septo optic dysplasia
Posted by suev on 10/3/2004 at 10:52 PM
we were just told that our 3 month old son has septo optic dysplasi (sod). I am writing to contact anyone that may have an infant or child with this disorder and might be able to give me an idea of what to expect. It seems the problems can vary quite a bit. We are told that he will probably have very poor eye sight -maybe blind. They say some children have still have some changes in eye sight as they grow older (maybe til 6mths?) - anyone experience this? So far it looks like his only hormone problems are with the thyroid but some tests are still being done. He is now talking synthroid (sp?) for they thyroid. He does have very poor muscle tone and not holding his head up - anyone have experience with this and did the thyroid medicine help? Any news, thoughts are greatly appreciated-thanks!!! firstname.lastname@example.org
There are currently 37 replies
Re:septo optic dysplasiaPosted by Web Admin. on 10/8/2004 at 4:28 PM
FOCUS Family extends around the world and they have support groups in the UK, Australia, Canada and the U.S.
They offer a newsletter and e-mail support groups as well.
Hope this helps.
Re:septo optic dysplasiaPosted by AFBInfo Center on 10/12/2004 at 10:43 AM
You might also want to contact the National Association for Parents of Children with Visual Impairments (NAPVI) email email@example.com the National Organization for Parents of Blind Children, which is part of the National Federation of the Blind email firstname.lastname@example.org and the Hadley School for the Blind which has a correspondence course for parents, email email@example.com. While these organizations may not be able to provide you with information specific to the eye condition, they will offer help and support in dealing with your child’s vision problems.
If you would like a copy of Let’s Play, a Guide to Toys for Children with Special Needs (including vision impairment) check the free stuff section of the Bookstore on the American Foundation for the Blind website or email firstname.lastname@example.org.
Re:septo optic dysplasiaPosted by iconlin on 12/8/2004 at 7:36 PM
I am the mother of an 11-year old daughter with Septo Optic Dysplasia. She is totally blind except for some light perception. I dont believe she has had any increase in vision since birth. She still has very poor muscle tone, along with water balance problems (she's always thirsty and wet the bed alot before medication). She has been on the hormone therapy program for almost 8 years, and it has helped tremendously with her growth. At first, I didnt care if she was short, but when I learned her growth deficiency would also affect her vital organs, and maybe even her ability to have children, I wanted to do it. Its been great. She is a total braille reader, walks with a cane, and will one day have a guide dog. She is in a regular public school, as well as an after-school program because I work. She has many friends, and is very independent. If you are looking on the internet for resources, you may want to search on a condition called Demorseys Syndrome. I'm not a doctor, just a Mom, but I've found this to be an excellent description of my childs medical condition. Webmd.com is a great resource. Hope this helps.
Re:septo optic dysplasiaPosted by girlepuetz on 2/1/2005 at 4:49 PM
hey i have a 9 mo old daughter with the same condition. i haven/t noticed that her eue sight has gotten any better and her eye doc sounded very doubtful that it ever would. We have gotten hooked up with a state program that has a visual therapist that is working with us to teach my daughter how to use what vision she does have ( which isn't much). I found out about the state programs from our docs maybe they would have some info for you if you haven't already gotten it. If you would like to chat send me an e-mail at email@example.com
Re:septo optic dysplasiaPosted by Mother1999 on 9/17/2005 at 9:03 PM
I have a 6 year old daughter with SOD and she also has hormone deficiency. She is going to a public school and it has been great. She is working with a teacher for the visually impaired at her school and she is great. When the teacher needs more help in working with my daughter she gets advice from my daughters doctors to help in her teaching her. When she was first born they told me she might not see at all only a little light perception, but thanks to god she has a visual acuity of 20/200 in both eyes and she gets around pretty good.
Re:septo optic dysplasiaPosted by dburch on 3/4/2006 at 8:50 AM
I am the grandmother of a now two year old who was diagnosed with SOD at four months. She is on thyroid medicine and this seemed to help alot. She was always thirsty and urinated more then usual, but this seems to have improved as she got older. She was also daignosed as legally blind the first time her vision was checked but now has light perception. Although she has no other physical problems she just started walking a few weeks ago. She loves music and is very independent! She doesn't let anyone feed her, she want's to feed herself. She is a very happy and healty little girl. As a medical professional I understand each one of these kids are differant. We have had no major medical problems beside the nonfunctioning thyroid gland. She is a total joy!
