Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 Thank you for your kind message and welcome, I am Beth age 34 (with BPES) mom of Lily, also with BPES, age 14 months. I don't know about connection with speech delay, but I hope you can find support you need. > > Hi all > > My name is Parsons. I have a 3 year old daughter, Kirsten who > has BPES. She is the first person in our family to be affected.We > live in Harrogate in the UK and she sees Mr Collin in London for her > eye checks. She has had one surgery so far at the age of 2 to lift > her lids as her vision was being affected. Her right eye was > becoming weaker than her left. Since her surgery 10 months ago her > eye sight is now equal in each eye, but she still has assessments > every 3 months. Her next surgery for the medial canthi is scheduled > for next spring. > > Kirsten is a very sociable and charming little girl who loves > nursery school. She has an older brother, who dotes on her. > My concern with her is that her speech is very delayed. All her > other milestones are age appropriate and she otherwise behaves like > a typical 3 year old. She has picked up Makaton sign language > quickly and it has been particularly useful. > > Have any other parents got a similar problem? I have always wondered > if the speech delay is in any way linked to BPES. > > I have found this group site to be a fabulous relief and a source of > support that I have been looking for since Kirsten was born. I have > been sitting for a number of hours looking through photos and > messages and can relate to all in some way. > > Regards > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 Welcome I to felt a relief when I began looking at the web sight. Our son is also the 1st in our family with BPES. He is 2 1/2 years. We live in the US. With regard to the speech trouble we have not experienced that personally. Good Luck. Bethparsonsfamily108 <parsonsfamily108@...> wrote: Hi allMy name is Parsons. I have a 3 year old daughter, Kirsten who has BPES. She is the first person in our family to be affected.We live in Harrogate in the UK and she sees Mr Collin in London for her eye checks. She has had one surgery so far at the age of 2 to lift her lids as her vision was being affected. Her right eye was becoming weaker than her left. Since her surgery 10 months ago her eye sight is now equal in each eye, but she still has assessments every 3 months. Her next surgery for the medial canthi is scheduled for next spring.Kirsten is a very sociable and charming little girl who loves nursery school. She has an older brother, who dotes on her. My concern with her is that her speech is very delayed. All her other milestones are age appropriate and she otherwise behaves like a typical 3 year old. She has picked up Makaton sign language quickly and it has been particularly useful.Have any other parents got a similar problem? I have always wondered if the speech delay is in any way linked to BPES. I have found this group site to be a fabulous relief and a source of support that I have been looking for since Kirsten was born. I have been sitting for a number of hours looking through photos and messages and can relate to all in some way. Regards Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 HI Sara, Welocome ! I have 3 children with bleh. Ages 14,11 and 4 months. MY2 boys have no other styptoms or delayed milestone at all...and the baby seems to be progressing nicely. We thought in the beginning she may have a daley or two...but she is speeding up and is ahead of some of her milestones now. Good luck with Kirsten, hope her speach catches up soon. I wanted to go to sign language classes her on Long Island, NY can't find one . I am going to look into books and videos at the library. parsonsfamily108 <parsonsfamily108@...> wrote: Hi allMy name is Parsons. I have a 3 year old daughter, Kirsten who has BPES. She is the first person in our family to be affected.We live in Harrogate in the UK and she sees Mr Collin in London for her eye checks. She has had one surgery so far at the age of 2 to lift her lids as her vision was being affected. Her right eye was becoming weaker than her left. Since her surgery 10 months ago her eye sight is now equal in each eye, but she still has assessments every 3 months. Her next surgery for the medial canthi is scheduled for next spring.Kirsten is a very sociable and charming little girl who loves nursery school. She has an older brother, who dotes on her. My concern with her is that her speech is very delayed. All her other milestones are age appropriate and she otherwise behaves like a typical 3 year old. She has picked up Makaton sign language quickly and it has been particularly useful.Have any other parents got a similar problem? I have always wondered if the speech delay is in any way linked