Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Can you all let me know when your child started speaking (what age) and if they had seizures also? Where are they at in gross and fine motor skills and how are they with eating,swallowing and such? I am kinda new to this and my son 9 months old is dx with PMG or more correctly CBPS (congenital bilateral perisylvian syndrome) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 My daughter Riley is 5 and she has CBPS. Her main deficit is speech. She is fine with gross motor skills, she runs, rides a bike with training wheels, swims etc. However, she seems to trip over " air " . Fine motor wise, she can dress herself. Her main problems is her pencil grasp however she is able to write. She has not had any seizures ever. Her swallow function is fine although she chokes on chips and raw apples. Sometimes she coughs with thin liquids but never has had an aspiration pneumonia. She still drools alot and needs to changes bandannas every two hours. She just had botox this week to see if it can help with the drooling. Her speech is delayed. She is in kindergarten (in a specialized one) but is also mainstreamed. The kids in the mainstream kindergarten usually cannot understand her but if you know her well and know the context of her conversation you can usually figure it out. But if she talks fast you can forget understanding. She has a dynamite to help her communicate. She has been in speech therapy for 3 1/2 hours a week since she was 2 years old. We get 90 minutes a week via school and the other two hours are private. Cognitively she is fine. Hope this helps. christina > >Reply-To: polymicrogyria >To: <polymicrogyria > >Subject: RE: speech >Date: Fri, 12 May 2006 11:10:10 -0400 > >Can you all let me know when your child started speaking (what age) and if >they had seizures also? > >Where are they at in gross and fine motor skills and how are they with >eating,swallowing and such? > >I am kinda new to this and my son 9 months old is dx with PMG or more >correctly CBPS (congenital bilateral perisylvian syndrome) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Thank you very much for your answering. I greatly appreciate it. I am just trying to figure out where children end up that are dx with this. RE: speech >Date: Fri, 12 May 2006 11:10:10 -0400 > >Can you all let me know when your child started speaking (what age) and if >they had seizures also? > >Where are they at in gross and fine motor skills and how are they with >eating,swallowing and such? > >I am kinda new to this and my son 9 months old is dx with PMG or more >correctly CBPS (congenital bilateral perisylvian syndrome) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Trevor started saying more than 3 words, when he was 2.9 yrs old Walked at 22 months. Using untensils is very difficult to coordinate. He can use a spoon for certain foods but usually prefers foods he can eat with his fingers. He will only to eat certain foods also. Fine motor are poor.............can only scribble when coloring, just starting to emerge on writing more than just his name which is barely legible. Donna(mom to Trevor, 10 1/2 yrs old moderate PMG and BPNH and much more) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 My daughter is almost 5 and has not yet spoken at all, although she can laugh, giggle, cry and make a noise, especially when excited. She has very low tone and cannot sit, stand, walk or hold anything. She has had some seizures, lots of absents, although these are being controlled via medication (just at the moment anyhow) She sees and hears, is fed orally albeit liquidised. Dom RE: speech Can you all let me know when your child started speaking (what age) and if they had seizures also? Where are they at in gross and fine motor skills and how are they with eating,swallowing and such? I am kinda new to this and my son 9 months old is dx with PMG or more correctly CBPS (congenital bilateral perisylvian syndrome) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 To Mel and other new families of CBPS kiddos, My daughter is 6 and will be 7 in late October. Cognitively she is on target however due to severe retromicrognathia (recessed lower jaw) she could only say a few words but signed over 500 at almost 5 yrs of age. Right before her 5th birthday, we had mandibular advancement surgery and also had her tonsils removed as they were staying infected and took up 60 percent of her airway when she was well. Today she has normal expressive fluency with her speech although has speech apraxia. This is thought to be due to the neuronal migration disorder and the motor planning issues related to speech. She exhibits allot of hyper nasal ality (which I have broken up the spelling of because I am not sure if I am spelling that word correctly), but it is when the sounds come through the nasal cavity. Her main issues are all related to low muscle tone through out her whole body and seemingly absent muscle mass in certain areas. She was born with bilateral dislocated hips and clubbed feet, which have been surgically repaired. Over time, her spine developed a thorasic scolosis 87 degree curve and she just had spinal growth rods inserted on April 21st, 2006. The orthopeadic surgeron got the scolosis curve down to 23 degrees which we are extremely pleased with. Her other major issue that is related to the low tone affects her respiratory system. She has sleep apnea which only happens in stage 5 REM sleep. She does allot of very shallow breathing when asleep too. Because of this, she is on a non-invasive ventilator bi-pap machine with oxygen tapped into the line when she is asleep. She can go without the machine to assist with her breathing, but we notice if she does, that she is extremely tired the next day after not having the breathing support at night. She gets fatigued and irritable easier when she is not on the Bipap at night. Prior to her spine surgery, she was on a apnea monitor at night, but now it is hard to place a apnea belt and pads around her chest as her chest is still sore and the incision on her back is still