Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 Hi , Does your daughter have use of her right hand now? My sons left side is also mostly affected by Pmg. He has cp and refuses to use his right hand. It's always in a fist when he's working hard. He can use his right hand if highly motivated(I hold his left hand back) but he almost always finds an alternative before using that right hand. He will use his head or foot or fight me like crazy to get that left hand free. My son just turned a year in November btw. Thanks as always for your encouraging words. It helps to have this group!! “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > I remember the first year. I was 20 and my daughter was 10 months old at the diagnosis (which was cerebral palsy - PMG wasn't even on the radar yet due to imaging technology). We had know something was " wrong " since she was 2 months. She never used her right hand but the doctors ignored us. She will be 15 March 1st. > > It's worth it. Every moment. I promise that even though you will walk through some horrible places, you will come through. My daughter has limitations, but they are minor and now that we've cured her epilepsy, she will lie on her own and even have children if she wants to. It's an amazing thing to watch them blow the doctors out of the water! > > > > Sent from my iPhone > > > > > Welcome! I remember the first few difficult months like they were > > yesterday. Hang in there and give yourself time to adjust. Know that > > everyone is here to support you and that things often turn out much better > > than the picture the doctors may paint in the beginning. My Callie recently > > turned two and is making great progress! Hopefully her story and others > > here can provide encouragement and hope. > > > > ((hugs)) > > > > > > Callie's story: > > http://calliebloggie.blogspot.com/ > > > > > > > > > > > >> ** > >> > >> > >> Hi, I just joined the group. I have an infant that was diagnosed with > >> polymicrogyria. We found out a few months ago so I've had some time to > >> process and go through an emotional roller coaster. I was really happy to > >> see this group and get connected with others going through the same thing. > >> My baby is doing well so far. I guess the hardest part is the waiting game > >> and the unknown. > >> I look forward to being involved and meeting others! > >> > >> Thanks! > >> > >> > >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 Kim, your baby sounds just like mine... My son (left pmg) is just about one and will fight so hard to avoid using his right arm. Its always fisted, more so when concentrating on something. He uses his feet to play instead of his hand. As soon as I get something in that hand he'll drop it. , when did your daughters seizures first start? As far as I know my son has no seizure activity at this time, but its my biggest worry. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 We heard that several times about our son too. He has microcephaly and for a while it seemed his brain stopped growing, in time it has kept growing though, at his own rate. I hope that will be for your granddaughter as well. It can be part of the neuro condition that goes along with polymicrogyria. Kara ________________________________ To: polymicrogyria Sent: Tuesday, January 10, 2012 2:15 PM Subject: Re: Hi, New to the group  The doctors have said that my granddaughters brain " stopped growing " . She has a small head (compared to most 3 months old). Does anyone know if that is part of the polymicogyria or a totally diffent diagnosis? She has been diagnosed with polymicrogyria. > > Hi and welcome. I dont really use the yahoo groups a lot but I wanted to > say welcome. I have a baby girl..almost 6months old she has PMG..we found > out when she was about 3weeks. Its been an adventure with lots of ups and > downs for sure but I think we all learn how to handle things the best we > can. My daughter also is super happy most of the time so I think the helps! > Its is nice to have other parents to talk to though! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 I feel so much for you. That roller coaster is so rough, especially initially. The waiting game is hard, but then often we don't even know what we are waiting for! Try to enjoy each day with your little one and take it one day at a time. It took me over four months to even research more about our son's condition, the grief was so intense. Be patient with yourself, we are all here standing by to help you in any way we can. Kara ________________________________ To: polymicrogyria Sent: Tuesday, January 10, 2012 12:52 PM Subject: Hi, New to the group  Hi, I just joined the group. I have an infant that was diagnosed with polymicrogyria. We found out a few months ago so I've had some time to process and go through an emotional roller coaster. I was really happy to see this group and get connected with others going through the same thing. My baby is doing well so far. I guess the hardest part is the waiting game and the unknown. I look forward to being involved and meeting others! Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 Welcome to the group! It's hard waiting for the unknown. Brie is 6 months now and we found out when she was 2 weeks old. I think we all make steps forward and backward with coping. Some days I want to read and know more, some days I want to never think about it again. Of course, I always wish we didn't have to. But I will say that I cherish every tiny moment of her life, my precious granddaughter. It sure makes you look at life so differently. > ** > > > Hi, I just joined the group. I have an infant that was diagnosed with > polymicrogyria. We found out a few months ago so I've had some time to > process and go through an emotional roller coaster. I was really happy to > see this group and get connected with others going through the same thing. > My baby is doing well so far. I guess the hardest part is the waiting game > and the unknown. > I look forward to being involved and meeting others! > > Thanks! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 Hi ! My son hasn't any seizure activity thus far either. That scares me too. I am insane about every little weird thing he does because I also don't know what to expect, you know what I mean? “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > Kim, your baby sounds just like mine... My son (left pmg) is just about one and will fight so hard to avoid using his right arm. Its always fisted, more so when concentrating on something. He uses his feet to play instead of his hand. As soon as I get something in that hand he'll drop it. > > , when did your daughters seizures first start? As far as I know my son has no seizure activity at this time, but its my biggest worry. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 Hi This group has been great for me, although each varies, the information, experience and support here is priceless! It is definetly an emotional roller coaster and some days are better than others. It is hard to know what to expect as they grow, but I have learnt to celebrate every one of her achievements. My girl is 16mths, has bilateral PMG, infantile spasms (seizures) and development. But she is doing way better than the docs ever thought she would. She can now hold her head up on her own and although she is not sitting unassisted, she does try. She is laughing and smiling and remembering things. I think our biggest prob is her spasms and constant problems with reflux and wind. My best advice after the last 16mths so far, is to enjoy your child, celebrate each milestone and get lots of therapy and support to help bring out the best in them. My girl is a happy child who brings so much joy to my life. Remember you are not alone, we are here to listen and support. All the best. Kat (Mum of Siera 16mths) ________________________________ To: polymicrogyria Sent: Wednesday, 11 January 2012 6:52 AM Subject: Hi, New to the group  Hi, I just joined the group. I have an infant that was diagnosed with polymicrogyria. We found out a few months ago so I've had some time to process and go through an emotional roller coaster. I was really happy to see this group and get connected with others going through the same thing. My baby is doing well so far. I guess the hardest part is the waiting game and the unknown. I look forward to being involved and meeting others! Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 Hi, my girl is 16mths and has just starting holding her own head up and trying to sit (once she is already in a sitting position) It is good to hear positive stories, I'm so pleased your girl is going well. Our girl is very vocal and is also happy and pleasant. Does your girl suffer from seizures? Thanks for sharing. kat ________________________________ To: polymicrogyria Sent: Wednesday, 11 January 2012 8:59 AM Subject: Re: Re: Hi, New to the group She is sitting up but not crawling or walking she is delayed by over 12months in most areas she has no words yet but has started to babble a lot this last month she is also the most adorable pleasant child and we love her to bits xxx Sent from my BlackBerry® smartphone on O2 Re: Hi, New to the group Thanks, it is nice to know that it is a symptom of PMG. At two, is your daughter meeting all her milestones, sitting up, crawling, walking talking? > > > >> > > > >> Hi and welcome. I dont really use the yahoo groups a lot but I wanted to > > > >> say welcome. I have a baby girl..almost 6months old she has PMG..we found > > > >> out when she was about 3weeks. Its been an adventure with lots of ups and > > > >> downs for sure but I think we all learn how to handle things the best we > > > >> can. My daughter also is super happy most of the time so I think the helps! > > > >> Its is nice to have other parents to talk to though! > > > >> > > > >> > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 Great advice Kara! This group and the facebook group are so great, I'd be lost without them. Thank you for sharing. ps - where abouts are you in location if you don't mind me asking? thanks. ________________________________ To: " polymicrogyria " <polymicrogyria > Sent: Wednesday, 11 January 2012 3:18 PM Subject: Re: Hi, New to the group  I feel so much for you. That roller coaster is so rough, especially initially. The waiting game is hard, but then often we don't even know what we are waiting for! Try to enjoy each day with your little one and take it one day at a time. It took me over four months to even research more about our son's condition, the grief was so intense. Be patient with yourself, we are all here standing by to help you in any way we can. Kara ________________________________ To: polymicrogyria Sent: Tuesday, January 10, 2012 12:52 PM Subject: Hi, New to the group  Hi, I just joined the group. I have an infant that was diagnosed with polymicrogyria. We found out a few months ago so I've had some time to process and go through an emotional roller coaster. I was really happy to see this group and get connected with others going through the same thing. My baby is doing well so far. I guess the hardest part is the waiting game and the unknown. I look forward to being involved and meeting others! Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2012 Report Share Posted January 10, 2012 Hi and welcome! I'm still fairly new to this group too. I'm nineteen and was diagnosed with pmg a few months ago when my neurologist was trying to determine the cause of my epilepsy. > > Hi, I just joined the group. I have an infant that was diagnosed with polymicrogyria. We found out a few months ago so I've had some time to process and go through an emotional roller coaster. I was really happy to see this group and get connected with others going through the same thing. My baby is doing well so far. I guess the hardest part is the waiting game and the unknown. > I look forward to being involved and meeting others! > > Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 Kara I'm about 3 hours from you. I'm near Cleveland. I'm your Cleveland Clinic resource. Lol Sent from my iPhone > Hi Kat, > > I'm in Grand Rapids, Michigan. Are you close enough to visit? > > Kara > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Sent: Wednesday, January 11, 2012 12:36 AM > Subject: Re: Hi, New to the group > > > > Great advice Kara! This group and the facebook group are so great, I'd be lost without them. Thank you for sharing. > > ps - where abouts are you in location if you don't mind me asking? thanks. > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Sent: Wednesday, 11 January 2012 3:18 PM > Subject: Re: Hi, New to the group > > > I feel so much for you. That roller coaster is so rough, especially initially. The waiting game is hard, but then often we don't even know what we are waiting for! Try to enjoy each day with your little one and take it one day at a time. It took me over four months to even research more about our son's condition, the grief was so intense. Be patient with yourself, we are all here standing by to help you in any way we can. > > Kara > > ________________________________ > > To: polymicrogyria > Sent: Tuesday, January 10, 2012 12:52 PM > Subject: Hi, New to the group > > > Hi, I just joined the group. I have an infant that was diagnosed with polymicrogyria. We found out a few months ago so I've had some time to process and go through an emotional roller coaster. I was really happy to see this group and get connected with others going through the same thing. My baby is doing well so far. I guess the hardest part is the waiting game and the unknown. > I look forward to being involved and meeting others! > > Thanks! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 She will be 15 in March. Sent from my iPhone > Yes our PMG diagnosis was one of the results which started from detection of ventriculomegaly as well. Mel, do you mind if I ask how old your child is? Our head circs have been quite high and hoping to stop jumping up after his next visit in a couple months. > > > > > > > > > > > > > > > >>> > > > > > > > > > > > > > >>>> > > > > > > > > > > > > > >>> > > > > > > > > > > > > > >>>> Hi and welcome. I dont really use the yahoo groups a lot but I > > > > > wanted to > > > > > > > > > > > > > >>> > > > > > > > > > > > > > >>>> say welcome. I have a baby girl..almost 6months old she has > > > PMG..we > > > > > found > > > > > > > > > > > > > >>> > > > > > > > > > > > > > >>>> out when she was about 3weeks. Its been an adventure with lots > > > of > > > > > ups and > > > > > > > > > > > > > >>> > > > > > > > > > > > > > >>>> downs for sure but I think we all learn how to handle things the > > > > > best we > > > > > > > > > > > > > >>> > > > > > > > > > > > > > >>>> can. My daughter also is super happy most of the time so I think > > > > > the helps! > > > > > > > > > > > > > >>> > > > > > > > > > > > > > >>>> Its is nice to have other parents to talk to though! > > > > > > > > > > > > > >>> > > > > > > > > > > > > > >>>> > > > > > > > > > > > > > >>> > > > > > > > > > > > > > >>>> > > > > > > > > > > > > > >>> > > > > > > > > > > > > > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 - Does your daughter regress with the seizures? My son is 6 and doesn't have seizures unless he is sick or with a fever. I'm just dreading puberty because he has been making great strides this year and I'm afraid all will be lost. To: polymicrogyria From: divewithmelissa@... Date: Wed, 11 Jan 2012 09:16:52 -0500 Subject: Re: Hi, New to the group My daughter had her first seizure at 18 months. She went off all medication from 3-5 years then they started again. She didn't get BAD until age 10 when everything went crazy (hello puberty!). Sent from my iPhone > Kim, your baby sounds just like mine... My son (left pmg) is just about one and will fight so hard to avoid using his right arm. Its always fisted, more so when concentrating on something. He uses his feet to play instead of his hand. As soon as I get something in that hand he'll drop it. > > , when did your daughters seizures first start? As far as I know my son has no seizure activity at this time, but its my biggest worry. