Re: Delay in development and maybe mental dalay?

[Guest guest]

Our daughter, Sofia, is 12 months old and has BPES and

Pierre Robin Sequence. She also has not started

crawling and not even close to it. She was delayed in

rolling as well but sat on her own early. She seems

pretty content to play in a small area and hasn't

showed interest in exploring beyond a couple of feet.

She is very nearsighted so we think that has a lot to

do with it. She is also an extremely happy baby.

Just loves life and loves to play. We aren't sure if

she is physcially delayed because of all of her

hospital time due to her PRS (and associated

breathing/feeding issues) or if it's mental as well.

Unfortunately, early age tests can show this, only

time will tell.

Sorry no good answers for you but wanted you to know

you're not alone.

Tony

--- sylvester2603 <sbjoglise.jensen@...> wrote:

> Hi,

> my son, Sylvester is 11 month and has BPES. we still

> havent got him

> diagnozed, these things take a long time. but we

> know he has it. at

> this moment we are waiting for a scan of his head

> (march 12.). all the

> doctors say, that it is because, his head is big,

> but we are not sure.

> he is developing slowly, he cant crawl yet, in fact

> he is not even

> close to crawling. sometimes we are wondering if he

> also is mental

> delayed, or if he is just developing slowly in every

> way.

> all this is not normal for BPES, it is just another

> thing he have, or

> what? what are your experiences? we would be very

> glad, if somebody

> told us that this is very normal for a child with

> BPES!

> He is a very happy boy and bring us lot of love and

> laughter.

> And sorry if I dont write a lot in this group, but I

> belive that I have

> more questions than answers.

>

> Thanks again.

>

> Lise and Sylvester.

>

>

>

[Guest guest]

Hello Lise amd Sylvester Its Clare from Hertfordshire UK. It was lovely to read your message, I have no firm answers for you, but am happy to share our experience with BPES. I have it and so does my daughter (11yrs), my husband and 2 sons dont have it. Me and my daughter have not had any experience of developmental delays and my daughter did things a lot earlier than my son (who doesnt have BPES). Also my development was apparently as it should have been and nobody was ever concerned about mine or my daughters awareness. (Except when the doctors told my mother I was blind when I was born, she soon put them right). I do not know what the scientific response is but this is our experiences. I have been a member of this site for a few years, and have heard a few mails similar to yours, so I am hopeful you will get some of the information you are looking

for. I think sometimes it is good to know we are not alone, and share our stuff with others that do understand on some if not all levels. All the very best to the both of you. Clare sylvester2603 <sbjoglise.jensen@...> wrote: Hi, my son, Sylvester is 11 month and has BPES. we still havent got him diagnozed, these things take a long time. but we know he has it. at this moment we

are waiting for a scan of his head (march 12.). all the doctors say, that it is because, his head is big, but we are not sure. he is developing slowly, he cant crawl yet, in fact he is not even close to crawling. sometimes we are wondering if he also is mental delayed, or if he is just developing slowly in every way. all this is not normal for BPES, it is just another thing he have, or what? what are your experiences? we would be very glad, if somebody told us that this is very normal for a child with BPES! He is a very happy boy and bring us lot of love and laughter. And sorry if I dont write a lot in this group, but I belive that I have more questions than answers.Thanks again.Lise and Sylvester.

Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit.

[Guest guest]

Hi Lise My daughter is going to be two on the 17th Feb. She has BPES which we were told about when she was 5 months. We also found that she was slow with her development. She was 10 months when she sat, 16 months when she crawled and is now cruising the furniture, nearly ready to take her first steps. Grace is also slow with her language skills - she has about 25 words which the family can understand. They are becoming clearly and more people are able to understand her. Regarding her physical development she has slightly weak muscle tone which has led to some of the delay. She has phyiso and they have said that she is following the correct development curve but alot slower that most children. Her fine motor skills, handling small objects etc are in line with the normal. We recently had the results of some blood tests. She has a small bit of chromosomal material missing in chromosome 3. We have been told that this would result in

BPES, a funny shaped head and development delay This fits Grace exactly. They are very pleased with the stage she is at at the moment and hope that she will continue to improve at this rate. Ohdo syndrome was mentioned to us last year but has now been ruled out due to her progress and lack of other problems. If there is anything else I can help you with please let me know Nicola Horsley Englandsylvester2603 <sbjoglise.jensen@...> wrote: Hi, my son, Sylvester is 11 month and has BPES. we

still havent got him diagnozed, these things take a long time. but we know he has it. at this moment we are waiting for a scan of his head (march 12.). all the doctors say, that it is because, his head is big, but we are not sure. he is developing slowly, he cant crawl yet, in fact he is not even close to crawling. sometimes we are wondering if he also is mental delayed, or if he is just developing slowly in every way. all this is not normal for BPES, it is just another thing he have, or what? what are your experiences? we would be very glad, if somebody told us that this is very normal for a child with BPES! He is a very happy boy and bring us lot of love and laughter. And sorry if I dont write a lot in this group, but I belive that I have more questions than answers. Thanks again. Lise and Sylvester.

