Re: Re: Lucas and I'm in manic phase!

[Guest guest]

Sorry to butt in here, but I just had a quick question. When they tested your daughter for the connective tissue disorder, what probed you to have that testing done? Was it something you wanted done, or a physician suggetsted? Hope you don't mind me asking, but I wonder if my son could have the hypermobility type of EDS-maybe not, but seems to me that his joints-especially his knees, shoulders and arms could be affected. Just curious. Thanks. and Evanpmstphns <cjstephens@...> wrote: Deshea,Sounds like things are going well. What are Lucas' measurements? How long will he be in a brace? Out of curiousity, how many hours a day can Lucas be out of his brace? I am asking so many questions because Carly may have the same thing

next time we return. They talked about doing a bi-valve cast in April but it did not work out. So we may leave with a removable cast and return in two weeks for a brace. As you, I am very nervous but very excited. Carly has been in a cast for 17 months. I know Lucas has been in one even longer. We live in Tennessee where it is extremely HOT and HUMID. I would love for her to be able to go swimming, etc. Then we can go back to a cast in the fall. However, I am terrified her curves will not hold, especially if we are taking the brace off. I guess you will never know until you try. I think it is great you have already scheduled swim lessons and water therapy. I know he loves the water.Has Lucas been diagnosed with a connective tissue disorder? We went last week for testing at Vanderbilt for two types of Ehlers Danlos. They said it

would be three months before the results were in. Pam, Carly's mom >> okay, i'm frightening myself a little here. i've set up the> following for lucas for the summer:> > water physical therapy> swim classes> cardiology appt with an echocardiogram aug 21st> > also, i've been back and forth with erie figuring out how this> whole transition is going to work. lucas will leave erie with> a new removable cast. in 1 1/2 to 2 weeks the orthotist there> will mail us the tlso brace. i have big issues with the fit> even though he assures me that it will fit like the removable> cast. mmmm, maybe . . . so if we have any problems erie's> orthotist will contact rusty miller and coordinate having> lucas seen here so we don't have to go

back to erie. i'm a> little nervous to go back to children's in boston, but we did> always like rusty. if we have any difficulties, there is> always dr. goldberg at tufts.> > that's the news here,> deshea> __________________________________________________

[Guest guest]

Pam, Bridget has confirmed Ehler's Danlos and has been back in a brace since Nov after 14 months of casts. Her curve went from 38 back to 8 in her last cast but her out of cast was still 28 which is an improvement of 10 degrees but much reduced rotation and no rib hump and overall allignment better. In her brace she is 10 degrees and still after 5 months of bracing 28 out which menas we have maintained. Initially I was scared to have her out of brace much at all. Dr D'Astous says brace on 16 to 20 hours a day. Swimming time doesn't count as out of brace time. Connective tissue kids need muscle tone so exercise is very important. She takes her brace off to do PE at school and when they are outside playing at lunchtime as well as when she is exercising and obviously bathing. The longest we have left it off os probably 4 hrs when we were at a

water park. I can see her spine begin to wander to the left but then the brace is able to push it back again. We don't let her W sit or lean to the left into her curve. She sits at the table witha foot stool to help her posture and we encourage her to sit on a chair with both feet on the floor as its easier to keep your back straight in this position. It took some ecucating at the school but she is sitting so much straighter now. Good luck with the bracing stage and I hope you have a good physio who knows about connective tissue disorder kids. Bert and Bridgetpmstphns <cjstephens@...> wrote: Deshea,Sounds like things are going well. What are Lucas' measurements? How long will

he be in a brace? Out of curiousity, how many hours a day can Lucas be out of his brace? I am asking so many questions because Carly may have the same thing next time we return. They talked about doing a bi-valve cast in April but it did not work out. So we may leave with a removable cast and return in two weeks for a brace. As you, I am very nervous but very excited. Carly has been in a cast for 17 months. I know Lucas has been in one even longer. We live in Tennessee where it is extremely HOT and HUMID. I would love for her to be able to go swimming, etc. Then we can go back to a cast in the fall. However, I am terrified her curves will not hold, especially if we are taking the brace off. I guess you will never know until you try. I think it is great you have already scheduled swim lessons and water therapy. I know he loves the

water.Has Lucas been diagnosed with a connective tissue disorder? We went last week for testing at Vanderbilt for two types of Ehlers Danlos. They said it would be three months before the results were in. Pam, Carly's mom >> okay, i'm frightening myself a little here. i've set up the> following for lucas for the summer:> > water physical therapy> swim classes> cardiology appt with an echocardiogram aug 21st> > also, i've been back and forth with erie figuring out how this> whole transition is going to work. lucas will leave erie with> a new removable cast. in 1 1/2 to 2 weeks the orthotist there> will mail us the tlso brace. i have big issues with the fit> even though he assures me that it will fit like the

removable> cast. mmmm, maybe . . . so if we have any problems erie's> orthotist will contact rusty miller and coordinate having> lucas seen here so we don't have to go back to erie. i'm a> little nervous to go back to children's in boston, but we did> always like rusty. if we have any difficulties, there is> always dr. goldberg at tufts.> > that's the news here,> deshea> __________________________________________________

