. good luck with everything and stay positive. amykirk1110@verizon.net

Thank you so much for all the encouragment. Elijah is doing a lot better now he actually just started walking and is still not talking. But we are now just waiting to go to his Genetic appointment. He has also has to see a nephrologist due to dysplasia. Not really sure what this is going to result in. I am just glad that we have a support system in rareshare that truely understands what we are going through as the parents and what Elijah is going through as the child and patient.

Hi all, New here. My son Jared has 22q11 micro dup. We were devasated when we found out but we took a proactive approach. 1. he is the same child he was yesterday 2. there is very little research on this so no true plan everyone should follow. CHOP has a clinic but said he did not need to be seen by them until he was 13 3. the ceiling is the limit and when we hit it we will stop pushing. With that said here is where we are. First year was very rough - reflux, heart problem and lots of crying. At 12 m he was thought to be deaf! After a BEAR (sp?) test it was found he had all the internal networks to hear and tubes may clear the problem and they did. He was fully tested at 2 for all abnormalities assocaited with 22 and all is well minor heart problem found and it repaired itself within a year. Jared is now 7 years old. Until about 4 yr he had overall delays. He has had speech therapy since his was 1 and Ot until he is 5 1/2. He had many sensory issues as a small child today he has a few but I am good an making them appear normal. He went through early intervention and preschool disable program in our local school district. At age 4 1/2 I decline his IEP because his teachers were telling me all the things he could not do. I enrolled him in private prek through 8 school and he is flouring there. He is seen as a typical kid but academically he is at the bottom of the pack. He struggles in school with reading and writing but does excellent in math. This year I had him reclassifed and he started speech in school to address his auditory processing delays. He school was unaware of the 22q until this year when I turned over his neuro developmental records. He has behaviors but nothing off the richter at this point from the outside he looks like a typical boy with a short temper -- I know it usually due to sensory concerns (other kids in his space, too loud etc) and we are addressing them. This year his neuro recommened trying ritalin (Jared is not ADD or ADHD). She says there are studies that show it helps with auditory processing. We place him on the med for a 4 wk trial with out telling the school and at the conference they informed us how much he has improved over the last month so I guess it works for him. We removed him from the med for the summer though. We are also experimenting with The Listening Program not sure if it is or is not having a positive effect but no negative either we are currently on week 13 of the 20 week program. That is a quick summary. Jared newest accomplishment he was able to swim in deep water with out a life vest on. He has known how to swim for approximately 2 years but refused to lose the vest. Yesterday I insisted it come off. I required him to swim 3 time from the deep end to the shallow end with me at his side -- he cried he yelled but he made it each time. After 5 minutes of self calming he decided to practice some more by himself. Today he boasts that he taught himself to swim yesterday and will even jump off the diving board without a vest on. AAAH the beauty of sensory issues!!!!