Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 It's going to be the state. Not sure what it is in each state. Developmental Disabilities Service?? Best guess. Social workers at the children's hospital - greatest resource for insurance / money! Sent from my iPhone > 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...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 I can't promise, but there may be a way around that. (This is why it's good to find a case manager or someone who knows how this stuff works.) We also had too much income for SSI and Medicaid. In Texas, at least, there are programs called Waiver Programs, that pretty much " waive " the income of the parents, and just look at the income of the kid (0!). The one we're on is called MDCP or Medically Dependent Children's Program. Usually there are long waiting lists for these programs. Here it's 5-8 years. First step is GET ON THESE LISTS. Nothing can happen until that happens. At the least, you'll be waiting a couple of years. But sometimes, (this is where it gets really weird) there's little tricks to get yourself bumped to the top of the lists. Again, this is where you need to know someone who knows the system. That's what happened to us. We got on the list, said the secret code words, filled out some forms and other garbage, and within 2 months, we had MDCP, and with it Medicaid. I can tell you how to do it here, in TX, but don't know how it goes in other states. > > > > > 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 department of developmental services. To: polymicrogyria From: divewithmelissa@... Date: Wed, 11 Jan 2012 12:50:27 -0500 Subject: Re: Re: Hi, New to the group It's going to be the state. Not sure what it is in each state. Developmental Disabilities Service?? Best guess. Social workers at the children's hospital - greatest resource for insurance / money! Sent from my iPhone > 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...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 good to know, thank you. To: polymicrogyria From: divewithmelissa@... Date: Wed, 11 Jan 2012 12:42:10 -0500 Subject: Re: Hi, New to the group 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 Here it's called BCMH - and they waive a portion of tw income based on living expensive. Ohio is not a nice state for disabled children. Family of 4 no more than $46,000. With a waiver. That's it. Every other state we've lived in has given her insurance or secondary insurance. Washington state was the best. Sent from my iPhone On Jan 11, 2012, at 12:50 PM, " Spezia " wrote: > I can't promise, but there may be a way around that. (This is why it's good to find a case manager or someone who knows how this stuff works.) We also had too much income for SSI and Medicaid. > > In Texas, at least, there are programs called Waiver Programs, that pretty much " waive " the income of the parents, and just look at the income of the kid (0!). The one we're on is called MDCP or Medically Dependent Children's Program. Usually there are long waiting lists for these programs. Here it's 5-8 years. > > First step is GET ON THESE LISTS. Nothing can happen until that happens. At the least, you'll be waiting a couple of years. But sometimes, (this is where it gets really weird) there's little tricks to get yourself bumped to the top of the lists. Again, this is where you need to know someone who knows the system. That's what happened to us. We got on the list, said the secret code words, filled out some forms and other garbage, and within 2 months, we had MDCP, and with it Medicaid. I can tell you how to do it here, in TX, but don't know how it goes in other states. > > > > > > > > > > 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 I am in Mi and we have a secondary insurance through the state. We pay for it and the price we pay is based on our income. It's called Children's Special Health insurance and it covers pretty much all of our specialist care that our first insurance won't cover. It's been super helpful! It paid for my sons hearing aids and his Botox injections. “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > Here it's called BCMH - and they waive a portion of tw income based on living expensive. Ohio is not a nice state for disabled children. Family of 4 no more than $46,000. With a waiver. That's it. Every other state we've lived in has given her insurance or secondary insurance. Washington state was the best. > > > > Sent from my iPhone > > On Jan 11, 2012, at 12:50 PM, " Spezia " wrote: > > > I can't promise, but there may be a way around that. (This is why it's good to find a case manager or someone who knows how this stuff works.) We also had too much income for SSI and Medicaid. > > > > In Texas, at least, there are programs called Waiver Programs, that pretty much " waive " the income of the parents, and just look at the income of the kid (0!). The one we're on is called MDCP or Medically Dependent Children's Program. Usually there are long waiting lists for these programs. Here it's 5-8 years. > > > > First step is GET ON THESE LISTS. Nothing can happen until that happens. At the least, you'll be waiting a couple of years. But sometimes, (this is where it gets really weird) there's little