Re: 11 month old daughter

[Guest guest]

Cammie-

I'm with you! My son will be 1 on the 9th and we go through the same thing constantly. He's had surgery for his Ptosis but no one will diagnose him with Bleph, which he clearly has also. As a mother, you are your child's best advocate and joining this group was one of the best things you could do for her. I suggest you do a significant amount of research on the condition and FIGHT FIGHT FIGHT for your child. A lot of these Drs. will not give in easily. In the end, it will be up to you to decide if your child will have any surgeries, etc but DO NOT give up or in. Being proactive now can assist in preventing long term complications like with her vision for example, if your her vision even has the potential to be affected.

Currently, genetics testing for this condition is only done in Belgium or Germany and costs about $500.00 US if your Insurance doesn't cover it.

My suggestion is that you do research in your surrounding area for any highly-recommended Pediatric Opthalmologists, if you have not already done so, and start with one of them.

I wish you luck and I am glad you joined us!

Rae Ann cammie_avis <cammie_avis@...> wrote:

I am a mother of three daughters ages 6 years, 4 years and 11 months old. My first two do not have BPES but my 11 month old has. No one in mine or her fathers family has never been affected by this syndrome. I am wondering why she was born with this and how it will effect her life? We have seen several specialist that seem to say the same things they all say its just cosmetic and it does not effect her mentally but I have to differ with their advice. She doesnt do things that other children her age are doing, she does wave hi or bye, she holds her chin up to see things and they are all telling I am worring to much.I dont believe I am getting the best advice from these doctors. I just would like to hear from someone that has been through this ordeal. Please email and let me know how you are making it through.

[Guest guest]

Hi Cammie

My Daughter is nearly two and the first advise she got was to wait as it is only cosmectic BUT he was wrong.If your daughters pupils are obstructed by her lids then it WILL effect her devolpment,believe me I know.My daughters devolpment is slow now even after her first op to lift her lids,I think when a child has severe ptosis and can only use central vision it must halt their devolpment.

My advise is not to give up and maybe tell them you have done some research I am sure I am not the only one who will reply to you, take our advise and go get them.

Good Luck.

cammie_avis <cammie_avis@...> wrote:

I am a mother of three daughters ages 6 years, 4 years and 11 months old. My first two do not have BPES but my 11 month old has. No one in mine or her fathers family has never been affected by this syndrome. I am wondering why she was born with this and how it will effect her life? We have seen several specialist that seem to say the same things they all say its just cosmetic and it does not effect her mentally but I have to differ with their advice. She doesnt do things that other children her age are doing, she does wave hi or bye, she holds her chin up to see things and they are all telling I am worring to much.I dont believe I am getting the best advice from these doctors. I just would like to hear from someone that has been through this ordeal. Please email and let me know how you are making it through.

[Guest guest]

Dear Cammie,

I feel for you, we too were in your shoes only 6 short years ago. We were told the same info about our son brock. However, like you, we noticed he wasn't doing the things children his age were "suppose" to do. I would recommend visiting a genetics doctor, ours was great, she was able to recommend therapy for Brock, and finally give us the correct info for our son. There are several syndromes that have bpes with them, but only a genetics doctor will be able to help you figure it all out. Good luck, this group is WONDERFUL! Stick to your gut you know your child the best, and if you don't think she is progressing as she should, then keep pursuing it. Every child is different too, so your daughter may be just doing things on "her" time table, not everyone elses. Good luck to you, I will be praying for you and your family. Sincerely, Kim cammie_avis <cammie_avis@...> wrote:

I am a mother of three daughters ages 6 years, 4 years and 11 months old. My first two do not have BPES but my 11 month old has. No one in mine or her fathers family has never been affected by this syndrome. I am wondering why she was born with this and how it will effect her life? We have seen several specialist that seem to say the same things they all say its just cosmetic and it does not effect her mentally but I have to differ with their advice. She doesnt do things that other children her age are doing, she does wave hi or bye, she holds her chin up to see things and they are all telling I am worring to much.I dont believe I am getting the best advice from these doctors. I just would like to hear from someone that has been through this ordeal. Please email and let me know how you are making it through.

[Guest guest]

My 1si two sons now 13 & 10 developed fine always on time. now 3 months is a little behind at this stage...hard to tell how it will go since she is so young now. Good Luck cammie_avis <cammie_avis@...> wrote:

I am a mother of three daughters ages 6 years, 4 years and 11 months old. My first two do not have BPES but my 11 month old has. No one in mine or her fathers family has never been affected by this syndrome. I am wondering why she was born with this and how it will effect her life? We have seen several specialist that seem to say the same things they all say its just cosmetic and it does not effect her mentally but I have to differ with their advice. She doesnt do things that other children her age are doing, she does wave hi or bye, she holds her chin up to see things and they are all telling I am worring to much.I dont believe I am getting the best advice from these doctors. I just would like to hear from someone that has been through this ordeal. Please email and let me know how you are making it through.