[Guest guest]

jenny,i know this was directed towards pam, but i thought i would respond as well.  has evan been seen by a geneticist?  i ended up taking lucas to a geneticist without being prompted by his pediatrician or dr. sanders.  i just thought it would be a good thing to do in case we were missing something obvious.  i know for the other types of eds, they do a skin biopsy, grow out the cells and test for abnormalities in collagen.  that is why it takes 3 mos to get the results back.  i do cell culture at work, so i know it takes a bit of time.  here's a link:  http://www.ednf.org/abouteds/index.php?option=com_content & task=view & id=29 & Itemid=32  it seems like they are still working out the details on how to diagnose some of the types with a lab test.desheaOn Jun 2, 2006, at 8:02 AM, wrote: Sorry to butt in here, but I just had a quick question. When they tested your daughter for the connective tissue disorder, what probed you to have that testing done? Was it something you wanted done, or a physician suggetsted? Hope you don't mind me asking, but I wonder if my son could have the hypermobility type of EDS-maybe not, but seems to me that his joints-especially his knees, shoulders and arms could be affected. Just curious. Thanks. and Evanpmstphns <cjstephens@...> wrote: Deshea,Sounds like things are going well.  What are Lucas' measurements?  How long will he be in a brace?  Out of curiousity, how many hours a day can Lucas be out of his brace?  I am asking so many questions because Carly may have the same thing next time we return.  They talked about doing a bi-valve cast in April but it did not work out.  So we may leave with a removable cast and return in two weeks for a brace.  As you, I am very nervous but very excited.  Carly has been in a cast for 17 months.  I know Lucas has been in one even longer.  We live in Tennessee where it is extremely HOT and HUMID.  I would love for her to be able to go swimming, etc.  Then we can go back to a cast in the fall.  However, I am terrified her curves will not hold, especially if we are taking the brace off.  I guess you will never know until you try. I think it is great you have already scheduled swim lessons and water therapy.  I know he loves the water.Has Lucas been diagnosed with a connective tissue disorder?  We went last week for testing at Vanderbilt for two types of Ehlers Danlos.  They said it would be three months before the results were in.  Pam, Carly's mom >> okay, i'm frightening myself a little here.  i've set up the> following for lucas for the summer:> > water physical therapy> swim classes> cardiology appt with an echocardiogram aug 21st> > also, i've been back and forth with erie figuring out how this> whole transition is going to work.  lucas will leave erie with> a new removable cast.  in 1 1/2 to 2 weeks the orthotist there> will mail us the tlso brace.  i have big issues with the fit> even though he assures me that it will fit like the removable> cast. mmmm, maybe . . . so if we have any problems erie's> orthotist will contact rusty miller and coordinate having> lucas seen here so we don't have to go back to erie.  i'm a> little nervous to go back to children's in boston, but we did> always like rusty.  if we have any difficulties, there is> always dr. goldberg at tufts.> > that's the news here,> deshea>  __________________________________________________

[Guest guest]

bert,i'm also butting in, but did bridget have a skin biopsy or urine test to confirm eds?  which type?  (if you don't mind me asking)  i bet you already told me, but i have forgotten!also, are you returning to slc for treatment or have you found a local ortho to take on the bracing regiment?  i complain about our travel, but you guys have us beat!  there is some concern regarding healing with eds, has bridget ever had any problems?  is this syndrome considered counter to any sort of surgical intervention (like veptr) to treat the scoliosis?thanks for your responses!desheaOn Jun 2, 2006, at 9:43 AM, bert lehane wrote: Pam,   Bridget has confirmed Ehler's Danlos and has been back in a brace since Nov after 14 months of casts.  Her curve went from 38 back to 8 in her last cast but her out of cast was still 28 which is an improvement of 10 degrees but much reduced rotation and no rib hump and overall allignment better.   In her brace she is 10 degrees and still after 5 months of bracing 28 out which menas we have maintained.  Initially I was scared to have her out of brace much at all.  Dr D'Astous says brace on 16 to 20 hours a day.  Swimming time doesn't count as out of brace time.  Connective tissue kids need muscle tone so exercise is very important.   She takes her brace off to do PE at school and when they are outside playing at lunchtime as well as when she is exercising and obviously bathing.  The longest we have left it off os probably 4 hrs when we were at a water park.  I can see her spine begin to wander to the left but then the brace is able to push it back again.   We don't let her W sit or lean to the left into her curve.  She sits at the table witha foot stool to help her posture and we encourage her to sit on a chair with both feet on the floor as its easier to keep your back straight in this position.   It took some ecucating at the school but she is sitting so much straighter now.   Good luck with the bracing stage and I hope you have a good physio who knows about connective tissue disorder kids.   Bert and Bridgetpmstphns <cjstephens@...> wrote: Deshea,Sounds like things are going well.  What are Lucas' measurements?  How long will he be in a brace?  Out of curiousity, how many hours a day can Lucas be out of his brace?  I am asking so many questions because Carly may have the same thing next time we return.  They talked about doing a bi-valve cast in April but it did not work out.  So we may leave with a removable cast and return in two weeks for a brace.  As you, I am very nervous but very excited.  Carly has been in a cast for 17 months.  I know Lucas has been in one even longer.  We live in Tennessee where it is extremely HOT and HUMID.  I would love for her to be able to go swimming, etc.  Then we can go back to a cast in the fall.  However, I am terrified her curves will not hold, especially if we are taking the brace off.  I guess you will never know until you try. I think it is great you have already scheduled swim lessons and water therapy.  I know he loves the water.Has Lucas been diagnosed with a connective tissue disorder?  We went last week for testing at Vanderbilt for two types of Ehlers Danlos.  They said it would be three months before the results were in.  Pam, Carly's mom >> okay, i'm frightening myself a little here.  i've set up the> following for lucas for the summer:> > water physical therapy> swim classes> cardiology appt with an echocardiogram aug 21st> > also, i've been back and forth with erie figuring out how this> whole transition is going to work.  lucas will leave erie with> a new removable cast.  in 1 1/2 to 2 weeks the orthotist there> will mail us the tlso brace.  i have big issues with the fit> even though he assures me that it will fit like the removable> cast. mmmm, maybe . . . so if we have any problems erie's> orthotist will contact rusty miller and coordinate having> lucas seen here so we don't have to go back to erie.  i'm a> little nervous to go back to children's in boston, but we did> always like rusty.  if we have any difficulties, there is> always dr. goldberg at tufts.> > that's the news here,> deshea> __________________________________________________