tricks to get yourself bumped to the top of the lists. Again, this is where you need to know someone who knows the system. That's what happened to us. We got on the list, said the secret code words, filled out some forms and other garbage, and within 2 months, we had MDCP, and with it Medicaid. I can tell you how to do it here, in TX, but don't know how it goes in other states. > > > > > > > > > > > > > > > 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 I have tried so many different ways. Especially now when our deductible is going to be met by February ($1,000) and after that we ride toward the out of pocket maximum ($3,000) by April. I just wish prescriptions applied to those - $400 for the last one (out of pocket). That hurt 3 weeks after Christmas. Sent from my iPhone > I am in Mi and we have a secondary insurance through the state. We pay for it and the price we pay is based on our income. It's called Children's Special Health insurance and it covers pretty much all of our specialist care that our first insurance won't cover. It's been super helpful! It paid for my sons hearing aids and his Botox injections. > > “I am learning all the time. The tombstone will be my diploma.†> — Eartha Kitt > > > > > Here it's called BCMH - and they waive a portion of tw income based on living expensive. Ohio is not a nice state for disabled children. Family of 4 no more than $46,000. With a waiver. That's it. Every other state we've lived in has given her insurance or secondary insurance. Washington state was the best. > > > > > > > > Sent from my iPhone > > > > On Jan 11, 2012, at 12:50 PM, " Spezia " wrote: > > > > > I can't promise, but there may be a way around that. (This is why it's good to find a case manager or someone who knows how this stuff works.) We also had too much income for SSI and Medicaid. > > > > > > In Texas, at least, there are programs called Waiver Programs, that pretty much " waive " the income of the parents, and just look at the income of the kid (0!). The one we're on is called MDCP or Medically Dependent Children's Program. Usually there are long waiting lists for these programs. Here it's 5-8 years. > > > > > > First step is GET ON THESE LISTS. Nothing can happen until that happens. At the least, you'll be waiting a couple of years. But sometimes, (this is where it gets really weird) there's little tricks to get yourself bumped to the top of the lists. Again, this is where you need to know someone who knows the system. That's what happened to us. We got on the list, said the secret code words, filled out some forms and other garbage, and within 2 months, we had MDCP, and with it Medicaid. I can tell you how to do it here, in TX, but don't know how it goes in other states. > > > > > > > > > > > > > > > > > > > > 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 Thanks for the info. We have insurance although will look into a suuplement becasue with all the different dr appointments we go to, everything adds up quickly! We were told we wouldnt qualify for certain things based on our income but want to try the medical waiver, where our income isnt considered and its based on our child's condition. I'll look into DDS too. I knwo it varies state to state - we're in CA. > > > > > > > > > > > > > > > > > > > >> > > > > > > > > > >> 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 I think California (used to be) is like Washington. As in they provide secondary (or primary if needed) for all disabled children (there are standards). We got diapers, hot tub (no therapy pool in 100 miles) and respite care (saved my sanity!!!). A social worker came to our house every couple of months (which sucked, but hey). Sent from my iPhone > Thanks for the info. We have insurance although will look into a suuplement becasue with all the different dr appointments we go to, everything adds up quickly! We were told we wouldnt qualify for certain things based on our income but want to try the medical waiver, where our income isnt considered and its based on our child's condition. I'll look into DDS too. I knwo it varies state to state - we're in CA. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > >> 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 I have used Diastat several times. The seizure usually stops within 20 sec after administered. > > 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 I'm so pleased she is doing well. What got the seizures under control? Is she on medication for them.? Good luck for 2012, I hope it brings you lots of happy times. Kat ________________________________ To: polymicrogyria Sent: Thursday, 12 January 2012 1:36 AM Subject: Re: Re: Hi, New to the group Yes she does they started at 10months and were hard to get under control at first she had been 17months seizure free just before xmas when she had a few prolonged seizures which ended up being a kidney infection but she's back toi her old self again over the xmas period she has started to pull herself up really well in her cot using the one hand and has started to say mama not directly at me but its progress and were over the moon hopefully 2012 will bring loads more of achievements for us all to celebrate 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 11, 2012 