Re:septo optic dysplasiaPosted by mwilson1713 on 10/9/2006 at 4:36 PM
My daughter (3 months) was recently diagnosed with SOD. She has panhypopituitarism, and the ophthalmologist thinks that she may be completely blind. We just started therapy through Florida's Early Steps program, and we hope to be able to improve her sight as much as possible, though her doctor thinks that it probably won't get any better. Our most important specialist is her endocrinologist - so make sure you find one that you like!
Re:septo optic dysplasiaPosted by Christina_2706 on 7/31/2007 at 10:57 PM
I am a 22 year old with a 10 month old son named Andrew, when my son was a month old we found out he had panhypo.....WE also found out there was a chance that he could be blind. Now at 10 months old they think that he is blind...................... I WOULD LOVE some feedback from other parents with children with this disorder !!!!!!!!!!!!!!! Christina_2706@yahoo.com
Re:septo optic dysplasiaPosted by Christina_2706 on 7/31/2007 at 11:00 PM
My son also takes synthroid, ddavp, and cortef, he still has poor head and neck control and is develoing slower than the average 10 month old. He gets therapy which has helped. According to the vision specialist this is all normal, but still very scary for me. He finally rolls over and says dada and baba................Each grows at their own rate, Id love to talk to other parents!!!!!!!!!!!!!!!!
Re:septo optic dysplasiaPosted by meli on 8/24/2007 at 1:47 AM
my name is mel im nearly 17 years old and my daughter taleisha is nearly 1! taleisha was diagnosed with SOD two months ago through an mri scan. Taleisha has poor muscle tone,ONH and a slightly turned eye, we are still in proceedings of finding out how her eye sight is affected. Taleisha has a few problems with her brain which im happy to talk about if anyone is interested. Taleisha is on a medication phenobarbitone to help control tremors and short seizures. at this stage i'm not aware of any growth problems! I'd love to chat with others realating to SOD! Regards mel
my email address is: firstname.lastname@example.org thanks
Re:septo optic dysplasiaPosted by queenb_angel on 9/4/2007 at 11:59 PM
Hello there...I have an 11 month old daughter that was diagnosed with SOD. I found out she was blind shortly before she turned 3 months old, then on her 4 month birthday I got the news that she was "officially" diagnosed with SOD. From december to june my life was full of whys? crying when I would hold her to just almost having mental breakdowns because of all the testing and meds and everything she has already had to go thru. My daughter too is on synthroid, and in the next 6 months will be starting growth hormone therapy. Luckily at this time she doesn't have cortisol deficiency. But she is and always will be legally blind, she has very poor vision, light barely affects her and then it is only occasionally. I don't know any of you or what you are or have gone through with being a mommy of a disabled child, but I do know that in my own experience. A lot of my stress and anxiety came from not knowing enough about her diagnosis or if she would even live to see her 1st birthday. My name is Angel and my daughters name is Cadence, cadence is lucky enough to have a big sister that adores her and understands that her little sister can't see. Cadence father has come back into our life, I think it was all too much to handle at first for him, but he is doing a wonderful job of trying to be there for appts and support me when I have a hard time. Please contact me if I can help or if you just need someone to listen, I know what its like and for a long time I felt so alone. Although 2 of my friends had babies within a month of cadence, it is not the same. And no matter how hard someone tries to understand they will never know unless they have a child with special needs. Best wishes to all and God Bless You and your children.
Re:septo optic dysplasiaPosted by Mellisa108 on 11/18/2007 at 4:05 AM
My son Noel was diagnosed with S.O.D when he was 14 months old. All we noticed at first was his turning eye. Now at the age of almost 6, his only issue is his vision and it really only affects one eye. We have done one eye muscle surgery and are currently debating about a second one. He has entered kindergarten with no problem and even played flag football. But they did tell us that his eye with the poor vision will not get any better.
