I really know how you feel. I feel the same, it's keeping me bussy all day! Kamil doesn't seem to get his eyes crossed. But he almost never focusses on anything either....
I hope you get the results on the mri soon! let us know if you do.
I admire the way most off you are dealing with this! I just can't accept that Kamil is blind untill whe know for sure (not that it would make him any less!) You are all so strong, I'm only trying to be, but find it very hard. Thanks for sharing your storys.
Hi CJK, It is great that your baby can respond to objects put infront of him. It is good to hear that he is making progress.
William is nearly six months old now. Progress seems to be very slow. He can track objects and will smile in response to sound but still no response to our faces. He will copy the odd sound if I blow a rasberry or say gee. He seems to look at the light when its on and will look around sometimes, but other times he will just sit in his bouncer, high chair and not make a sound. He will sometimes 'look' at his hands and often go cross eyed when they are close up to him. He hasn't reached out for any toys yet, we are still waiting. Our next appointment is in mid November for a check up. Its all such a waiting game. As for crying real tears, we haven't had any tears yet. He doesn't seem to cry a lot, only when his teeth are hurting. Just thought I'd let you know where we are up to.
Hi Ahh: I don't think my son sees the objects put in front of him. It is when I put toys in his hands, or when he feels the structure of the newspaper that he gets interested in touching or exploring them. No eye contact whatsoever, no following light. Sometimes only briefly he seems to react to black and white things but next time he is not interested.
Claudiuf I am so pleased to hear that miai is making such progress, how wonderful for you. Milos mum thankyou for telling me about the progress at 12months, I have also heard this and even as late as 18months, I think we have until 2 before it becomes very unrealistic! Motherof3, zachariah never cried tears in the beginning as it takes a while for a babies tear ducts to develop, I don't remember when he did cry tears but it was certainly a couple of months after birth. Also could the shiny layer be a cataract? I don't know if they have already checked that but I do know the earlier its sorted the better.
Please all of you do not give up hope, I am in no way preparing for a life with a blind son, I am just not preparing for a life with a normal sighted son either. I know in time I will have to do the research and get my head around all of this. BUT. like all of you know, it is very difficult to just get on with your life with the endless visits to hospitals, drs and house calls etc.
Personally I think we are all doing fantastically, not one of us have said we don't love our children, and we are all on sites like this because we are desperately trying to get our heads around it. We play with our children and we are doing everything in our power to help them, don't be so hard on yourselves. Every step zachariah makes I am so proud of him and also proud of myself as I feel I have helped him get there, you should all be proud of yourselves too as each one of you is talking about what happy content little babies you have.
Look after yourselves and I really hope you all see some progress or get some good news very soon.
thanks! You're absolutely right! We are doing great and our childeren are happy and loved, it's not easy but we are all doing the best we can and maybe even more! Thank you for pointing that out.
really in the beginning zachariah wasn't really interested in anything and i think a lot of this is just because he was too young but things i've found good are
mirrored disco ball - this was one of the first things he appeared to 'see' due t it being shiny and reflecting light onto his face. i used a rainbow one for more colour but dont know that it really mattered
(this isn't the dragon i got but gives you an idea.)
elephant mirror - this was good for everything they tell you to use for stimulation as it was noisy had flashing lights/mirror/ and movement also great for letting him sleep when he cried at lack of noise
Hi all! Today we got the preliminary results from the MRI by phone, and everything seemed to look perfectly normal . SUCH a relief! It's all we've been thinking of for the past week.
Next week we will see the neurologist and learn more about what the next step will be. They will also compare the x-ray pictures of our son's brain with pictures of a normally developed brain (at 8 months) to look at the maturation.
oh cjk that is fantastic news, i am really happy for you and your family, that must be such a load off your chests. really hope the neurologist appt goes well and he comes up with some handy information/ suggestions
good luck mother of 3 for the 21st really hope it all goes just as well for you.
hope everyone is doing well, thinking of you all, take care
CJK, that is wonderful!! I am so glad to hear your news. Marieke, we will also be having our MRI on the 21st so I will be thinking of you. I have to be honest, I am really terrified. Of course, I will love my son no matter what happens, but I am desperately hoping we are not looking at any issues other than blindness. Please keep me in your prayers...
Molismom, I'll be thinking of you too! When will you get the results back? Whe are having an appointment with the neurologist on 28-10. He will show us the results than. I must say I don't really know what to expect. One day I'm confident it will be alright, the other day I'm worried sick. Appart from the blindness Kamil is doing well, so that's reasuring.
Milosmom and Motherof3, i'll be thinking of you both on the 21st, good luck with that, i'm sure it will be fine.
Quick update from us. Leo is doing great, i'm really impressed with his development this last month. He can sit for a length of time, is rolling all over, babbling ALOT, and finally taking some weight on his legs. Really proud of him, he's just so clever. I'm amazed everyday with him, his co-ordination with his hands is unbeliveable, he can pick up small things and find's what ever is in his space with ease.
Hope you are all well, and your little ones are thriving.
Hi all. We had an appointment with a neurologist on Wednesday and we thought that he would give us the detailed results from the MRI and let us know what the next step will be for us. But he hadn't even looked at the pictures and had no new information.
The eye doctor has nothing more to tell us and the neurologist has never heard about DVM or whatever it is that our son has. Such a disappointment. We really feel that we need to get started with habilitation. Our son is almost 9 months and I wish someone could help us get information about how to help him develop, communicate etc etc. We feel all alone and I'm so glad that this forum exists.