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 She has temporary regressions. She also doesn't have seizures when sick (???) and never runs a fever (EVER). Her only regression was with subclinical status. There was definite regression then. Sent from my iPhone > > - Does your daughter regress with the seizures? My son is 6 and doesn't have seizures unless he is sick or with a fever. I'm just dreading puberty because he has been making great strides this year and I'm afraid all will be lost. > > To: polymicrogyria > From: divewithmelissa@... > Date: Wed, 11 Jan 2012 09:16:52 -0500 > Subject: Re: Hi, New to the group > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My daughter had her first seizure at 18 months. She went off all medication from 3-5 years then they started again. She didn't get BAD until age 10 when everything went crazy (hello puberty!). > > > > > > > > Sent from my iPhone > > > > > > > >> Kim, your baby sounds just like mine... My son (left pmg) is just about one and will fight so hard to avoid using his right arm. Its always fisted, more so when concentrating on something. He uses his feet to play instead of his hand. As soon as I get something in that hand he'll drop it. > >> > >> , when did your daughters seizures first start? As far as I know my son has no seizure activity at this time, but its my biggest worry. > >> > >> > >> > >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 Thank you, that's what I'm fearing. I guess there is nothing to be done about it. To: polymicrogyria From: divewithmelissa@... Date: Wed, 11 Jan 2012 12:10:57 -0500 Subject: Re: Hi, New to the group She has temporary regressions. She also doesn't have seizures when sick (???) and never runs a fever (EVER). Her only regression was with subclinical status. There was definite regression then. Sent from my iPhone > > - Does your daughter regress with the seizures? My son is 6 and doesn't have seizures unless he is sick or with a fever. I'm just dreading puberty because he has been making great strides this year and I'm afraid all will be lost. > > To: polymicrogyria > From: divewithmelissa@... > Date: Wed, 11 Jan 2012 09:16:52 -0500 > Subject: Re: Hi, New to the group > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My daughter had her first seizure at 18 months. She went off all medication from 3-5 years then they started again. She didn't get BAD until age 10 when everything went crazy (hello puberty!). > > > > > > > > Sent from my iPhone > > > > > > > >> Kim, your baby sounds just like mine... My son (left pmg) is just about one and will fight so hard to avoid using his right arm. Its always fisted, more so when concentrating on something. He uses his feet to play instead of his hand. As soon as I get something in that hand he'll drop it. > >> > >> , when did your daughters seizures first start? As far as I know my son has no seizure activity at this time, but its my biggest worry. > >> > >> > >> > >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 Getting started in the Early Start program is a great thing. Keep your ears out for other resources as much as you can. See if you can get a case manager. If not already, try to get on Medicaid. We weren't for the first 13 months of Maureen's life, and there were months where our Med bills were more than our house payment, and that was with private insurance through my husband's job. Once you get Medicaid, things become a lot easier. Many of the big Medical Supply Companies are more used to dealing with them. We also have home health nursing, which is a godsend, allowing me to get out of the house to run errands, or occasionally have a date night with my husband. Our Maureen seems to be a lot more impaired than average for PMG. She's almost 3, and is about the development of a 4 month old. She isn't sitting by herself, and certainly no walking or talking. She's pretty severely visually impaired as well. Her seizures have been under control for almost a year with the ketogenic diet, which we've been very thankful for. She has the PMG, as well as hypoplasia of the corpus collosum, and ventriculomegaly. The ventricles appear to be getting progressively bigger as well, but thank goodness, it doesn't seem to be due to fluid pressure. Someone asked a while back about genetics. A lot of people confuse genetic with hereditary. Something can be genetic, but not be hereditary. It was still caused by something wrong in the genes, but it's just a fluke, and won't be passed on. (An easy example of this is Down syndrome.) There are a few known genes that have been linked to PMG, but you can test negative for those genes and still have PMG. Everyone's advice is right though, right now, nobody seems to think it's hereditary. