I have a 3 month 1 week little boy. Who I think has DVM.

We are at the early stages of all the tests. So far his general development is fine, his pupils react well and his retina and optic nerve look fine.

More tests next week. He normally looks to the side and he is certainly way behind schedule with his vision. The good thing is that he can follow black and white toys intermittently. I hope this means that everything will be all right in the end.

hello finn3 everything you say sounds like its good and the fact that he can already follow black and white toys sounds briliant, my lo couldn't follow anything until about a month ago(now 6months) and even now i dont know if he really is or its shadows/sense/sound or something. have the specialists given any idea as to what they think it is? we were told quite early on that they think its dvm and i know the fact he has his optic nerves intact means that there is hope of him seeing something. was he premature, it's meant to be quite common in prem babies (my lo was full term) i am sure what ever the outcome of the tests your little boy will be fine, good luck and please let us know how you get on, your welcome to chat or if you think i could answer any questions i'm happy to try. good luck and thinking of you both

Hi,
Some bad news is that we have the preliminary results of the ERG. One eye's ERG response was absent and the other was considered normal. Although this doesn't mean he can see (complicated even for me, i know). They think it is Lebers Congenital Amaurosis, which means he is blind. There's alot of research and trials going on at the moment on the condition so i'm hopeful for that but i'm also trying to be realistic and concentrate on making life as normal and fullfilling for Leo as possible.
Hope all is well with you waiting4baby
Good luck Finn, I'm sure all will be fine and for all of us whatever happens we will have confidence in our parenting and love for our gorgeous babies.

oh i am so sorry, you must be devistated, is there no way it could be he is just blind in one eye? i'm sorry i dont know much about lebers as it wasnt something ive felt i needed to research yet so i'm not entirely sure what it means but i will try and get to understand it now. you do have a gorgeous baby though and you sound like youre a mum with your head screwed on and so i am sure whatever the final outcome your boy will turn out to be a well loved, confident and happy little boy. Although it may turn out our boys are on different paths, if you would like, i would love to keep in touch with you and we can give each other strength, understanding and maybe even ideas for things we've found that they enjoy, up to you. we are still waiting on news for his next scan but i have been told it should be before the 7thjuly which is when we next see the orthoptics so hopefully wont be much longer now and with any luck it will work this time. although i am in 2 minds about whether we try sedation again or use general aneasthetic. i really hope that you are doing ok and getting any support you need out there, thinking of you all and good luck.

Thanks,i think i've had long enough to prepare myself and although i was hoping for better news, i am able to deal with the outcome. We're going to a opthomologist who has more pediatric experience on monday for a 2nd opinion and am planning a trip to the UK to go to Moorfields. Our opth says she could be wrong and asked us to do the tests with another doc to be sure. About your MRI, Leo has now had a general and been sedated, and i would definately choose sedation if i had to do it again. Although when Leo was sedated it was only a light dose and he ate just before. As you saif the worst bit is having to starve them. Let me know how it all goes, and i would love to stay in touch.

Hi ladies hope you don't mind me butting in :)

Hi leo's mummy, just wanted to say I'm sorry you have not had the results you may have been expecting and I'm glad that they have said they want you to get a second opinion. That's postive news :)

Also try not to worry ((easier said thean done I know lol)) Jessica/katie & alex plus their daddy have it with nystagmus ((we didn't know at first due to nystagmus)) also retinal degenerative disease known as retinitis pigmentosa & astigmatism ((plus more)) and there all fantastic, sensitive to light and although we mainly I lol have had some teething problems such as removing doors in the house as they walk into them putting adaptions on for the stairs and bathroom.
Were getting there as a family and everything has just worked if that makes any sense?
Andy has also always worked since leaving school which I must admit I was worried about for our children not having a 'full' life but knowing him I know they can do anything they want to do and so can leo and zachariah :)

I know I'm banging on with myself but try not to worry till your 2nd opinion and also just remember it's not the end of the world ((I felt like it was after having Jessica)) he's lovely and gorgeous and you will get through it I sometimes forget they even have any problems have the time as they are soo independant.
Hope your well and take care ladies x

Thanks Joanne for the support and advice. Luckily i feel i've had enough time to deal and its made easier to deal with because i just love him so much. Its hard and i think before something like this you don't believe you would be able to handle it, but you just do! Because you have no choice but make the best out of it.
Thanks again, good luck with your lot! They sound wonderfull.
x

like joanne said i'm glad they're getting you to have a 2nd opinion although i am sorry it means dragging it out a little longer. thanks for the opinion on sedation and general aen. i think i'll try and go for another sedation i'm just worried if he wakes up again that means we'll have to go through it for a 3rd time and still none the wiser, is it the side effects that make it so bad?.
good luck with everything and i hope youre able to get the 2nd opinion done sooner rather than later, i've read up on it a bit and it does say some children can see slightly but sort of counting fingers or light and its not something that gets worse just stays the same dont know if thats right but if one of leos eyes read normal you may find there is some sort of vision. keeping my fingers crossed for you all, and you're right love makes anything possible

