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DVM Delayed visual maturation: any helpful advice?

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  • i know its like that with us too, some days i would really think he was looking and other days its just like hes not interested, i wonder if it's to do with how tired they are or colour or sound, a brighter day, or maybe it just takes a while for them to really take in what they are meant to be doing...its such a shame that the professionals cant just take one look and just know what it is, but with any luck it will be that our los are beginning to see and its not sound and shadows etc. hope leo's passport comes through soon and you can start getting into the british system for more information. thinking of you all
  • Thanks, you too.
    Where do you live, have you been to Moorfields yet?
    What is your gut feeling about all this with Zachariah? Can he follow light at all? Have you heard any more about having an ERG, or do you get the impression they dont feel that necassary? Hope you're all well.
  • we're actually with university hospital of wales so no moorfields for us i dont think. he does seem to follow light sometimes but if i close my eyes and wave a hand in front of it i see shadow myself so maybe it's just that?!
    my gut feeling about zachariah is i really dont know, some days i think theres no way he can see and i think he must be blind, but seeing as there is nothing wrong with his eyes when opth looked into them i can only assume some form of brain damage, (we did actually have a traumatic birth and he got stuck so i wonder if thats linked, he was also resuccitated so lack of oxygen to brain).... other days i think he's definitely starting to look but i am scared to get my hopes up so worry it may just be sound or 6th sense or whatever you want to call it.

    i'm just really hoping that when we see the opth next time around they are going to have an eureka moment!
    my oh keeps saying he just wants him to be ok and i keep saying he is ok and always will be it just happens he's been unfortunate with his eyes and with any luck it can be fixed. he is an incredibly happy boy to be honest but blooming confusing to work out!
    have you got any gut feeling then or are you as stumped as us?
    thinking of you all hope we all get some good news soon
  • I feel very similar to you, its up and down. It all just seems to have come from nowhere, and i keep feeling like im going to wake up. I keep hopeful but at the end of the day you cant hide from the fact that your child just cant see. Today my mumthought he was staring at her top, which was black and white patterns but which just say 'who knows' because we dont want to get our hopes up. Now i just want someone to tell me what it is, 100%, so i can get on and see what i can do about it! I feel for you so much, having to wait so long for results and appointments. It must be terrible having to wait for the mri results knowing that soemone has probably looked at them and knows before you do! I felt that about the ERG. Thinking of you, and i know whatever happens we'll be great mum's, to our lovely little boys.
  • you know aside from the one lazy pupil leo has(but we've not had erg, i'm going to ask at appt) they sound so alike, my mum had also thought zachariah was staring at her top, black and white striped top but again all we really do now is shrug our shoulders and wait and see.
    i do wish the moment someone knows what the scan means they could just phone us and say come in, its a shame it doesnt work that way really, but i'm so grateful that he had the scan 2months earlier than originally expected that i am coping with the wait, so far!