[Guest guest]

Thanks so much Deshea- I appreciate all the information. No, he's not been seen by a geneticist, I'm not even sure he needs to go, it's more of a "hunch" I have, no doctors have even mentioned it, I wasn't sure how to go about that. "Deshea L. " <deshea@...> wrote: jenny, i know this was directed towards pam, but i thought i would respond as well. has evan been seen by a geneticist? i ended up taking lucas to a geneticist without being prompted by his pediatrician or dr. sanders. i just thought it would be a good thing to do in case we were missing something obvious. i know for the other types of eds, they do a skin biopsy, grow out the cells and test for abnormalities in collagen. that

is why it takes 3 mos to get the results back. i do cell culture at work, so i know it takes a bit of time. here's a link: http://www.ednf.org/abouteds/index.php?option=com_content & task=view & id=29 & Itemid=32 it seems like they are still working out the details on how to diagnose some of the types with a lab test. deshea On Jun 2, 2006, at 8:02 AM, wrote: Sorry to butt in here, but I just had a quick question. When they tested your daughter for the connective tissue disorder, what probed you to have that testing done? Was it something you wanted done, or a physician suggetsted? Hope you don't

mind me asking, but I wonder if my son could have the hypermobility type of EDS-maybe not, but seems to me that his joints-especially his knees, shoulders and arms could be affected. Just curious. Thanks. and Evanpmstphns <cjstephens@...> wrote: Deshea,Sounds like things are going well. What are Lucas' measurements? How long will he be in a brace? Out of curiousity, how many hours a day can Lucas be out of his brace? I am asking so many questions because Carly may have the same thing next time we return. They talked about doing a bi-valve cast in April but it did not work out. So we may leave with a removable cast and return in two weeks for a brace. As you, I am

very nervous but very excited. Carly has been in a cast for 17 months. I know Lucas has been in one even longer. We live in Tennessee where it is extremely HOT and HUMID. I would love for her to be able to go swimming, etc. Then we can go back to a cast in the fall. However, I am terrified her curves will not hold, especially if we are taking the brace off. I guess you will never know until you try. I think it is great you have already scheduled swim lessons and water therapy. I know he loves the water.Has Lucas been diagnosed with a connective tissue disorder? We went last week for testing at Vanderbilt for two types of Ehlers Danlos. They said it would be three months before the results were in. Pam, Carly's mom >> okay, i'm frightening myself a little here. i've set up the> following for lucas for the summer:> > water physical therapy> swim classes> cardiology appt with an echocardiogram aug 21st> > also, i've been back and forth with erie figuring out how this> whole transition is going to work. lucas will leave erie with> a new removable cast. in 1 1/2 to 2 weeks the orthotist there> will mail us the tlso brace. i have big issues with the fit> even though he assures me that it will fit like the removable> cast. mmmm, maybe . . . so if we have any problems erie's> orthotist will contact rusty miller and coordinate having> lucas seen here so we don't have to go back to erie. i'm a> little nervous to go back to children's in boston, but we did> always like rusty. if we have any difficulties,

there is> always dr. goldberg at tufts.> > that's the news here,> deshea> __________________________________________________

[Guest guest]

Thanks Deshea, Bridget has n't had a skin biopsy or urine test to confirm. OUr geneticist said the urine test was not always reliable and given that my husband and daughter and son Cormac as well as Bridget display symptoms he didn't seem to think it was necessary to do a skin biopsy with such an overwhelming family history. Bridge has a diagnosis of Ehlers Danlos type 4 . She doesn't have the stretchy skin but my son does to some degree. They have all had echoes for a baseline aorta measurement and need to return in 3 years which I thought was a very positive sign. Bridget has chronic constipation but has never had any healing issues. They all have hypermobile joints and I try to keep them all swimming all year round to maintain muscle in low impact. Coincidentally my older kids 11 and Cormac 10 are great backstoke swimmers so

perhaps hypermobile shoulders can be a plus sometimes. I am worried about Bridget's hypermobile fingers and learning to write as she finds letter formation difficult even though she knows all the letters and the letter sounds. I am going to try to develop her keyboarding skills to reduce her frustration. Veptr has been mentioned as a possibility for Bridget if her curve progresses again as she grows. At the moment we are still coming to SLC though 6 monthly now while she is in a brace. They just take such great care of her there and are so interested in her wheras I have upset the orthos here in travelling for treatment , even though they don't cast in Aus so I have been told they will only see Bridge if I agree to "sever all ties with anywhere else and exclusively do what they tell me without asking questions" I am so much happier being

able to feel part of her treatment options and the orthotics team at Shriners as well as Dr D"Astous are fabulous. We try to take it one trip at a time but I would like to stay with SLC if we can afford to. Good luck woth the brace, the numbers are fabulous. Bert and Bridget"Deshea L. " <deshea@...> wrote: bert, i'm also butting in, but did bridget have a skin biopsy or urine test to confirm eds? which type? (if you don't mind me asking) i bet you already told me, but i have forgotten! also, are you returning to slc for treatment or have you found a local ortho to take on the bracing regiment? i complain about our travel, but you guys have