Report Share Posted January 11, 2012 Hi Kara lol, Im actually in New Zealand, so a whole world away from most people on here. I have not seen anyone on here from this side of the world, I think one person in Australia. I don't know anyone in NZ with the same issues as our girl. Thats why this support group has been so good, its great to talk to other parents going through the same stuff. Thanks for sharing! Kat ________________________________ To: " polymicrogyria " <polymicrogyria > Sent: Thursday, 12 January 2012 2:02 AM Subject: Re: Hi, New to the group  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 Our girl has excess fluid and the ventricles are odd shape/size, this is something they are keeping an eye on, sounds similar to what you have mentioned. She has an MRI next mth. Our genetic counsellor told us PMG isn't something we passed on her her, that something went wrong in her genetic code when she was developing.... we got told 25% chance of having another child the same unless the PMG can be linked to a specific syndrome as its PMG is normally one symptom of something bigger and in our girls case comes with the delay, spams, visual probs and brain tumour (now removed). He thinks he knows which syndrome she may have and if its than less than 1% chance of our next child having it. But at the end of the day, she has what she has and all we can do is take one day at a time and do all we can for her along the way. Thanks for sharing Kat ________________________________ To: polymicrogyria Sent: Thursday, 12 January 2012 6:22 AM Subject: RE: Hi, New to the group  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 15, 2012 Report Share Posted January 15, 2012 Yes Kim, my daughter, 15 months old, she uses her head when I hold her left hand and sometimes even without I holding her hand she uses her head more often which scares me very much, does that happen to ur son too??! Best Regards, Lina > 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 15, 2012 Report Share Posted January 15, 2012 Hi, my name is and I just became a part of this group. My daughter is 8 months old, and was diagnosed with polymicrogyria about 2 weeks ago. We've had an emotional 2012... Along with PMG she was diagnosed with Malrotation, and under went surgery on Jan 4. Im still in some shock...and trying to hold it all together while raising her and my 2 1/2 yr old son. My husband and our families are a great support system but none of them have gone through any of this before. It's all still so fresh and I don't really know where to go from here...any advice would be great. Thank you. Sent from my iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2012 Report Share Posted January 15, 2012 Hi Welcome to the group, we are here to listen & support & understand what you are going through. I have just posted to Julissa about my girl if you would like to read... What is Malrotation if you done mind me asking? My girl had a brain tumour removed at 4mths it is scarey watching them going thru surgery! Hope you are getting some medical support & home help? Kat -original message- Subject: Re: Hi, New to the group Date: 16/01/2012 1:45 am Hi, my name is and I just became a part of this group. My daughter is 8 months old, and was diagnosed with polymicrogyria about 2 weeks ago. We've had an emotional 2012... Along with PMG she was diagnosed with Malrotation, and under went surgery on Jan 4. Im still in some shock...and trying to hold it all together while raising her and my 2 1/2 yr old son. My husband and our families are a great support system but none of them have gone through any of this before. It's all still so fresh and I don't really know where to go from here...any advice would be great. Thank you. Sent from my iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2012 Report Share Posted January 15, 2012 Hi Kat, Thanks for your response. I will definitely take a look at your post. I appreciate your support as well. Malrotation is when the intestines, colon, and appendix are on the left side instead of right side of her belly. Which can cause twisting on the bowels, and lead to very serious complications. But her surgery was a success. But you are right....it is extremely scary. I don't have much help at home. My husband works crazy hours, and to be honest my daughter doesn't like many people. But I do have a lot of people to confide in and talk to, but no one that understands. So thanks for listening. Sincerely, Sent from my iPad > Hi > Welcome to the group, we are here to listen & support & understand what you are going through. I have just posted to Julissa about my girl if you would like to read... > > What is Malrotation if you done mind me asking? My girl had a brain tumour removed at 4mths it is scarey watching them going thru surgery! Hope you are getting some medical support & home help? > > Kat > > -original message- > Subject: Re: Hi, New to the group > > Date: 16/01/2012 1:45 am > > Hi, my name is and I just became a part of this group. My daughter is 8 months old, and was diagnosed with polymicrogyria about 2 weeks ago. We've had an emotional 2012... Along with PMG she was diagnosed with Malrotation, and under went surgery on Jan 4. Im still in some shock...and trying to