    i also just want to know, i hope to god he can see but at the same time i love him either way and i just want us to get on with our lives without questioning his every move, and, like you said get on with it in whatever way we can thats best for him. i am very determined to bring zachariah up in a way that he never feels hes missed out on anything and give him every opportunity i possibly can, we will be great mums because we love our sons and whatever happens i think we are prepared emotionally!
    thinking of you , it must be hard for you waiting to come to uk too, are you still waiting for the passport?
  • Yes still waiting... it was a bit of a mission because he needed a full birth certificate so we could apply and this country has major problems at the home affairs, everything takes so long. I think i should have everything by the middle august, so probably be there beginning september. Are you on facebook?
  • September, oh no you must really be willing time to fly by. with any luck you'll see some development yourself by then as he'll have progressed another couple of months and they do say the tests are more accurate from 7mth + i read it somewhere. not that it helps with the waiting game though.
    i dont have facebook at the minute but am looking into setting up an account as so many people are on it now i think im a bit of an odd one out heehee!
    well really hope that there isnt such a long wait for the passport, or at least that it doesnt feel like a long wait. i assume youre seeing moorfields as private patients so with any luck you wont have to deal with long waiting lists etc once you are here. good luck with it all
  • Oh no! I'm going through the NHS. Thats one of the main reasons im coming over, privately there im sure it would cost a bomb! So when i come over i have to first register with a GP who has to refer us, whos knows how long i'll be over! Im also going to try and hurry along the passport, by writing a letter explaining the situation. Hope you're doing ok, and coping also with the waiting. What is Zachariah upto? Leo has just started lifting his head when on his tummy, and can sit in his bumbo seat which im really happy about.
  • oh right! oh no! well with any luck you wont have too much waiting to do here as leo will be older so there is no way they would say there wasnt some sort of problem, will you be staying with family, at least it will give you a good chance to catch up with people. writing a letter sounds like a good idea, its certainly worth a try.
    Zachariah is doing fine thank you, he has learnt to roll now but only back to front , i never bought a bumbo but he does love to sit just cant do it on his own yet, i actually put him in a highchair which gives me a few minutes peace lol! and he absolutely loves standing with support or being bounced! my poor arms heehee! not quite sure he looks up as much as he should but hes certainly a happy baby which is good. he laughed the other day for the 2nd time when i tickled him and it got me thinking about leo, because you'd said he smiled from early on, i dont know if he's still too young, but does he laugh? i speak to the other mums on here with los the same age as zachariah and all their children appear to laugh lots, i guess a lot of it would be down to visuals but just wondered? zachariah is forever gummy grinning but the effort i have to put in for a laugh is huge!
    you love them from the beginning obviously but it is so nice watching them grow into their own little characters isnt it. i'm glad leo is lifting his head now you must have been so pleased, hes coming up to 5/6months now isn't he? we're nearly at 7months now come 3/7 cant belives half the year has gone already.
    hope you get the pp sorted soon and leo continues to progress whilst youre waiting
  • Finn is slowly improving. Sometimes he will not look at you but most of the time with patience he will look and smile. The rare giggles are the best thing. My wife rang me yesterday to say that he was sat next to the mirror giggling at how funny he looked. I wished I'd been there.