us beat! there is some concern regarding healing with eds, has bridget ever had any problems? is this syndrome considered counter to any sort of surgical intervention (like veptr) to treat the scoliosis? thanks for your responses! deshea On Jun 2, 2006, at 9:43 AM, bert lehane wrote: Pam, Bridget has confirmed Ehler's Danlos and has been back in a brace since Nov after 14 months of casts. Her curve went from 38 back to 8 in her last cast but her out of cast was still 28 which is an improvement of 10 degrees but much reduced rotation and no rib hump and overall allignment better. In her brace she is 10 degrees and

still after 5 months of bracing 28 out which menas we have maintained. Initially I was scared to have her out of brace much at all. Dr D'Astous says brace on 16 to 20 hours a day. Swimming time doesn't count as out of brace time. Connective tissue kids need muscle tone so exercise is very important. She takes her brace off to do PE at school and when they are outside playing at lunchtime as well as when she is exercising and obviously bathing. The longest we have left it off os probably 4 hrs when we were at a water park. I can see her spine begin to wander to the left but then the brace is able to push it back again. We don't let her W sit or lean to the left into her curve. She sits at the table witha foot stool to help her posture and we encourage her to sit on a chair with both feet on the floor as its easier to keep your back straight in this position. It took some ecucating at the school but she is sitting so much straighter now. Good luck with the bracing stage and I hope you have a good physio who knows about connective tissue disorder kids. Bert and Bridgetpmstphns <cjstephens@...> wrote: Deshea,Sounds like things are going well. What are Lucas' measurements? How long will he be in a brace? Out of curiousity, how many hours a day can Lucas be out of his brace? I am asking so many questions because Carly may have the same thing next time we return. They talked about doing a bi-valve cast in April but it did not work out. So we may leave with a removable cast and return in two weeks

for a brace. As you, I am very nervous but very excited. Carly has been in a cast for 17 months. I know Lucas has been in one even longer. We live in Tennessee where it is extremely HOT and HUMID. I would love for her to be able to go swimming, etc. Then we can go back to a cast in the fall. However, I am terrified her curves will not hold, especially if we are taking the brace off. I guess you will never know until you try. I think it is great you have already scheduled swim lessons and water therapy. I know he loves the water.Has Lucas been diagnosed with a connective tissue disorder? We went last week for testing at Vanderbilt for two types of Ehlers Danlos. They said it would be three months before the results were in. Pam, Carly's mom >> okay, i'm frightening myself a little here. i've set up the> following for lucas for the summer:> > water physical therapy> swim classes> cardiology appt with an echocardiogram aug 21st> > also, i've been back and forth with erie figuring out how this> whole transition is going to work. lucas will leave erie with> a new removable cast. in 1 1/2 to 2 weeks the orthotist there> will mail us the tlso brace. i have big issues with the fit> even though he assures me that it will fit like the removable> cast. mmmm, maybe . . . so if we have any problems erie's> orthotist will contact rusty miller and coordinate having> lucas seen here so we don't have to go back to erie. i'm a> little nervous

to go back to children's in boston, but we did> always like rusty. if we have any difficulties, there is> always dr. goldberg at tufts.> > that's the news here,> deshea> __________________________________________________

[Guest guest]

Bert. You are a great Momma!! Sever all ties!!! Wow. They really are mad. I'm just glad you are able to come to SLC for Bridgette. Tell her hello from the middle of America. Love, Shellie and MO.hane <bert_lehane@...> wrote: Thanks Deshea, Bridget has n't had a skin biopsy or urine test to confirm. OUr geneticist said the urine test was not always reliable and given that my husband and daughter and son Cormac as well as Bridget display symptoms he didn't seem to think it was necessary to do a skin biopsy with such an overwhelming family history. Bridge has a diagnosis of Ehlers Danlos type 4 . She doesn't have the stretchy skin but my son does to some degree.

They have all had echoes for a baseline aorta measurement and need to return in 3 years which I thought was a very positive sign. Bridget has chronic constipation but has never had any healing issues. They all have hypermobile joints and I try to keep them all swimming all year round to maintain muscle in low impact. Coincidentally my older kids 11 and Cormac 10 are great backstoke swimmers so perhaps hypermobile shoulders can be a plus sometimes. I am worried about Bridget's hypermobile fingers and learning to write as she finds letter formation difficult even though she knows all the letters and the letter sounds. I am going to try to develop her keyboarding skills to reduce her frustration. Veptr has been mentioned as a possibility for Bridget if her curve progresses again as she grows. At the moment we are still coming

