Hi all,

Thanks for your words of encouragment waiting for baby. You seem to be really strong. I am finding this so hard to deal with. I wake up everyday hoping things have changed. It seems that when I go out all I see is babies and toddlers. When people look at William and he doesn't respond I don't know what to say. I guess that time will make it easier to deal with and I will become less emotional about it.
Its great that your son can sit and is beginning to crawl.
This forum is so helpful, just knowing that we are not the only family going through this helps and we understand how each other are feeling. Obviously I wish we all didn't need to use this forum and things were different. I include you all in my prayers everyday.
Does anyone live near Manchester England?

Hello again everybody,

My Maia had some small progress with vision, but she still can hold her head like she supposed to do.
About crawling nothing until now, and about sitting she can do it for couple of seconds, but that is all, but she really wants to sand up. all day long she is pushing in her legs to stand up.

We don't know what to think, we are affraid to be happy about vision progress, and we are still waiting the final results from Germany(some special blood test and spinal fluid)

What can we say ? We cannot be happy but at the same time we have some hopes. We are waiting every day to see something new, and i can tell you that a lot of this days we are dissapointed. When i entered the firts time here we were really desperate, now we are trying to learn to live with it, and we love our daughter. It doesn't matter what she has, it doesn't matter what it wiil be, we just love her. Is really hard, like you said, when you are seeing other childrens, but that's it....
We can do only two things : one is to love her, and the second one is to fight for her......

Ahhh, it is difficult, I’m still unsure what to say when people look at him. To be honest though I think most people tend not to notice as his eyes do move around so it just looks like he is interested in everything but them. As for people we know (but not family) we tend to just say he is having visual problems but don’t know more than that. Although it is frustrating as they continue to ask ‘any news’ but people soon stop. I think unless strangers are really annoying with you and persistant in getting their attention just ignore it, other mums have said to me though if you just turn around and say ‘hes blind’ people tend to murmer a few words and leave you be without needing to go into details with them.

we all deal with these things in our own ways, I have days where I get really low about it but then focus on something other than his eyes and it makes all the difference. Zachariah didn’t actually smile until 4 months and that was really heartbreaking but now I cant help but grin back at him when his gummy smile appears, it really was worth the wait

Claudiuf I am sorry I cant remember how old you said maia was but I am petty sure she was several months younger than zachariah, the fact that shes not crawling I am sure means nothing at this stage, my health visitor told me that most babies don’t even attempt to crawl until 10 months so I am sure she is doing fine. Also if you think she is progressing each day then every day you have something new to celebrate. I know it is difficult and you always worry that maybe you are just wishing it and it’s not really happening, but sometimes it is.

I honestly don’t know if zachariah is beginning to see or not but I really feel there is something there that wasn’t before and if it is just he’s learning to use his other senses that is still good for him.

I live in s. wales but have family in shropshire.

Hello ladies,
How is everyone? I am working my way through your thread to catch up but it may take me a while hope your all ok?

Hi ahh, we go to Manchester Royal Eye Hospital all the time it's great everyone is nice and they are really informative, if you don't understand something then ask them to explain it to you or better still ask them to write it down, I did this with Jessica as it was all to much to take in at first *blushes*
Oh and take some drinks with you it's usually packed and can be a wait to be seen

Hi all. Waiting4baby - you are so positive and it is contagious ;-) Thank you for all your encouraging words, it feels good to talk to other people in the same situation. And the situation seems so much like ours! We also had a perfectly normal pregnancy and a c section and no history of visual problems.

Waiting4baby - our son also moves his eyes like he is looking around, just like you described. Sometimes he gets cross-eyed though. Do you feel that you can communicate at all with your Zachariah? I don't feel like a get a lot of response. My son looks happy and content when I talk or touch him, sings to him etc, and he laughs if I tickle him. He sometimes makes noises, like talking to himself, but I can't say that he answers or talks to me at all.

He has started to sit for about 20 seconds but no crawling yet. He spends most of his time lying on his stomach and he holds his head upp well.