Re:septo optic dysplasiaPosted by jamieb on 4/24/2008 at 4:03 PM
Hello my name is Jamie. I have a 6 wk old daughter that was recently diagnosed with septo optic dysplasia. She dosen't show any signs of it yet however we found out so early because of a sonogram I had done when I was 2 wks pregnant showing that she had dilated ventricles and my doctor recommened that she get a MRI done immediately after she was born which showed that she has unilateral closed lip schizencephaly and septo optic dysplasia. I was wondering if children with septo optic dysplasia have a worse outcome in vision,development and hormone problems than children with optic nerve hypoplasia.
Re:septo optic dysplasiaPosted by jamieb on 4/24/2008 at 4:12 PM
I forgot to leave my email address. Email me at email@example.com if you know if children with septo optic dysplasia have a worse outcome in vision, development, and hormone problems than children with optic nerve hypoplasia. I would really appreciate it.
Re:septo optic dysplasiaPosted by aubreysmama07 on 4/25/2008 at 11:01 PM
My name is Sandie I am 21 years old and I have a 15 month old son with SOD. He was diagnosed at 6 wks old. We think he may be completely blind and also has diabetes insipidus, and a feeding intolerance. When he is under stress or really sick I have to give him hydrocortisone. If there is anyone that wants to talk or has questions please feel free to e-mail me. My e-mail is firstname.lastname@example.org I dont know any other parents that are going through this and would love to talk to others.
Re:septo optic dysplasiaPosted by kathol6pack on 4/15/2009 at 2:44 AM
hello, i have four childern. my youngest and only girl 19months old. just recived diagnois for sod. its been a long road. but now we have great capable doctors who are realy involved in her care. with that underway, it never leaves my mind for a millasecond that the beautiful girl has three awsome big brothers. our daughter,shiloh symtoms are still being decoded. she has great difficulty eating,gaging,and vomiting. she has limited vision as well as nystagmus. hopefully we will have more answers to help regulate her life and condition. this eveining we recived a call from her endocronologist. upon her latest labs it showed that her cortisol was not at normal levels and would require ferther testing. after hearing that shiloh was very ill with infulinza she insisted that she be addmitted to the childerns hospital where quilifed, informed doctors could treat her. now that i know she is being cared for with daddy by her side, i am awh struck with the compex sittuation of three verry worried big brothers (ages 7,5,and 3) about thier sissy. knowing that most likely this is a situation that will arise more than once. how do i their needs and conserns? do i not send them of to school to freit? or is this better so they have normalcy in their own day?i know im tierd and stressed. they must be too. at this point im willing to call it a day and take them for ice cream cones. anyone have advise? i would apreciate it dearly.
Re:septo optic dysplasiaPosted by lbriones112 on 5/7/2009 at 11:51 PM
I have a beautiful 6yr old son named Eric that was diagnosed with SOD, Diabetes Insipidus and Panhypopituitarism at 6 weeks old. I was told he would have little to no eye sight and also has nystagmus. After a few months I knew my son had some vision. He would tend to crawl to the green toys for some strange reason. I had mentioned it to his Dr. She thought it could be a coincidence. So she tested him with different objects and noticed that he always went for the green ones. He has 20/200 vision. He is on GH (injection), Synthroid, Cortef and Desmopressen. He is graduating Kindergarten next month. He is a very intelligent boy and very athletic. He has progressed with help from OT, PT, Speech and visual therapy. I want those parents who feel discourage, scared or sad to know that there is hope for them. I remember the day the Doctors all walked and told me the news. I cried so hard. I didn’t know what to do or what to expect. Why me, why my baby! I came to realize God blessed me with the most beautiful child EVER! He is truly one of kind. He is sweet, funny, smart and has a great heart. I would love to talk to those parents who have shared my experience. Lbriones112@yahoo.com
Re:septo optic dysplasiaPosted by ssigley on 7/29/2009 at 4:08 PM
My 20 yr old daughter was diagnosed with SOD at 6 months of age. She is visually impaired about 20/200-20/400. It has always been the same. She is on growth hormones, DDAVP, sythroid and cortef. Was was in regular class rooms up until about 7th grade and then was put into a special needs class. Regular classes became too much. She is doing very well. She works about 4 different jobs (through school). Which she does need a job coach. She is developmentally delayed and has limited use of her right side. She is a very happy girl/woman! She did go through alot to get to this point. She is now becoming some what indepent. She gets on the bus gets off the bus and into the house (using a key) by herself. Stays at home by herself at times. She does alot for herself. I can't see her ever living on her own, but that doesn't matter. For me an my husband and our 17 yr old (no medical problems), we all just treat her like a normal 20 yr old. (they still fight like sisters do). It has been hard but it help all of us that she takes everything in stride and she is just a very happy girl with tons of friends!!