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 It's BAD seizures that cause longer than a couple hours of regression. Clusters or status. Sent from my iPhone > > Thank you, that's what I'm fearing. I guess there is nothing to be done about it. > > To: polymicrogyria > From: divewithmelissa@... > Date: Wed, 11 Jan 2012 12:10:57 -0500 > Subject: Re: Hi, New to the group > > > > > > > > > > > > > > > > > > > > > > > > > > > > > She has temporary regressions. She also doesn't have seizures when sick (???) and never runs a fever (EVER). Her only regression was with subclinical status. There was definite regression then. > > > > Sent from my iPhone > > > > > > > >> > >> - Does your daughter regress with the seizures? My son is 6 and doesn't have seizures unless he is sick or with a fever. I'm just dreading puberty because he has been making great strides this year and I'm afraid all will be lost. > >> > >> To: polymicrogyria > >> From: divewithmelissa@... > >> Date: Wed, 11 Jan 2012 09:16:52 -0500 > >> Subject: Re: Hi, New to the group > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> My daughter had her first seizure at 18 months. She went off all medication from 3-5 years then they started again. She didn't get BAD until age 10 when everything went crazy (hello puberty!). > >> > >> > >> > >> > >> > >> > >> > >> Sent from my iPhone > >> > >> > >> > >> > >> > >> > >> > >>> Kim, your baby sounds just like mine... My son (left pmg) is just about one and will fight so hard to avoid using his right arm. Its always fisted, more so when concentrating on something. He uses his feet to play instead of his hand. As soon as I get something in that hand he'll drop it. > >> > >>> > >> > >>> , when did your daughters seizures first start? As far as I know my son has no seizure activity at this time, but its my biggest worry. > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 Have you ever used the diastat rectal med to stop a seizure? To: polymicrogyria From: divewithmelissa@... Date: Wed, 11 Jan 2012 12:23:51 -0500 Subject: Re: Hi, New to the group It's BAD seizures that cause longer than a couple hours of regression. Clusters or status. Sent from my iPhone > > Thank you, that's what I'm fearing. I guess there is nothing to be done about it. > > To: polymicrogyria > From: divewithmelissa@... > Date: Wed, 11 Jan 2012 12:10:57 -0500 > Subject: Re: Hi, New to the group > > > > > > > > > > > > > > > > > > > > > > > > > > > > > She has temporary regressions. She also doesn't have seizures when sick (???) and never runs a fever (EVER). Her only regression was with subclinical status. There was definite regression then. > > > > Sent from my iPhone > > > > > > > >> > >> - Does your daughter regress with the seizures? My son is 6 and doesn't have seizures unless he is sick or with a fever. I'm just dreading puberty because he has been making great strides this year and I'm afraid all will be lost. > >> > >> To: polymicrogyria > >> From: divewithmelissa@... > >> Date: Wed, 11 Jan 2012 09:16:52 -0500 > >> Subject: Re: Hi, New to the group > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> My daughter had her first seizure at 18 months. She went off all medication from 3-5 years then they started again. She didn't get BAD until age 10 when everything went crazy (hello puberty!). > >> > >> > >> > >> > >> > >> > >> > >> Sent from my iPhone > >> > >> > >> > >> > >> > >> > >> > >>> Kim, your baby sounds just like mine... My son (left pmg) is just about one and will fight so hard to avoid using his right arm. Its always fisted, more so when concentrating on something. He uses his feet to play instead of his hand. As soon as I get something in that hand he'll drop it. > >> > >>> > >> > >>> , when did your daughters seizures first start? As far as I know my son has no seizure activity at this time, but its my biggest worry. > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 We were told Medicaid was not an option because of our income. Same with SSI. Drives me crazy!! Sent from my iPhone > > Getting started in the Early Start program is a great thing. Keep your ears out for other resources as much as you can. See if you can get a case manager. If not already, try to get on Medicaid. We weren't for the first 13 months of Maureen's life, and there were months where our Med bills were more than our house payment, and that was with private insurance through my husband's job. Once you get Medicaid, things become a lot easier. Many of the big Medical Supply Companies are more used to dealing with them. > > We also have home health nursing, which is a godsend, allowing me to get out of the house to run errands, or occasionally have a date night with my husband. > > Our Maureen seems to be a lot more impaired than average for PMG. She's almost 3, and is about the development of a 4 month old. She isn't sitting by herself, and certainly no walking or talking. She's pretty severely visually impaired as well. Her seizures have been under control for almost a year with the ketogenic diet, which we've been very thankful for. She has the PMG, as well as hypoplasia of the corpus collosum, and ventriculomegaly. The ventricles appear to be getting progressively bigger as well, but thank goodness, it doesn't seem to be due to fluid pressure. > > Someone asked a while back about genetics. A lot of people confuse genetic with hereditary. Something can be genetic, but not be hereditary. It was still caused by something wrong in the genes, but it's just a fluke, and won't be passed on. (An easy example of this is Down syndrome.) There are a few known genes that have been linked to PMG, but you can test negative for those genes and still have PMG. > > Everyone's advice is right though, right now, nobody seems to think it's hereditary. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 Too many times to think of. We have one for in the cheek at school now that she's older (not as effective, but she's 14 years old...). I think there is diastat all over my house. Lol. Always within reach - even now! Sent from my iPhone > > Have you ever used the diastat rectal med to stop a seizure? > > To: polymicrogyria > From: divewithmelissa@... > Date: Wed, 11 Jan 2012 12:23:51 -0500 > Subject: Re: Hi, New to the group > > > > > > > > > > > > > > > > > > > > > > > > > > > > > It's BAD seizures that cause longer than a couple hours of regression. Clusters or status. > > > > Sent from my iPhone > > > > > > > >> > >> Thank you, that's what I'm fearing. I guess there is nothing to be done about it. > >> > >> To: polymicrogyria > >> From: divewithmelissa@... > >> Date: Wed, 11 Jan 2012 12:10:57 -0500 > >> Subject: Re: Hi, New to the group > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> She has temporary regressions. She also doesn't have seizures when sick (???) and never runs a fever (EVER). Her only regression was with subclinical status. There was definite regression then. > >> > >> > >> > >> Sent from my iPhone > >> > >> > >> > >> > >> > >> > >> > >>> > >> > >>> - Does your daughter regress with the seizures? My son is 6 and doesn't have seizures unless he is sick or with a fever. I'm just dreading puberty because he has been making great strides this year and I'm afraid all will be lost. > >> > >>> > >> > >>> To: polymicrogyria > >> > >>> From: divewithmelissa@... > >> > >>> Date: Wed, 11 Jan 2012 09:16:52 -0500 > >> > >>> Subject: Re: Hi, New to the group > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> My daughter had her first seizure at 18 months. She went off all medication from 3-5 years then they started again. She didn't get BAD until age 10 when everything went crazy (hello puberty!). > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> Sent from my iPhone > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>>> Kim, your baby sounds just like mine... My son (left pmg) is just about one and will fight so hard to avoid using his right arm. Its always fisted, more so when concentrating on something. He uses his feet to play instead of his hand. As soon as I get something in that hand he'll drop it. > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> , when did your daughters seizures first start? As far as I know my son has no seizure activity at this time, but its my biggest worry. > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 The same with us but we recently filled out the paperwork for DDS and was surprised that they covered thing that ins didn't. They call it a one time grant even though its not one time. I wish I filled the paperwork out when he was a baby! They are covering his diapers and wipes and money for a babysitter to get a break. To: polymicrogyria From: divewithmelissa@... Date: Wed, 11 Jan 2012 12:30:00 -0500 Subject: Re: Hi, New to the group We were told Medicaid was not an option because of our income. Same with SSI. Drives me crazy!! Sent from my iPhone > > Getting started in the Early Start program is a great thing. Keep your ears out for other resources as much as you can. See if you can get a case manager. If not already, try to get on Medicaid. We weren't for the first 13 months of Maureen's life, and there were months where our Med bills were more than our house payment, and that was with private insurance through my husband's job. Once you get Medicaid, things become a lot easier. Many of the big Medical Supply Companies are more used to dealing with them. > > We also have home health nursing, which is a godsend, allowing me to get out of the house to run errands, or occasionally have a date night with my husband. > > Our Maureen seems to be a lot more impaired than average for PMG. She's almost 3, and is about the development of a 4 month old. She isn't sitting by herself, and certainly no walking or talking. She's pretty severely visually impaired as well. Her seizures have been under control for almost a year with the ketogenic diet, which we've been very thankful for. She has the PMG, as well as hypoplasia of the corpus collosum, and ventriculomegaly. The ventricles appear to be getting progressively bigger as well, but thank goodness, it doesn't seem to be due to fluid pressure. > > Someone asked a while back about genetics. A lot of people confuse genetic with hereditary. Something can be genetic, but not be hereditary. It was still caused by something wrong in the genes, but it's just a fluke, and won't be passed on. (An easy example of this is Down syndrome.) There are a few known genes that have been linked to PMG, but you can test negative for those genes and still have PMG. > > Everyone's advice is right though, right now, nobody seems to think it's hereditary. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 LOL - I've only used it once but I have one in my car, in my bag, in the cabinet and when he gets sick I move it all over the house so its always within reach. I was just wondering because someone told me that could nip it in the bud and prevent further ones. I guess they were misinformed. To: polymicrogyria From: divewithmelissa@... Date: Wed, 11 Jan 2012 12:31:09 -0500 Subject: Re: Hi, New to the group Too many times to think of. We have one for in the cheek at school now that she's older (not as effective, but she's 14 years old...). I think there is diastat all over my house. Lol. Always within reach - even now! Sent from my iPhone > > Have you ever used the diastat rectal med to stop a seizure? > > To: polymicrogyria > From: divewithmelissa@... > Date: Wed, 11 Jan 2012 12:23:51 -0500 > Subject: Re: Hi, New to the group > > > > > > > > > > > > > > > > > > > > > > > > > > > > > It's BAD seizures that cause longer than a couple hours of regression. Clusters or status. > > > > Sent from my iPhone > > > > > > > >> > >> Thank you, that's what I'm fearing. I guess there is nothing to be done about it. > >> > >> To: polymicrogyria > >> From: divewithmelissa@... > >> Date: Wed, 11 Jan 2012 12:10:57 -0500 > >> Subject: Re: Hi, New to the group > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> She has temporary regressions. She also doesn't have seizures when sick (???) and never runs a fever (EVER). Her only regression was with subclinical status. There was definite regression then. > >> > >> > >> > >> Sent from my iPhone > >> > >> > >> > >> > >> > >> > >> > >>> > >> > >>> - Does your daughter regress with the seizures? My son is 6 and doesn't have seizures unless he is sick or with a fever. I'm just dreading puberty because he has been making great strides this year and I'm afraid all will be lost. > >> > >>> > >> > >>> To: polymicrogyria > >> > >>> From: divewithmelissa@... > >> > >>> Date: Wed, 11 Jan 2012 09:16:52 -0500 > >> > >>> Subject: Re: Hi, New to the group > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> My daughter had her first seizure at 18 months. She went off all medication from 3-5 years then they started again. She didn't get BAD until age 10 when everything went crazy (hello puberty!). > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> Sent from my iPhone > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>>> Kim, your baby sounds just like mine... My son (left pmg) is just about one and will fight so hard to avoid using his right arm. Its always fisted, more so when concentrating on something. He uses his feet to play instead of his hand. As soon as I get something in that hand he'll drop it. > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> , when did your daughters seizures first start? As far as I know my son has no seizure activity at this time, but its my biggest worry. > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 Yeah. We tried. Not going to happen in this state! Sent from my iPhone > > > The same with us but we recently filled out the paperwork for DDS and was surprised that they covered thing that ins didn't. They call it a one time grant even though its not one time. I wish I filled the paperwork out when he was a baby! They are covering his diapers and wipes and money for a babysitter to get a break. > > To: polymicrogyria > From: divewithmelissa@... > Date: Wed, 11 Jan 2012 12:30:00 -0500 > Subject: Re: Hi, New to the group > > > > > > > > > > > > > > > > > > > > > > > > > > > > > We were told Medicaid was not an option because of our income. Same with SSI. Drives me crazy!! > > > > Sent from my iPhone > > > > On Jan 11, 2012, at 12:22 PM, Spezia wrote: > > > >> > >> Getting started in the Early Start program is a great thing. Keep your ears out for other resources as much as you can. See if you can get a case manager. If not already, try to get on Medicaid. We weren't for the first 13 months of Maureen's life, and there were months where our Med bills were more than our house payment, and that was with private insurance through my husband's job. Once you get Medicaid, things become a lot easier. Many of the big Medical Supply Companies are more used to dealing with them. > >> > >> We also have home health nursing, which is a godsend, allowing me to get out of the house to run errands, or occasionally have a date night with my husband. > >> > >> Our Maureen seems to be a lot more impaired than average for PMG. She's almost 3, and is about the development of a 4 month old. She isn't sitting by herself, and certainly no walking or talking. She's pretty severely visually impaired as well. Her seizures have been under control for almost a year with the ketogenic diet, which we've been very thankful for. She has the PMG, as well as hypoplasia of the corpus collosum, and ventriculomegaly. The ventricles appear to be getting progressively bigger as well, but thank goodness, it doesn't seem to be due to fluid pressure. > >> > >> Someone asked a while back about genetics. A lot of people confuse genetic with hereditary. Something can be genetic, but not be hereditary. It was still caused by something wrong in the genes, but it's just a fluke, and won't be passed on. (An easy example of this is Down syndrome.) There are a few known genes that have been linked to PMG, but you can test negative for those genes and still have PMG. > >> > >> Everyone's advice is right though, right now, nobody seems to think it's hereditary. > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 No. They are kind of right. It stops the seizure - and keeps working for a couple of hours. It is rectal Valium (fancy huh??). We have one in her room, the closet in the hall outside her room, the kitchen, rec room, master bedroom, purse and both cars lol. The reason is because one time she had a really really strange seizure that freaked me OUT and I forgot about even having it. Bundled her into the car and drove to (then incompetent) ER. Oops! Seizure mom fail!! Sent