to SLC though 6 monthly now while she is in a brace. They just take such great care of her there and are so interested in her wheras I have upset the orthos here in travelling for treatment , even though they don't cast in Aus so I have been told they will only see Bridge if I agree to "sever all ties with anywhere else and exclusively do what they tell me without asking questions" I am so much happier being able to feel part of her treatment options and the orthotics team at Shriners as well as Dr D"Astous are fabulous. We try to take it one trip at a time but I would like to stay with SLC if we can afford to. Good luck woth the brace, the numbers are fabulous. Bert and Bridget"Deshea L. " <deshea@...> wrote: bert, i'm also butting in, but did bridget have a skin biopsy or urine test to confirm eds? which type? (if you don't mind me asking) i bet you already told me, but i have forgotten! also, are you returning to slc for treatment or have you found a local ortho to take on the bracing regiment? i complain about our travel, but you guys have us beat! there is some concern regarding healing with eds, has bridget ever had any problems? is this syndrome considered counter to any sort of surgical intervention (like veptr) to treat the scoliosis? thanks for your responses! deshea On Jun 2, 2006, at 9:43 AM, bert lehane wrote: Pam, Bridget has confirmed Ehler's Danlos and has been back in a brace since Nov after 14 months of casts. Her curve went from 38 back to 8 in her last cast but her out of cast was still 28 which is an improvement of 10 degrees but much reduced rotation and no rib hump and overall allignment better. In her brace she is 10 degrees and still after 5 months of bracing 28 out which menas we have maintained. Initially I was scared to have her out of brace much at all. Dr D'Astous says brace on 16 to 20 hours a day. Swimming time doesn't count as out of brace time. Connective tissue kids need muscle tone so exercise is very important. She takes her brace off to do PE at school and when they are outside playing at lunchtime as well as when she is exercising and obviously bathing. The

longest we have left it off os probably 4 hrs when we were at a water park. I can see her spine begin to wander to the left but then the brace is able to push it back again. We don't let her W sit or lean to the left into her curve. She sits at the table witha foot stool to help her posture and we encourage her to sit on a chair with both feet on the floor as its easier to keep your back straight in this position. It took some ecucating at the school but she is sitting so much straighter now. Good luck with the bracing stage and I hope you have a good physio who knows about connective tissue disorder kids. Bert and Bridgetpmstphns <cjstephens@...> wrote: Deshea,Sounds like things are going well. What are Lucas' measurements? How long will he be in a brace? Out of curiousity, how many hours a day can Lucas be out of his brace? I am asking so many questions because Carly may have the same thing next time we return. They talked about doing a bi-valve cast in April but it did not work out. So we may leave with a removable cast and return in two weeks for a brace. As you, I am very nervous but very excited. Carly has been in a cast for 17 months. I know Lucas has been in one even longer. We live in Tennessee where it is extremely HOT and HUMID. I would love for her to be able to go swimming, etc. Then we can go back to a cast in the fall. However, I am terrified her curves will not hold, especially if we are taking the brace off. I guess you will never know until you try.

I think it is great you have already scheduled swim lessons and water therapy. I know he loves the water.Has Lucas been diagnosed with a connective tissue disorder? We went last week for testing at Vanderbilt for two types of Ehlers Danlos. They said it would be three months before the results were in. Pam, Carly's mom >> okay, i'm frightening myself a little here. i've set up the> following for lucas for the summer:> > water physical therapy> swim classes> cardiology appt with an echocardiogram aug 21st> > also, i've been back and forth with erie figuring out how this> whole transition is going to work. lucas will leave erie with> a new removable cast. in 1

1/2 to 2 weeks the orthotist there> will mail us the tlso brace. i have big issues with the fit> even though he assures me that it will fit like the removable> cast. mmmm, maybe . . . so if we have any problems erie's> orthotist will contact rusty miller and coordinate having> lucas seen here so we don't have to go back to erie. i'm a> little nervous to go back to children's in boston, but we did> always like rusty. if we have any difficulties, there is> always dr. goldberg at tufts.> > that's the news here,> deshea> __________________________________________________

[Guest guest]

Thanks Shellie, Thankyou. I did make them mad and also hurt their poor little feelings somehow, but hey they hadn't even seen an infantile case before so I don't know what their issue is. I am just so glad we are welcome in the US. I will tell Bridge hello from Mo and tell Mo that her story and all her battles are what motivated me to keep looking for the best treatment for Bridge so Moriah has been able to help a little girl on the other side of the world and that's fairly special isn't it? Where are you and I can show Bridge on the map? Love BertShellie Grant <shelliegrant@...> wrote: Bert. You are a great Momma!! Sever all ties!!! Wow. They really are mad. I'm just glad you are able to come to SLC for

Bridgette. Tell her hello from the middle of America. Love, Shellie and MO.hane <bert_lehane@...> wrote: Thanks Deshea, Bridget has n't had a skin biopsy or urine test to confirm. OUr geneticist said the urine test was not always reliable and given that my husband and daughter and son Cormac as well as Bridget display symptoms he didn't seem to think it was necessary to do a skin biopsy with such an overwhelming family history. Bridge has a diagnosis of Ehlers Danlos type 4 . She doesn't have the stretchy skin but my son does to some degree. They have all had echoes for a baseline aorta measurement and need to return in 3 years which I thought was a very positive sign. Bridget has chronic constipation but has never had any healing issues. They all have hypermobile joints and I try to keep them all swimming all year round to maintain muscle in low impact. Coincidentally my older kids 11 and Cormac 10 are great backstoke swimmers so perhaps hypermobile shoulders can be a plus sometimes. I am worried about Bridget's hypermobile fingers and learning to write as she finds letter formation difficult even though she knows all the letters and the letter sounds. I am going to try to develop her keyboarding skills to reduce her frustration. Veptr has been mentioned as a possibility for Bridget if her curve progresses again as she grows. At the moment we are still coming to SLC though 6 monthly now while she is in a brace. They just take such great care of her there and are so interested in her wheras I have upset the

orthos here in travelling for treatment , even though they don't cast in Aus so I have been told they will only see Bridge if I agree to "sever all ties with anywhere else and exclusively do what they tell me without asking questions" I am so much happier being able to feel part of her treatment options and the orthotics team at Shriners as well as Dr D"Astous are fabulous. We try to take it one trip at a time but I would like to stay with SLC if we can afford to. Good luck woth the brace, the numbers are fabulous. Bert and Bridget"Deshea L. " <deshea@...> wrote: bert, i'm also butting in, but did bridget have a skin biopsy or urine test to confirm eds? which type? (if you don't

mind me asking) i bet you already told me, but i have forgotten! also, are you returning to slc for treatment or have you found a local ortho to take on the bracing regiment? i complain about our travel, but you guys have us beat! there is some concern regarding healing with eds, has bridget ever had any problems? is this syndrome considered counter to any sort of surgical intervention (like veptr) to treat the scoliosis? thanks for your responses! deshea On Jun 2, 2006, at 9:43 AM, bert lehane wrote: Pam, Bridget has confirmed Ehler's Danlos and has been back in a brace since

