Re: My Little Sweetheart

[Guest guest]

Hi Cassandra

Welcome to the group. I have just read your email and I am

wondering, what did the geneticist say that little Tristan has? I

wonder if you could tell us what the exact diagnosis is … the reason I am

asking is because there are several syndromes that have Blepharophimosis.

For example:

BPES (which stands for Blepharophimosis, Ptosis, Epicanthus Inversus

Syndrome).

Ohdo Syndrome: which is named after Dr Ohdo … people with

this syndrome have Blepharophimosis and Ptosis, (see article below). They also

have other issues.

And so on.

I don’t want to worry you unnecessarily or cause any

concern, I am sure that your paediatrician and geneticist are professionals,

but I would like to recommend that you consider the following.

Take a look at this article:

http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html

And also send a copy to both your doctor and your paediatrician.

Then ask them to explain to you exactly what the diagnosis is. If there is

anything you don’t understand in this article then ask them to explain it

to you. The person who wrote it is one of the leading experts on BPES in

the world. It is quite likely that she has met more people with BPES than

anyone else. The lab where she works is one of the few places that carries out

the genetics tests for BPES (and other related syndromes).

Cassandra, I am not a medical professional, and so it would be

entirely inappropriate for me to suggest that your healthcare team have done

anything but being professional. Nor is it right for me to doubt what they have

said. The only point I am making is that make sure you have all the right

information, and if they are in any doubt, ask for a second opinion. Once you

show people a good written resource and say “how much of this is relevant

to Tristan?”, they can then assure you that their diagnosis is spot on,

and this will lead to you getting the best treatment plan for you child.

Good luck

Take care

Shireen Mohandes

(I am 46 years old, and the only person in my family with BPES.

I was diagnosed at birth, and I was born in a small rural hospital in the

middle of a desert town in Iran)

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of imagine_2200

Sent: 04 November 2007 00:37

blepharophimosis

Subject: blepharophimosis My Little Sweetheart

Hi my name is Cassandra. My first born is a

little boy...and when he

was born I thought he was the most beautiful angel...but hey we all

think that they our little babies that we carried for nine

months...and like alot of peoples fears we all just want healthy

children with all their limbs and fingers and toes...Well my little

Tristan has very distinctive eyes...and anywhere I went was it the

mall the grocery store...or local Wal Mart...complete strangers would

stop me and tell he " there is just something about his eyes " or

" they

would ask if his father was oriental? " . Well I never thought anything

of it till he was around two and I asked his peditrician and she got

to looking at him and me and said " I am going to set up for him to

see a geneticist " . So we made the appt the doc looked at him took

some blood and then we went back for the follow up or whatever and

she said well he has blepharophimosis and it is his 43 chromosome and

handed me two pages that were copied out of an encyclopedia...and I

said okay is he slow is he gonna have learning disabilites...and she

said how well did you do in school...I said I did as good as I put

effort into it...she said then he'll be fine...so like any mother I

came home and searched the web and found interesting things that I

knew he was definateley diagnosed correctly. For instance his

testicles were slow in descending...and his right ear lobe was under

the outer corner of his eye...he also has a very distictive nose

almost like a beak or bird like like no other in my or his fathers

family..and after looking at pictures of other children with his

diagnoses...I noticed they had noses like his...and he tends to speak

thru his nose and is currently in speach classes and didnt really

even start talking until he was around three and a half. Well this is

the jist and I just wanted to share my experience and maybe see if

anyone else has the same things or their thoughts. His pics are

posted here in the albums... " Sweet Tristan " . Again thank you for you

r time and thank you for reading this...

Cassandra

[Guest guest]

Hi Cassandra:)

I just had a look at your pics...Your son doesn't even look like he has bleph....Has he had surgery? He looks great! Our 2nd son Ethan (wearing pumpkin outfit) is turning 5 in January....he has had no surgeries and won't as his vision is not affected and compensates well by raising his eyebrows, he doesn't tilt his head, just looks straight ahead... He is our little angel as well, he has the most beautiful loving nature, and we are dreading him starting school in a few months:( We don't want his beautiful spirit broken down by horrible comments kids will unfortunately make towards him:( His happy go lucky personality will hopefully get him through it! He is VERY articulate, loves people, and is very social:) Check out his photos....there are ones of him and his older brother and us (mum and dad)

