We had an MRI of her head and optics, so eyes and optic nerve area to check all was ok, which it was. Then we had a VEP (visual evoke potential) test which measures the electrical impulses between eyes and brain. it was the VEP that diagnoses albinism for us.
I did a bit of a research regarding VEP and it said they will do it for babies at 6 month or earlier , was that the same for you ?
Also forgot to mention that regarding driving I couldn't agree more with you , that also would be the list of my worries
all I care about if for him to live a normal life and go to normal school
I watched a video on YouTube about a girl who had her eyes fixed by surgery in California . I looked up the dr. He actually exists so if my son has nystagmus I will contact him , let me know if you are interested ? I will send you the link
I promised myself to post an update about my DS for anyone who may look at this in the future as I was desperate to read updates on babies with VDM.
Little jayden is 3.5 months old , around 3 months he started following black and white patterns , the progress has been slow but he randomly follows other objects, tissue box or coffee mug as I was drinking it and putting it on the table. He doesn't make much eye contact but has started to look at my face for few seconds with no expression. He is very smilly boy but not at me yet. He is trying to grab toys hanging from his play math to put it in his mouth . He can lift up his head and hold up when on tommy and tries to roll back when lying flat to tommy , he also loves to be in a stand up position and can carry his weight on his leg. He has an inconsistent rapid eye movement , sometimes there and some times not , which i was worried might be nystagmus but it was dismissed. There is still lots to improve on and progress is slow but hopefully will get there.
Hi, I still get updates on this...when I get round to checking my mails!
So sorry to here you are going thru this and with twin boy it must be so tough anyway. I can't offer a great deal of advice or help as our situation was quite different but I totally sympathise with the worry. I suspected our LG couldn't see from day 1 but no one listened to me til she was about 6 weeks. We had some tests that said her eye structure was fine and it was DVM after reading up on this I panicked and was completely convinced it was something much worse. I was so sad, I used to watch friend's baby's looking up at them and smiling and feel so upset and jealous. Her eyes looked what I can only describe as dull, empty and now they are bright and clear. Sounds odd I know but everyone who sees pics says same thing. Anyway, she is 8 months now and seemingly fine. Her eyesight is perfect. It used to hurt me so much that she couldn't look at me, I felt like we didn't have a relationship and when I did get to sleep, when I woke up my first thought was always 'my poor baby is blind'. it was such a tough time. we were lucky. She began to see from about 9 weeks i would say and fully seeing by 16 weeks. black and white came first. Anyway, I know our situations are so different but having been there, i didn't want to ignore your post. Sending hugs and hopexxxxx
ps my hair only stopped falling out post bub about a month ago so fell out fr about 4 months. It never really got any thinner but i am now seeing loads of new hair growing. i have like a whole new short fringe under my normal one!
its so ni e to hear from you , thank you for your post
it is a very though time for us, the other twin st his eye contact t at around the 4 weeks mark and I kept worrying that his brother is not making the same progress but no one listened to me like you !!!
So we are just hopping , every morning I wake up hoping that today is the day he would look into my eyes but nothing yet. My husband is very positive and he thinks that Jayden will be just fiNe but you know being a mother is very though .
anyhow I'm just waiting and praying and I will post once more progress is made and thanks for the hair info , Its so cray this hairloss ... So much is falling
I forgot to ask, do you remember at what point she started looking at your face anc recognising you ? I cant wait for the day he look at my eyes and smile , that would be the happiest day of my life .
I have to admit we were not so positive, we could not see how her sight would just suddenly happen and so convinced ourselves other stuff was wrong and spent far too long on google. I kept reading of so many people told their child had DVM and then it turned out they had something else, or they never came back to update, thats why I did here!!!
I kept a diary of her progress, I actually started it at first as evidence because I thought we would have to fight for further testing etc but just going to look back now.....
ok, around 8 weeks I noticed her watching a black and white changing bag and when I moved it she followed. We printed loads of black and white pics and an app and worked on them millions of times a day. Some days were better than others.
On her two month birthday I put that I felt like she was trying to look at my face but didn't know if was wishful thinking.
She first smiled at around 9 weeks but just at objects, around 10 weeks she was very occasionally smiling at us but we felt it was in response to our voices. At 10 wks tho, she started to track some coloured toys, I was so excited! At 12 weeks old she seemed to be tracking most objects, even random things like a mug or nappy. At 13 weeks I felt her sight had just clicked suddenly. She was looking at me and hubby all the time and smiling without us having to do anything. We kept poking our tongue out and being silent to test her! At 16weeks we went to the eye clinic and they confirmed what we already knew; her sight was now fully in. It was amazing really, how quickly it just came. From there it was like it never happened really and she became so interested in the world; all people, faces, trees, everything. It is funny, you think once it's over, you'll never moan or worry again but actually we were sooo happy about it but quickly forgot and I started worrying about the next thing!! Even now I have to stop and remind myself how lucky we are, like when she is smiling and laughing in the bath and playing with us and her toys, I hate thinking back to how she used to lay in the bath seemingly staring at the ceiling with no communication between us. But it doesn't stop us moaning about how bad a sleeper she is!!!
Sorry hope I haven't rambled on too much. Hope it has helped. Wishing you the best xxxx
No rambling at all I love hearing stories like this, I wish we could meet I love to see your little gorgeous girl.
Well I hope same thing to happen to my little Jayden , he also started on fixing and tracking black and white patterns but now he is looking and tracking some toys and some times random objects. He is a very happy boy and his smiles are with sound more like a giggle which is advance for his age. we have blinds and when light shines through the window, it looks like stripy pattern , he is obsest with them. i do also feel like he is trying to look at my face for few seconds but for some reason he quickly turns away, did you have that too ?
