Guest guest Posted March 10, 2001 Report Share Posted March 10, 2001 janene, Hi. I dont know the levels, for normal thyroid, but they suggested that amanda (my daughter 10 1/2 with DS), get tested every year at her reguar annual. My husband has thyroid problems and he takes medication. I dont want to scare you, but my daughter has diabetes also and maybe thats something you should look into also. before amanda got diabetes, though, we were looking into a nutritionist because of the weight gain she was experiencing. As it turned out, she developed diabetes and needed the nutritionist for other reasons. She has grown about an inch and a half (I dont know what that is in centimeters!) and she has lost a few pounds. Again i cant do the conversion! As for the baby teeth, i cant offer anything. 's grown up teeth are pretty crooked and there is not alot of room in her mouth and the dentist is talking braces now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2001 Report Share Posted March 11, 2001 Welcome! Quick, write down what you did so you can keep coming back to us! We haven't had the baby-teeth-that-stayed-forever issue with our son who has DS, but the new front teeth came in on top of the baby ones for our NDA 12-yr-old daughter. The baby teeth eventually came out, and the new ones receded somewhat, but she is now in braces. Bev mom to Danny (9, DS); 3 daughters; 3 cats; Opie, the Suaree stray dog; and wife to Hec ---------- From: JJ.LAUGHTON@... Subject: hi from new zealand Date: Saturday, March 10, 2001 6:50 PM its great to be able to write with all of you. hope i have finally cracked the computer and will remember how i got here!!! We are a family of 5, 2 boys 13 and 10 and a girl called jade ds who is 6. life is pretty hectic for us, jade keeps reasonable health with mostly chest infections etc. she goes to school with her brother with teacher aide help and loves it. we finally have built her up to a full day some of it unaided. i have 2 things id like some help on. first does anyone know of the thyroid acceptable levels for ds i remember reading somewhere that the levels are a little different for ds and jade has stacked the weight on lately, and her diet is still the same as before. also she has 2 teeth that came through about 6 months ago that are far back in her mouth with her baby teeth still there and not loose. took her to a specialist dentist who said just leave the baby ones as it is too traumatic etc and not a problem but i feel they may stay there in the wrong place. any help would be appreciated. hope you are all having a good day look forward to keeping in touch regards janene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Hi everyone well I am sooooo excited to find this group It has been about 6 years since I bothered to do a search on blepharophimosis as the last time I did there was hardly any info. What a great thing to find this group. My name is a, am almost 40 and originally from Melbourne, Australia but currently in New Zealand. My family have a strong history with blepharophimosis. Dad has it, I do, my sister and one of my brothers. Both my children have it and one of my sisters children does too. At our family gatherings the " big eyes " are out numbered LOL. My siblings and I have all had a few operations as has my dad. My son who is almost 9 has decided not to have any operations at this stage and we are so proud of him for having the self esteem to be happy with who he is and how he is different to others. My daughter is 3 yrs and probably we will also let her decided what she wants to do. After reading some posts and looking at the photos, it seems that things are done differently in some places. In Aussie, our specialist recommended we wait till the kids are at least over 3 or 4 years before doing any surgery so their faces have a chance to develop more and so they can get a better idea of how much movement the lids have. The kids do have their sight checked regularly and touch wood, no problems. Anyway that is the short version. I look forward to chatting with you all. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Hi a:) My name is Leanne, and my husband and I have a beautiful 3 1/2 year old son Ethan, born with Bleph, we live in CHRISTCHURCH! Where are you in NZ ??? We also have a 7 1/2 year old son without Bleph. Ethan is the VERY first in either side of the family to have this condition, so a HUGE surprise.... But a very gorgeous one, there are lots of pics of him and us under Ethan (wearing pumpkin suit) at this site, check them out:) We would love to see some photos of you and your family too:) Here is my e-mail so perhaps you could e-mail me some, and likewise, I for you if you would like, I have thousands:) tltne@... We also were told to wait until Ethan is about 4 years old for any surgeries, so as yet, he has had none.....He visits's the opthalmologist once a year to have his eyes evaluated, and so far they are fine:) He has never had the chin up position to see, he just looks straight ahead, really he will just use his eyebrows and forehead to open his eyes wider....He is a happy, healthy, average 3 year old! Very bright, he has the most gorgeous smile that lights up a room! He has a very loving affectionate nature too:) Anyways, can't wait to hear more about your family, and like I said, would love to see photos.....talk