Guest guest Posted August 23, 2002 Report Share Posted August 23, 2002 I don't think you have to worry about the opening/closing of the mouth to be seizures. Our son, , does that when he gets really excited- he opens his and keeps it open really wide. Our doc told us it's neurological. When he gets older, he'll be able to stop doing it. Enjoy Boston. in Houston --- sallyjd2001 wrote: > Hi, > > It's been awhile since I have posted... I barely get > to read the > posts it seems. I did want to say hi to everyone > though and give you > an update. First of all, my heart goes out to so > many of you over > the last few weeks, and Hannah, and > Kennedy, and > Crystal and others. I wanted all of you to know > that I think of you > all the time and pray for you, it seems incredibly > unfair that anyone > would have to deal with what we deal with. I also > went on > antidepressants about 9 months after was > born (he was > diagnosed at 3 months) and although I wasn't on them > for very long (2 > months) the results were amazing. I stopped crying > all the time and > just got a better outlook on things, I did remember > it took awhile > before I felt differently. Anyway, I wanted to > share too that this > is a step that isn't easy to take but has rewards. > > is doing well, he is now 39 months and we > can officially say > he is walking independently. He isn't able to stand > up without > holding onto something which we are working on and > can't walk for > long distances but we know that will come in time. > We are thrilled > about this accomplishment and thankful. His > receptive language seems > to be continuing to improve, we think he understands > everything we > say but we continue to have difficulty with him > communicating, I feel > like I am not good at the augmentative stuff. We > are trying to get > a new therapist to help us with using the pecs cards > and I just > bought a book that was recommended for kids who are > non-verbal and > useing augmentative devices called " A pictures > worth " by Bondy. I > would love to hear from anyone who has any > suggestions about > augmentative communication. > > has developed a new habit of opening and > closing his mouth > late at night back and forth when he is tired. I am > a little worried > this is maybe a sign of seizure type activity but he > is able to stop > when I ask him too. has not had any > seizures that we know of > (knock on wood). He is on vacation from school (he > goes to fulltime > preschool)for the month of August and it has been a > bit of a > difficult adjustment because his sister is now 15 > months and very > active. We have enjoyed the summer though, he loves > to ride rides > (kiddie) so we have been to a few amusement > parks/carnivals and found > tremendous joy in watching him on them. > > I also wanted to let people know about a few other > things. Andy, my > husband submitted Mattie and his sister Audrey's > picture to > Exceptional Parent magazine and they published it in > the August issue > under the familiar faces section. It's their > picture from Xmas last > year and some of the info is a little outdated (he > is over 3 and it > says he is 2 1/2) but we were just elated to see it > in print. You > can find it online as well, www.eparent.com if you > are interested. > > We are heading to Boston to see some people from > Harvard who are > doing research on PMG/BPNH. We will be providing > them with 's > MRI and bloodwork from all of us. We are hoping to > help with the > research in finding the gene that might have caused > his disorder. I > found their website interesting and thought maybe > you all would as > well. www.walshlab.org > > Well that's it for me, take care everyone and kisses > to all the > beautiful children, > > Sally (mom to , 39 months BPNH with a patch > of polymicrogyria > and curly blonde hair!) > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 , Thanks for the info. I am just always on edge worrying over the onset of seizures so I am thankful that I have the " experts " to ask. Sally (and who kind of says " ya " for yes now) > I don't think you have to worry about the > opening/closing of the mouth to be seizures. Our son, > , does that when he gets really excited- he > opens his and keeps it open really wide. Our doc told > us it's neurological. When he gets older, he'll be > able to stop doing it. Enjoy Boston. > > in Houston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Welcome Renae. Glad to hear that you have a regimen you're more comfortable with and look forward to finding out more about you. Angie > Hi everyone > > I joined this group recently and thought it was about time I > introduced myself. I have severe brittle asthma and just recently > managed to get off prednisone for the first time in 15 years. Still > take a very high dose of inhaled steroids though, but anything is > better than pred;-) > I live in Dunedin, New Zealand with my husband and 2 small children > ( 2 year old daughter and 1 year old son), needless to say they keep > me very busy. > I'm looking forward to participating in this group and getting to > know everyone. > > Renae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Welcome Renae. Glad to hear that you have a regimen you're more comfortable with and look forward to finding out more about you. Angie > Hi everyone > > I joined this group recently and thought it was about time I > introduced myself. I have severe brittle asthma and just recently > managed to get off prednisone for the first time in 15 years. Still > take a very high dose of inhaled steroids though, but anything is > better than pred;-) > I live in Dunedin, New Zealand with my husband and 2 small children > ( 2 year old daughter and 1 year old son), needless to say they keep > me very busy. > I'm looking forward to participating in this group and getting to > know everyone. > > Renae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Well actually nothing in my meedication regime changed, for some unknown reason becoming pregnant seemed to help my asthma and since the birth of my son 17 months ago things have been much better. Long may it last. Renae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Well actually nothing in my meedication regime changed, for some unknown reason becoming pregnant seemed to help my asthma and since the birth of my son 17 months ago things have been much better. Long may it last. Renae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Wow Renae, that is unusual. Usually pregnancy worsens asthma. So glad it went the other way for you! Angie > Well actually nothing in my meedication regime changed, for some > unknown reason becoming pregnant seemed to help my asthma and since > the birth of my son 17 months ago things have been much better. Long > may it last. > > Renae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Wow Renae, that is unusual. Usually pregnancy worsens asthma. So glad it went the other way for you! Angie > Well actually nothing in my meedication regime changed, for some > unknown reason becoming pregnant seemed to help my asthma and since > the birth of my son 17 months ago things have been much better. Long > may it last. > > Renae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2004 Report Share Posted December 12, 2004 You look fabulous ! Hugs! Tracey > > Hi Everyone, > > Just wanted to let you all know I posted my 5 months post-op > pictures in the folder 's photos. Take care. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2004 Report Share Posted December 12, 2004 You look fabulous ! Hugs! Tracey > > Hi Everyone, > > Just wanted to let you all know I posted my 5 months post-op > pictures in the folder 's photos. Take care. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2006 Report Share Posted July 8, 2006 Dear all I have to apologize because I haven't been posting because I have been studying for an exam on the 15th. Because of this I haven't been following the posts, I do however get the feeling that some of the members are hurt and are walking away and I want to say I love all of you dearly, please don't walk away! I need you!. I do not know what happened but that is not important as I am not going to pass judgement one way or another. We all have different ways of looking at the world but inside we all care a great deal for one another. Maybe when we see each other we can devise some strategies so this doesn't happen again. I will not be able to see you on the 16th because it is actually my birthday and I will have lunch with a group of girlfriends. Take care and please come back! hugs Quote Link to comment Share on other sites More sharing options...
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