Hi. My son is 4 1/2 months. At around 6 weeks we noticed that he doesn't follow objects with his eyes and that we couldn't get eye contact. Investigation has now started; we've been twice to the eye doctor and my sons eyes seem normal so far. Next step is to do ERG, in three weeks. I so much hope that this is DVM and that my son all of a sudden will start seeing. As you all know it is hard not knowing whats wrong, and having to wait and wait.

hi cjk, i'm sorry you are another one just waiting to discover the outcome of your little boy. its good that you are well under way with the tests, i have to say i am getting increasingly worried that my son at 6months is still so early on in the testing and not even had an erg suggested yet we have been seen since he was 8weeks! it is extremely hard to have all this waiting and impossible to get your head around when you dont really know what you are having to deal with, but if i say so myself i think we are all doing brilliantly and if your boy is anything like mine i bet he is quite a character even with this small set back. i really hope things are going well for you and as i've said to the others if you want to chat or just want someone to listen, feel free, thinking of you both and good luck

Leo's mum

So sorry to hear your news. But I think your attitude is the right one. All you can do is love them and be the best parent you can. You'll get plenty back.

Your child will grow up in an era of techological advancement that will at the minimum make their life easier and at best may provide a cure. Moorfields is the place to go they are doing amazing things.

I work in radio and some of my collegues have severe vision problems but it hasn't stopped them reaching the top of their professions and travelling the world.

We believe that Finn has at least some vision and there are no signs of nystagmus. But sometimes there is nothing going on and you wonder if you are fooling yourself. Whatever happens it will be OK in the end.

Richard

i am feeling so frustrated zachariahs original scan was 20/5 and it didnt work, his next specialist appt is 7/7 and i've had to pester them for the last few weeks to get a new mri date, theyve said 31/7 which is ridiculous, it means he will be almost 8 months before they start doing any tests and to top it all the specialist appt will be put back so its after the scan. i cant believe how uncaring the medical team are being, i've already had hope dangled in front of me for the last 6mths i cant cope with another 2 i just want answers now! aaaarrrggh, sorry just needed to get that off my chest.
hows it going with everyone else? leos mummy have you been given any news on your trip to moorfields yet?

We saw a Moorfields specialist this week. He confirmed that Finn can follow toys. He is longsighted at the moment. They think it is DVM and want us to come back in 3 months. It is quite encouraging. But it is basically still wait and see if he improves. I will try and continue to post what happens to Finn in the next few months if only for people who google DVM in the future.

Wow Finn thats great news, you must be so relieved.
No news really, 2nd opinion said all that we already knew really. It seems this condition is so rare that doctors here don't know anything about it. My paed had never even heard of it! Even though its apparently the most common cause of congenital blindness...?? The opth is contacting moorfields for us and we are planning genetic testing so we can confirm the diagnosis and find out which strain he has. Hopefully he has the one that they are doing trials on at the moment.
Waiting4baby i cant belive how you've been messed about, its disgusting how its being handled. You really should complain or write to someone else in the know.
Good luck to you all

Hi. Thinking of you all. Let's try to keep our hopes up. I'm so glad I've found this forum. As you all know, DVM, Leber's and whatever else seem very rare and almost nobody seem to have heard about it. I live in Sweden by the way.

Our son is now almost 5 months. During his first 2 months he looked to the side intensely, either to his right or to his left, and this made me uncomfortable. I wanted him to "snap out of it". After a few months he started moving his eyes more normally, looking around although without seeing. But every now and then he get's cross eyed or squints and one of the eyes wander away. And then, all of a sudden, the eyes move in sync again.

Motorically my son seems to keep up well; he can roll over from his back to his stomach and he grasps toys and tries to pull himself up. He smiles when he notices that we are around, but he doesnt turn his head in our direction. He makes happy noises, "talks" and he seems content, not frustrated and uncomfortable.

CJK, i have to say your little one sounds EXACTLY the same as Leo. When was he born? Leo was born 21st January. All the things you say he does, so does Leo and this if anything just prooves that whatever the outcome, they will be OK!

Leo's Mummy - my son was born on January 22, two weeks before due date. Was Leo full-term?

Wow, so close, Leo was born at 23:43 so they nearly share a bday. He was a week late!

Hi all. Yesterday we went to see a new eye doctor who seemed to be specialized in DVM. He held up a white cardboard plate with a happy face in black, in front of my son's eyes, and said that he seemed to follow this object with his eyes, although slowly.

After that they did something I think is called Visual Evoked Response (VER, also called a Visual Evoked Potential, VEP, to ensure that the visual pathways were working. They put electrodes on the back of my son's head and measured the electrical signals that went from the eye to the brain and back. The doctor said that my son seems to have the vision of a 2 month old infant, and that we should come back in a month again to see if his vision has improved by then. I don't know yet if we should do other tests as well, the doctor said he would look into this and let us know whether he thinks this would be necessary. Otherwise we just have to wait and wait. As usual. But now we really got our hopes up :-)

The doctor said that there are three categories of children with DVM: children with just DVM, children with DVM and other vision problems, children with DVM and other functional disabilities. "I think your son has just DVM. I have been wrong before but usually I am right about this".

Good good news. Now we can hope for the best.

Im really really hapy for you, sounds very positive! Keep us updated :-)