Nov after 14 months of casts. Her curve went from 38 back to 8 in her last cast but her out of cast was still 28 which is an improvement of 10 degrees but much reduced rotation and no rib hump and overall allignment better. In her brace she is 10 degrees and still after 5 months of bracing 28 out which menas we have maintained. Initially I was scared to have her out of brace much at all. Dr D'Astous says brace on 16 to 20 hours a day. Swimming time doesn't count as out of brace time. Connective tissue kids need muscle tone so exercise is very important. She takes her brace off to do PE at school and when they are outside playing at lunchtime as well as when she is exercising and obviously bathing. The longest we have left it off os probably 4 hrs when we were at a water park. I can see her spine begin to wander to the left but then the brace is able to push it back

again. We don't let her W sit or lean to the left into her curve. She sits at the table witha foot stool to help her posture and we encourage her to sit on a chair with both feet on the floor as its easier to keep your back straight in this position. It took some ecucating at the school but she is sitting so much straighter now. Good luck with the bracing stage and I hope you have a good physio who knows about connective tissue disorder kids. Bert and Bridgetpmstphns <cjstephens@...> wrote: Deshea,Sounds like things are going well. What are Lucas' measurements? How long will he be in a brace? Out of curiousity, how many hours a

day can Lucas be out of his brace? I am asking so many questions because Carly may have the same thing next time we return. They talked about doing a bi-valve cast in April but it did not work out. So we may leave with a removable cast and return in two weeks for a brace. As you, I am very nervous but very excited. Carly has been in a cast for 17 months. I know Lucas has been in one even longer. We live in Tennessee where it is extremely HOT and HUMID. I would love for her to be able to go swimming, etc. Then we can go back to a cast in the fall. However, I am terrified her curves will not hold, especially if we are taking the brace off. I guess you will never know until you try. I think it is great you have already scheduled swim lessons and water therapy. I know he loves the water.Has Lucas been diagnosed with a connective tissue

disorder? We went last week for testing at Vanderbilt for two types of Ehlers Danlos. They said it would be three months before the results were in. Pam, Carly's mom >> okay, i'm frightening myself a little here. i've set up the> following for lucas for the summer:> > water physical therapy> swim classes> cardiology appt with an echocardiogram aug 21st> > also, i've been back and forth with erie figuring out how this> whole transition is going to work. lucas will leave erie with> a new removable cast. in 1 1/2 to 2 weeks the orthotist there> will mail us the tlso brace. i have big issues with the fit> even though he assures me that it will fit like the

removable> cast. mmmm, maybe . . . so if we have any problems erie's> orthotist will contact rusty miller and coordinate having> lucas seen here so we don't have to go back to erie. i'm a> little nervous to go back to children's in boston, but we did> always like rusty. if we have any difficulties, there is> always dr. goldberg at tufts.> > that's the news here,> deshea> __________________________________________________

[Guest guest]

Hey Bert, We are right in the middle of Kansas. I don't know if it is literally the middle of the U.S. but it feels like it!! :0) We live between Wichita and Salina on Highway 135. I will be sure to show Mo where you are. What city again? She will love to know that all her stuff was used for good all the way around the world. I truly hope sometime we can all meet and hug each other and laugh together and watch our kids play. Love you guys. Shelliebert lehane <bert_lehane@...> wrote: Thanks Shellie, Thankyou. I did make them mad and also hurt their poor little feelings somehow, but hey they hadn't even seen an infantile case before so I don't know what their issue is. I am just so glad we are

welcome in the US. I will tell Bridge hello from Mo and tell Mo that her story and all her battles are what motivated me to keep looking for the best treatment for Bridge so Moriah has been able to help a little girl on the other side of the world and that's fairly special isn't it? Where are you and I can show Bridge on the map? Love BertShellie Grant <shelliegrant@...> wrote: Bert. You are a great Momma!! Sever all ties!!! Wow. They really are mad. I'm just glad you are able to come to SLC for Bridgette. Tell her hello from the middle of America. Love, Shellie and MO.hane <bert_lehane@...> wrote: Thanks Deshea, Bridget has n't had a skin biopsy or urine test to confirm. OUr geneticist said the urine test was not always reliable and given that my husband and daughter and son Cormac as well as Bridget display symptoms he didn't seem to think it was necessary to do a skin biopsy with such an overwhelming family history. Bridge has a diagnosis of Ehlers Danlos type 4 . She doesn't have the stretchy skin but my son does to some degree. They have all had echoes for a baseline aorta measurement and need to return in 3 years which I thought was a very positive sign. Bridget has chronic constipation but has never had any healing issues. They all have hypermobile joints and I try to keep them all swimming all year round to maintain muscle in low impact. Coincidentally my older kids 11 and Cormac