I take videos of him and some days I feel like he is progressing and some days I feel really down thinking he has other conditions. We know for a fact that one eye can't see much due to physical structure but the othe eye should be fine. To be honest I was so devastated when we were told about the structure of the bad eye but the few trips we made to the children hospital made me realise we are lucky it's not worse, his eye from outside doesn't look any different and if he doesn't want to tell anyone that the eye doesn't see no one will know . He dr. Who Is professor at the children hospital eye clinic has assured us many times that he can lead a normal life and do everything with one good eye. I just hope that the good eye can see and its only dvm.
when I was tracking his developmental milestone I read that when bubs look at parents smiling they get so relaxed and happy and it aches my heart that he doesn't see at but I truly hope that his sight improves like your DD.
Otherwise he seems to be developing well and even a bit ahead of where he should be, he is mastering to roll already , I leave him for a second and he is face down on the carpet.
Both my boys are very good sleepers , they have been from beginning specially at night , they sleep between 8-9 pm and wake up for a feed some where between 3-5 am and they go back to sleep for a few more hours.
Was your DD full term ? My boys were 37.5 weeks although it's consisred full term , dr. Said we should take into consideration the 2.5 weeks they came early for developmental milestones.
i know I'm reapiting myself again but like you said she days I feel like he has other conditions but reading that your DD' s progress does sound like his so maybe there is hope . by the way I do also spend lots of time son Google, then comes the panic and cry for hours which drives DH insane but I'm so glad that I found this and thank you for replying Xxx
thank you again for replying
Good luck, hope your progress continues.
As far as the face thing goes, no not really but every bub is different. I have to say, I think that in the earlier days when I thought she was looking at me, I think it was actually just wishful thinking or looking at me as she could hear and follow my voice. I think when she was actually looking at me and hubby eventually, we just knew she was looking at us and it felt different and then of course she just wanted to analyse and grab our faces!! Now she never leaves them alone! Took her a little longer to be really interested in strangers and their faces tho x
i was feeling really down so I thought I write here.
i guess for anyone who is or was on this forum , would very well unferstand those days that we are convinced it's not dvm!! My little one for the past 2 days has no shown any sign of interest in fixing or following ... Some times I wonder if the time I think he dies it's just me wishfully thinking 😕 Feeling very hopeless
Nothing to make it better but been there and it really sucks
Feel for you, know you're not the only one who is/has been where you are but it can feel like such a lonely place xxxx
dose link with dvm and autism ???
I don't think there is a link between the 2 , to be honest I thought of autism initially as there was a time the he would arch his back and just didn't want t be held but he grew out of that phase. He now very much enjoys to be held and loves when I kiss him head to toe and even laughs loud which I think is a bit advanced for his age. He is 15 weeks today. So we did a hearing test yesterday and he was fine ( this was just to double check there is no problem there ) and today in the afternoon we have an appointment with the optomolgyst to check his fix and follow. this morning after he was fed I held couple of my stripy shirts Infront of him and he followed , then some black and white patterns , some coloured simly faces ano some toys he seemed interested in all but I guess the days he doesn't want to look makes me wonder if is just my wishful thoughts and nothing else .we have downloght at home and he looks at induvidual lights and tries to all to them , really cute
anyhow , once he is checked today I will post an update I really hope that I'm right and he is fixing and following . im on a few forums and it appears that with DVM, when sight begins from black and white patterns it takes 6-8 weeks for it to fully develop , for DS it started at 12 weeks so I'm really hoping praying that in the next few weeks he is all good and this will become a thing of a past !!!
but u you are right it does feel really lonly, we only told mine and DH's parents but then we regretted it . My sister in law is studying optometry and she thinks she is a dr already so every time they are here she makes a comment about his eyes or mum holds him up in an attempt to get an eye contact or hold a toy I front of him to follow and it aches my heart , I just wa t to shout that I know he is behind , u don't need to remind me ....
any how, it's is a very hard time but I hope there is a light at the end of the tunle that's my only hope .
Hello everyone, just a quick update on the optomology appointment yesterday, dr. Confirmed that he can see, he followed light and a coloured smiley face of a sponge lol . So it's really just a waiting game from here. She also confirmed that the eye movement ( now and then ) is him trying to focus and it's not nystagmus , he also doesn't have LCA so technically he should just improve to gain full vision. I'm happy but I guess I still cant stop worrying till he can look me in the eye and smile.
Hi Vahid , how is your daughter ? Has she pretty greased with the eye contact ?
I'm so sorry this auto correction business can be very frustrating 😡
I meant has she progressed with the eye contact ?
HI AMFM . my daughter had some brain damage by aspiration mecunium bot not any sympton of cerebral palsy . MRI test /CT scan / EEG / Cromosal test / blood Metabolical test all fine ! but she has 10 month and not recognise face and make eye contact (visual agnosia ) !!! she recognise some toys !!! and progress is very slow ! she smile squel and cooing ! i am so worried for autism !!!
the brain damage, does she have other problems ? Head control? Does she sit ? Can she hold her weight on her legs ? I have read that some babies will make eye contact when they can well support their head. A fan of mine's ba y didn't make eye contact till she was 9 or 10 months , she is now 22 month and no problems
you mentioned she was diagnosed with DVM , when did she start following and tracking objects ?
Autism these days can be diagnosed early on , have you spoken to her nurse or dr ?
no other problem . head control and hold her weight on her legs is very good . she fix and folllow things at 4 month .
yes she is sitting without support . rol up