Leanne and family NZ

-- blepharophimosis My Little Sweetheart

Hi my name is Cassandra. My first born is a little boy...and when he was born I thought he was the most beautiful angel...but hey we all think that they our little babies that we carried for nine months...and like alot of peoples fears we all just want healthy children with all their limbs and fingers and toes...Well my little Tristan has very distinctive eyes...and anywhere I went was it the mall the grocery store...or local Wal Mart...complete strangers would stop me and tell he "there is just something about his eyes" or "they would ask if his father was oriental?". Well I never thought anything of it till he was around two and I asked his peditrician and she got to looking at him and me and said "I am going to set up for him to see a geneticist". So we made the appt the doc looked at him took some blood and then we went back for the follow up or whatever and she said well he has blepharophimosis and it is his 43 chromosome and handed me two pages that were copied out of an encyclopedia...and I said okay is he slow is he gonna have learning disabilites...and she said how well did you do in school...I said I did as good as I put effort into it...she said then he'll be fine...so like any mother I came home and searched the web and found interesting things that I knew he was definateley diagnosed correctly. For instance his testicles were slow in descending...and his right ear lobe was under the outer corner of his eye...he also has a very distictive nose almost like a beak or bird like like no other in my or his fathers family..and after looking at pictures of other children with his diagnoses...I noticed they had noses like his...and he tends to speak thru his nose and is currently in speach classes and didnt really even start talking until he was around three and a half. Well this is the jist and I just wanted to share my experience and maybe see if anyone else has the same things or their thoughts. His pics are posted here in the albums..."Sweet Tristan". Again thank you for you r time and thank you for reading this...Cassandra

[Guest guest]

Shireen Mohandes, Hi How are you? Tahnk you for your reply to my message...all i was told as I siad in my message is that he has blepharophimosis...and that it was his 43 chromosome where it generated from and that is was passed to him from me or his dad...she took a look at me and said yeah its probably you...that I looked like I had as well....it just wasnt a very bad case. She wasnt very resourceful besides giving me the copied text from an enclopedia. It was a cooks childrens geneticist. And so not knowing much and or really not anything I looked online and he has alot of traits that are found with others with this eyelid condition...he has low set ears he has to raise his eyebrows ro make different facial expressions...his testicles were late in decent...he has speech issues which he is taking speech classes in school. Tristan is very special child...and I dont mean that in that like he is gifted and talented or mentally

challenged...I have three kids and he was my first born and this kid is caring beyond his years...wears his heart on his sleeve so to speak...xtra xtra loving...he can be a lil pest to or normal civil rivalry with his sisters...he is a normal kid...I really dont know what I am trying to say...lol...but I only know what the doc said and know after reading ur email...I would like for him to have more testing or something...did you look at his pics? what are your thoughts? Sincereley, Cassandra Shireen Mohandes <shireen@...> wrote: Hi Cassandra Welcome to the group. I have just read your email and I am wondering, what did the geneticist say that little Tristan has? I wonder if you could tell us what the exact diagnosis is … the reason I am asking is because there are several syndromes that have Blepharophimosis. For example: BPES (which stands for Blepharophimosis, Ptosis, Epicanthus Inversus Syndrome). Ohdo Syndrome: which is named after Dr Ohdo … people with this syndrome have Blepharophimosis and Ptosis, (see article below). They also have other issues. And so on. I don’t want to worry you unnecessarily or cause any concern, I am sure that your paediatrician and geneticist are professionals, but I would like to recommend that you consider the following. Take a look at this article: http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html And also send a copy to both your doctor and your paediatrician. Then ask them to explain to you exactly what the diagnosis is. If there is anything you don’t understand in this article then ask them to explain it to you. The person who wrote it is one of the leading experts on BPES in the world. It is quite likely that she has met more people with BPES than anyone else. The lab where she works is one of the few places that carries out the genetics tests for BPES (and other related

syndromes). Cassandra, I am not a medical professional, and so it would be entirely inappropriate for me to suggest that your healthcare team have done anything but being professional. Nor is it right for me to doubt what they have said. The only point I am making is that make sure you have all the right information, and if they are in any doubt, ask for a second opinion. Once you show people a good written resource and say “how much of this is relevant to Tristan?”, they can then assure you that their diagnosis is spot on, and this will lead to you getting the best treatment plan for you child. Good luck Take care Shireen Mohandes (I am 46 years old, and the only person in my family with BPES. I was diagnosed at birth, and I was born in a small rural hospital in the middle of a desert town in Iran) From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of imagine_2200Sent: 04 November 2007 00:37blepharophimosis Subject: blepharophimosis

