Question about Blep


#1

My daughter is now 3 and was diagnosied when she was two weeks old with Blep, she has to have her heart checked once a year to see if she has developed any problems from Blep, Does anyone eles also have other medical problems due to Blep.


#2

Hey,

I just wanted to tell you that bleph really has no connection with developmental delays. Usually if there is a mental delay its because the child has an existing condition and they also by chance have bleph. But bleph itself has no connection with developmental delays…Bleph has nothing to do with mental development.

I went twenty years without one single doctor or optometrist telling me anything about my eyes.

Trust me, your daughter doesn’t have a severe case, and i know this sounds weird, but hers looks very normal to me. There are many people in my family who have it because its a genetic thing. None of us have any visual impairment (other than when we were children we tilted our heads up to see, because of how short we were…pretty common)

None of us have any woman problems either, we have been very lucky. Basically, we have very mild cases. The only thing that makes us different is the shape of our eyes.

I know this message seems kind of strange but honestly be careful with doctors, you should see a specialist. Because for the main part general doctors have no clue about bleph. Seriously. And even then they dont understand the social/emotional side compared to the medical side. I really think that there is a huge misunderstanding surrounding bleph in general.

Basically my optometrist now tells me all the time i could have surgery if i wanted but that there is no need, even though my eyes look different on the outside i have the same range of vision as everyone else, is what he says.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=10955481&ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

These links talk about ohdo blepharophimosis and mental retardation in conjunction with having bleph, but having bleph does not necessarily mean you will have a developmental delay.


#3

What im meaning to say is BMR is different that blepharophimosis… :slight_smile:


#4

No my son has never had to have his heart checked I have never even been told anything about other problems. He has small eyes and has had to have the sling surgery when he was 2 months as he could not open his eyes at all. They have said eventually he will have to have the slings replaced as they will wear out, but other than that he is very healthy.


#5

Hi, My daughter Ruth has Bleph. She is 4. I have heard that some children with BPES have heart conditions but Ruth does not. She has her eyes checked every six months also. She had the sling surgery done on her eyes when she was 8 months old as her pupils were being blocked. As for learning disabilities I have heard that children with BPES are highly inteligent. It is one of the positive side effects I have read about.


#6

Yeah, to richard six pack, ive actually heard that people with bleph have the tendency to be intelligent as well!


#7

lissah, That was not meant in a negative way. It was
meant that I have read that children with bpes are
above average in intelligence!

— lissah


#8

I have also learned the recently and Grace has always tested out far ahead in all her devloment testing.


#9

are kids w/ bleph really smarter? i often have thought my son is brilliant and a quick learner. where did you guys hear this?


#10

I doubt there is much evidence to suggest anything either way. More
recent articles (e.g. the de Baere article frequently linked to in these
fora) err on the side of political correctness by saying there’s no BPES
effect on intelligence.

But some of the older articles are less circumspect, such as:

British Journal of Plastic Surgery (1986), 39, pp244-248: ‘Ptosis with
blepharophimosis and epicanthus inversus’ (Elliot & Wallace): “…the
children are of good intelligence…”

In a book called ‘The Head and Neck’, in a chapter called ‘The Eyelids
and their Adnexa’, it says (in the section about blepharophimosis): “The
patient may appear mentally retarded, although in many cases his
intellectual development may be higher than the average.” (Author, etc,
I don’t got)

In Transactions of the American Academy of Ophthalmology and Otology,
1972, in an article called ‘Surgical correction of the blepharophimosis
syndromes’, page 687, Alston Callahan wrote: “…the affected
individuals that I have observed have better than average intelligence.”

Modesty prevents me from saying that my own extensive survey of one
individual (me, as it coincidentally happens) confirms those earlier
assertions, although the individual in question allowed his MENSA
membership to lapse 20 years ago, and his wife begs to differ.

Rob W
Oz