soon, and welcome to the group, feel free to e-mail me any time:) Leanne, , Tyler and Ethan Christchurch, NZ -- blepharophimosis Hi from New Zealand Hi everyonewell I am sooooo excited to find this group It has been about 6 years since I bothered to do a search on blepharophimosis as the last time I did there was hardly any info. What a great thing to find this group.My name is a, am almost 40 and originally from Melbourne, Australia but currently in New Zealand. My family have a strong history with blepharophimosis. Dad has it, I do, my sister and one of my brothers.Both my children have it and one of my sisters children does too.At our family gatherings the "big eyes" are out numbered LOL.My siblings and I have all had a few operations as has my dad. My son who is almost 9 has decided not to have any operations at this stage and we are so proud of him for having the self esteem to be happy with who he is and how he is different to others.My daughter is 3 yrs and probably we will also let her decided what she wants to do.After reading some posts and looking at the photos, it seems that things are done differently in some places. In Aussie, our specialist recommended we wait till the kids are at least over 3 or 4 years before doing any surgery so their faces have a chance to develop more and so they can get a better idea of how much movement the lids have.The kids do have their sight checked regularly and touch wood, no problems.Anyway that is the short version. I look forward to chatting with you all.a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Hi Leanne we live in Christchurch too We moved here from Melb almost 3 yrs ago as my husband has family here. I can't believe I have found someone else in the group here, you have made my day. Will email you pics shortly. Looking forward to chatting more. What a coincedence, my daughter Saskia is 3 1/2 as well. Cheers a > > My name is Leanne, and my husband and I have a beautiful 3 1/2 year > old son Ethan, born with Bleph, we live in CHRISTCHURCH! Where are you in NZ > ??? > > We also have a 7 1/2 year old son without Bleph. Ethan is the VERY first in > either side of the family to have this condition, so a HUGE surprise.... > Hi everyone > > well I am sooooo excited to find this group It has been about 6 > years since I bothered to do a search on blepharophimosis as the last > time I did there was hardly any info. What a great thing to find this > group. > > My name is a, am almost 40 and originally from Melbourne, > Australia but currently in New Zealand. My family have a strong > history with blepharophimosis. Dad has it, I do, my sister and one of Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Oh my goodness! I have never met anyone in CHCH yet, we got to meet Maree and (pic at site with Ethan) about 2 years ago, they are from Waihi-Tauranga, and they were here visiting there parents, they are a mother and daughter with Bleph.... Where in Christchurch are you??? We live in Rolleston.....My e-mail is: tltne@... Leanne:) -- blepharophimosis Re: Hi from New Zealand Hi Leannewe live in Christchurch too We moved here from Melb almost 3 yrs ago as my husband has family here. I can't believe I have found someone else in the group here, you have made my day.Will email you pics shortly. Looking forward to chatting more.What a coincedence, my daughter Saskia is 3 1/2 as well.Cheersa> > My name is Leanne, and my husband and I have a beautiful 3 1/2 year> old son Ethan, born with Bleph, we live in CHRISTCHURCH! Where are you in NZ> ??? > > We also have a 7 1/2 year old son without Bleph. Ethan is the VERY first in> either side of the family to have this condition, so a HUGE surprise....> Hi everyone> > well I am sooooo excited to find this group It has been about 6 > years since I bothered to do a search on blepharophimosis as the last > time I did there was hardly any info. What a great thing to find this > group.> > My name is a, am almost 40 and originally from Melbourne, > Australia but currently in New Zealand. My family have a strong > history with blepharophimosis. Dad has it, I do, my sister and one of Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Hi again, Who is your opthalmologist then? It isn't Dr Weatherhead is it??? Thats the only Dr we were referred to as he is the only one who specialises in Bleph here in CHCH, well so we have been told anyway Leanne -- blepharophimosis Re: Hi from New Zealand Hi Leannewe live in Christchurch too We moved here from Melb almost 3 yrs ago as my husband has family here. I can't believe I have found someone else in the group here, you have made my day.Will email you pics shortly. Looking forward to chatting more.What a coincedence, my daughter Saskia is 3 1/2 as well.Cheersa> > My name is Leanne, and my husband and I have a beautiful 3 1/2 year> old son Ethan, born with Bleph, we live in CHRISTCHURCH! Where are you in NZ> ??? > > We also have a 7 1/2 year old son without Bleph. Ethan is the VERY first in> either side of the family to have this condition, so a HUGE surprise....> Hi everyone> > well I am sooooo excited to find this group It has been about 6 > years since I bothered to do a search on blepharophimosis as the last > time I did there was hardly any info. What a great thing to find this > group.