Take care all!

hi cjk, i'm glad i've helped but i am sure as each day passes you will all find yourselves feeling more and more positive.
i definitely feel zachariah communicates with me, i have no idea what children with perfect vision are like and it has been more and more obvious over the last month but he smiles a lot when spoken to, (laughing tends to be reserved for tickles only and very rare) he is beginning to understand words like breakfast, lunch, dinner, nappy, dummy, zachariah, give me your fingers (i say this when pulling him up) basicallly i've found by being repetitive and aways using the same word for each action he is slowly beginning to pick up what they are. of course i may discover it's all to do with the pitch i say them but i'm pretty sure it's not as he knows what he wants. his ears will prick up if he hears myself or his daddy and he sort of stops still if theres a lot of noise going on around him, nosey in his own little way heehee!
i dp things like the song head/shoulders/knees etc with him and touch each part and this gets a reaction as when we get to mouth he prepares to grab my hand and eat it. Counting has worked well whether it's poppers on clothes or countdown to arriving outside our door/food time etc. he's not able to point for what he wants obviously but by asking him words he hears a lot i do tend to get a smile for the right one or a heh heh noise and jumping on his little legs whilst being held. of course i could be making my son out to be some kind of genius and it's all in my head but i do feel we are getting somewhere. he is however a very fussy baby, hates being left alone (especially me leaving him) wont go near the bath we have to do bed bath and flannels, he cries his little heart out when we go somewhere that he doesn't know, especially if it's noisy but by being calm with him and accepting not everything is going to be 'normal' we do ok.

i feel like i've written far too much in my last few posts so apologies i just keep babbling as i know for me i wanted as much information or anthing i could relate to as possible.

hope i've answered all your qns, feel free to ask more and if i've missed one i'll try to get back to it.

ooh the talking/response thing. i don't tend to get a response just a look. zachariah has this thing where his head tends to be tilted to one side and he 'looks' out of the corner of his eyes, no idea why, i put it down to him being vertex and stuck but drs say unlikely!
however if i make cooing sounds he tends to copy them and generally they are the same pitch but not always and he loves it if we do it in reverse and when he makes noises i copy him.
tbh though a lot of this is things that have improved over the last month so although we all put a lot down to their sight some of it is that they're just not old enough. i am forever paranoid about what he should or shouldnt be doing because you cant help but wonder if its their sight holding them back but most of the time its just i'm expecting too much :roll:tsk

Hi all,
We went to the eye hospital today. The drs checked Williams vision using the black and white boards and he followed the majority of them but was slow in following them.
When the dr shone the light in his eyes and moved it he turned to it a little but I don't know if that was a coincidence or not.
They dilated his pupils and said that everything looks normal. We have to go back in November.
At least they still think its DVM.
Joanne and Brood, do all of your children go to the eye hospital? have they had/ got DVM?
Claudiuf, thanks for your comments. Its good that your baby is wanting to stand.
CJK and Waiting for baby- thanks so much for being positive. Your babies are lucky to have you as their mummies.

[Modified by: ahh on September 05, 2008 07:52 PM]

ahh, that all sounds REALLY good, we've been going for months now and zachariah has never taken any notice to the black and white boards, and only once tracked the light but the guy was talking and hadn't realised (but i know he was it went along the lines of ' now lets see if you can follow this, ah ha!' lol.)
i think it can only be positive that there is already some sort of vision there, although i think zachariah has improved he hasn't met this stage yet. so congratulations and i really hope he continues to improve. take care of yourselves, thinking of you.

leos mummy/hannah: how are you doing, any news of you getting to the uk yet? and how is leo doing with his glasses, i would imagine you have seen a real change in him now.

Hi, I've read this forum with great interest as my baby has just been diagnosed with DVM. We've been to the pediatric opthamologist and he said that everything is normal with the eye except for a sluggish dialation. He does not thing it is Leber's. However, since Milo was only 6 and a half weeks at the time (he is now 8 weeks) the doctor wanted us to wait 2 months and then come back for reevaluation -- at that point if there is no change he will do an ERG and an MRI. We have also had an EEG done because his eyes do wander and shake sometimes and our regular pediatrician was concerned that it might be seizures. Fortunately brain waves were normal so hopefully it is just DVM. The opth did not see nystagmus but his eyes definitely shake and move weirdly sometimes -- i don't know if that just has to do with the immature system or if it's possible that he missed the nystagmus. Hopefully we will find out more at the next appt in Oct. But it is sooooo hard to wait.