10 are great backstoke swimmers so perhaps hypermobile shoulders can be a plus sometimes. I am worried about Bridget's hypermobile fingers and learning to write as she finds letter formation difficult even though she knows all the letters and the letter sounds. I am going to try to develop her keyboarding skills to reduce her frustration. Veptr has been mentioned as a possibility for Bridget if her curve progresses again as she grows. At the moment we are still coming to SLC though 6 monthly now while she is in a brace. They just take such great care of her there and are so interested in her wheras I have upset the orthos here in travelling for treatment , even though they don't cast in Aus so I have been told they will only see Bridge if I agree to "sever all ties with anywhere else and exclusively do what they tell me without asking questions"

I am so much happier being able to feel part of her treatment options and the orthotics team at Shriners as well as Dr D"Astous are fabulous. We try to take it one trip at a time but I would like to stay with SLC if we can afford to. Good luck woth the brace, the numbers are fabulous. Bert and Bridget"Deshea L. " <deshea@...> wrote: bert, i'm also butting in, but did bridget have a skin biopsy or urine test to confirm eds? which type? (if you don't mind me asking) i bet you already told me, but i have forgotten! also, are you returning to slc for treatment or have you found a local ortho to take on the bracing regiment? i complain

about our travel, but you guys have us beat! there is some concern regarding healing with eds, has bridget ever had any problems? is this syndrome considered counter to any sort of surgical intervention (like veptr) to treat the scoliosis? thanks for your responses! deshea On Jun 2, 2006, at 9:43 AM, bert lehane wrote: Pam, Bridget has confirmed Ehler's Danlos and has been back in a brace since Nov after 14 months of casts. Her curve went from 38 back to 8 in her last cast but her out of cast was still 28 which is an improvement of 10 degrees but much reduced rotation and no rib hump and overall allignment better. In her brace she is 10 degrees and still after 5 months of bracing 28 out which menas we have maintained. Initially I was scared to have her out of brace much at all. Dr D'Astous says brace on 16 to 20 hours a day. Swimming time doesn't count as out of brace time. Connective tissue kids need muscle tone so exercise is very important. She takes her brace off to do PE at school and when they are outside playing at lunchtime as well as when she is exercising and obviously bathing. The longest we have left it off os probably 4 hrs when we were at a water park. I can see her spine begin to wander to the left but then the brace is able to push it back again. We don't let her W sit or lean to the left into her curve. She sits at the table witha foot stool to help her posture and we encourage her to sit on a chair with both feet on the floor as its easier to keep your back

straight in this position. It took some ecucating at the school but she is sitting so much straighter now. Good luck with the bracing stage and I hope you have a good physio who knows about connective tissue disorder kids. Bert and Bridgetpmstphns <cjstephens@...> wrote: Deshea,Sounds like things are going well. What are Lucas' measurements? How long will he be in a brace? Out of curiousity, how many hours a day can Lucas be out of his brace? I am asking so many questions because Carly may have the same thing next time we return. They talked about doing a bi-valve cast in April but it did not work out. So we may leave with a

removable cast and return in two weeks for a brace. As you, I am very nervous but very excited. Carly has been in a cast for 17 months. I know Lucas has been in one even longer. We live in Tennessee where it is extremely HOT and HUMID. I would love for her to be able to go swimming, etc. Then we can go back to a cast in the fall. However, I am terrified her curves will not hold, especially if we are taking the brace off. I guess you will never know until you try. I think it is great you have already scheduled swim lessons and water therapy. I know he loves the water.Has Lucas been diagnosed with a connective tissue disorder? We went last week for testing at Vanderbilt for two types of Ehlers Danlos. They said it would be three months before the results were in. Pam, Carly's mom >> okay, i'm frightening myself a little here. i've set up the> following for lucas for the summer:> > water physical therapy> swim classes> cardiology appt with an echocardiogram aug 21st> > also, i've been back and forth with erie figuring out how this> whole transition is going to work. lucas will leave erie with> a new removable cast. in 1 1/2 to 2 weeks the orthotist there> will mail us the tlso brace. i have big issues with the fit> even though he assures me that it will fit like the removable> cast. mmmm, maybe . . . so if we have any problems erie's> orthotist will contact rusty miller and coordinate having> lucas seen here so we don't have to go back to erie. i'm a> little nervous

to go back to children's in boston, but we did> always like rusty. if we have any difficulties, there is> always dr. goldberg at tufts.> > that's the news here,> deshea> __________________________________________________

[Guest guest]

Hi Shellie, We live in Brisbane which is on the east coast of Australia about half way up th continent. We have lots of beaches and hot weather, though it's winter now and is cold for us but not for you. By September we will be swimming outside again and it won't get cool again until May. I am sure the kids will meet some day, maybe on Oprah, Who knows? Hey and eliana come from Kansas. Are they near you at all? Love Bert and BridgeShellie Grant <shelliegrant@...> wrote: Hey Bert, We are right in the middle of Kansas. I don't know if it is literally the middle of the U.S. but it feels like it!! :0) We live between Wichita and Salina on Highway 135. I will be sure to show Mo where you are. What city again? She will love to know that all her stuff was used for good all the way around the world. I truly hope sometime we can all meet and hug each other and laugh together and watch our kids play. Love you guys. Shelliebert lehane <bert_lehane@...> wrote: Thanks Shellie, Thankyou. I did make them mad and also hurt their poor little feelings somehow, but hey they hadn't even seen an infantile case before so I don't know what their issue