My Little Sweetheart Hi my name is Cassandra. My first born is a little boy...and when he was born I thought he was the most beautiful angel...but hey we all think that they our little babies that we carried for nine months...and like alot of peoples fears we all just want healthy children with all their limbs and fingers and toes...Well my little Tristan has very distinctive eyes...and anywhere I went was it the mall the grocery store...or local Wal Mart...complete strangers would stop me and tell he "there is just something about his eyes" or "they would ask if his father was oriental?". Well I never thought anything of it till he was around two and I asked his peditrician and she got to looking at him and me and said "I am going to set up for him to see a geneticist". So we made the appt the doc

looked at him took some blood and then we went back for the follow up or whatever and she said well he has blepharophimosis and it is his 43 chromosome and handed me two pages that were copied out of an encyclopedia...and I said okay is he slow is he gonna have learning disabilites...and she said how well did you do in school...I said I did as good as I put effort into it...she said then he'll be fine...so like any mother I came home and searched the web and found interesting things that I knew he was definateley diagnosed correctly. For instance his testicles were slow in descending...and his right ear lobe was under the outer corner of his eye...he also has a very distictive nose almost like a beak or bird like like no other in my or his fathers family..and after looking at pictures of other children with his diagnoses...I noticed they had noses like his...and he tends to speak thru his nose and

is currently in speach classes and didnt really even start talking until he was around three and a half. Well this is the jist and I just wanted to share my experience and maybe see if anyone else has the same things or their thoughts. His pics are posted here in the albums..."Sweet Tristan". Again thank you for you r time and thank you for reading this...Cassandra __________________________________________________

[Guest guest]

Leanne, Hi HOW are you? Thanks for your responce...and he has never had surgery. He is as sweet as your son it sounds...my son is very much a sweetie too...and he has already got picked on...he started kindergarten this past august...one lil boy asked him why he looked like a pit bull and then demonstrated on his own face pulling his cheeks back to make his own eyes stretch out to his ears to narrow his eyes...I was completeley and utterly shocked...i wanted to well it was painful and Tristan is so sweet he looked at me and said "I don't look like no pit bull!" and I said you don't...I don't know what that little boys talking about and left it at that...and he has his own english per say lol but with him being in school kids are telling him that "he's not smart!" which is painful as well but it is hard to kinder his spirits bc he is always happy go lucky less he's pickin on his lil sisters...lol....He also has low ears and is taking

speech therapy in school. His teacher just loves him to pieces and he has never...not once...brought home anything but smiley faces...in his disiplinary folder he brings home daily. I really don't know much except for what the geneticist told me...she said that I shouldnt mention it to his schools and that it was really not a big deal but I am definateley glad I found this group bc it has raised my thoughts and feelings about what I thought I knew. I definateley have some questions for his pediatrician and really just want to learn as much as I can. again thank you for your email and I would love to talk more. I have his baby pics but they arent on here but as a baby it was more noticeable...but as he has grown like jolly green giant he is growing into his self and his eyes. well this was a lil choppy and alot of mixed thoughts but I hope it makes sence. Well take care and ur sons are absoluteley gorgous and YOu have a beautiful family. Cassandra Costello <tltne@...> wrote: Hi Cassandra:) I just had a look at your pics...Your son doesn't even look like he has bleph....Has he had surgery? He looks great! Our 2nd son Ethan (wearing pumpkin outfit) is turning 5 in January....he has had no surgeries and won't as his vision is not affected and

compensates well by raising his eyebrows, he doesn't tilt his head, just looks straight ahead... He is our little angel as well, he has the most beautiful loving nature, and we are dreading him starting school in a few months:( We don't want his beautiful spirit broken down by horrible comments kids will unfortunately make towards him:( His happy go lucky personality will hopefully get him through it! He is VERY articulate, loves people, and is very social:) Check out his photos....there are ones of him and his older brother and us (mum and dad) Leanne and family NZ -- blepharophimosis My Little Sweetheart Hi my name is Cassandra. My first born is a little boy...and when he was born I thought he was the most beautiful angel...but hey we all think that they our little babies that we carried for nine months...and like alot of peoples fears we all just want healthy children with all their limbs and fingers and toes...Well my little Tristan has very distinctive eyes...and anywhere I went was it the mall the grocery store...or local Wal Mart...complete strangers would stop me and tell he "there is just something about his eyes" or "they would ask if his father was oriental?". Well I never thought anything of it till he was around two