Re:septo optic dysplasiaPosted by cmattox1 on 10/25/2009 at 3:29 PM
My granddaughter is 7 months old and was just diagnosed with SOD with absence of the pellucidum and schizencephaly. Her next appointment is coming up soon with an endocrinologist. She seems perfectly normal in her actions and looks except her little eyes wander. Her eye doctor does believe she can see but at this time does not know to what degree. We've noticed her hands and feet are cold in the morning time and some times are purple. Does anyone know of this being normal with this disorder? You can reach me at email@example.com. Thank you.
Re:septo optic dysplasiaPosted by willowautumn on 11/9/2009 at 3:52 PM
I am a mother of a 14 year old girl with septo optic dysplasia. My daughter was born 15 weeks premature and also has retinopathy of prematurity (ROP)and so it is hard to know which elements of her eye problems are due to SOD and which to ROP. Although she has never been diagnosed with ASD she definately has some autistic traits, is this common with children with SOD.
Regarding the lady talking about the child with the cold hands and feet, my daughter has always had cold hands but she doesn't seem to notice this
Re:septo optic dysplasiaPosted by newmumdublin on 11/30/2009 at 6:52 PM
Hi i have a now 3 month old baby born with septo optic dysplasia.She was born with a with a minor cleft lip we were lucky her pallet was not effected.The news was awful the day we were told of her condition i have never cried so much in my life. we were told she could be blind and a late developer etc, the tests started coming back and things looked up a little bit,they said her pituitary gland was not missing but it was just smaller then usual so it meant her body was producing hormones just not enough so she is now on hydrocortizone and a growth hormone, but i wonder to myself does she even need the growth as shes now a fine sized baby. She was holding her own head at a month and a half which i was amazed by and now at 3 months today :) she lies on her belly lifts up her head, is so so sturdy on her feed her muscles are so strong she goo's and gas all day long.I am convinced she can see she gets hyper when the bottle is infront of her mouth(i do hold it infront of her mouth to see can she see it)and grabs onto it and holds on to her bottle.She reaches out for her Teddy's on her activity chair to.I'm very impressed with her so far and cant believe how i felt when i heard the news to how i feel now.
I would really like to speak to mothers or fathers with children born with this condition as i need all the advice i can get.
Re:septo optic dysplasiaPosted by lynsey on 12/3/2009 at 6:20 PM
Hi all I am 24 and have a 7 year old son with SOD. he is regiser blind although both myself and his teacher know that Eric has some useful vision. he has GH injection, thyroxine, hydrocortisone and clondine which is surposed to help him to sleep better although it doesn't really work as he mostly gets up at 3 or 4 am and will stay up till 9pm. at moment he is having tests for dieabies as he always wants a drink. he is also autistic and was told that he is on the serve end of SOD however i feel he has come along way as he walks now and using his kane although i sometimes think he just wants something to bang on the floor he also attends a main stream school and has lots of friends he is nearly toilet trained but the need to drink so much means he is having lots more accidents. my main concern with Eric is that he doesn't talk although within the last few weeks he has been saying bye bye and waves which is soooo cool lve when he does this, but i just want him to talk as i really feel this is holding him back, just want to know if any children with SOD learn to talk after they are 7 years as i am really worried now the only hope that he will is that he makes lots of sounds and can say bye bye and am hoping that this is the start of him learing to communcate. would really love anyone who knows about this to get back asap. my email address is firstname.lastname@example.org
Re:septo optic dysplasiaPosted by elsie on 12/5/2009 at 7:39 PM
Hi, I am a 31 year old mother who just had her fourth chid on 9/10/09, she has sod. We don't know what her eye sight is yet but when she was two days old the doctors said she was blind, she is on hydrocortisone she looks great and is grow fine as of now, I don't KNOW what to expect and i would love to speck to other mothers my email is email@example.com
Re:septo optic dysplasiaPosted by taylorsmommy on 2/5/2010 at 5:35 PM
Hi I loved reading all your stories.
