Development Delays and Speech Problems

[Guest guest]

Hi,

My daughter age nearly 8 months has Blepharophimosis. I have found it hard to

get information on the condition from doctors. This website has been more

helpful to me than anything else. The doctors have not mentioned that she could

have development delays or speech problems. Should I be looking out for this?

I know she is probably far too young for me to notice anything yet but when she

tries to say words she seems like she is struggling to get it out. I have

noticed that under her tongue it looks like she has excess skin there. I have

mentioned it to her doctor who just looked at me as if I was being silly. He

tried to have a look but she would not let him near her. My brother has Cerebal

Palsy and had to have speech therapy as a child and I know that they work

wonders. Is it common for a child who has Blepharophimosis to have development

delays and speech problems?

Would appreciate some advice on this...

x

[Guest guest]

Hi . As far as I know, BPES does have many corresponding syndromes - one - Ohto. But, not always. I don't know how common it is but I don't think it is very common.

My son is 5. He was born with a cleft palate, heart abnormalities, hypotonia (low muscle tone) and does have delays - motor, cognitive and speech... all this and BPES.

The genetic tests aren't so great so we have had little results. Fortunately his school has been great with services but you have to keep pushing. My suggestion... I don't know if you live in the U.S. but get early intervention as soon as you can. In my experience, if they are on board, you will have much more success in the public school system once they turn 3.

Warm Regards,

Sandy, Boston, MA

From: <mparker81@...>blepharophimosis Sent: Wed, March 17, 2010 8:21:40 AMSubject: blepharophimosis Development Delays and Speech Problems

Hi,My daughter age nearly 8 months has Blepharophimosis. I have found it hard to get information on the condition from doctors. This website has been more helpful to me than anything else. The doctors have not mentioned that she could have development delays or speech problems. Should I be looking out for this? I know she is probably far too young for me to notice anything yet but when she tries to say words she seems like she is struggling to get it out. I have noticed that under her tongue it looks like she has excess skin there. I have mentioned it to her doctor who just looked at me as if I was being silly. He tried to have a look but she would not let him near her. My brother has Cerebal Palsy and had to have speech therapy as a child and I know that they work wonders. Is it common for a child who has Blepharophimosis to have development delays and speech problems? Would appreciate some advice on this...

x