is. I am just so glad we are welcome in the US. I will tell Bridge hello from Mo and tell Mo that her story and all her battles are what motivated me to keep looking for the best treatment for Bridge so Moriah has been able to help a little girl on the other side of the world and that's fairly special isn't it? Where are you and I can show Bridge on the map? Love BertShellie Grant <shelliegrant@...> wrote: Bert. You are a great Momma!! Sever all ties!!! Wow. They really are mad. I'm just glad you are able to come to SLC for Bridgette. Tell her hello from the middle of America. Love, Shellie and MO.hane <bert_lehane@...> wrote: Thanks Deshea, Bridget has n't had a skin biopsy or urine test to confirm. OUr geneticist said the urine test was not always reliable and given that my husband and daughter and son Cormac as well as Bridget display symptoms he didn't seem to think it was necessary to do a skin biopsy with such an overwhelming family history. Bridge has a diagnosis of Ehlers Danlos type 4 . She doesn't have the stretchy skin but my son does to some degree. They have all had echoes for a baseline aorta measurement and need to return in 3 years which I thought was a very positive sign. Bridget has chronic constipation but has never had any healing issues. They all have hypermobile joints and I try to keep them all swimming all year round to maintain muscle in low impact. Coincidentally my older kids 11 and Cormac 10 are great backstoke swimmers so

perhaps hypermobile shoulders can be a plus sometimes. I am worried about Bridget's hypermobile fingers and learning to write as she finds letter formation difficult even though she knows all the letters and the letter sounds. I am going to try to develop her keyboarding skills to reduce her frustration. Veptr has been mentioned as a possibility for Bridget if her curve progresses again as she grows. At the moment we are still coming to SLC though 6 monthly now while she is in a brace. They just take such great care of her there and are so interested in her wheras I have upset the orthos here in travelling for treatment , even though they don't cast in Aus so I have been told they will only see Bridge if I agree to "sever all ties with anywhere else and exclusively do what they tell me without asking questions" I am so much happier being

able to feel part of her treatment options and the orthotics team at Shriners as well as Dr D"Astous are fabulous. We try to take it one trip at a time but I would like to stay with SLC if we can afford to. Good luck woth the brace, the numbers are fabulous. Bert and Bridget"Deshea L. " <deshea@...> wrote: bert, i'm also butting in, but did bridget have a skin biopsy or urine test to confirm eds? which type? (if you don't mind me asking) i bet you already told me, but i have forgotten! also, are you returning to slc for treatment or have you found a local ortho to take on the bracing regiment? i complain about our travel, but you guys have us beat! there is some concern regarding healing with eds, has bridget ever had any problems? is this syndrome considered counter to any sort of surgical intervention (like veptr) to treat the scoliosis? thanks for your responses! deshea On Jun 2, 2006, at 9:43 AM, bert lehane wrote: Pam, Bridget has confirmed Ehler's Danlos and has been back in a brace since Nov after 14 months of casts. Her curve went from 38 back to 8 in her last cast but her out of cast was still 28 which is an improvement of 10 degrees but much reduced rotation and no rib hump and overall allignment better. In her brace she is 10 degrees and still after 5 months of bracing 28

out which menas we have maintained. Initially I was scared to have her out of brace much at all. Dr D'Astous says brace on 16 to 20 hours a day. Swimming time doesn't count as out of brace time. Connective tissue kids need muscle tone so exercise is very important. She takes her brace off to do PE at school and when they are outside playing at lunchtime as well as when she is exercising and obviously bathing. The longest we have left it off os probably 4 hrs when we were at a water park. I can see her spine begin to wander to the left but then the brace is able to push it back again. We don't let her W sit or lean to the left into her curve. She sits at the table witha foot stool to help her posture and we encourage her to sit on a chair with both feet on the floor as its easier to keep your back straight in this position. It took some

ecucating at the school but she is sitting so much straighter now. Good luck with the bracing stage and I hope you have a good physio who knows about connective tissue disorder kids. Bert and Bridgetpmstphns <cjstephens@...> wrote: Deshea,Sounds like things are going well. What are Lucas' measurements? How long will he be in a brace? Out of curiousity, how many hours a day can Lucas be out of his brace? I am asking so many questions because Carly may have the same thing next time we return. They talked about doing a bi-valve cast in April but it did not work out. So we may leave with a removable cast and return in two weeks for a brace. As you, I am very nervous but very

excited. Carly has been in a cast for 17 months. I know Lucas has been in one even longer. We live in Tennessee where it is extremely HOT and HUMID. I would love for her to be able to go swimming, etc. Then we can go back to a cast in the fall. However, I am terrified her curves will not hold, especially if we are taking the brace off. I guess you will never know until you try. I think it is great you have already scheduled swim lessons and water therapy. I know he loves the water.Has Lucas been diagnosed with a connective tissue disorder? We went last week for testing at Vanderbilt for two types of Ehlers Danlos. They said it would be three months before the results were in. Pam, Carly's mom >> okay, i'm frightening myself a little here. i've set up the> following for lucas for the summer:> > water physical therapy> swim classes> cardiology appt with an echocardiogram aug 21st> > also, i've been back and forth with erie figuring out how this> whole transition is going to work. lucas will leave erie with> a new removable cast. in 1 1/2 to 2 weeks the orthotist there> will mail us the tlso brace. i have big issues with the fit> even though he assures me that it will fit like the removable> cast. mmmm, maybe . . . so if we have any problems erie's> orthotist will contact rusty miller and coordinate having> lucas seen here so we don't have to go back to erie. i'm a> little nervous to go back to children's in boston, but we did> always like rusty. if we have any difficulties, there is> always

dr. goldberg at tufts.> > that's the news here,> deshea> __________________________________________________