My daughter has been diagnosed with sod and diabetes insipidus.
Its all new to me and i dont know wot to expect really.
My daughter recently got diagnosed with infantile spasms but they are under control.
I dont know if taylor is 100% blind or if she has some vision but she definatley doesnt focus and her eyes are all over the place looks like shes following a bee sometimes.
I love my daughter no matter what and she smles and laughs just like any baby withour these problems.
She recently started having poor muscle tone but im unsure if its to do with the seizures or this because before the seizures she was pretty sturdy.
I would love to here fromm people. T.firstname.lastname@example.org
Re:septo optic dysplasiaPosted by MAPLELEAF27 on 3/27/2010 at 12:27 AM
HIi everyone. I have a 10 year old son named Mason diagnosed at 3 months with sod and most recently diagnosed with water insipidus and growth hormone deficiency. I would love to hear from anyone that has older children and their stories about teenage years and adulthood etc. Thanks for all of your stories, sometime you feel like you are fighting a lonely battle for your child. Best wishes to all :)
Re:septo optic dysplasiaPosted by shannontaylor on 5/17/2010 at 2:10 PM
Hi. I was just reading all of the responses regarding sod. My 20 month old granddaughter was born at 29 weeks and has the absences of the pelidiclum (sp?) and septo optic dysplasia. We were told she would likely have vision problems and could also have problems with growth, body temperature, seizures, etc. She sees a neurologist, endochronologist, optomologist, and pediatrician all at Univ. of Illinois at Chicago--one of the best for vision issues. Although we don't know yet exactly what she can and cannot see, we do know that she sees very well. She walks all over the place-doesn't bump into things, walks around things she sees on the floor, goes over to grab her favorite toy and even pushes the button on it that creates music from the toy. Her optomologist saw her last week and my daughter and I told her we didn't think Sharay had vision issues-explaining everything Sharay can do. The doctor explained to us that since Sharay has had vision problems since birth she has likely made adjustments on her own and probably can see shadows-but insists that she will fall somewhere on the very large spectrum of blindness. That is so difficult for us to believe because she loves watching tv, points at an object and says its name--she just doesn't seem to have a vision problem. I guess we will have to wait and see until she can tell us what she sees. I have great hope. Sharay has had absolutely no other issues related to the absence of the pelidicilum--no growth problems, no body temp issues, no cortisol problems and no seizures. When she was born, she weighed just 2 lbs. Her prognosis didn't seem well--but I believe in miracles-as a matter of fact I've seen quite a few and I count this as a miracle as well. They have informed us that whatever vision she does have will not get worse or better over time which is good news. Thanks for sharing your stories.
Re:septo optic dysplasiaPosted by tina87 on 5/16/2011 at 12:04 PM
hi my son is 10 weeks old and was diagnosed with schizencephaly and septo optic dysplasia he has had great head control for the past month has quite a stong neck on him and holds it up very well like andy normol baby,i was told wityh this type of condition that he might not have any muscle tone ,his arms and legs so far have been moving equally which gives me hope.he is on hydrocontisone 3 times daily ,and levothyroxine one in morning , and have to keep taking his blood sugars which have been fine, not sure about how much he can see yet his eyes tend to wonder alot and doesnt seem to focus on me or his sister .trying to find someone that has the same diagnosis and try find more about this condition. either way he is absalutly georgeous and wouldnt change him for the world. email@example.com
Re:septo optic dysplasiaPosted by Yasmenm on 7/1/2011 at 2:44 PM
My daughter is 3 1/2 years old and was born with congenital estropia (crossing/drifting of the eyes). She had a surgery at the age of 1. Lately one of her eyes has been drifting. The optimologest thought it was forming into a lazy eye therefore wanted us to use the patching method. That being said we patched her one eye only to discover she has no vison in the other. The optimologest then ordered a brain MRI. The mri found that she has an absence of the septum pellucidum. She was then Diagnosed with Septo optic dysplasia and has a decreased size of the anterior lobe of the pituitary gland. I am very scard and nervous because I've been reading so much of this disease and have so many questions. It talks a lot about brain development and growth development. She is so smart and her growth development is normal so far for her age. Can this change??? Can the brain stop developing properly? Can she suddenly lose vision in the other eye too??? Can she stop growing??? The optimologest wants her to see an endocinologist but my appointment is 2 weeks away. Who can help me find answers to all my questions?
