Re: Re: comments about BLEPHS

[Guest guest]

I come from a family of BPES back so far I'm not so sure how many people in the family have had it. I have passed it on to 2 of my sons. My oldest son who is 12 and my youngest who is 7. My oldest son had a more severe case than i had when i was born, he looks amazing now. He has ADD/ODD, is far from getting straight A's and struggles in school. My 7 yr old had a more severe case of BPES. He's in 2nd grade and is working at a kindergarten level. He also has ADHD and i believe he has other issues too, but i'm still waiting to get him tested. He goes to special education most of the day and he sees the speech therapist twice a week and also goes to PT and OT. I believe that his level in school goes back to when he was born and wasn't able to open his eyes for 3 wks. He had a temporary surgery when he was 4½ months old just to raise his eyelids up so his pupils were exposed. When i was thinking back about the time when he was a baby i remember him being the most crabbiest baby i had seen. He was always crying and was just never happy. I believe it was because he couldn't see. When he started walking and would fall or bump into the wall he would throw the biggest temper tantrums. I believe that was also because he couldn't see and he was frustrated. I had no trouble in school and got A's and B's, so who knows. I really believe that we look too much into why our kids are certain ways. I used to say "well, maybe he's like this because of having BPES". A lot of kids have a variety of things and believe that's just something that happens. Not because of them having something else. I've looked so far into why my youngest has so many problems and i've just came to the conclusion that sometimes things just happen. I don't think his problems are because he has BPES. I'd like to blame it on that, but i honestly don't think that to be true.

--- In blepharophimosis , "kbeav94" <kbeav94@y...>

wrote:

> My name is Kim. My daughter, Jordan, has blephs. She is 8 years

old.

> Her Dad has blephs, so does an older sister and older brother.

Her

> Dad and Jordan are the only two to have the surgery. The other

> children live with their mother who chose not to have any

surgeries.

> Jordan's first sugery was at 15 months old in Birmingham, Alabama.

> Her doctor was Dr. Cogen at Callahan's Eye Foundation

Hospital.

> He was wonderful. The surgery was done for vision reasons.

Jordan

> pupils were covered and he didn't want it to affect her vision.

The

> surgery was only 45 min and we went home the same day. I would

> reccommend Dr. Cogen to anyone. The second surgery was on June 1,

> 2005. Dr. Cogen does not do the permenent surgery so we chose a

> doctor in Atlanta, GA. His name is Dr. Harvery "Chip" Cole. He

is an

> occular plastic surgeon. We opted to just have a lift at this

point.

> It really made a difference in the openings of her eyes. He

> suggested that we only do that instead of the "big" surgery. He

said

> that Jordan's appearance will change and that you wouldn't believe

how

> small steps would make a difference. Anyway, that is the route we

> took and we are all very happy, especially Jordan. The second

surgery

> was also just a day surgery.

>

> I am not sure what type of blephs Jordan has but God has a way of

> taking care of things. Of course, I have not said anything to her

> about POF but she already says she wants to adopt children. Has

> always been what she has wanted so maybe God put that in her heart

> because of that?? Who knows? Jordan is in the third grade this

year

> and she was tested for the Gifted Class. She makes straight A's

and

> reads on a fifth grade level. She loves to read. The older

children

> were also very intelligent. Honor Students. Brittany graduated

two

> years ago and Blake is in the 8th grade.

>

> The things I have been reading about other symptoms children have

lead

> me to believe that may not even be related to BLEPHS. I have

always

> been told that children with blephs seem to have above average

> intelligence.? That is the case with us anyway, my husband is very

> intelligent also. He was the first in his family to have it and 3

of

> his four children have it. This is a second marriage for us both,

so

> I knew the risks and would have done it over again to have Jordan.

> Everyone just goes on about how beautiful she is....

>

> Please feel free to email me at kbeaver@c... if you have any

> questions.

>

> Thanks,

> Kim Beaver