Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 Hi So good to hear from so many of you. I only have about 10 minutes to get ready for work and out of the house. Mark has been having a bad couple of days and I'm exhausted. I slept my whole time at home and now I don't have time to read all the welcoming emails that I see. I will be off on Friday and then I will get a chance to get back online and email everyone. I appreciate the group letting me join, and assure you I am here because of my love for this baby, not as a nurse trying to moderate anything. I know the most knowledge will come from the parents who have been dealing with this disorder day in and day out. It looks like when you reply to an email it goes to the whole group. Is that correct? I'll tell you all about Mark either tomorrow or Friday when I get home from work. I'm working 14 hour shifts with him and just plop into bed when I get home. He is an adorable baby and his parents are very excited about the information from this group. I print out the emails and took them with me. The mom's name is and she is considering calling Joanne from New York. I guess Joanne included her phone number. We really appreciate the help and comfort I know all of you will be. Have to run. Just wanted you to know I got the emails. I got no reply at all when I sent the request to join. I guess the program does need a little work. Thanks again Carol new member Welcome Carol! Glad you found us. Could you tell us a little about your little charge? You said he was doing things that the never thought he'd do... We like to share our children's triumphs no matter how small. The kids work so hard they deserve recognition. Kim Raub (mother of Teddy - 2 1/2 w/diffuse PMG) He uses sign language, runs around, rides a big wheel, has trouble chewing & swallowing solid foods, has 1 identical twin (without PMG), 2 big brothers and a busy Daddy. We live in CT. ------------------------------------------------------------------------------ Please click above to support our sponsor ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Hi - I forwarded Patty to the Polymicrogyria group. She's still looking for a more specific diagnosis for her son, just like I was about Crystal. I hope that she finds out what she needs here... Take care all... - Crystal Aquielle's mommy - BPP & adorable... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Thanks Chris. I wasn't sure to mention your name. Thanks for your help. Even tho the ped neuro hasn't given us the entire name of the condition, the more I read I'm sure that's extremely similiar to Crystal's condition Patty >From: crsmoogie@... >Reply-To: polymicrogyriaonelist >To: polymicrogyriaonelist >Subject: Re: New Member >Date: Tue, 22 Feb 2000 08:50:14 EST > >From: crsmoogie@... > >Hi - I forwarded Patty to the Polymicrogyria group. She's still looking for >a >more specific diagnosis for her son, just like I was about Crystal. I hope >that she finds out what she needs here... > >Take care all... > >- Crystal Aquielle's mommy - BPP & adorable... > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >http://click./1/915/2/_/_/_/951227419/ >------------------------------------------------------------------------ > > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Patty - you're welcome, dear... For a long while I felt isolated. I wasn't able to get any straight ( or detailed ) answers about my baby. The Lissencephally group opened their hearts to me, even though I wasn't sure Crystal fit in. Then when I finally got my diagnosis from Dr. Dobyns, the PMG group was there for me to find other kids like Crys. Our kids really do have ALOT in common !!! Talk to you soon... - Mommy of Crystal Aquielle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2000 Report Share Posted February 23, 2000 >From: crsmoogie@... >Reply-To: polymicrogyriaonelist >To: polymicrogyriaonelist >Subject: Re: New Member >Date: Tue, 22 Feb 2000 20:15:33 EST > >From: crsmoogie@... > >Patty - you're welcome, dear... For a long while I felt isolated. I wasn't >able to get any straight ( or detailed ) answers about my baby. The >Lissencephally group opened their hearts to me, even though I wasn't sure >Crystal fit in. Then when I finally got my diagnosis from Dr. Dobyns, the >PMG >group was there for me to find other kids like Crys. Our kids really do >have >ALOT in common !!! > >Talk to you soon... > >- Mommy of Crystal Aquielle > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates >as low as 0.0% Intro APR and no hidden fees. >Apply NOW! >http://click./1/967/2/_/_/_/951268540/ >------------------------------------------------------------------------ > > How did you link up with Dr. Dobyns. I had a moment so I'm writing from school? ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2000 Report Share Posted February 23, 2000 Patty - go to the Liss. Launchpad ( <A HREF= " http://www.foliot.demon.co.uk/lissinfo.html " >Lissencephaly Launchpad</A> ) & look under genetics & research. You'll find his name - address - 1-800 # - & E-mail address. You usually go through his associate Patti Mills. Let me know if you reach them, what they say... Good luck... Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2000 Report Share Posted March 23, 2000 Hello Candi, Welcome to the group. My name is Sharon and my son Damian is 20 months. I have the same problem like you about the diagnosis. It looks like pachygyria and has heterotopia. Now I am really confused. I see Damian's Neuro in a week and I'm going to ask for a clear answer. Damian had seizures since he was a month old. Until January 2000 he has been better controlled due to the vagal nerve stimulator. It has been working great. We are so happy to see him interacting well. I'm glad to hear your daughter is doing great with her medication. I hope you enjoy the group because it really helps out a lot. Take care your friends, Sharon and Damian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2000 Report Share Posted March 24, 2000 Hi Candi, My name is and I have a 3yo daughter, Hannah, who has diffuse bilateral PMG. She is non verbal, non mobile and very delayed in all areas, but she can cry to get attention, and her only deliberate movement is getting her left fist to her mouth. Her favourite stimulus is being touched, preferably picked up, and hearing sounds. She enjoys music and listening to childrens videos and loves the sound of voices in a room. She especially responds to her 8yo brother's voice (loud, high pitched and constant!). Hannah loves movement of any kind - car, pusher, hammock, someone's arms.... She has complex partial epilepsy which is moderately controlled and we have tried many drugs for her. Will do the ketogenic diet soon, and possibly VNS although I don't know much about this yet. Currently she takes Lamictal, Topamax and clonazepam for seizures, as well as lactulose for bowels and Losec for reflux, which was the side effect of gtube being implanted. She has peaches and cream complexion, a headful of soft tubling curls and a smile to die for. Gorgeous in other words, and its not just her biased mother that says so. Welcome to the list Candi and I look forward to hearing more from you. in Melbourne, Australia (mum to Hannah, 3yo; polymicrogyria, uncontrolled complex partial epilepsy, spastic quad.cp, cortical vision impairment, global dev. delays, bard button, and a brilliant smile) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2000 Report Share Posted March 24, 2000 Hi Candi, My name is and my youngest daughter Kennedy will turn 8 months next week. She started having seizures at 7 weeks but we have been very lucky to control them with meds. She go's to PT and OT on Tuesdays and PT on Fridays. I give you a lot of credit for looking towards having another one. We have a two year who just smart as a whip and like you they say the chances of it happening again are slim but I just don't think I could put myself through it. Talk to you again, Ohio ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Hi, I joined about a week ago and have been reading the posts with interest. I just received the below in my email and thought I would post it here in case anyone was interested and also if anyone has tried it they could give feedback on it. I'm female and it seems to be geared towards males but I'm wondering if it would be effective for females as well. Special Product Bulletin for readers of the Daily Dose **************************************************** January 07, 2006 Why am I getting this? **************************************************** Could great sex be just one drink away? Introducing a brand new generation in men's sexual health... This "Triple Action" breakthrough makes it easier than ever before to experience firm erections, intense desire, long-lived stamina and strong orgasms... Dear Reader, Now you can have the hot, spontaneous sex you've always enjoyed - without popping pills! Advancements in supplement delivery are making it easier than ever to promote a strong libido, firm, natural erections and a surging desire. I'm talking about feeling aroused naturally - because the moment's right. How's that for a breakthrough? Maybe you've tried other natural supplements that promise frequent erections and better staying power. And maybe you got the results you were looking for. But, you'll soon agree that those pills - even the natural ones - just don't cut it when it comes to maintaining the kind of quality sex life every man wants. http://www1.youreletters.com/t/327413/3057837/783129/0/ Sincerely, NorthStar Nutritionals Team Poetry by Da Costa http://piecesofmyheart.org No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.371 / Virus Database: 267.14.15/223 - Release Date: 1/6/2006 Quote Link to comment Share on other sites More sharing options...
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