Re:septo optic dysplasiaPosted by Yasmenm on 7/1/2011 at 2:45 PM
My daughter is 3 1/2 years old and was born with congenital estropia (crossing/drifting of the eyes). She had a surgery at the age of 1. Lately one of her eyes has been drifting. The optimologest thought it was forming into a lazy eye therefore wanted us to use the patching method. That being said we patched her one eye only to discover she has no vison in the other. The optimologest then ordered a brain MRI. The mri found that she has an absence of the septum pellucidum. She was then Diagnosed with Septo optic dysplasia and has a decreased size of the anterior lobe of the pituitary gland. I am very scard and nervous because I've been reading so much of this disease and have so many questions. It talks a lot about brain development and growth development. She is so smart and her growth development is normal so far for her age. Can this change??? Can the brain stop developing properly? Can she suddenly lose vision in the other eye too??? Can she stop growing??? The optimologest wants her to see an endocinologist but my appointment is 2 weeks away. Who can help me find answers to all my questions? Please someone email at firstname.lastname@example.org
Re:septo optic dysplasiaPosted by calgrandma on 10/1/2011 at 2:36 PM
Hello, I am a grandma of a completely blind child with SOD. He was diagnosed at 4 months and just turned 8 years old. In California, he had early assistance, with someone coming to the home from 18 months on to help with motor skill development. At 3 years he went into a classroom setting with all visually impaired children. At 6 years he went into regular elementary school but has been in the same special needs class for 3 years. He is the only blind child in the school and is in a special class with autistic kids. With this syndrome, the medical issues and developmental issues can vary widely. My grandson is miraculously free so far of medical issues but has had substantial developmental issues. He didn't start talking until he was 4 (but hasn't stopped since). It has been extremely difficult for him to learn to make sounds correctly and there is still work to be done. He lacks agility and dexterity such that he cannot do many things like holding a pen/pencil correctly, pedal any kind of bike/toy, play games requiring spatial skills, no puzzles, etc. He is slightly socially off (talks loud, can be repetitive, etc.). Those are the difficulties. He has improved steadily through the years. He is enthusiastic, social with family, can play guessing games, board games (with lots of help), is learning to use a Braille typewriter. We have purchased him "sound" toys all his life, and I think this has been a lifesaver to him. Without any visual simulation, blind children get very bored, and very frustrated. For years now, he carries a small digital recorder -- one that is simple to operate blind. He records EVERYTHING, everywhere he does. This recorder is like "his sight". It comforts him. It entertains him. It helps him learn because he can listen over and over. However, we can't let him take it to school because the other kids hear it playing back. So, lots of sound toys (V-Tech, NatGeo, educational etc.) can be learning aids and entertaining. A lot of them require reading, and those are not helpful, so try them out to see. All music toys are good. A Keyboard/synthesizer is good (and there are inexpensive ones). An mp3 player. Music music music. Our life is different because of him, but he sure has made our family closer, patient, and defenders of the disabled. I wll keep checking this forum. Oh, by the way, Melatonin was a lifesaver. He could not sleep on any kind of schedule for years. This became a problem when he started school. Melatonin was the answer, and we found it ourselves. Now I see it widely recommended. He doesn't have to use it EVERY night now but he used to have to, for a few years. Much blessing and luck to you.
