Guest guest Posted October 20, 2011 Report Share Posted October 20, 2011 We have a ppo through my husbands company, but we also have another insurance we pay for through the state of MI that pays for any specialist care or equipment that the first insurance won't cover. He needed hearing aids and those were not covered by ppo so the Children's special helath(as its called here) covered them. His hearing loss is not due to Pmg by the way. His Pmg was caused by a virus called cmv which causes hearing loss. I'd look into the state of CA, and see what programs they offer. The special helath insurance was approved for us because of his hearing loss and cerebral palsy diagnosis. Pmg is just the description of the brain not the actual diagnosis, so you may have to wait and be diagnosed with an accepted need for special care, if that makes sense. I'm still new to this as my son is only 11 months, but that's what we have found thus far. Hope this is helpful. My best to you and your little one!! “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > Hello everybody, > My daughter Kiri was recently diagnosed with PMG and microcephaly. She is seven months old. I have a couple questions I was hoping some of you might be able to offer advice on. > > My husband and I are living and working abroad but will be moving home to California in a month to get better access to therapies for K. We're looking at different insurance options and are trying to find the best fit. We currently have international insurance but we'll need something more thorough when we get home. How regularly do you take your children in for doctor's visits? Would anyone recommend an HMO or is a PPO better for flexibility in finding better PMG specialists? I'm unsure what sort of plan to look for because I'm not sure what sort of care she will be needing. She hasn't had any identified seizures yet, but we have had an EEG done and she is definitely at risk. Are most seizure medications generic or are they mostly name-brand drugs? > > We have lots to figure out, obviously. Thanks so much for any help you can give us. > > - Arwen > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2011 Report Share Posted October 20, 2011 Hi Arwen, So sorry that on top of this new daunting diagnosis that you are also having to relocate. That is a lot of stress. My granddaughter is 3 months old and was diagnosed at 3 weeks of age. So, I don't have a LOT of experience with PMG yet, but I am also an RN for about 21 years so I have a vast amount of experience dealing with healthcare and insurance. My advice to you would be stay away from HMO's if you can help it. Most HMO's require you to get referrals for specialists and usually significantly limit the doctors so your choices are very limited. Trust me, it's hard enough to get a good doctor who knows how to care for our kids even with the best insurance. Also, California has a LOT of different rules especially regarding health care benefits so be sure to find out about what the laws are as to your insurance rights there. They usually have the lead in healthcare but I'm not sure what that means to residents. For example, California is the only state that doesn't allow nurses to transfer their licenses there. It's a whole other world out west:) As for seizure medications, I can't give you specific information about which meds are available by generic vs brand. In general, the older drugs have generics but the newer ones are brand only and are expensive. What you might see is a new drug that is the same as the old one but the newer version is long acting so it only has to be given once a day when they old one would have to be given several times a day. They do the same thing but you pay a lot more for the convenience of once a day dosing. On the other hand, there are new drugs that come out too. I haven't done much research on the seizure meds yet because we haven't faced it as yet and I prefer to not overwhelm myself every day. Soon I will look into it more. Brie has had many, many doctor's appointments in the last 2 months plus 2 hospitalizations and gets speech therapy to work on her swallowing 4 times a week, physical therapy 2 times a week, and occupational therapy 2 times a week. It's a LOT but the quicker you can get them into aggressive therapy the better they seem to do. But, don't get me wrong...money is always an issue. Check to see what type of Early Intervention programs they have for Medically Fragile children. Each state has one as far as I know..each are a little different. We would have settled for 1x week visit from a developmental specialist if we hadn't done our research with these wonderful people on the internet. Most of all you have to FIGHT for her right to get what you think she needs. I'm so sorry to say that it's never ending in our world right now. I do think that the doctor visits vary widely depending on what is happening with the kids at any given time. Not sure if that helps but I sure wish you all the very best. Catrina - Brie's Gram On Thu, Oct 20, 2011 at 3:46 AM, arosestockwell wrote: > ** > > > Hello everybody, > My daughter Kiri was recently diagnosed with PMG and microcephaly. She is > seven months old. I have a couple questions I was hoping some of you might > be able to offer advice on. > > My husband and I are living and working abroad but will be moving home to > California in a month to get better access to therapies for K. We're looking > at different insurance options and are trying to find the best fit. We > currently have international insurance but we'll need something more > thorough when we get home. How regularly do you take your children in for > doctor's visits? Would anyone recommend an HMO or is a PPO better for > flexibility in finding better PMG specialists? I'm unsure what sort of plan > to look for because I'm not sure what sort of care she will be needing. She > hasn't had any identified seizures yet, but we have had an EEG done and she > is definitely at risk. Are most seizure medications generic or are they > mostly name-brand drugs? > > We have lots to figure