All New – Tired of unwanted email come-ons? Let our SpamGuard protect you.

[Guest guest]

Hello!

I have posted a message before re: our son . He is now 2 1/2 years old. He was diagnosed with BPES when he was about 1 year old. He has been through the full battery of tests.... MRI, CT scans, Thyroid test, echocardiogram, all kinds of genetic tests etc. He is "developmentally delayed" according to our pediatrician. He walked at 18 months. He was about 5 months behind on things such as sitting up, rolling over, crawling etc. He had physical therapy for about 6 months until he was walking. He has been getting speech therapy for about a year now. He is still a little unbalanced--can't jump with 2 feet, a little unsteady running etc. so we have resumed physical therapy now.

His speech is really improving---not quite up to his peers yet. He can say some phrases of 4 words. Some things are difficult to understand. He stuffs his mouth with food and this concerns the speech therapist because she thinks he needs to improve the strength of some muscles in his face/mouth.

All of that said he is an extremely happy little boy. He loves trying to keep up with his big 4 yr old sister (who does not have BPES or any delays). I have kind of given up on finding the official diagnosis because no one really knows.....I try to take it day by day and not look too far into the future.

maureen

north carolina usa

blepharophimosis Delay in development and maybe mental dalay?

Hi, my son, Sylvester is 11 month and has BPES. we still havent got him diagnozed, these things take a long time. but we know he has it. at this moment we are waiting for a scan of his head (march 12.). all the doctors say, that it is because, his head is big, but we are not sure. he is developing slowly, he cant crawl yet, in fact he is not even close to crawling. sometimes we are wondering if he also is mental delayed, or if he is just developing slowly in every way. all this is not normal for BPES, it is just another thing he have, or what? what are your experiences? we would be very glad, if somebody told us that this is very normal for a child with BPES! He is a very happy boy and bring us lot of love and laughter. And sorry if I dont write a lot in this group, but I belive that I have more questions than answers.Thanks again.Lise and Sylvester.

[Guest guest]

Hi Maureen and Lise, and everyone

My daughter,Kirsten, is 4 1/2 years old now and besides BPES she

also has a delay in her gross motor skills of about 6 months, she is

slightly hypotonic and has speech problems. She was born with a hole

in her heart which closed on its own. So I can relate to you both

with batteries of tests, concerns and unanswered questions.

I am writing to give you both some encouragement because Kirsten is

at a mainstream school attending class with everyone else her age.

She is learning to read and write at the same rate as her friends

and does the same swimming, dancing and PE activities as best she

can. My main concern hasn't been her eyes at all, in fact I would be

grateful if BPES was her only problem. Her main stumbling block is

her speech. She has had surgery to her palate which has made a

significant difference in improving her clarity of speech and it has

been well worth it. She has speech therapy once a week which is

finally having an impact and when she was younger we used sign

language, which she will use on the odd occasion now.

Almost all the treatment Kirsten has received so far has not been

without a significant effort from me pushing the health care

professionals to do something. I am sure you know what I mean!

Kids will develop at their own pace, but this doesn't mean that they

won't develop at all or stop developing. Kirsten couldn't jump when

her friends could, but now she does it easily. She couldn't stand on

one leg a few months ago, and now her balance is improving. Delay is

just that, it doesn't mean 'will never be able to'.

Good luck with your kids. At the risk of sounding smug, I get a lot

of joy out of celebrating the progress Kirsten is making that other

parents may take for granted from their own 'typical' kids. ( I have

one of those too and he is a delight.)

Regards

Parsons

Harrogate, UK

--- In blepharophimosis , " jay pulliam " <jcp@...>

wrote:

>

> Hello!

>

> I have posted a message before re: our son . He is now 2

1/2 years old. He was diagnosed with BPES when he was about 1 year

old. He has been through the full battery of tests.... MRI, CT

scans, Thyroid test, echocardiogram, all kinds of genetic tests

etc. He is " developmentally delayed " according to our

pediatrician. He walked at 18 months. He was about 5 months behind

on things such as sitting up, rolling over, crawling etc. He had

physical therapy for about 6 months until he was walking. He has

been getting speech therapy for about a year now. He is still a

little unbalanced--can't jump with 2 feet, a little unsteady running

etc. so we have resumed physical therapy now.

>

> His speech is really improving---not quite up to his peers yet.

He can say some phrases of 4 words. Some things are difficult to

understand. He stuffs his mouth with food and this concerns the

speech therapist because she thinks he needs to improve the strength

of some muscles in his face/mouth.