> > My name is a, am almost 40 and originally from Melbourne, > Australia but currently in New Zealand. My family have a strong > history with blepharophimosis. Dad has it, I do, my sister and one of Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Hi Leanne we dont have a specialist here for bleph. The kids go to Dr Erlich in Melbourne. I cant remember the surgeons name but will dig through our paperwork at another time. To see Dr Weatherhead, do we need a referal? I am fine with Saskia but my son I think needs to have a check up. Over th eyears he has become quite lazy with opening his eyes and they arent opening much. I am trying to get him to do opening type exercises but would like some advise. The last time they had their vision tested was in Mleb at the Royal eye and ear hospital. At the time we also participated in an Aussie/US study into the condition. Last I heard they had isolated the gene for it. Has there been any talk here about the study and results? I have tried to email you but not sure if it is getting through. Do you think I can put my email addy up here so you can contact me? I check out your pics, gorgeous boys you have there Oh and we are in Woolston. Cheers a > Who is your opthalmologist then? It isn't Dr Weatherhead is it??? Thats the > only Dr we were referred to as he is the only one who specialises in Bleph > here in CHCH, well so we have been told anyway > > Leanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 Yes, please do give me another address....I just sent through about 10 pics or so, did they all come through? Dr Weatherhead has his own private office in Papanui, the Radiology next to Macdonalds on Papanui Road, where we were referred to him when Ethan was a baby, a visit with him at his own practise was $120.00 for a 15 minute appt!!! So our family Dr put us on the public waiting list, and now we see *him* free at the eye outpatients (public hospital) for nothing! he is the only one who specialises in Bleph....So you could try calling them and telling them you and your children have Blepharophimosis, and you have been told that Dr weatherhead is the specialist to see....they should tell you what you need to do from there.... The phone number is: 364 1470...(eye outpatients) As far as studies etc....we have never been involoved in any, but there are a few Dr's up North that are doing studies, I have info if you are interested..... Thats funny how you are renovating old homes and selling them and you have done 2 so far, we build new homes and we have also sold 2, what a coincidence:) I grew up in NZ, moved to Hawaii when I was 18, met my husband and we have been together now for 15 years, married 10:)...he decided he'd move to NZ! So we have been back here for 5 years now. We lived in Hawaii 9 years prior to that, our first son was born there, and he was 2 years old when we came to NZ to live:) Leanne -- blepharophimosis Re: Hi from New Zealand Hi Leannewe dont have a specialist here for bleph. The kids go to Dr Erlich in Melbourne. I cant remember the surgeons name but will dig through our paperwork at another time. To see Dr Weatherhead, do we need a referal? I am fine with Saskia but my son I think needs to have a check up. Over th eyears he has become quite lazy with opening his eyes and they arent opening much. I am trying to get him to do opening type exercises but would like some advise.The last time they had their vision tested was in Mleb at the Royal eye and ear hospital. At the time we also participated in an Aussie/US study into the condition. Last I heard they had isolated the gene for it. Has there been any talk here about the study and results?I have tried to email you but not sure if it is getting through. Do you think I can put my email addy up here so you can contact me?I check out your pics, gorgeous boys you have there :)Oh and we are in Woolston. Cheersa> Who is your opthalmologist then? It isn't Dr Weatherhead is it??? Thats the> only Dr we were referred to as he is the only one who specialises in Bleph> here in CHCH, well so we have been told anyway > > Leanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 Hi Leanne yep got all the pics. I have sent more to you. Will follow up with the Dr in the next few weeks, it isnt urgent. I will speak to my sister in Melb over the weekend and get some more info on the study we were in. AFAIK it involved many families worldwide and about a yr ago I am sure she told me they had isolated the gene for bleph. Would be interested in any info you have on studies done here. My dad is from Wellington and I know there are others there with it. It goes back a couple of generations before him that we know of. I think it was a great aunt of his who had it, so about 5 generations removed from my kids. Cheers a --- In blepharophimosis , " costellos " <tltne@...> wrote: > > Yes, please do give me another address....I just sent through about 10 pics > or so, did they all come through? > > Dr Weatherhead has his own private office in Papanui, the Radiology next to > Macdonalds on Papanui Road, where we were referred to him when Ethan was a > baby, a visit with him at his own practise was $120.00 for a 15 minute > appt!!! So our family Dr put us on the public waiting list, and now we see > *him* free at the eye outpatients (public hospital) for nothing! he is the > only one who specialises in Bleph....So you could try calling them and > telling them you and your children have Blepharophimosis, and you have been > told that Dr weatherhead is the specialist to see....they should tell you > what you need to do from there.... The phone number is: 364 1470...