Guest guest Posted March 9, 2007 Report Share Posted March 9, 2007 My name is Machaela. I am a new member.I have a two year old daughter, Jessie who was diagnosed with BPES when she was approx 8mths old. We are in Australia and Jessie is having her first surgery in December this year. We have never met or seen another child with BPES until we found this group. We are overjoyed to have found it!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2007 Report Share Posted March 9, 2007 Hi It is wonderful to find other people isn't it? I know that feeling! Our son Todd has BPES although he is now nearly 5 we have only known what it is actaully called for about a year, before that the drs said it was just ptosis. This group has been brilliant for pointing us in the right directions to do the best for Todd. All the best for the surgery. Neil, Caroline & Todd UK --- In blepharophimosis , " macster74 " <macster74@...> wrote: > > My name is Machaela. I am a new member.I have a two year old daughter, > Jessie who was diagnosed with BPES when she was approx 8mths old. We > are in Australia and Jessie is having her first surgery in December > this year. We have never met or seen another child with BPES until we > found this group. We are overjoyed to have found it!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Thank you! Well, I am a full time teacher here in Okinawa. I teach for DoDDS (Department of Defense Dependant Schools), so 3 months is not an option for me unless we wait until this summer, which would be too long. I hope to get word about a consultation with the surgeons soon so I can ask them a lot of questions. We would have to go to Hawaii if we get the surgery done. > > > > Hello! My name is Ariel and I am a proud mommy to a 12 month old > > with positional plagiocephly named Kayden! I live in Okinawa, Japan > > with my husband who is active duty military. Kayden had congenital > > torticollis which caused his plagio. Thankfully the tort is no > > longer present thanks to pt, but his headshape has not changed. > > > > Right now we are going through the process of getting treatment for > > Kayden. Tricare, our military medical insurance provider, will not > > cover the cost of bands or helmets. Kayden's deveolpmental pedi is > > sending pictures of his head to surgeons in Hawaii to see if we > > should have a consultation. Helmets/bands are pretty much a no- go > > for us because we are all the way over here. If we were in the > > states we would probably opt for the band, but since we would not be > > able to all of the follow up appointments required for the band, it > > looks like it's not an option. > > > > The thought of surgery really frightens me. I was wondering if > > there is anyone here who's child has had it? > > > > Well, it's nice to meet you all! > > Ariel > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Before bagging the banding idea, you may want to see if the specialist nearest you can work with you (i.e. by not having you come as often). I am sure you aren't the only one in this situation. Best wishes. lisa > > Hello! My name is Ariel and I am a proud mommy to a 12 month old > with positional plagiocephly named Kayden! I live in Okinawa, Japan > with my husband who is active duty military. Kayden had congenital > torticollis which caused his plagio. Thankfully the tort is no > longer present thanks to pt, but his headshape has not changed. > > Right now we are going through the process of getting treatment for > Kayden. Tricare, our military medical insurance provider, will not > cover the cost of bands or helmets. Kayden's deveolpmental pedi is > sending pictures of his head to surgeons in Hawaii to see if we > should have a consultation. Helmets/bands are pretty much a no-go > for us because we are all the way over here. If we were in the > states we would probably opt for the band, but since we would not be > able to all of the follow up appointments required for the band, it > looks like it's not an option. > > The thought of surgery really frightens me. I was wondering if > there is anyone here who's child has had it? > > Well, it's nice to meet you all! > Ariel > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 Hi There! I am new to the idea of my daughter needing a doc band. She is now 12 mo old. When I was informed of it a few days ago, the doctor informed me of a couple people who paid for the band themselves. They then wrote to a politician stating how our husbands are putting their lives on the line and their children have to pay for it (in short). They got their money reimbursed. I don't know how it is overseas being as I have been lucky enough not to have to go. I hope everything works out for the best. > > > > Hello! My name is Ariel and I am a proud mommy to a 12 month old > > with positional plagiocephly named Kayden! I live in Okinawa, > Japan > > with my husband who is active duty military. Kayden had > congenital > > torticollis which caused his plagio. Thankfully the tort is no > > longer present thanks to pt, but his headshape has not changed. > > > > Right now we are going through the process of getting treatment > for > > Kayden. Tricare, our military medical insurance provider, will > not > > cover the cost of bands or helmets. Kayden's deveolpmental pedi > is > > sending pictures of his head to surgeons in Hawaii to see if we > > should have a consultation. Helmets/bands are pretty much a no- go > > for us because we are all the way over here. If we were in the > > states we would probably opt for the band, but since we would not > be > > able to all of the follow up appointments required for the band, > it > > looks like it's not an option. > > > > The thought of surgery really frightens me. I was wondering if > > there is anyone here who's child has had it? > > > > Well, it's nice to meet you all! > > Ariel > > > Quote Link to comment Share on other sites More sharing options...
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