to BPES. I have found this group site to be a fabulous relief and a source of support that I have been looking for since Kirsten was born. I have been sitting for a number of hours looking through photos and messages and can relate to all in some way. Regards<a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a> Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 Hi and Kirsten My name is and I have a 2 year old duaghter with BPES,we live in Dover Kent (photos listed under ) and she is the first in our family like you.Our situation is the same as yours as has had one op and is waiting for others as she gets older,but we go to our consultant in Maidstone every 3mths. will be 2 tomorrow and she is delayed on her speech,the consultant says it isnt linked as I have been concerned and queried it before,but I am visited by a preschool co-ordinater for the vision impaired and she thinks it could be.At this point in time its being monitored,I have a Son of 10yrs and he had special needs with a 3yr speech delay so it could just be me over reacting (as you do). Welcome to the site and I hope we can talk again as our girls are close in age and we live close. Are you going to the coffee morning in London on the 18th December,would be great to meet up. Speak soon and parsonsfamily108 <parsonsfamily108@...> wrote: Hi allMy name is Parsons. I have a 3 year old daughter, Kirsten who has BPES. She is the first person in our family to be affected.We live in Harrogate in the UK and she sees Mr Collin in London for her eye checks. She has had one surgery so far at the age of 2 to lift her lids as her vision was being affected. Her right eye was becoming weaker than her left. Since her surgery 10 months ago her eye sight is now equal in each eye, but she still has assessments every 3 months. Her next surgery for the medial canthi is scheduled for next spring.Kirsten is a very sociable and charming little girl who loves nursery school. She has an older brother, who dotes on her. My concern with her is that her speech is very delayed. All her other milestones are age appropriate and she otherwise behaves like a typical 3 year old. She has picked up Makaton sign language quickly and it has been particularly useful.Have any other parents got a similar problem? I have always wondered if the speech delay is in any way linked to BPES. I have found this group site to be a fabulous relief and a source of support that I have been looking for since Kirsten was born. I have been sitting for a number of hours looking through photos and messages and can relate to all in some way. Regards How much free photo storage do you get? Store your holiday snaps for FREE with Photos. Get Photos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2005 Report Share Posted October 20, 2005 Hi and Kirsten, Welcome to the group. My name is Jeroen and I have BPES. I have two children, Jens 4 years old who also has BPES and Tiebe 2 years old who is not affected. Jens did not undergo surgery yet. It was postponed till he reached the age of 4 because his vision wasn't impaired and he did not tilt his neck. We are seeing a (second) surgeon tomorrow. We live in Belgium and we just joined this group. Sorry, but I don't know of a relation between BPES and delayed speech. Greetings Jeroen. > > Hi all > > My name is Parsons. I have a 3 year old daughter, Kirsten who > has BPES. She is the first person in our family to be affected.We > live in Harrogate in the UK and she sees Mr Collin in London for her > eye checks. She has had one surgery so far at the age of 2 to lift > her lids as her vision was being affected. Her right eye was > becoming weaker than her left. Since her surgery 10 months ago her > eye sight is now equal in each eye, but she still has assessments > every 3 months. Her next surgery for the medial canthi is scheduled > for next spring. > > Kirsten is a very sociable and charming little girl who loves > nursery school. She has an older brother, who dotes on her. > My concern with her is that her speech is very delayed. All her > other milestones are age appropriate and she otherwise behaves like > a typical 3 year old. She has picked up Makaton sign language > quickly and it has been particularly useful. > > Have any other parents got a similar problem? I have always wondered > if the speech delay is in any way linked to BPES. > > I have found this group site to be a fabulous relief and a source of > support that I have been looking for since Kirsten was born. I have > been sitting for a number of hours looking through photos and > messages and can relate to all in some way. > > Regards > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 Hi Welcome to the group. I read your post last night and wrote an email to a mother of a little girl. This mother sounds like she is in a similar situation