and I asked his peditrician and she got to looking at him and me and said "I am going to set up for him to see a geneticist". So we made the appt the doc looked at him took some blood and then we went back for the follow up or whatever and she said well he has blepharophimosis and it is his 43 chromosome and handed me two pages that were copied out of an encyclopedia...and I said okay is he slow is he gonna have learning disabilites...and she said how well did you do in school...I said I did as good as I put effort into it...she said then he'll be fine...so like any mother I came home and searched the web and found interesting things that I knew he was definateley diagnosed correctly. For instance his testicles were slow in descending...and his right ear lobe was under the outer corner of his eye...he also has a very distictive nose almost like a beak or bird like like no other in my or his fathers

family..and after looking at pictures of other children with his diagnoses...I noticed they had noses like his...and he tends to speak thru his nose and is currently in speach classes and didnt really even start talking until he was around three and a half. Well this is the jist and I just wanted to share my experience and maybe see if anyone else has the same things or their thoughts. His pics are posted here in the albums..."Sweet Tristan". Again thank you for you r time and thank you for reading this...Cassandra __________________________________________________

[Guest guest]

Hello Everyone...shireen asked what syndrome my son has...all I was

told is that he has blepharophimosis. And that is why I came here welll

stumbled upon this site. I would like to learn as much as I can. HE has

low set ears, and a really small mouth, distinctive nose...and no

eyelids...just slits in his face where his eyes are...and thats it...do

you guys think he was diagnosed incorrectly I mean the word means

condition of the eyelid...right? And there's no other reason to expalin

his abnormalities...Thank you...hope to hear from you soon.

Cassandra

[Guest guest]

Your son sounds just like our Ethan! The preschool teachers (me been one of them) absolutely love him also...they have not one thing to fault him on but his loving, soft, happy go lucky nature:) He has been at preschool since he was about 2 1/2, I was very reluctant believe me! In the 2 years so far I can say the only time he has come home and said something was about 1 month ago....we were reading him his bedtime story and we had taken his glasses off, well he went to get them to put back on, we asked him why he was putting them back on at bedtime? He said *because I look funny without my glasses* well my heart sunk:( I started to cry and we asked him what he meant....He said at *mat time* at preschool (that's after lunch when they lie down and rest for 10 min) A little girl Holly Paris was lying next to him and told him to take his glasses off, she started laughing at him and said he looked funny without his glasses!!! Well I work there, so the next day I told the teachers what had happened, they said they would expect that from that little girl, but that's honestly the only time that I know about anyway! We have had plenty of comments elsewhere, like kids looking at him and asking him if he is blind! When they can clearly see him running around with them! when he was a baby we used to get lots of people say how gorgeous and different he looked...when he was wide awake they would say, oh he looks so peaceful! Or I got the *is your husband Asian*! plenty of times:) One very funny story and I did have to laugh, was when we were in a shop and Ethan likes to talk to people, so here he is walking up to 2 ladies and smiling at them while talking, as they walked away they turned at him and said *You better open your eyes or your going to walk into something!* the other lady she was with asked her what she said to him and she told her *That little boy is walking around with his eyes closed!* It was the only time I laughed because they were none the wiser:) The worst comment, the one that cut the deepest was at our oldest sons school...again, Ethan been social like he was walked up to two girls and started smiling at them...Well they started laughing and said *that baby is hideous* I was standing there and heard it! I had to fight back the anger and tears til I turned away after letting them have it! I was so down for the next week, it hurt SO bad because he is so innocent to it all....hence why I am dreading him starting school in 2 months:( But anyways, what can I do but keep telling him how precious and handsome he is!!! My husband and I have drummed that into him right from the beginning Ok, I have gone on long enough, time to put them to bed!....talk again soon:)