Re:septo optic dysplasiaPosted by novaleighsmommy on 10/26/2011 at 7:34 PM
hello all, my 10 week old daughter was recently diagnosed with SOD. We only found out a couple weeks ago, but it has already been one of the hardest things I have had to tackle in my life. I came here in hopes that a parent is in a simliar situation and can give me some positive outlook. None of my friends and family can fully grasp what I am going through, and I appreciate their words of encouragement to stay positive, but none of them have had anything similar to this happen to them. We found out nova had sod when her thyroid levels came back abnormal. She then got an mri at 8 weeks and the next day the endocronologist called me with the news that changed my life, my perfect baby girl had an abnormal pituitary gland, and a cleft in the right side of her brain. The nerves connecting from her brain to her eyes were also quite small. As of now, she moves both sides of her body equally. Can grab with both hands and move both feet. Has good neck control, (especially for a baby who was born 1 month early) and has focused on my face for five seconds at a time, a few times, which I'm unsure if it was a coincidence or not. But whenever her eyes are open, 95 percent of the time they wander like they are watching a bug or a butterfly. They jerk back and fourth as well. Her opthamologist was not able to tell me if she is blind or not, just that her pupils don't dialate like he would like them to, and the nerve endings are as a matter of fact, small. I'm scared and will love her regardless, but I am only 18 and this is my first child. I feel as if instead of being a happy go lucky mom that I have weight on my shoulders that won't be lifted til I know how her vision and motor skills will be effected in the long term. I have nobody to give me realistic advice, and I think about her future from sun up to sun down. She is already taking hydrocortisol, and levothyroxine, and I'm worried she will have growth issues because she is over 2 months old, still in newborn clothes and in the 10th percentile. I will do what it takes to be a good mother, but all of this is taking it's toll on me. My email is email@example.com if any parents could please give me advice and stories on how their children grew up, it would mean the world to me.
Re:septo optic dysplasiaPosted by BAYYINAH14 on 11/6/2011 at 7:15 PM
Hi my name is Monique,im 22 years old.5 years ago i had a beautiful daughter name Maniya..When she was born i had concerns about her vision.So i took her to the eye docter.There the diagnosed her with sod.she had visual acuity of20/400 at 5 inches .At that time i didnt know what to do i was scared for her.We went to so many docters ,and they told us the same thing.They diagnosed her with have a sis(tumor)on her brain ..It was hard. I would cry all the time and wanted to just give up.I didnt think she would see anything, till she got older..One day we were in the house and i was asking her ? and i said can u see mommy? And she said yes. I said where is my nose? and she touched it ..I started to cry.There i knew i had to stop treating her like a disabled child.I was so protective of her ..I didnt want her to play with child or anything .I was just so scared .After that, I let my guard down,she went crazy (in a good way.lol).She was walking by herself ,running coloring even identifying thingS..SHE IS NOW 5 AND GOES TO A PUBLIC SCHOOL, HAVES ALOT OF FRIENDS AND VERY INDEPENDENT.I DIDNT THINK SHE WOULD EVERY SEE NOTHING.BUT SHE SHOWED ME OTHER WISE...SHEs VErY HELPFUL, HAS A GOOD SENSE OF HUMOR AND TALKS ALOT.WILL TALK YOU TO SLEEP..THE POINT IM GETTING AT IS ,I KNOW IT HARD AND it gonna be hard. I KNOW PEOPLE ARE SCARED BUT DONT LET THAT DISABILITY SCARE YOU TO THE POINT YOU JUST GIVE UP.LIKE I DID..THESE CHILD NEED US TO BE STRONG FOR THEM.AND TO LET THEM FEEL LIKE THERE NOTHING WRONG WITH THEM..I STILL haVE MY DAYS WHEN I ASK WHY DID IT HAPPEN?what was wrong with me?! AND CRY WHEN I LOOK AT HER.BUT WE ALL COULDNT ASK FOR BETTER CHILDREN THERE ONE OF A KIND AND WE WOULDNT TRADE THEM FOR THE WORLD.if there anyone out there who want s to talk and need extra support you can email me at firstname.lastname@example.org..i would be happy to talk to you..
Re:septo optic dysplasiaPosted by csorellekillian on 11/10/2011 at 2:21 PM
Hello, I just want to add my story and offer some support to those who are going through similar issues. We did not have much support when my son was born and it was very scary at the time. I just want to offer my knowledge and support since it is overwhelming for parents going through these overwhelming issues.
