Guest guest Report post Posted September 5, 2006 Thanks Krista- Did he walk at the normal age? Or was it delayed at all? Did Dr.'s tell you that he might not walk? That he couldn't do or wouldn't do certain things? _____ From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of elryan1 Sent: Tuesday, September 05, 2006 8:30 PM To: polymicrogyria Subject: Hi melanie, Yes, walks (runs, climbs, jumps, etc.- is actually quite the monkey.....however, he can't peddle a bicycle...motor planning is too much to make that happen as of yet). He uses sign language and an augmentative communication device (Dynavox MT4) to " talk " .....'s CBPS has primarily impacted his expressive language, although his fine motor skills are also delayed. His receptive language skills are almost age appropriate. He is the happiest kid around, always laughing and smiling. To look at him, you wouldn't realize that he has CBPS. Feel free to ask questions.......glad to help in any way possible. Krista mom to , 4, CBPS, unilateral hearing loss Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 6, 2006 The doctors told us Jenna wouldn't walk or talk but she is doing both of those things, although speech is very delayed and a big problem for her. Walking came almost right on time and she runs, just learned to jump, and climbs. She cannot peddle a bicycle either, like someone else mentioned, it is just too much for her to comprehend right now. Jenna started having seizures at 2 months old but no longer has them and is no longer on any medication. We believe she is mentally retarded but has not had an IQ test to confirm that. She is in special needs pre-school and will start Kindergarten next year in special needs classes. She does O.T., P.T., and Speech therapies once a week for an hour a piece and has done that since she was 9 months old. Jenna's brain is affected severely by the PMG. 3/4 of her brain is affected with it but to look at her, you wouldn't tell she had all the problems she once did and that she was as delayed as she is. There is always hope for our kids. They are so different in their abilities...no one can say what they definitely will or will not do. Hi melanie, Yes, walks (runs, climbs, jumps, etc.- is actually quite the monkey.....however, he can't peddle a bicycle...motor planning is too much to make that happen as of yet). He uses sign language and an augmentative communication device (Dynavox MT4) to " talk " .....'s CBPS has primarily impacted his expressive language, although his fine motor skills are also delayed. His receptive language skills are almost age appropriate. He is the happiest kid around, always laughing and smiling. To look at him, you wouldn't realize that he has CBPS. Feel free to ask questions.......glad to help in any way possible. Krista mom to , 4, CBPS, unilateral hearing loss Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 17, 2007 Dianna, We live in Ohio, about an hour from Cleveland or an hour & a half from Pittsburgh. Kennedy goes to Pittsburgh for all her specialist. Kennedy has always drank from a sippy cup and straw. It really just seem to come natural to her. She does live to bite on her sippy cup or straw before she drinks from them. She always has to have a sippy cup with handles and know that she is older it has to have a hard tip on it otherwise she will bite the tip off. I get her sippy cups from Target and they are .99cents, which is great since she bites them and goes through them. She doesn't attend Childrens Rehab anymore because she goes to a special needs school where she gets pt, ot, speech, swimming and a gym class. But it is located in Howland Ohio. If you think your litte guy needs more therapy then don't be afraid to keep pushing for it. Also, if your therapist are the kind that don't think the therapy makes a difference then you need to set them straight or get new ones, because no one can say for sure what any of our kids can accomplish. They are forever surprising us with what they do. Hope some of this helps. and Kennedy(7yrs.,pmg) http://www.geocities.com/kenjenjennings/ >From: DiannaL@... >Reply-To: polymicrogyria >To: polymicrogyria >Subject: >Date: Fri, 16 Feb 2007 13:32:22 -0500 > >Hi! I was ready Kennedy's story and had a few questions. Where are you >from? Has Kennedy always been able to drink from a cup or straw? If >not could you give me some tips? Can you tell me where the >Children's Rehab Center is? I feel like needs more therapy, and >maybe a little bit better. Kennedy's knee sitting is great! Is it >something that you all have been working on, and it just clicked? >Sorry for so many questions, but if there is something that I can do I >will for . > >Thanks >Dianna > > > Re: Ohio > > >Date: Wed, 14 Feb 2007 00:35:45 -0000 > > > > > >Hi Dianna! > > > My name is and I have a son Mason who is 5 1/2 with bpmg. > > >We also Dr Green at University Hosp. We live in Olmsted Falls about > > >30 min. from downtown and 50 min. from Cedar Point. I think we may > > >have met once at UCP for the conductive education program they had > > >there. They have a real good intensive therapy program therethat > > >Mason does about 4 times a year and WOW has it made a difference! I > > >also think I was origianally given your # from Orphia Bass at the > > >Westlake therapy location. If you still see her at all talk to me > > >before you see her again. I would never recomend her to ANYONE! > > > > > >~~ > > > home > > > cell > > > > > > > > > > > > > > > > My 3 year old daughter was just put on Keppra in > > > > > addition > > > > > > > to > > > > > > > vigabatrin in hope of acheiving more seizure control. I was > > > > > > > wondering > > > > > > > if anyone has had side effects (good or bad) and how > > >effective > > > > > has > > > > > > > if > > > > > > > been for you in controling or helping seizures? > > > > > > > thanks, carrie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Ann Hasselberger > > > > > > > District Leader > > > > > > > > > > > > > > > > > > > > > > > > > > > > Primerica Financial Services > > > > > > > 1 (203)788-9602 > > > > > > > jhasselberger@ > > > > > > > > > > > > > > > > > > > > > www.primerica.com > > > > > > > > > > > > > > www.citigroup.com > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 20, 2007 Dianna, If you can get into the steps program this summer I would take it! Mason just finished a three week 5 days a week program last friday. I am leaving in the end of march to go to Michigan for suit therapy and doing it again in May at UCP. I might be able to attend the information fair in march also- not exactly sure yet! Maybe I'll see you there! ~~ > > > > > > My 3 year old daughter was just put on Keppra in > > > > addition > > > > > > to > > > > > > vigabatrin in hope of acheiving more seizure control. I was > > > > > > wondering > > > > > > if anyone has had side effects (good or bad) and how > > effective > > > > has > > > > > > if > > > > > > been for you in controling or helping seizures? > > > > > > thanks, carrie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Ann Hasselberger > > > > > > District Leader > > > > > > > > > > > > > > > > > > > > > > > > Primerica Financial Services > > > > > > 1 (203)788-9602 > > > > > > jhasselberger@ > > > > > > > > > > > > > > > > > > www.primerica.com > > > > > > > > > > > > www.citigroup.com > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 21, 2007 Hi . My son is 5.5yrs old, and he has Bilateral PMG. We are from Ohio. How about you? Dianna and Welcome to new member To: " polymicrogyria " <polymicrogyria > > > Email address: ky_doodlebug <TNmom0379@... > > Comment from user: > Hi, my name is and my 5 year old son has polymicrogyria, among > other things. I would love the chance to join the group and share > storyswith other parents. > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 20, 2009 I'm not too concerned if an SSRI I take causes sexual dysfunction as I've been celibate sine 1989. I'm an average looking 42 year old man in good physical shape and everything has always functioned normally, (I think), but my social anxiety just keeps me from being intimate with women. I've been hit on by three women (two strangers and an ex from 1988) in the past 4-5 months and I gave them all excuses so I didn't have to be with them. No, I'm not gay just social phobic as hell. What's the point in functioning sexually if you're too anti-social to even talk to women? I guess I'll just grow old and lonely. Looks like I have no choice because I'm not open to trying SSRI's or Benzos after reading thousands of comments about the nasty side efects. Life is hopeless. Happy Holidays! ) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 21, 2009 Hey, these drugs don't work, or not for long, so you are not missing out on anything . I was terribly social phobic once, but I'm better now. Dancing is a good way to meet people - rock & roll, salsa, lindy hop (the one I do which is the best I think), french jive, or ballroom. At dancing conversation is easy because you talk about dancing and asking a girl for dance doesn't necessarily mean you are interested in going any further and so the girls nearly always say yes. Most people go to dancing because they want to meet people but then you fall in love with the dance and takes on a life of its own. Remember, most people have doubts about themselves and have feelings like yours from time to time and some a lot of the time. It's univeral so don't think you are different. So what do you do when you are too shy and self conscious to go dancing and learn something new. Well, I just had to go through complete hell and lots of embarrassement, and it was hard but it does get easier after a month ar so. Now I find dancing is as easy as walking. An excellent book on dating is Intimate Connections by Burns. http://www.amazon.com/Intimate-Connections--D-Burns/dp/0451148452/ref=sr_1_1?ie=UTF8 & s=books & qid=1261411974 & sr=1-1 Kavy >> I'm not too concerned if an SSRI I take causes sexual dysfunction as I've been celibate sine 1989. I'm an average looking 42 year old man in good physical shape and everything has always functioned normally, (I think), but my social anxiety just keeps me from being intimate with women. I've been hit on by three women (two strangers and an ex from 1988) in the past 4-5 months and I gave them all excuses so I didn't have to be with them. No, I'm not gay just social phobic as hell. What's the point in functioning sexually if you're too anti-social to even talk to women? I guess I'll just grow old and lonely. Looks like I have no choice because I'm not open to trying SSRI's or Benzos after reading thousands of comments about the nasty side efects. Life is hopeless. Happy Holidays! )> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 23, 2010 Have you guys ever heard of this man. He makes a boat load of sense to me. He is a kind of conspiracy theorist but is extremely popular and makes a lot of good solid points. As far as getting our issue published or illuminated to the general public, this is a very credible answer. global conspiracy theory is labeled as a disease, but it appears to me that this man is simply looking at evidence that everyone else looks away from, including our specialist doctors who tell us that we are fine. we should flood this dude with emails. check out infowars.com and prisonplanet.com or google alex jones to find his email. we have a responsibility here that needs to be addressed on a daily basis. let's try to help our fellow man a bit, right? Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 4, 2012 My dd was in the Child & Adolescent Center (Teens) last Fall. She says that they are not separated. If someone becomes violent then they are moved to the Inpatient Unit until stabilized and able to return to the floor. If you have any specifics let me know and I'll ask her for you. KG Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 4, 2012 My dd was in the Child & Adolescent Center (Teens) last Fall. She says that they are not separated. If someone becomes violent then they are moved to the Inpatient Unit until stabilized and able to return to the floor. If you have any specifics let me know and I'll ask her for you. KG Quote Share this post Link to post Share on other sites