    He started on black and white toys with bold patterns so I think that is the thing to focus on. We were very impressed with the Moorfields people. We went to their clinic at Ealing hospital. I am still amazed they could work out how longsighted he was.

    Its nice that there has been some positive news for people. Hopefully we'll all get there in the end.
  • finn3 that sounds fantastic, i would get the same reaction standing zachariah infront of a wall as a mirror, sounds like he is really coming on, and the giggling, like i said zachariah has done it twice and from tickling nothing visual. is it now about finn being long sighted then or is it still under the dvm label?
  • Hi all,

    Leo does laugh alot, and babbles all the time. Obviously not from visual stuff, but from noises i make or being tickled. Leo loves being talked to, and i read that you have to 'teach' them to laugh, by laughing out loud when you do stuff, it feels odd but worth it, lol.
    As for some dissapointment, i took Leo to a doctor where my mum lives yesterday because of all the progress i thought he was making, and once again i was told he didn't 'follow the light' at all. Its so disheartning and confusing, because we were all so sure. He does seem to follow stuff sometimes but not all the time, so maybe it was not the right timing? It all really makes you question your self and your sanity!! Surely i cant be making this stuff up, and just wishful thinking?? Anyway he told us nothing new, and i just cant wait to get to moorfields where someone might actually be able to tell me what is wrong!
  • oh i'm so sorry, sounds like the dr visit has brought you down a bit. Dont worry you know leo is coming on in everything else so it really is just the sight you are waiting for, and with any luck you will be on the plane for answers really soon.
    i know this probably sounds like a really stupid idea and obviously as im a clueless mummy and not a dr it probably is, but have you ever tried just covering one eye and seeing if you get a reaction or fixation with one and not the other? i know our dr has never done this to look at zachariahs but, well, you try everything really dont you. if leo is anything like zachariah which a lot of the time it sounds like he is, there really are some days where you could almost guarantee there was something there and others where you could guarantee there's nothing. i doubt very much youre imagining it but you may find it is more to do with shadow/smell/breeze/or sense thats getting the reaction, thats what i assume with zachariah anyway! in fact my brother was telling me of a work colleague whose son was deaf, they kept checking by going behind him and banging some pans, couldnt understand why there was a reaction if he couldnt hear anything, until they worked out it was the wind from the movement of the two objects passed through air hitting the back of his neck! confusing isnt it! please try not to be disheartened, time will tell and with any luck when you finally get here it will be good news. thinking of you
  • i, you're right i have been a little more down since the last doctor's visit, you know what its like, i just keep wishing they would tell me something new, but like you said hopefully soon will get the answers i need.
    I havent really tried to cover one eye, he's quite wiggly and hates being fiddled with. I did ask one of the docotrs if he could be blind in one eye, and she said that he would still be able to focus and follow if that was the case.
    I think reality might be hitting me at the moment, but i'll be fine, i just need to feel like im 'doing' something, and i suppose i'm not very patient!
    Hope you are well and im not putting you down with my moaning, i know its hard for us all.
  • dont be daft you're entitled to down days, its hard work, especially when youre helpless as you dont know what it is youre meant to be dealing with. when my lo was 1st seen they checked the optic nerves and im pretty sure i was told that unless theyre unattatched we have some hope.
    i wish it wasnt a waiting game as sometimes i feel you sort of miss out on lo as youre so focused on his eyes instead (general you not personal)
    Although i still put things infront of him to give them a chance to work, if im honest im a little fed up of trying and just sort of get on with our day and focus on things i know hes enjoying instead. i wont 'not' do anything for his eyes though until i know for definite, but it is hard.
    now that zachariah shows more emotion it is easier, i dont think i could bare it if all he did was cry, id feel like i was failing him somehow. this definitely makes us stronger individuals and with any luck we'll pass that strength onto our sons. i worry constantly because milestones no longer seem quite so relevant anymore, im a little scared that his sight will affect him in other ways as he grows like speech/feeding/motor skills etc so i think unless we are very fortunate we will always be playing a waiting game in some respects.
    Try as best you can to put his sight to the back of your mind, i know you always have to be aware of it when doing things with him, but at the same time i know with me i definitely felt better when i wasnt questioning every eye movement. i still sometimes think hes just playing a game with me when his hands find his dummy or something, but over time i've got better at just brushing those feelings off. Really hope youre feeling more back on track today.

    i dont know if ive mentioned this before but theres a game zachariah absolutely loves. peek a boo, but we play with him on the bed and i put the cover over him saying 'wheres zachariah' then quickly pull it off saying 'there he is' he loves it, i dont know if its the feeling of the cover disappearing or contrast of light that makes it so much fun but it really makes him grin. Also now hes slightly older he enjoys pulling the cover off himself.

    look after yourself, take care you are doing a fantastic job
  • Hello everybody,