leanne and family NZ

-- blepharophimosis My Little Sweetheart

Hi my name is Cassandra. My first born is a little boy...and when he was born I thought he was the most beautiful angel...but hey we all think that they our little babies that we carried for nine months...and like alot of peoples fears we all just want healthy children with all their limbs and fingers and toes...Well my little Tristan has very distinctive eyes...and anywhere I went was it the mall the grocery store...or local Wal Mart...complete strangers would stop me and tell he "there is just something about his eyes" or "they would ask if his father was oriental?". Well I never thought anything of it till he was around two and I asked his peditrician and she got to looking at him and me and said "I am going to set up for him to see a geneticist". So we made the appt the doc looked at him took some blood and then we went back for the follow up or whatever and she said well he has blepharophimosis and it is his 43 chromosome and handed me two pages that were copied out of an encyclopedia...and I said okay is he slow is he gonna have learning disabilites...and she said how well did you do in school...I said I did as good as I put effort into it...she said then he'll be fine...so like any mother I came home and searched the web and found interesting things that I knew he was definateley diagnosed correctly. For instance his testicles were slow in descending...and his right ear lobe was under the outer corner of his eye...he also has a very distictive nose almost like a beak or bird like like no other in my or his fathers family..and after looking at pictures of other children with his diagnoses...I noticed they had noses like his...and he tends to speak thru his nose and is currently in speach classes and didnt really even start talking until he was around three and a half. Well this is the jist and I just wanted to share my experience and maybe see if anyone else has the same things or their thoughts. His pics are posted here in the albums..."Sweet Tristan". Again thank you for you r time and thank you for reading this...Cassandra

__________________________________________________

[Guest guest]

Oh Leanne, it has been awhile since I wrote on this but I do often read the entries! I am Karla from Michigan and my son is on as Marcus J. I know that you and I have talked before and said our boys look so much alike its scary! Well just so you know......we had Marcus' conferences yesterday for 1st grade and I cannot be more proud of the little guy. The teacher had nothing but good to say about him and how extremely smart he is and how he participates in all things and even going in front of class. I wasn't too shocked because he is our social butterfly, but he is sooooooo confident and I guess I am so proud to say I am his mother! I believe if we continue to say, what you say to ETHAN that he is precious and everyone is different in all of our eyes! That's what we told Marcus all of his life and we have had a few of the same things happen to us, but as long as I can remember he looks at people like "what is wrong with

you", and continues on his way and then they see that he is so normal!! The teacher also, said he has soooo many friends, younger than him, his age and also older---He is just loved all around and I couldn't be more proud! He truly has been taught that nothing is wrong and other people have things that may be different also and to not ever tease someone about their looks, cuz GOD loves them just the way they are---- and we don't ever make a big deal out of any of it!! (Stressful for a mom----- YES) It obviously has paid off for him!!! Godd luck and I know Ethan will make huge steps----these boys are so confident in themselves!!! KarlaCostello <tltne@...> wrote: Your son sounds just like our Ethan! The preschool teachers (me been one of them) absolutely love him also...they have not one thing to fault him on but his loving, soft, happy go lucky nature:) He has been at preschool since he was about 2 1/2, I was very reluctant believe me! In the 2 years so far I can say the only time he has come home and said something was about 1 month ago....we were reading him his bedtime story and we had taken his glasses off, well he went to get them to put back on, we asked him why he was putting them back on at bedtime? He said *because I look funny

without my glasses* well my heart sunk:( I started to cry and we asked him what he meant....He said at *mat time* at preschool (that's after lunch when they lie down and rest for 10 min) A little girl Holly Paris was lying next to him and told him to take his glasses off, she started laughing at him and said he looked funny without his glasses!!! Well I work there, so the next day I told the teachers what had happened, they said they would expect that from that little girl, but that's honestly the only time that I know about anyway! We have had plenty of comments elsewhere, like kids looking at him and asking him if he is blind! When they can clearly see him running around with them! when he was a baby we used to get lots of people say how gorgeous and different he looked...when he was wide awake they would say, oh he looks so peaceful! Or I got the *is your husband Asian*! plenty of times:) One very funny story and I did have to laugh, was when we

were in a shop and Ethan likes to talk to people, so here he is walking up to 2 ladies and smiling at them while talking, as they walked away they turned at him and said *You better open your eyes or your going to walk into something!* the other lady she was with asked her what she said to him and she told her *That little boy is walking around with his eyes closed!* It was the only time I laughed because they were none the wiser:) The ! worst co mment, the one that cut the deepest was at our oldest sons school...again, Ethan been social like he was walked up to two girls and started smiling at them...Well they started laughing and said *that baby is hideous* I was standing there and heard it! I had to fight back the anger and tears til I turned away after letting them have it! I was so down for the next week, it hurt SO bad because he is so innocent to it all....hence why I am dreading him starting school in 2 months:( But anyways, what can I do

but keep telling him how precious and handsome he is!!! My husband and I have drummed that into him right from the beginning Ok, I have gone on long enough, time to put them to bed!....talk again soon:) leanne and family NZ -- blepharophimosis My Little