>

> All of that said he is an extremely happy little boy. He loves

trying to keep up with his big 4 yr old sister (who does not have

BPES or any delays). I have kind of given up on finding the

official diagnosis because no one really knows.....I try to take it

day by day and not look too far into the future.

>

> maureen

> north carolina usa

> blepharophimosis Delay in development and maybe

mental dalay?

>

>

> Hi,

> my son, Sylvester is 11 month and has BPES. we still havent got

him

> diagnozed, these things take a long time. but we know he has it.

at

> this moment we are waiting for a scan of his head (march 12.).

all the

> doctors say, that it is because, his head is big, but we are not

sure.

> he is developing slowly, he cant crawl yet, in fact he is not

even

> close to crawling. sometimes we are wondering if he also is

mental

> delayed, or if he is just developing slowly in every way.

> all this is not normal for BPES, it is just another thing he

have, or

> what? what are your experiences? we would be very glad, if

somebody

> told us that this is very normal for a child with BPES!

> He is a very happy boy and bring us lot of love and laughter.

> And sorry if I dont write a lot in this group, but I belive that

I have

> more questions than answers.

>

> Thanks again.

>

> Lise and Sylvester.

>

[Guest guest]

Just wanted to let you all know that I am a 30 year old woman with

BPES. I walked at the proper age but had a whole lot of problems

with balance and cordination for many, many years. I eventually

caught up and am able to lead a pretty normal life. My uncle who

has BPES too is what some members of my family call " slow " . I have

read in a few places on the internet that some people with BPES can

be suffer from mental delays and mental retardation. I am not sure

if that is what applies to my uncle or not. My dad also has BPES

and is very smart but not book smart. He only went to 6th grade and

quit 'cause he was made fun of so bad because of his eyes. I don't

know how far my uncle went in school.

I don't know if this helps or not.

--- In blepharophimosis , " jay pulliam " <jcp@...>

wrote:

>

> Hello!

>

> I have posted a message before re: our son . He is now 2

1/2 years old. He was diagnosed with BPES when he was about 1 year

old. He has been through the full battery of tests.... MRI, CT

scans, Thyroid test, echocardiogram, all kinds of genetic tests

etc. He is " developmentally delayed " according to our

pediatrician. He walked at 18 months. He was about 5 months behind

on things such as sitting up, rolling over, crawling etc. He had

physical therapy for about 6 months until he was walking. He has

been getting speech therapy for about a year now. He is still a

little unbalanced--can't jump with 2 feet, a little unsteady running

etc. so we have resumed physical therapy now.

>

> His speech is really improving---not quite up to his peers yet.

He can say some phrases of 4 words. Some things are difficult to

understand. He stuffs his mouth with food and this concerns the

speech therapist because she thinks he needs to improve the strength

of some muscles in his face/mouth.

>

> All of that said he is an extremely happy little boy. He loves

trying to keep up with his big 4 yr old sister (who does not have

BPES or any delays). I have kind of given up on finding the

official diagnosis because no one really knows.....I try to take it

day by day and not look too far into the future.

>

> maureen

> north carolina usa

> blepharophimosis Delay in development and maybe

mental dalay?

>

>

> Hi,

> my son, Sylvester is 11 month and has BPES. we still havent got

him

> diagnozed, these things take a long time. but we know he has it.

at

> this moment we are waiting for a scan of his head (march 12.).

all the

> doctors say, that it is because, his head is big, but we are not

sure.

> he is developing slowly, he cant crawl yet, in fact he is not

even

> close to crawling. sometimes we are wondering if he also is

mental

> delayed, or if he is just developing slowly in every way.

> all this is not normal for BPES, it is just another thing he

have, or

> what? what are your experiences? we would be very glad, if

somebody

> told us that this is very normal for a child with BPES!

> He is a very happy boy and bring us lot of love and laughter.

> And sorry if I dont write a lot in this group, but I belive that

I have

> more questions than answers.

>

> Thanks again.

>

> Lise and Sylvester.

>

[Guest guest]

Thank you for sharing your story. It's nice to hear of a child who is older than , has many similar characteristics and is doing well. I appreciate your thoughts and encouragement.

Maureen

blepharophimosis Delay in development and maybe mental dalay?> > > Hi, > my son, Sylvester is 11 month and has BPES. we still havent got him > diagnozed, these things take a long time. but we know he has it. at > this moment we are waiting for a scan of his head (march 12.). all the > doctors say, that it is because, his head is big, but we are not sure. > he is developing slowly, he cant crawl yet, in fact he is not even > close to crawling. sometimes we are wondering if he also is mental > delayed, or if he is just developing slowly in every way. > all this is not normal for BPES, it is just another thing he have, or > what? what are your experiences? we would be very glad, if somebody > told us that this is very normal for a child with BPES! > He is a very happy boy and bring us lot of love and laughter. > And sorry if I dont write a lot in this group, but I belive that I have > more questions than answers.> > Thanks again.> > Lise and Sylvester.>