as yourself. That person is not a member of this group, so she will not have seen your post. I hope that she will get in touch with you soon. Meanwhile, it is very good to hear that Kirsten is able to benefit from Mr Collin's care. You had not mentioned seeing a genetics counsellor ... I am saying this because when I was last at " Great Ormond Street " (yes, they see adults too! I am 44 years old) I asked the genetics doctor to explain to me what the role of a geneticist is, for somebody who has BPES. This applies to the UK health system - I am not as familiar with systems in other countries. The genetics doctor replied that they are able to provide a definite diagnosis and to act as a sort of " super GP " (my words, not theirs). In other words they are able to put you in touch with other specialists who have experience in that area, and they act as a sort of central coordinator for health issues related to the syndrome. Also, they are better able to go through the symptoms and discuss them with you. Some symptoms may not be related to the syndrome. All of this will help you to get the best healthcare that is available in your area. One of the BPES experts in the world works in the Birmingham area. You might like to consider one of these options: 1. Write to her, ask her to suggest a person for you to see near your home. 2. Ask your health authority to arrange for you to have an appointment with her. Dr Oley works here: http://www.bwhct.nhs.uk/ (Birmingham). I hope that this helps. Take care Shireen London, England Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 Hi Tracey Thanks for your reply. I think your consultant is right that the speech delay is not directly linked to BPES, but when my child had one condition it seemed logical to put associations together. Her consultants have also been reassuring me that the 2 are not related. In fact we are going to be investigating whether Kirsten has a submucous cleft palate. It doesn't rain, it pours! I looked at the photos of and Kirsten looked exactly the same at birth! I have finally put a few photos of Kirsten under Kirsten Parsons. I will add one of her more recent photos soon. I would love to come to the coffee morning on the 18th Dec and look forward to meeting you there. Regards > Hi all > > My name is Parsons. I have a 3 year old daughter, Kirsten who > has BPES. She is the first person in our family to be affected.We > live in Harrogate in the UK and she sees Mr Collin in London for her > eye checks. She has had one surgery so far at the age of 2 to lift > her lids as her vision was being affected. Her right eye was > becoming weaker than her left. Since her surgery 10 months ago her > eye sight is now equal in each eye, but she still has assessments > every 3 months. Her next surgery for the medial canthi is scheduled > for next spring. > > Kirsten is a very sociable and charming little girl who loves > nursery school. She has an older brother, who dotes on her. > My concern with her is that her speech is very delayed. All her > other milestones are age appropriate and she otherwise behaves like > a typical 3 year old. She has picked up Makaton sign language > quickly and it has been particularly useful. > > Have any other parents got a similar problem? I have always wondered > if the speech delay is in any way linked to BPES. > > I have found this group site to be a fabulous relief and a source of > support that I have been looking for since Kirsten was born. I have > been sitting for a number of hours looking through photos and > messages and can relate to all in some way. > > Regards > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 hi Sharon, thanks for the welcome. The response I have had has been amazing and I feel I have just joined a little family of friends all over the world. Kirsten's speech is coming on, just slowly. The sign language definitely prevented any frustration for her or us. The age difference between your eldest and youngest being a 10 year gap is a good sign for other BPES ladies wanting to fall pregnant. I have always assumed that Kirsten may have fertility problems in the future although for now I haven't even considered finding out which type of BPES she has. Regards Parsons Hi all > > My name is Parsons. I have a 3 year old daughter, Kirsten who > has BPES. She is the first person in our family to be affected.We > live in Harrogate in the UK and she sees Mr Collin in London for her > eye checks. She has had one surgery so far at the age of 2 to lift > her lids as her vision was being affected. Her right eye was > becoming weaker than her left. Since her surgery 10 months ago her > eye sight is now equal in each eye, but she still has assessments > every 3 months. Her next surgery for the medial canthi is scheduled > for next spring. > > Kirsten is a very sociable