Your group seems so wonderful and supportive and it seems like the only place to turn. I am having such a hard time dealing with this although i try to remain optimistic. It seems like bizarre things just keep happening to us -- following my labor i was unable to walk for about a month because i had compressed the nerves in my legs during the pushing phase. It was also strange and no one seemed to know what it was, and just as I recovered from that we've been hit by this. My husband says that I just need to stop worrying and that all will be fine but it is so very hard and my heart is breaking.

Hello everybody and welcome to Milosmum!
So nice to read all your updates, especially nice to see waiting4baby is back and glad that Zachariah is doing well.
As for my Leo, he is doing great. He is sitting alone. although he does fall over after a while!He has just started to roll from back to front which Im really proud of because ive been waiting for that! He's also eating well and talks all the time, recently adding ba ba ba and da da da to his vocab.
The glasses do seen to make some difference but I dont make him wear them all the time as they irritate him and he grabs them and tries to eat them.lol.
Stil waiting for his passports so we can bring him over. Also think Im going to wait to get the results of the genetic tests that we had to find out which gene strain of Leber's he has (if any...). That should take another 1-2 months as they have to go to Estonia.
Its very interesting to hear everyones stories. Milosmum, how old is your little one now? Its seem very young to have the EEg done, when Leo had his at about 3 months they told us not to read into the results too much as they change over time. After DVM, Leber's really is probably a good result opinion because they are doing effective clinical trials as we speak. As with milosmum it is the sluggish pupil reaction that concers the doctor, making the clinical signs different to most of you on here.
As with waiting4baby we are positive and try to just make the most of all the wondeful things Leo can do. He smiles laughs and babbles all the time and is such a happy content baby. We have to rememeber that he knows no different. All of this doesn't mean that its not hard everyday and that we are not to be sad about it but as claudiuf says all we can do is love them as we are doing!
It would be great if we could all get together at some point, hopefully when im over in the uk. Our gorgeous ones could meet which would be lovely.
Anyways keep updating on here, it really is helpful to hear what everybody else is doing.

You are all in my thoughts and keep doing what your doing with your lovely little ones.

Take care
Hannah

Hannah, thank you so much for the welcome. It does help to know that there are others in the same boat. Although our stories aren't exactly the same it is comforting to know that others are going through something similar as this is such a strange situation to be in. Milo is 8 and a half weeks old and we got the diagnosis at about 6.5 weeks. We live in Brooklyn. It seems like most of you are from England. My brother may soon be moving to London for his job so hopefully I will be able to visit at some point.

Hannah, they did the EEG specifically to rule out the possibility of seizures or epilepsy -- my dr. thought that might be the cause of the trouble with his eyes but fortunately doesn't seem to be. It was not fun though -- they hooked Milo up to the electrodes and videotaped him for 24 hours. He was fine but uncomfortable I think, as was I since I had to breastfeed him and hold him and sleep the night in the tiny uncomfortable hospital chair. Was this your experience with the EEG as well? Did they want to rule out spasms or was it just to check brainwaves? I don't know if it has any other diagnostic usefulness in terms of DVM but let me know if you know more -- it sounds like everyone here has far more info on this than I do.

I have to say that everyone is so wonderful and positive on this forum that it gives me strength. Of course we all just love our babies but I pray for all of us that one day our children will be able to see.

I started out the day feeling really down as it was dark and rainy. I felt like there was no way to get through this and it sat heavy on my heart. But then Milo had a day of many smiles (still few and far between) and my spirits soared...I just love my little boy so much no matter what cards fate has dealt us.

Best wishes to all...
Jodi

Hi all, welcome to Milos mum.

It seems that most of you have had ERGs carried out. William is 5 months old now and still hasn't had one. We have to go back to the hospital in November for another check up so it won't even be done then. I know that the later they are carried out the more reliable the test. I will push for one when I go in November. I'm just hoping that he will have made some progress by then.
I would love to meet up one weekend, I am in Manchester and would meet half way/ travel to meet up.

Milosmum, I think I may have got confused between the EEg and ERG...:\? Leo had an ERG test where the electrodes are stuck all over his head and then light was flashed in front if him. Your EEg experience sounds like it was really hard. When we had the ERG I was also breastfeeding I know how hard that was between all the wires, so for 24 hours must have been a real struggle. Im sure it was worth it though as the results ruled out brain problems.
Our stories are all varied but with lots of similarities and I also get strength from everyone on here. It will be interesting following all the progress that we all make with our little ones over time. I live in South Africa, but am planning a trip to Moorfields in England in the next couple of months.