Re:septo optic dysplasiaPosted by csorellekillian on 11/10/2011 at 3:07 PM
don't know where my posts are going but here is my email email@example.com if you need any support about these issues
Re:septo optic dysplasiaPosted by mommy1 on 12/4/2011 at 5:38 PM
HI ! MY NAME IS JUSTINE I LIVE IN ENGLAND , AND HAVE A 8MONTH OLD WITH MULTIPLE PITUITARY HORMONE DEFICIENCY AND S.O.D WITH NO GROWTH HORMONE AT ALL ! MY DAUGHTER IS DELAYED IN HER DEVELOPMENT , STILL CANT ROLL OR HOLD HER HEAD TERRIBLY WELL , AND DEF CANT SIT ALONE , SHES ON THYROXINE AND HYDROCORTISONE AND IS ABOUT TO START HER GROWTH HORMONE . DONT KNOW HOW MUCH SIGHT SHE HAS BUT SHE DOES FOLLOW YOU AND CAN NOTICE TOYS ! THE HARDEST THING FOR ME IS THAT SHE LOOKS TOTALLY NORMAL , I HAVE GONE OVER N OVER IT IN MY HEAD AND STILL CANT BELIEVE IT HAPPEN TO HER ! BUT I COUNT MY BLESSINGS AND THANK GOD EVERY DAY THAT SHE IS WITH ME ! IM BLESSED TO HAVE HER . . IN ENGLAND HER COND IS VERY RARE BUT IT SEEMS TO BE MORE KNOWN IN THE US ! STAY STRONG U GUYS AND CHIN UP ! . XX
Re:septo optic dysplasiaPosted by Sarahann90 on 1/18/2012 at 1:21 AM
Hi my name is Sarah, I'm 21 and I have S.O.D.
Through my life I have delt with it and with s.o.d. You and you're child will have ups and downs... Be in the hospital a bunch and bond even more. My mom became my best friend, she was there through it all and at the same time took care of my brother and sister. I now live on my own in an apartment with two dogs and a part time job. I graduated high-school with a c average wich was the hardest thing for me to over come. I have trained dogs since I was 8, ride and train horses.. All of this when the doctors told me and my family I can't. They said I would be fully blind by age 3.. That I couldn't lead a normal life, I am :) my family pushed me to the limit so I could succeed.. Had hope when no one else did.. Where there's bad there is always good. Have hope for you're kid seek help when needed and above all, love them no matter what! Fell free to email me or reply with any questions.. Love Sarah Ann
Re:septo optic dysplasiaPosted by Assika126 on 1/30/2012 at 2:10 PM
Hi All, just wanted to let you know about our story.
My husband has SOD, he was diagnosed back in 1979 when he was an infant. He had no vision at all as a baby, and was completely blind - but at 9 months he regained vision and now although legally blind his vision is pretty good. His eyes occasionally jump around but he is a very visual person and an artist. He had a double-major in college in classical composition and psychology and did very welll - he worked to pay his own way through college and did not use any aids.
He is self-employed as a musician and composer and is highly intelligent. He was a determined child, always doing puzzles and looking at maps, and learned letters very early, so he learned to read visually. His mom, an English major, had him reading biographies and other great books early and started his music education young.
He did not get diagnosed with endocrine deficiencies until age 35 since when he was a child they neglected to test his blood. He has complete growth hormone deficiency although he is near-normal height; the doctors say he must have had some growth hormone but it stopped at some point. He just got diagnosed with cortisol deficiency as well.
He has never been a regular sleeper and frequently had trouble with sleeping schedules especially in the winter. Currently he is on an opposite schedule - sleeping during the day and awake at night - which is very uncomfortable for him. However, we are working on solutions and it never lasts more than a few months, and then he can go back to a normal schedule. As a child he always got up in the night and played records. ;)
So I want you to know that these children grow up to be marvelous people, that sometimes they regain sight, and that they can often surpass anyone's expectations. Fight for their right to have access to all the tools they need, but also push for them to spend time with other children both normal and special. Montessori school was particularly helpful for PJ as his class contained both average children and those with profound disabilities, and his class learned to help each other.
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