Interstitial Deletion 2q33.1-35

[Tracey Gibbons]

Our Son James is 2 and a half and is now walking around furniture. He is yet to try and walk on his own however I am sure he won't be so frustrated once he does this. James is not talking yet but says a few different sounds which may be Hello. He has a really bad habit of banging his forehead very hard on the ground. He seems to do this for attention and has a permanent bruise and lump. Has anybody had this problem. I don't know how to stop it. James enjoys throwing balls and looking at pictures on the cover of books and video covers, etc. He has a one year old sister and they fight over biscuits and dummies. James also tantrums a lot when eating. We have been to a feeding clinic but they cannot give any reason why he may do this. This is also extremely frustrating. He is still only 8kgs so is very small for his age. He can clap his hands.

Stephanie good luck with Kane hope everything goes well.

That's all I can think of at the moment, hope to hear from anybody who may have the same feeding and head banging problems with some ideas on how to stop this.

Regards
Tracey

[anette Howell]

Hi there, my son has a micro deletion on chrom 2 q21.2-22. He also has cerebral palsy, which we believe was due to a birth injury (MRI showed brain injury occurred). Sean also has epilepsy, which is the worse of all his issues because his seizures last very long. Last June he stopped breathing during a seizure that lasted over an hour long. He is truly a miracle. I have two older boys and just had another son in November. None of them have this deletion as far as we know.(They did not have any medical issues so we did not have them tested)Sean is a wonderful and joyful little boy who enjoys playing with his books, toys, brothers and watches movies that he loves to watch over and over again. Sean is crawling and pulling to his knees. He can only walk supported and we still have hope he may walk. Sean does not speak. Before he started having his seizures he was saying mama and baba. Now he makes some sounds but we rely on a regular routine to figure out what he wants. It seems he understands, at times, when we talk to him. He can sign more and uses this for everything. Sean also throws his head around and head butts. I also believe this is behavioral . He does this alot when he is upset and when he is excited. He is a very loving boy and I adore him. I did, however, underestimate his ability to understand and thought his baby brother would not cause any jealousy. I was so wrong. His personality now has changed to very clingy, whiny and seems irritated at the presence of my youngest son. I hope in time this will change and that he will grow to like him as he does his friends at school. Two months ago our neurologist told us that Sean will probably not speak. This was devastating but I will not give up hope. This is the same Doctor that told us, on our first two visits with him, that Sean did not seem to be affected by the chromosome deletion and was only delayed due to his chronic illnesses. This changed as signs of CP became apparent. I am not in denial any longer but I still have prayer and hope. If you ever need to talk please email. I hope your son is doing well. anette Howell [e-mail]

[David in Australia]

Our son (q37.1 deletion) banged his head so often (generally accidents due to lack of co-ordination), that we bought him a small padded football (or grid iron to you probably) helmut - you know the ones made of leather/vinyl that are adjustable. Its not the greatest fashion accessory, but it really helps with the brusies round home. Hope this is of some use.

[josiah02]

MY DAUGHTER HAS THE EXACT SME DELETION 2 Q33.1-Q35. SHE IS NOW 4YEARS 4 MONTHS BUT SHE WAS WALKING ABOUT A YEAR AGO SHE DOE NOT BANG HER HEAD BUT SHE SUCKS ON HER HANDS TIL THEY ARE RAW AND HER FACE RAW TOO. SHE ALSO DOES NOT TALK BUT MAKES SOUNDS WE THINK LIKE "BOO" "MORE" BUT IF SHE WANTS SOMTHING IT IS REALLY HIGH PITCH SCREAMS ALWAYS. SHE ALSO LOVES PICTURES ON BOOKS IT IS ONE OF HER FAVES AND SHE WILL PULL EVERY DVD OUT TO STARE AT THEM. SHE HAS HER FAVE MOVIES AS WELL BUIF ITS NOT ONE SHE LIKE SHE WILL SCREAM TIL YOU PUT ONE OF HERS IN. SHE ALSO HAS TANTRUMS WHILE EATING I THOUGHT MAYBE FROM BEING CONFINED OR NOT GETTING WHAT SHE WANTED. SHE IS ALSO VERY SMALL 4 YEARS OLD ONLY 25LBS. SHE ALSO HAS EPILEPTIC SEIZURES TONIC CLONIC WHERE EVERY TIME SHE STOPS BREATHING THEY HAVE ALL BEEN UNDER 3 MINUTES KNOCK ON WOOD BUT STILL SET HER BACK EVERY TIME. SHE IS ON KEPPRA A ANTI SEIZURE MED IT SEEMS TO HELP THEY TEST HER LEVELS ALL THE TIME TO KEEP IT CONSISTANT.
LET ME KNOW WHATS NEW.I HOPE TO HEAR FROM YOU ALL SOON.

BEST WISHES FOR YOUR LITTLE ONES

BOBBI

[Tanya M]

Hi,

I am a physical therapist who just evaluated a developmentally delayed 9 month old infant today who has partial deletion of chromosome 2 and partial addition of chromosome 13. She is a pleasant baby who has some feeding /swallowing issues, low muscle tone, poor eye tracking and difficulty sitting up. She can roll but not crawl and seem to have some sensory integration issues. I found this website looking for more info. on this disorder so that I can better help her. I do craniosacral therapy and visceral manipulation and will let you know if she makes progress with this form of therapy to help her with her motor and neurological delays and digestive/bowel function. I have seen autistic and other children with sensory integration issues also bang their heads. Sometimes they are trying to relieve intracranial pressure with the external pressure, these children usually get some relief with cranial therapy. Sometimes head banging is a copeing mechanism if they are excited/overwhelmed my too much stimulation. I recommend a book entitled "The out of sync child" which is about kids with sensory integration issues. There may be some techniques and explanations that you will find useful. There are also some Occupational therapists that specialize in treating children with sensory integration problems. I will recommend this site to my patients family as well as suggest they try sign language to help with developing communication. I will also let you know if anything I do helps so you may look for similar therapy in your respective regions. My prayers are with you all through your struggles and joys. I have seen God's love shine through most often in the eyes of a special child. KEEP FAITH. They will teach all of us how to better love.