and charming little girl who loves > nursery school. She has an older brother, who dotes on her. > My concern with her is that her speech is very delayed. All her > other milestones are age appropriate and she otherwise behaves like > a typical 3 year old. She has picked up Makaton sign language > quickly and it has been particularly useful. > > Have any other parents got a similar problem? I have always wondered > if the speech delay is in any way linked to BPES. > > I have found this group site to be a fabulous relief and a source of > support that I have been looking for since Kirsten was born. I have > been sitting for a number of hours looking through photos and > messages and can relate to all in some way. > > Regards > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 Hi.....BLeph doesn"t run in my family ..it is on my husbands side. I think i am going to loko into getting tested atsome point. Sharon parsonsfamily108 <parsonsfamily108@...> wrote: hi Sharon, thanks for the welcome. The response I have had has been amazing and I feel I have just joined a little family of friends all over the world. Kirsten's speech is coming on, just slowly. The sign language definitely prevented any frustration for her or us. The age difference between your eldest and youngest being a 10 year gap is a good sign for other BPES ladies wanting to fall pregnant. I have always assumed that Kirsten may have fertility problems in the future although for now I haven't even considered finding out which type of BPES she has. Regards ParsonsHi all> > My name is Parsons. I have a 3 year old daughter, Kirsten who > has BPES. She is the first person in our family to be affected.We > live in Harrogate in the UK and she sees Mr Collin in London for her > eye checks. She has had one surgery so far at the age of 2 to lift > her lids as her vision was being affected. Her right eye was > becoming weaker than her left. Since her surgery 10 months ago her > eye sight is now equal in each eye, but she still has assessments > every 3 months. Her next surgery for the medial canthi is scheduled > for next spring.> > Kirsten is a very sociable and charming little girl who loves > nursery school. She has an older brother, who dotes on her. > My concern with her is that her speech is very delayed. All her > other milestones are age appropriate and she otherwise behaves like > a typical 3 year old. She has picked up Makaton sign language > quickly and it has been particularly useful.> > Have any other parents got a similar problem? I have always wondered > if the speech delay is in any way linked to BPES. > > I have found this group site to be a fabulous relief and a source of > support that I have been looking for since Kirsten was born. I have > been sitting for a number of hours looking through photos and > messages and can relate to all in some way. > > Regards> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2005 Report Share Posted October 22, 2005 Welcome and Kirsten, this is Clare and Emy from Hertfordshire, UK. This is a fab site - i must agree. we have not experienced any speach delay with Emy (she is 10 now), and we both have BPES, both of us operated on by Mr Collin at Moorfields (mine over 20 years ago). However my son who doesnt have BPES spoke only 3 or 4 words until he was nearly 4, we had all tests done, and everyone was quite concerned (except me),. Then one day he just spoke, he is still a child of few words (unless he is trying to explain something then he will speak until you understand every little detail) and he is 7yrs of age now. Does anyone else have BPES in your family? Regards clare and Emy - Herts UKparsonsfamily108 <parsonsfamily108@...> wrote: Hi allMy name is Parsons. I have a 3 year old daughter, Kirsten who has BPES. She is the first person in our family to be affected.We live in Harrogate in the UK and she sees Mr Collin in London for her eye checks. She has had one surgery so far at the age of 2 to lift her lids as her vision was being affected. Her right eye was becoming weaker than her left. Since her surgery 10 months ago her eye sight is now equal in each eye, but she still has assessments every 3 months. Her next surgery for the medial canthi is scheduled for next spring.Kirsten is a very sociable and charming little girl who loves nursery school. She has an older brother, who dotes on her. My concern with her is that her speech is very delayed. All her other milestones are age appropriate and she otherwise behaves like a typical 3 year old. She has picked up Makaton sign language quickly and it has been particularly useful.Have any other parents got a similar problem? I have always wondered if the speech delay is in any way linked to BPES. I have found this group site to be a fabulous relief and a source of support that I have been looking for since Kirsten was born. I have been sitting for a number of hours looking through photos and messages and can relate to all in some way. Regards FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 Welcome, ! Our middle child, Micah, has BPES. We live in Colorado in the U.S. and adopted him from S. Korea at the age of three. He does not have any speech delays. But I teach sign language classes for hearing infants and toddlers and was excited to see you are signing with Kirsten! Welcome to our group. April Eisele, Colorado, USA Wife to Jon Mommy to Mira, Micah & Misha --- parsonsfamily108 <parsonsfamily108@...