from my iPhone > > LOL - I've only used it once but I have one in my car, in my bag, in the cabinet and when he gets sick I move it all over the house so its always within reach. I was just wondering because someone told me that could nip it in the bud and prevent further ones. I guess they were misinformed. > > To: polymicrogyria > From: divewithmelissa@... > Date: Wed, 11 Jan 2012 12:31:09 -0500 > Subject: Re: Hi, New to the group > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Too many times to think of. We have one for in the cheek at school now that she's older (not as effective, but she's 14 years old...). I think there is diastat all over my house. Lol. Always within reach - even now! > > > > Sent from my iPhone > > > > > > > >> > >> Have you ever used the diastat rectal med to stop a seizure? > >> > >> To: polymicrogyria > >> From: divewithmelissa@... > >> Date: Wed, 11 Jan 2012 12:23:51 -0500 > >> Subject: Re: Hi, New to the group > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> It's BAD seizures that cause longer than a couple hours of regression. Clusters or status. > >> > >> > >> > >> Sent from my iPhone > >> > >> > >> > >> > >> > >> > >> > >>> > >> > >>> Thank you, that's what I'm fearing. I guess there is nothing to be done about it. > >> > >>> > >> > >>> To: polymicrogyria > >> > >>> From: divewithmelissa@... > >> > >>> Date: Wed, 11 Jan 2012 12:10:57 -0500 > >> > >>> Subject: Re: Hi, New to the group > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> She has temporary regressions. She also doesn't have seizures when sick (???) and never runs a fever (EVER). Her only regression was with subclinical status. There was definite regression then. > >> > >>> > >> > >>> > >> > >>> > >> > >>> Sent from my iPhone > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> - Does your daughter regress with the seizures? My son is 6 and doesn't have seizures unless he is sick or with a fever. I'm just dreading puberty because he has been making great strides this year and I'm afraid all will be lost. > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> To: polymicrogyria > >> > >>> > >> > >>>> From: divewithmelissa@... > >> > >>> > >> > >>>> Date: Wed, 11 Jan 2012 09:16:52 -0500 > >> > >>> > >> > >>>> Subject: Re: Hi, New to the group > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> My daughter had her first seizure at 18 months. She went off all medication from 3-5 years then they started again. She didn't get BAD until age 10 when everything went crazy (hello puberty!). > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> Sent from my iPhone > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>>> Kim, your baby sounds just like mine... My son (left pmg) is just about one and will fight so hard to avoid using his right arm. Its always fisted, more so when concentrating on something. He uses his feet to play instead of his hand. As soon as I get something in that hand he'll drop it. > >> > >>> > >> > >>>> > >> > >>> > >> > >>>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>>> , when did your daughters seizures first start? As far as I know my son has no seizure activity at this time, but its my biggest worry. > >> > >>> > >> > >>>> > >> > >>> > >> > >>>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> > >> > >>> > >> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 May I ask what DDS is? > > > > > > > >> > > > >> Getting started in the Early Start program is a great thing. Keep your ears out for other resources as much as you can. See if you can get a case manager. If not already, try to get on Medicaid. We weren't for the first 13 months of Maureen's life, and there were months where our Med bills were more than our house payment, and that was with private insurance through my husband's job. Once you get Medicaid, things become a lot easier. Many of the big Medical Supply Companies are more used to dealing with them. > > > >> > > > >> We also have home health nursing, which is a godsend, allowing me to get out of the house to run errands, or occasionally have a date night with my husband. > > > >> > > > >> Our Maureen seems to be a lot more impaired than average for PMG. She's almost 3, and is about the development of a 4 month old. She isn't sitting by herself, and certainly no walking or talking. She's pretty severely visually impaired as well. Her seizures have been under control for almost a year with the ketogenic diet, which we've been very thankful for. She has the PMG, as well as hypoplasia of the corpus collosum, and ventriculomegaly. The ventricles appear to be getting progressively bigger as well, but thank goodness, it doesn't seem to be due to fluid pressure. > > > >> > > > >> Someone asked a while back about genetics. A lot of people confuse genetic with hereditary. Something can be genetic, but not be hereditary. It was still caused by something wrong in the genes, but it's just a fluke, and won't be passed on. (An easy example of this is Down syndrome.) There are a few known genes that have been linked to PMG, but you can test negative for those genes and still have PMG. > > > >> > > > >> Everyone's advice is right though, right now, nobody seems to think it's hereditary. > > > >> > > > >> > > > >> > > > >> Quote Link to comment Share on other sites More sharing options...
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