Sweetheart Hi my name is Cassandra. My first born is a little boy...and when he was born I thought he was the most beautiful angel...but hey we all think that they our little babies that we carried for nine months...and like alot of peoples fears we all just want healthy children with all their limbs and fingers and toes...Well my little Tristan has very distinctive eyes...and anywhere I went was it the mall the grocery store...or local Wal Mart...complete strangers would stop me and tell he "there is just something about his eyes" or "they would ask if his father was oriental?". Well I never thought anything of it till he was around two and I asked his peditrician and she got to looking at him and me and said "I am going to set up for him to see a geneticist". So we made the appt the doc looked at him took some blood and then we went back for the follow up or

whatever and she said well he has blepharophimosis and it is his 43 chromosome and handed me two pages that were copied out of an encyclopedia...and I said okay is he slow is he gonna have learning disabilites...and she said how well did you do in school...I said I did as good as I put effort into it...she said then he'll be fine...so like any mother I came home and searched the web and found interesting things that I knew he was definateley diagnosed correctly. For instance his testicles were slow in descending...and his right ear lobe was under the outer corner of his eye...he also has a very distictive nose almost like a beak or bird like like no other in my or his fathers family..and after looking at pictures of other children with his diagnoses...I noticed they had noses like his...and he tends to speak thru his nose and is currently in speach classes and didnt really even start talking until

he was around three and a half. Well this is the jist and I just wanted to share my experience and maybe see if anyone else has t! he same things or their thoughts. His pics are posted here in the albums..."Sweet Tristan". Again thank you for you r time and thank you for reading this...Cassandra __________________________________________________

[Guest guest]

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Hi Karla,

SO TRUE!!! Ethan's definitely our social butterfly, and like Marcus, he will happily get up in front of his class to speak, very confidently and happily...Sometimes when we are out and he goes up to people with this huge smile or to show them his hotwheel car, or to just randomly talk to them, they are taken back because he is so forward, and curious about his eyes I'm sure People tell me he is very articulate and that's just great to hear:) he is VERY smart and intelligent! Our favorite thing is at bed time when he will read to US, it's so cute because he get's the expression to what he's reading or should I say memorized! Anyway, gotta run to work....talk soon,

leanne and family NZ

-- blepharophimosis My Little Sweetheart

Hi my name is Cassandra. My first born is a little boy...and when he was born I thought he was the most beautiful angel...but hey we all think that they our little babies that we carried for nine months...and like alot of peoples fears we all just want healthy children with all their limbs and fingers and toes...Well my little Tristan has very distinctive eyes...and anywhere I went was it the mall the grocery store...or local Wal Mart...complete strangers would stop me and tell he "there is just something about his eyes" or "they would ask if his father was oriental?". Well I never thought anything of it till he was around two and I asked his peditrician and she got to looking at him and me and said "I am going to set up for him to see a geneticist". So we made the appt the doc looked at him took some blood and then we went back for the follow up or whatever and she said well he has blepharophimosis and it is his 43 chromosome and handed me two pages that were copied out of an encyclopedia...and I said okay is he slow is he gonna have learning disabilites...and she said how well did you do in school...I said I did as good as I put effort into it...she said then he'll be fine...so like any mother I came home and searched the web and found interesting things that I knew he was definateley diagnosed correctly. For instance his testicles were slow in descending...and his right ear lobe was under the outer corner of his eye...he also has a very distictive nose almost like a beak or bird like like no other in my or his fathers family..and after looking at pictures of other children with his diagnoses...I noticed they had noses like his...and he tends to speak thru his nose and is currently in speach classes and didnt really even start talking until he was around three and a half. Well this is the jist and I just wanted to share my experience and maybe see if anyone else has t! he same things or their thoughts. His pics are posted here in the albums..."Sweet Tristan". Again thank you for you r time and thank you for reading this...Cassandra

__________________________________________________