[Guest guest]

I totally agree here ! With 3 kids with bleph i have seen many differences between them. My daughter is having surgery at 3 months where as my sons waited 2-3 years. 's vision is being affected by her lids being so closed...they feel she is loosing vision in her right eye. Right now she is very young and has slits for opening so it is extremely hard to test her vision. She will get tested a few weeks after surgery to tell how much if any damage was done. We are hoping none since we were aware of it from the beginning and have been working to improve her right eye which is worse than her left. It is not all the time cosmetic as some docots think...use your better judement you know your child. Good Luck

Lott <lott_tracy@...> wrote:

Hi Cammie

My Daughter is nearly two and the first advise she got was to wait as it is only cosmectic BUT he was wrong.If your daughters pupils are obstructed by her lids then it WILL effect her devolpment,believe me I know.My daughters devolpment is slow now even after her first op to lift her lids,I think when a child has severe ptosis and can only use central vision it must halt their devolpment.

My advise is not to give up and maybe tell them you have done some research I am sure I am not the only one who will reply to you, take our advise and go get them.

Good Luck.

cammie_avis <cammie_avis@...> wrote:

I am a mother of three daughters ages 6 years, 4 years and 11 months old. My first two do not have BPES but my 11 month old has. No one in mine or her fathers family has never been affected by this syndrome. I am wondering why she was born with this and how it will effect her life? We have seen several specialist that seem to say the same things they all say its just cosmetic and it does not effect her mentally but I have to differ with their advice. She doesnt do things that other children her age are doing, she does wave hi or bye, she holds her chin up to see things and they are all telling I am worring to much.I dont believe I am getting the best advice from these doctors. I just would like to hear from someone that has been through this ordeal. Please email and let me know how you are making it through.

[Guest guest]

Cammie,

I haven't been going thru all of the things that some of the other

parents have had to go thru with surgeries and all. But one thing I

learned from this group is that if what he doctors are saying to you

and you don't agree, get a second opinion and find a doc who will

listen to you. You know your daughter better than the doc does. Good

luck with everything and blessing to you and your family.

Amy

West Mifflin, PA

> I am a mother of three daughters ages 6 years, 4 years and 11 months

> old. My first two do not have BPES but my 11 month old has. No one

in

> mine or her fathers family has never been affected by this syndrome.

I

> am wondering why she was born with this and how it will effect her

> life? We have seen several specialist that seem to say the same

things

> they all say its just cosmetic and it does not effect her mentally

but

> I have to differ with their advice. She doesnt do things that other

> children her age are doing, she does wave hi or bye, she holds her

> chin up to see things and they are all telling I am worring to much.

> I dont believe I am getting the best advice from these doctors. I

just

> would like to hear from someone that has been through this ordeal.

> Please email and let me know how you are making it through.

[Guest guest]

I think any doctor or parent or developmental specialist would tell

you , there is a wide range or " normal " development for a child.

Having limited vision is going to have some affect on a child, but

it's difficult to measure. My daughter had surgery very early so that

her development wouldn't be affected, but she still does not have the

range of vision of other children, and she has been slow to crawl,

walk, etc., Is it because of BPES or just the way she is???? We will

never really know for certain. I couldn't open my eyes much at all

until I was 10 months old, I walked at 13 months, never had any

learning issues, etc., 4 generations of my family have BPES, none of

us have any type of cognitive delays or disabilities. My grandfather

never had surgery at all. In fact, the compensatory strategies you

develop sometimes can produce interesting talents.

Does anyone know for certain that their child will also be healthy,

develop as expected, be exactly like their siblings/classmates?

What others have said, is true.. find a doctor you trust, get genetic

testing if you want to make sure she has BPES. If you are unhappy

with the doctors you currently deal with, find someone who will

listen to you, someone you trust, someone you feel comfortable with.

> > I am a mother of three daughters ages 6 years, 4 years and 11

months

> > old. My first two do not have BPES but my 11 month old has. No

one

> in

> > mine or her fathers family has never been affected by this

syndrome.

> I

> > am wondering why she was born with this and how it will effect

her

> > life? We have seen several specialist that seem to say the same

> things

> > they all say its just cosmetic and it does not effect her

mentally

> but

> > I have to differ with their advice. She doesnt do things that

other

> > children her age are doing, she does wave hi or bye, she holds

her

> > chin up to see things and they are all telling I am worring to

much.

> > I dont believe I am getting the best advice from these doctors. I

> just

> > would like to hear from someone that has been through this

ordeal.

> > Please email and let me know how you are making it through.