(eye > outpatients) > > As far as studies etc....we have never been involoved in any, but there are > a few Dr's up North that are doing studies, I have info if you are > interested..... > > Thats funny how you are renovating old homes and selling them and you have > done 2 so far, we build new homes and we have also sold 2, what a > coincidence:) I grew up in NZ, moved to Hawaii when I was 18, met my husband > and we have been together now for 15 years, married 10:)...he decided he'd > move to NZ! So we have been back here for 5 years now. We lived in Hawaii 9 > years prior to that, our first son was born there, and he was 2 years old > when we came to NZ to live:) > > Leanne > > > > -- blepharophimosis Re: Hi from New Zealand > > Hi Leanne > > we dont have a specialist here for bleph. The kids go to Dr Erlich > in Melbourne. I cant remember the surgeons name but will dig through > our paperwork at another time. > To see Dr Weatherhead, do we need a referal? I am fine with Saskia > but my son I think needs to have a check up. Over th eyears > he has become quite lazy with opening his eyes and they arent > opening much. I am trying to get him to do opening type exercises > but would like some advise. > > The last time they had their vision tested was in Mleb at the Royal > eye and ear hospital. At the time we also participated in an > Aussie/US study into the condition. Last I heard they had isolated > the gene for it. Has there been any talk here about the study and > results? > > I have tried to email you but not sure if it is getting through. Do > you think I can put my email addy up here so you can contact me? > > I check out your pics, gorgeous boys you have there > > Oh and we are in Woolston. > > Cheers > a > > > Who is your opthalmologist then? It isn't Dr Weatherhead is it??? > Thats the > > only Dr we were referred to as he is the only one who specialises > in Bleph > > here in CHCH, well so we have been told anyway > > > > Leanne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 Hi Leanne, this is Karla Mesman and I was looking under your pictures of your son Ethan in the pumpkin suit and he is so adorable, but the amazing thing is he looks so much like my son who is now 5 years old. I cannot get enough of my little boy, he is also very sociable and lovable and he never lets his eye thing bring him down!! He actually doesn't even think anything is wrong with his eyes, when people ask him or even kids, he just looks at them like they are weird!! (quite humorous) We really have not had to speak of this issue with him at all, I really think most of what is said goes over his little head!! Marcus J. had one surgery done when he was 1 and that was the widening of the eyes and now they are talking about another one coming up soon that will be the slings and then widening the eyes a second time all at the same time!! Our doctor also told us to wait for the slings until he grows fully in the face and now we're here. Your family picture that you have of all of you, Ethan looks just like my little boy, in a similiar picture of our family, I do not have that one posted on the web, but I will have to look for it and email it to you.....You'll be surprised!! The great thing is to hear how wonderful your son is and that is so much like my Marcus. I have never seen another child with this or even similiar to Marcus, but it is so nice to know that we are not alone in this disorder!! Well it has been great talking to you and I see that you are from New Zealand WOW that is pretty far from USA - Michigan!! Hope to talk soon. Thanks Karla Mesman Hudsonville MIcostellos <tltne@...> wrote: Hi a:) My name is Leanne, and my husband and I have a beautiful 3 1/2 year old son Ethan, born with Bleph, we live in CHRISTCHURCH! Where are you in NZ ??? We also have a 7 1/2 year old son without Bleph. Ethan is the VERY first in either side of the family to have this condition, so a HUGE surprise.... But a very gorgeous one, there are lots of pics of him and us under Ethan (wearing pumpkin suit) at this site, check them out:) We would love to see some photos of you and your family too:) Here is my e-mail so perhaps you could e-mail me some, and likewise, I for you if you would like, I have thousands:) tltne@....nz We also were told to wait until Ethan is about 4 years old for any surgeries, so as yet, he has had none.....He visits's the opthalmologist once a year to have his eyes evaluated, and so far they are fine:) He has never had the chin up position to see, he just looks straight ahead, really he will just use his eyebrows and forehead to open his eyes wider....He is a happy, healthy, average 3 year old! Very bright, he has the most gorgeous smile that lights up a room! He has a very loving affectionate nature too:) Anyways, can't wait to hear more about your family, and like I said, would love to see photos.....talk soon, and welcome to the group, feel free to e-mail me any time:) Leanne, , Tyler and Ethan Christchurch, NZ -- blepharophimosis Hi from New Zealand Hi everyonewell I am sooooo excited to find this group It has been about 6 years since I bothered to do a search on blepharophimosis as the last time I