hold it all together while raising her and my 2 1/2 yr old son. My husband and our families are a great support system but none of them have gone through any of this before. It's all still so fresh and I don't really know where to go from here...any advice would be great. Thank you. > > > > Sent from my iPad > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2012 Report Share Posted January 15, 2012 Hi , Welcome to the group. I remember when my son was first diagnosed I felt so alone and angry. My son was diagnosed while in the nicu at three weeks of age. I will never forget looking at the other parents enviously as they were being released from the nicu with healthy babies. I couldn't wait to be outta there but was also so scared for what the future may hold. The neurologist gave us such a broad description of what may or may not become of our son. I remember sitting in that meeting with the neuro, social worker, a nurse, and the chaplin feeling so angry and like I was the only person in the world with these problems. Do you know what I mean? Anyway we are still fairly new to this as well. My son is 14 months old and doesn't sit up or crawl yet. BUT he is a happy little guy and works his tail off to accomplish anything. He's an inspiration to us. He has really helped me to appreciate my life and loved ones. He has pulmonary issues and is partially deaf and has cerebral palsy and he chugs along with a big ole smile day after day. One can't help but be happy when he's around.:-) Find a support or playgroup with other special needs families. That helps A LOT. I meet with one every week through earlyon and I love it. I look forward to unloading with the other parents that understand all the craziness that comes with a special needs child (nine million doctors appointments, insurance woes, specialists, special equipment or therapies, hospitals). Lots of love and peace to you and your family. “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > Hi, my name is and I just became a part of this group. My daughter is 8 months old, and was diagnosed with polymicrogyria about 2 weeks ago. We've had an emotional 2012... Along with PMG she was diagnosed with Malrotation, and under went surgery on Jan 4. Im still in some shock...and trying to hold it all together while raising her and my 2 1/2 yr old son. My husband and our families are a great support system but none of them have gone through any of this before. It's all still so fresh and I don't really know where to go from here...any advice would be great. Thank you. > > > > Sent from my iPad > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2012 Report Share Posted January 15, 2012 Wow i can so relate to everything you jus wrote, its like you jus read my mind. Afta 16mths so far i can relate and am thankful for this support group & think we r doing pretty well. Thnx for sharing. Kat -original message- Subject: Re: Hi, New to the group Date: 16/01/2012 3:56 pm Hi , Welcome to the group. I remember when my son was first diagnosed I felt so alone and angry. My son was diagnosed while in the nicu at three weeks of age. I will never forget looking at the other parents enviously as they were being released from the nicu with healthy babies. I couldn't wait to be outta there but was also so scared for what the future may hold. The neurologist gave us such a broad description of what may or may not become of our son. I remember sitting in that meeting with the neuro, social worker, a nurse, and the chaplin feeling so angry and like I was the only person in the world with these problems. Do you know what I mean? Anyway we are still fairly new to this as well. My son is 14 months old and doesn't sit up or crawl yet. BUT he is a happy little guy and works his tail off to accomplish anything. He's an inspiration to us. He has really helped me to appreciate my life and loved ones. He has pulmonary issues and is partially deaf and has cerebral palsy and he chugs along with a big ole smile day after day. One can't help but be happy when he's around.:-) Find a support or playgroup with other special needs families. That helps A LOT. I meet with one every week through earlyon and I love it. I look forward to unloading with the other parents that understand all the craziness that comes with a special needs child (nine million doctors appointments, insurance woes, specialists, special equipment or therapies, hospitals). Lots of love and peace to you and your family. “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > Hi, my name is and I just became a part of this group. My daughter is 8 months old, and was diagnosed with polymicrogyria about 2 weeks ago. We've had an emotional 2012... Along with PMG she was diagnosed with Malrotation, and under went surgery on Jan 4. Im still in some shock...and trying to hold it all together while raising her and my 2 1/2 yr old son. My husband and our families are a great support system but none of them have gone through any of this before. It's all still so fresh and I don't really know where to go from here...any advice would be great. Thank you. > > > > Sent from my iPad > > Quote Link to comment Share on other sites More sharing options...
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