out, obviously. Thanks so much for any help you can > give us. > > - Arwen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2011 Report Share Posted October 20, 2011 I looked up the Early Steps for California, Arwen. Here's a link for them: http://www.dds.ca.gov/earlystart/ Hope you get answers soon. Catrina- Brie's Gram On Thu, Oct 20, 2011 at 3:46 AM, arosestockwell wrote: > ** > > > Hello everybody, > My daughter Kiri was recently diagnosed with PMG and microcephaly. She is > seven months old. I have a couple questions I was hoping some of you might > be able to offer advice on. > > My husband and I are living and working abroad but will be moving home to > California in a month to get better access to therapies for K. We're looking > at different insurance options and are trying to find the best fit. We > currently have international insurance but we'll need something more > thorough when we get home. How regularly do you take your children in for > doctor's visits? Would anyone recommend an HMO or is a PPO better for > flexibility in finding better PMG specialists? I'm unsure what sort of plan > to look for because I'm not sure what sort of care she will be needing. She > hasn't had any identified seizures yet, but we have had an EEG done and she > is definitely at risk. Are most seizure medications generic or are they > mostly name-brand drugs? > > We have lots to figure out, obviously. Thanks so much for any help you can > give us. > > - Arwen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2011 Report Share Posted October 20, 2011 My daughter has 2 therapies a week, and sees a neurologist once a month. It was a lot more before she had brain surgery. Buy the best insurance you can, and don't do an HMO. PS - even if seizure meds comes in generic they sometimes don't work well in that form. See Keppra or Lamictal. Sent from my iPhone > Hi Arwen, > > So sorry that on top of this new daunting diagnosis that you are also having > to relocate. That is a lot of stress. > > My granddaughter is 3 months old and was diagnosed at 3 weeks of age. So, I > don't have a LOT of experience with PMG yet, but I am also an RN for about > 21 years so I have a vast amount of experience dealing with healthcare and > insurance. My advice to you would be stay away from HMO's if you can help > it. Most HMO's require you to get referrals for specialists and usually > significantly limit the doctors so your choices are very limited. Trust me, > it's hard enough to get a good doctor who knows how to care for our kids > even with the best insurance. Also, California has a LOT of different rules > especially regarding health care benefits so be sure to find out about what > the laws are as to your insurance rights there. They usually have the lead > in healthcare but I'm not sure what that means to residents. For example, > California is the only state that doesn't allow nurses to transfer their > licenses there. It's a whole other world out west:) > > As for seizure medications, I can't give you specific information about > which meds are available by generic vs brand. In general, the older drugs > have generics but the newer ones are brand only and are expensive. What you > might see is a new drug that is the same as the old one but the newer > version is long acting so it only has to be given once a day when they old > one would have to be given several times a day. They do the same thing but > you pay a lot more for the convenience of once a day dosing. On the other > hand, there are new drugs that come out too. I haven't done much research on > the seizure meds yet because we haven't faced it as yet and I prefer to not > overwhelm myself every day. Soon I will look into it more. > > Brie has had many, many doctor's appointments in the last 2 months plus 2 > hospitalizations and gets speech therapy to work on her swallowing 4 times a > week, physical therapy 2 times a week, and occupational therapy 2 times a > week. It's a LOT but the quicker you can get them into aggressive therapy > the better they seem to do. But, don't get me wrong...money is always an > issue. > > Check to see what type of Early Intervention programs they have for > Medically Fragile children. Each state has one as far as I know..each are a > little different. We would have settled for 1x week visit from a > developmental specialist if we hadn't done our research with these wonderful > people on the internet. > > Most of all you have to FIGHT for her right to get what you think she needs. > I'm so sorry to say that it's never ending in our world right now. I do > think that the doctor visits vary widely depending on what is happening with > the kids at any given time. > > Not sure if that helps but I sure wish you all the very best. > > Catrina - Brie's Gram > > On Thu, Oct 20, 2011 at 3:46 AM, arosestockwell wrote: > >> ** >> >> >> Hello everybody, >> My daughter Kiri was recently diagnosed with PMG and microcephaly. She is >> seven months old. I have a couple questions I was hoping some of you might >> be able to offer advice on. >> >> My husband and I are living and working abroad but will be moving home to >> California in a month to get better access to therapies for K. We're looking >> at different insurance options and are trying to find the best fit. We >> currently have international insurance but we'll need something more >> thorough when we get home. How regularly do you take your children in for >> doctor's visits? Would anyone recommend an HMO or is a PPO better for >> flexibility in finding better PMG specialists? I'm unsure what sort of plan >> to look for because I'm not sure what sort of care she will be needing. She >> hasn't had any identified seizures yet, but we have had an EEG done and she >> is definitely at risk. Are most seizure medications generic or are they >> mostly name-brand drugs? >> >> We have lots to figure out, obviously. Thanks so much for any help you can >> give us. >> >> - Arwen >> >> >> > > > Quote Link to comment Share on other sites More sharing options...
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