> wrote: > Hi all > > My name is Parsons. I have a 3 year old > daughter, Kirsten who > has BPES. She is the first person in our family to > be affected.We > live in Harrogate in the UK and she sees Mr Collin > in London for her > eye checks. She has had one surgery so far at the > age of 2 to lift > her lids as her vision was being affected. Her right > eye was > becoming weaker than her left. Since her surgery 10 > months ago her > eye sight is now equal in each eye, but she still > has assessments > every 3 months. Her next surgery for the medial > canthi is scheduled > for next spring. > > Kirsten is a very sociable and charming little girl > who loves > nursery school. She has an older brother, > who dotes on her. > My concern with her is that her speech is very > delayed. All her > other milestones are age appropriate and she > otherwise behaves like > a typical 3 year old. She has picked up Makaton sign > language > quickly and it has been particularly useful. > > Have any other parents got a similar problem? I have > always wondered > if the speech delay is in any way linked to BPES. > > I have found this group site to be a fabulous relief > and a source of > support that I have been looking for since Kirsten > was born. I have > been sitting for a number of hours looking through > photos and > messages and can relate to all in some way. > > Regards > > > > > __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2005 Report Share Posted October 25, 2005 Hi and Kirsten Welcome to the group! This has been my lifesaver I must say. My name is Lucy and my husband Garry and I have an 8 month old daughter called Holly. She is the first in the family to have BPES. We live in Hampshire, UK and will be going to the get-together in London in December so it would be great to see you there. We are due to see Mr Collin in January for a 2nd opinon because we had no confidence when we visited our local hospital in Portsmouth who did not seem to know anything about the condition!!! We have photos of Holly on the website which you can have a look at. Kirsten looks so cute, all those curls!! Take care Lucy xxparsonsfamily108 <parsonsfamily108@...> wrote: hi Sharon, thanks for the welcome. The response I have had has been amazing and I feel I have just joined a little family of friends all over the world. Kirsten's speech is coming on, just slowly. The sign language definitely prevented any frustration for her or us. The age difference between your eldest and youngest being a 10 year gap is a good sign for other BPES ladies wanting to fall pregnant. I have always assumed that Kirsten may have fertility problems in the future although for now I haven't even considered finding out which type of BPES she has. Regards ParsonsHi all> > My name is Parsons. I have a 3 year old daughter, Kirsten who > has BPES. She is the first person in our family to be affected.We > live in Harrogate in the UK and she sees Mr Collin in London for her > eye checks. She has had one surgery so far at the age of 2 to lift > her lids as her vision was being affected. Her right eye was > becoming weaker than her left. Since her surgery 10 months ago her > eye sight is now equal in each eye, but she still has assessments > every 3 months. Her next surgery for the medial canthi is scheduled > for next spring.> > Kirsten is a very sociable and charming little girl who loves > nursery school. She has an older brother, who dotes on her. > My concern with her is that her speech is very delayed. All her > other milestones are age appropriate and she otherwise behaves like > a typical 3 year old. She has picked up Makaton sign language > quickly and it has been particularly useful.> > Have any other parents got a similar problem? I have always wondered > if the speech delay is in any way linked to BPES. > > I have found this group site to be a fabulous relief and a source of > support that I have been looking for since Kirsten was born. I have > been sitting for a number of hours looking through photos and > messages and can relate to all in some way. > > Regards> > > > > > > Quote Link to comment Share on other sites More sharing options...
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