Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 Hi Donna Welcome to the group. My name is and I have a 3 year old daughter, Kirsten who is the first and only person in our family to have BPES. We live in Harrogate, UK, but travel down to London every 3 months to see the experts looking after her eyes. As far as delayed milestones are concerned, I didn't experience that with Kirsten. She did tilt her head back alot though and would either bang her head or fall over objects. But her motor milestones were age appropriate. What is delayed with her is her speech. I have been reassured that this delay is not linked to BPES. At 15 months the range of 'normal' development is very wide. As long as he is making progress don't panic. My suggestion is to arrange for an assessment with a child development centre for when he is about 24 months. This can be done via your GP or health care worker. There may be a 4 - 6 month waiting list so look into it soon if you are interested. I did this for Kirsten and it was through this assessment we ultimately got speech therapy and learnt (and are still using) Makaton sign language. She goes to a main stream nursery school and is doing really well. If it is 's restricted vision that is affecting his walking then I would think it would be an indication to have his lids lifted asap. P > > Hi, > > My name is Donna and I have a 15 month old boy, who has BPES. > is a beautiful, happy baby who we love very much and he seems to > have a knack for making everyone who meets him fall in love with him. > He has a 4 year old sister and they adore each other. > > He is the first in the family with BPES, so until he was born we had > never heard of it. It is nice to read messages and hopefully learn > from everyones experiences. > > has only recently started crawling and standing and we have been > told by the drs. that this is normal for someone with BPES as mobility > can be late to develop - did anyone else experience this? Although > now he is coming on leaps and bounds. > > It has taken time for me to pluck up the courage to join the group but > I guess that I need to know more about the surgery he will face when > he is older. > > We live in the UK and would be interested to hear from others in the UK > so we can share information on doctors etc. > > Best Wishes to you all > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 Hi Many thanks for your message. As time is going on I am realising that ' development is well within the normal ranges. My health visitor has been fantastic and arranged for him to have hearing tests and see a doctor for development checks. They did discover a minor problem with his kidney (unrelated to BPES) so he sees the specialist every 6 months to monitor this and she is keeping an eye on his development to reassure me. He also has sight checks every 3 months and see a consultant every 6 months for his BPES. So we are getting very good care. I hope I am not prying but do you travel from Harrogate to London to see a specialist of your preference? The reason I ask is is currently under the care of Wolverhampton Eye Infirmary (we live in the Midlands) and it is due to close soon - the facilities are supposed to be transferring to the local hospital. W-ton Eye Infirmary is reputed to be one of the best eye hospitals within the U.K. and we want to ensure that continues to receive the best possible care. I would be interested in hearing your comments Best Regards Donna > > > > Hi, > > > > My name is Donna and I have a 15 month old boy, who has > BPES. > > is a beautiful, happy baby who we love very much and he > seems to > > have a knack for making everyone who meets him fall in love with > him. > > He has a 4 year old sister and they adore each other. > > > > He is the first in the family with BPES, so until he was born we > had > > never heard of it. It is nice to read messages and hopefully > learn > > from everyones experiences. > > > > has only recently started crawling and standing and we have > been > > told by the drs. that this is normal for someone with BPES as > mobility > > can be late to develop - did anyone else experience this? > Although > > now he is coming on leaps and bounds. > > > > It has taken time for me to pluck up the courage to join the group > but > > I guess that I need to know more about the surgery he will face > when > > he is older. > > > > We live in the UK and would be interested to hear from others in > the UK > > so we can share information on doctors etc. > > > > Best Wishes to you all > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 Hi Donna From your previous messages it is clear that you are getting loads of appropriate care and advice from the medical profession and that is fantastic. A mothers gut instinct is very strong and usually right, so I have no doubt that will be fine. The reason I travel from Harrogate to London every 3 months is that we used to live in London and have always been under the care of Mr Collin. I certainly didn't want to lose the priveledge of Kirsten being his patient and so I do the trips. Kirsten had her lid lift at Moorfields eye hospital this January and will have her further surgeries there next year. We co-ordinate our day in London so that Kirsten sees the orthoptist first and then Mr Collin afterwards in the afternoon. Both parties are accomodating to my circumstances. It is a long drive (4 hours)but is the cheapest way of travelling. It is a good way of seeing my brother-in-law as we stay with him when we go down. He is particularly fond of Kirsten and spoils her rotten. Must dash for the nursery school run. Take care > > > > > > Hi, > > > > > > My name is Donna and I have a 15 month old boy, who has > > BPES. > > > is a beautiful, happy baby who we love very much and he > > seems to > > > have a knack for making everyone who meets him fall in love with > > him. > > > He has a 4 year old sister and they adore each other. > > > > > > He is the first in the family with BPES, so until he was born we > > had > > > never heard of it. It is nice to read messages and hopefully > > learn > > > from everyones experiences. > > > > > > has only recently started crawling and standing and we > have > > been > > > told by the drs. that this is normal for someone with BPES as > > mobility > > > can be late to develop - did anyone else experience this? > > Although > > > now he is coming on leaps and bounds. > > > > > > It has taken time for me to pluck up the courage to join the > group > > but > > > I guess that I need to know more about the surgery he will face > > when > > > he is older. > > > > > > We live in the UK and would be interested to hear from others in > > the UK > > > so we can share information on doctors etc. > > > > > > Best Wishes to you all > > > > > > Quote Link to comment Share on other sites More sharing options...
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