did there was hardly any info. What a great thing to find this group.My name is a, am almost 40 and originally from Melbourne, Australia but currently in New Zealand. My family have a strong history with blepharophimosis. Dad has it, I do, my sister and one of my brothers.Both my children have it and one of my sisters children does too.At our family gatherings the "big eyes" are out numbered LOL.My siblings and I have all had a few operations as has my dad. My son who is almost 9 has decided not to have any operations at this stage and we are so proud of him for having the self esteem to be happy with who he is and how he is different to others.My daughter is 3 yrs and probably we will also let her decided what she wants to do.After reading some posts and looking at the photos, it seems that things are done differently in some places. In Aussie, our specialist recommended we wait till the kids are at least over 3 or 4 years before doing any surgery so their faces have a chance to develop more and so they can get a better idea of how much movement the lids have.The kids do have their sight checked regularly and touch wood, no problems.Anyway that is the short version. I look forward to chatting with you all.a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 Hi Karla, OH my goodness....your right!!!!! They look like twins, even down to the blonde hair....shaped face:) amazing ha! I honestly took a double take of that 3rd pic of him, with his right cheek showing!!! That one especially is identical to our Ethan....I showed my husband your family pic and he looked closely and said *why is my son sitting on some other guys lap* !!! What is your e-mail address and I can send you pix of him directly:) And you to me....talk again soon PS: We didn't used to be that far from you! I moved to Hawaii 15 years ago (my mums husband was in the us navy and we were stationed there) I met my husband a few months later, been together since:) we lived there for 9 years before coming back to NZ to live, our first son was born in Hawaii and was 2 when we came back here.... My husband was born in Illonois, but considers Hawaii his home as he had lived there since he was about 10 years old.... Leanne and family NZ - blepharophimosis Hi from New Zealand Hi everyonewell I am sooooo excited to find this group It has been about 6 years since I bothered to do a search on blepharophimosis as the last time I did there was hardly any info. What a great thing to find this group.My name is a, am almost 40 and originally from Melbourne, Australia but currently in New Zealand. My family have a strong history with blepharophimosis. Dad has it, I do, my sister and one of my brothers.Both my children have it and one of my sisters children does too.At our family gatherings the "big eyes" are out numbered LOL.My siblings and I have all had a few operations as has my dad. My son who is almost 9 has decided not to have any operations at this stage and we are so proud of him for having the self esteem to be happy with who he is and how he is different to others.My daughter is 3 yrs and probably we will also let her decided what she wants to do.After reading some posts and looking at the photos, it seems that things are done differently in some places. In Aussie, our specialist recommended we wait till the kids are at least over 3 or 4 years before doing any surgery so their faces have a chance to develop more and so they can get a better idea of how much movement the lids have.The kids do have their sight checked regularly and touch wood, no problems.Anyway that is the short version. I look forward to chatting with you all.a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 Hi again Karla, My e-mail address is: tltne@... Please e-mail me there....pics would be great too:) Give me your e-mail too.... Leanne NZ -- blepharophimosis Hi from New Zealand Hi everyonewell I am sooooo excited to find this group It has been about 6 years since I bothered to do a search on blepharophimosis as the last time I did there was hardly any info. What a great thing to find this group.My name is a, am almost 40 and originally from Melbourne, Australia but currently in New Zealand. My family have a strong history with blepharophimosis. Dad has it, I do, my sister and one of my brothers.Both my children have it and one of my sisters children does too.At our family gatherings the "big eyes" are out numbered LOL.My siblings and I have all had a few operations as has my dad. My son who is almost 9 has decided not to have any operations at this stage and we are so proud of him for having the self esteem to be happy with who he is and how he is different to others.My daughter is 3 yrs and probably we will also let her decided what she wants to do.After reading some posts and looking at the photos, it seems that things are done differently in some places. In Aussie, our specialist recommended we wait till the kids are at least over 3 or 4 years before doing any surgery so their faces have a chance to develop more and so they can get a better idea of how much movement the lids have.The kids do have their sight checked regularly and touch wood, no problems.Anyway that is the short version. I look forward to chatting with you all.a Quote Link to comment Share on other sites More sharing options...
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