Hope you are all well,
Take care
Hannah

Hi all,
Thought I'd tell everyone about some resources I use with William. I recently bought some jingle bells that you strap around the wrist/ ankles. He seems to react when he hears them. I bought them from Mothercare. I have also got a black and white mobile and a black and white playmat both from socialbaby.com. Hope this of some use to you all.
Has anyone else got any good tips for stimulating the babies?

http://www.thenoveltywarehouse.com/

I use this site to get stuff for the kids, it's great for stimulation for them :)

I go all the time ahh, all my brood and DH go to Manchester royal eye hospital to be seen even though lucy's eyes are ok.
They youngest 3 have DVM, astigmatism, CI nystagmus, development nystagmus and other eye problems which I shamfully can't spell or remember but they weaken the eye muscles aswell as them not being developed peoperly which is the main cause for thm being born blind.

Hope everyone's well take care xx

Hi Joanne and Brood,
I went to a toddler group for visually impaired babies and toddlers on Thursday. It was at Henshaws Resource Centre in Old Trafford 10-12noon. I found it to be quite helpful in meeting other mums and sharing experiences. Have you ever been? I'm sure you would be very welcome if you wanted to pop along. It was a bit of a treck for me as I live in Stockport but worth the journey.
Thanks for the website address, I will have a look at it.

I'm just wondering -- it sounds like your babies are cooing and babbling a lot. When did they start to do that? Milo is two months and he makes little noises but not a ton. Also, he smiles sometimes but I can't tell if it's in response to something we've done or our voices or if it's just random. Just wondering what your experiences were when your babies were about 2 months since I figure the blindness does affect other things as well.

Oh, another thing -- Milo hates tummy time. His neck seems to be getting stronger but when I put him on his stomach he usually just fusses and I can't get him to lift his neck much. I'm wondering if this has to do with the fact that I can't make it interesting for him by distracting him with visual stimulus so he will lift his head.

Joanne & Brood, you said that some of your children have DVM. When they got their vision back did it come in gradually or was it all at once?

Sorry for all the questions but it seems like this is the only place that I've found real people dealing with the same thing.

Hope all is well with everyone and that the new toys for stimulation are helping -- I am going to check out those websites, although since I am in the U.S. may not be able to order.

Hi Milosmom,

Hope you are well.
Its funny because I cant really remember much about that time (Leo's 2nd month), because thats when all the diagnosis' and tests were being done. I do rememeber taht at about 5 weeks Leo started smiling in response to being talked to. At the time I thought it cant be real smiles because his head was always facing one side or rthe other, never at your face.
Leo must of starting babbling at about 3 months or so. Noises that sound like little screams were the first. Now he has started with mmmm and da, but it doesnt mean anything. Just him experimenting with his voice. He also has been making noises like when you blow a raspberry all the time now, getting louder and louder, which is really funny.
As far as tummy time, Leo has also always seemed not to like it. He has a very strong head and neck but doesn't yet push up on straight arms. He started holding his weight on his fore arms at about 5 months I think. He's recently been able to roll from his back to his tummy, so it must be more appealing these days to be on his front. It is hard to motivate them if they cant see but using noisy things/toys seems to help or getting right down there in front of him and talking to him.
I hope this answer some of your questions from my experience. Whatever happens rememeber that ALL babies are different, sighted or not. It can be very difficult in the beginning (and even now!), to not be comparing your baby with all the others you see. I have spoken to mothers of other visually impaired children, and some did things excactly as the 'normal' chart says and some different, so try not to worry. I say have them be babies for as long as possible!lol.

TAKE CARE

Hannah:D

Finn went to see the Moorfields clinic at our local hospital today. As we thought he has really improved and they think he has almost caught up to where he should be.

They still have some concerns about long-sightedness but he's going to be fine. Its great news and we are so lucky. I can remember how low we felt when he was 3 months old and we started to realise there could be a problem.

His sight started with black and white patterns. It improved slowly at first and then before you knew it he could watch faces. He is such a smiley chap now.

I wish everyone well on the thread. It was good to feel part of a community and get support from people who are dealing with problems far worse than ours.

Richard