healing. However, she still has a pulse ox probe attached to her big toe so we can monitor her saturations and heart rate when she is asleep. Due to the jaw defect, the swallowing issues and motor planning, feeding her by mouth has always been a issue since birth. Today she has a mickey g-tube and her main source of nutrition is from Pedisure with Fiber. She is able to eat some by mouth, and since her jaw surgery can handle thin liquids much better. She has never had aspirated pneumonia, but has had viral pneumonia 4 times in the last 3 years. My biggest concern for her health wise is that she seems to get sick and picks up any and everything from anyone so easily. She has had all her immunizations and then some, yet she gets sick easily and everything seems to hit her harder and take her longer to overcome. This year alone she has had two times that she has started vomiting continously and within a few hours has been hospitalized for dehydration. This concerns me and immune wise she has been tested and all the results were normal. She walks with the assistance of a walker and has begun to use canes too. She is having to gain her strength back after this last surgery, so of course she is not back to where she was prior to surgery strength wise, but she has the will and determination to get stronger and wants to walk like other kids. She has a self propelled wheelchair for long distances as she fatigues if she has to walk to far or for too long. When she was born, her right knee and left wrist were contracted. She has full functionaly use of her left wrist today and is primarly left hand dominate. It is sorta funny cause she signs with her right hand better than her left, but writes and feeds herself with her left better than the right one. She has a correct pincher and palmer grasp but it has only developed through years of occupational therapy, splinting, and working with her daily. Today she does not wear any braces on her hands. She does have AFO's and a HKAFO for her right leg as she still does not have full ROM with her right knee and tends to want to lock out the right knee when she weight bears and walks for stability. She has been on medically fragile homebound status with our local public school system. This has given her a certified regular education teacher to come to our home to teach her all the same stuff that the regular ed kindergarten students have been taught in the classroom. She has surpassed the classroom academically and is already reading on a 2nd grade level. Academically I believe she would test out in the gifted program if given the chance to take the test, but I do not want to stress her right now and I do not know that the school system would be able to support a gifted homebound student appropriately in a home setting. This coming school year she will be in the 1st grade. Her recovery from this spinal surgery and the summer months will be a indicator to me weather or not she may be able to actually attend school in a regular ed classroom setting come August 2006. She does not have seizures yet I am told that she is high risk to develop epilepsy, so we watch for this. She will have to have growth expansion surgery every 6 months for the next 5 to 6 years until her spine stops growing, then she will have a final spinal fusion. I do not know yet if medically she is going to be able to handle being in the classroom environment so I am taking it slowly and carefully because I feel she has come to far and made too much progress medically to take any unnecessary risk with her health. Anyway, she is a light in all of our lives and is so funny at times. She has a personality that shines and all who meet her fall in love with her. Because of her physical birth defects and her low tone, her gross motor skills are way behind. Her fine motor skills are pretty much on target, but it is hard for her to write allot at one time. Her little hand just gets so tired. So we have to do writing assignments in small bits and increments. She can color well, however, I have found that markers work better than crayons for her. As far as dressing herself, she still requires help for all dressing, bathing, and toileting skills. She is assisted with brushing her hair and teeth, and feeding too. She has to have assistant with getting in and out of her wheelchair, onto furniture, in and out of bed, on and off the toilet, with baths, and for repositioning. This is all due to muscle tone issues. She has home skilled shift nurses that come to our home to assist me with her care. Right now at night she is back on a continous feed pump so that we can maintain her nutritional values while she is recovering from the spine surgery. She is allot of work, but well worth all of it! For those of you who are new to the CBPS and neuronal migration disorder...all I can say is welcome, you are not alone, do not every give up, stimulate your child as much as possible with touch, toys, love, and educate yourself and every doctor that comes in contact with you and your child. In many cases physicians have never had a CBPS kid and so as you learn and educate yourself educate them too. Knowledge is power and you as the parent will always be your childs best advocate. It is a rollercoaster ride allot of the time and no-one will be able to tell you for sure what outcome your child may or may not attain. All cases are so unique and each child is individually unique. Many of us on this list have children with similarities, yet I have not found any one whos child is exactly like mine. I think allot of parent would agree that this is also true for their unique child. Take care, Deborah Salter Leesburg, GA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 Do any children with this disorder develop speech after the age of four? Our son will be 4 in October, he has some word approxiamations but nothing clearly spoken. He tries so hard too. Cognitively he is doing great but no speech. ANyone have any miracle cures????????? Thanks, Quote Link to comment Share on other sites More sharing options...
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