    I'm from Romania(eastern Europe), and i'm a dad. The mum is still not able to speak. She is crying since when the doctors said " Your 5 months daughter is having Leber Amaurosis".
    I'm also down, down, down, but I'm trying to survive with this and I'm trying to pull up my wife.
    Everything started at 3 months and 2 weeks when we noticed that Maia is somewhat loosing some of her vision. Until than she was following objects, she was following us with her eyes.
    After this age day by day she was not able anymore to follow objects, people...Also her had was a little bit floppy.
    Now she is havin 5 months, 1 week ago she was diagnosed with LCA.
    Her had stability is improving day by day, but nothing new with her eyes. She is moving her eyes like she is looking all the time to the surroundings but she is not bale to focus, or to follows objecst or people.She doesn't have nystagmus.
    Anyway we rae trying now to get an ERG exam next weeks. We did evocated potentials and this test seems to be ok for her age. Also MRI was fine.The last ophtalmo doctor noticed something at the retina.
    We are really desperate, and we are looking to find any news that can help. Also I've read about moorefield hospital and their tests(it is a small hope but at least is a hope).I'm really interested about the visit to this hospital planned by Leo's mum.
  • Claudiuf, I know exactly how you and your wife are feeling. I can promise you this is the worst part, and with time it is easier to deal with. The wonderful thing is that with LCA, it is rare but common enough to have amazing people out there doing AMAZING things. The next thing you need to do after the ERG is to do the genetic testing to find out what gene strain Maia has. At Moorfields Hospital they are doing clinical trials as we speak on one gene type at a time. So this is great news for us all and I feel that as horrible as it all feels at the moment, how lucky are we that our babies were born now and not 10 years ago. I feel positive that my son (and your daughter), WILL see before they start school! Maybe their vision will never be perfect but I'm sure they will lead full, productive normal lives.
    I understand that as parents you just want to 'make everything better', but when you are feeling really down, try and remember that Maia doesn't know anythings wrong, to her this is all normal. Focus on the positive things, and (although hard) try not to compare her with other babies her age. I know more than most this is easier said than done!
    Try and get your wife to come on here and chat because it really does help to talk about it with others going through the same thing.
    If either of you want to chat, I've done loads of reseach, I feel like almost an expert! My email is [email protected]
    When was Maia born, she must be very close in age to Leo? What is she doing now? Have you started solids? Leo loves his food!
    Keep well, and give Maia a big kiss from me and Leo.

    Hannah
  • Hello Leo's mum,

    Thank you for the response for the encouraging words.
    For us as parents the last week news with Maia's LCA it was really a shock. My wife, i think, needs some time to consume this sufference first. As of me, i'm trying really hard to pull up myself. I'm thinking only that Maia needs me.
    Every word which can bring some comfort in this situation is very good for us.
    Regarding what you know about the trials, i've read something over the internet , but here in Romania it seems that nobody is able to show us in what direction we should go.
    Now i'm thinking to get in contact wit U.K. Moorefield hospital, but is pretty difficult for us or maybe I don't know what to do.
    Also If you are going there i want to ask you to sent me an estimation for the costs (this is also something that i'm worried about).
    Please forgive me but right know i cannot say anything nice to anybody like you are doing, i guess for the moment i'm not strong enough.
    My wife doesn't speak english so she cannot write here, but as soon as she will be able to overcome all these for sure we,both togheter, will get in contact with you all here.
    Until at that time I will be here.
    We are really scared about this situation because here in Romania, being a blind means "end of story". No social protection, no schools, no therapies. I'm thinking more and more to try to go for Maia in another country like Germany or somewhere else.

    And Maia was born on 25th of January

    [Modified by: claudiuf on July 02, 2008 09:54 AM]

  • Hi,

    Leo was born on the 21st January, so very close.
    I understand what you are feeling, and I know its very hard to be positive. You do need time, to take everything in, and i do hope that i can help in some way. Leo was only diagnosed about a month ago, so I too, still struggle with it all but i try very hard to be strong for Leo's sake. If you're anything like me I feel the need to 'make a plan', and be told what to do next. I live in South Africa, and it is very similar to what you say about your country, there are very little services and support for visually impaired children. . I agree with you, if there is no help there, go somewhere where they can. My advice is to do as much as you can in Romania and then try to find a way to go abroad. Luckily for me i am a British Citizen so am entitled to NHS services in the UK. I will definately try to find out the cost's and whether there is any charities etc, that can help you. The lab where we have to send dna for testing is in Estonia, so maybe there are specialist's there?
    Believe me being blind cannot be the end, especially with LCA, as there is so much hope for a cure.
    Thank God, the MRI was normal (Leo too), as this means there will be no other neurological problems.
    www.yahoo.com has a group on LCA where you can ask questions and see lots of photo's of other children with LCA.

    The person at Moorfields you should get in touch with is
    Professor Tony Moore- [email protected]
    (+44) 020 76086830

    Keep well and stay strong



    [Modified by: Leo's Mummy on July 02, 2008 11:00 AM]

  • Was just thinking, that you should also still hold on to hope because untill you have the ERG and genetic testing there is no way of actually knowing it is LCA. All they have done is 'diagnosis from illumination'.
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