Waiting4baby - are we almost in the exakt same situation now? Nobody has a clue and all tests have been done? Have your son taken blood tests and chromosome tests? What will your next step be, do you know?
Just wanted to let you know I'm thinking of you. I can understand your frustration! Where not having all tests done yet. Kamil is having an mri next week and where going to have chromosone testing and bloodtesting done begining of november. So whe're still waiting for results. But I can imagine you are feeling helpless right now. Is there a pediatrician you can ask for further information? (have you ever been to one?) Whe have been to one last month because whe tought it would be usefull to have one doctor who is "in charge" and tells us what steps to take and who communicates with the other doctors (clinic genetic, neurologist, eyedoctor... etc.) She will see Kamil again in december to follow his development and if necesary she will send him to a physiotherapist or any other therapist he needs. Maybe you can see one too? You have so many questions and someone needs to anserw them. I can't believe how you're neurologist reacted! (He should have taken this much more serious. He should know how important this is for you as parents. I hope you'll find someone who can help you with this. Let us know!
Good luck, How is everyone else buy the way?:\) Marieke
milos mum and motherof3 :good luck with the mri i hope it goes well for you and your little ones leosmummy: i'm so glad leo is doing so well cjk: i'm so sorry to hear that the neurologist wasn't much help to you it certainly does nothing for the frustration. it does sound like we are in the same situation, zachariah is 10.5 months now and as far as i can tell the dr have done as much as they can/intend to do. i am still waiting for a follow up for the neurologist since seeing him after the mri, the opth we've been seeing isn't checking on zachariah again until the end of january, we have been referred for a second opinion but i've yet to hear anything. he is meant to be having a hearing test but i have been told it's just to say they've done it as we really don't think there is any problem there. As far as i know we are not having any blood tests done, there has been no mention that it could be anything but dvm which is great but at the same time 10 months on very frustrating. i have to say though i think zachariah is beginning to improve, i wouldn't say for certain but he really does seem to grab at things with far too much precision, not all the time though, and there is still no face recognition. i am beginning to wonder if he can see just from the corners of his eyes only. i haven't quite worked out the pattern for what he does visually but am trying to see if i can work out what the drs appear to have 'missed' if that makes sense. do you feel there has been any improvement with you yet?
best of luck to everyone may our los continue to do well for themselves )
Waiting4Baby - I keep my fingers crossed, wow, maybe this is the breakthrough you've been waiting for! Have you done VEP (Visual Evoked Potentials) lately? A VEP would surely let you know for sure if Zachariah's sight has improved. We have done VEP twice and will do it again in a month.
CJK, what did the VEP entail for you? Im just wondering because Leo had an ERG but it wasn't like what i'd read it was going to be if you kwim? He just had lots of electrode wires stuck to his head and then had a light flashed above his head. Have you had that??
Leo's mummy: Our son has had VEP and ERG, and they did it at the same time. They put electrodes on our son's head, and they also put one under one of his eyes. The electrode under his eye somehow was used to measure the function of the retina (ERG) and the other electrodes was used to measure the signals that went from the eyes to the brain and back (VEP). I think they measured how fast the signals went, and next time they see if they go faster. Hmm, no doctor's language here, sorry
Replies
I really know how you feel. I feel the same, it's keeping me bussy all day!
Kamil doesn't seem to get his eyes crossed. But he almost never focusses on anything either....
I hope you get the results on the mri soon! let us know if you do.
I admire the way most off you are dealing with this! I just can't accept that Kamil is blind untill whe know for sure (not that it would make him any less!) You are all so strong, I'm only trying to be, but find it very hard.
Thanks for sharing your storys.
Marieke
It is great that your baby can respond to objects put infront of him. It is good to hear that he is making progress.
William is nearly six months old now. Progress seems to be very slow. He can track objects and will smile in response to sound but still no response to our faces. He will copy the odd sound if I blow a rasberry or say gee. He seems to look at the light when its on and will look around sometimes, but other times he will just sit in his bouncer, high chair and not make a sound.
He will sometimes 'look' at his hands and often go cross eyed when they are close up to him.
He hasn't reached out for any toys yet, we are still waiting.
Our next appointment is in mid November for a check up. Its all such a waiting game.
As for crying real tears, we haven't had any tears yet. He doesn't seem to cry a lot, only when his teeth are hurting.
Just thought I'd let you know where we are up to.
Claudiuf I am so pleased to hear that miai is making such progress, how wonderful for you.
Milos mum thankyou for telling me about the progress at 12months, I have also heard this and even as late as 18months, I think we have until 2 before it becomes very unrealistic!
Motherof3, zachariah never cried tears in the beginning as it takes a while for a babies tear ducts to develop, I don't remember when he did cry tears but it was certainly a couple of months after birth. Also could the shiny layer be a cataract? I don't know if they have already checked that but I do know the earlier its sorted the better.
Please all of you do not give up hope, I am in no way preparing for a life with a blind son, I am just not preparing for a life with a normal sighted son either. I know in time I will have to do the research and get my head around all of this. BUT. like all of you know, it is very difficult to just get on with your life with the endless visits to hospitals, drs and house calls etc.
Personally I think we are all doing fantastically, not one of us have said we don't love our children, and we are all on sites like this because we are desperately trying to get our heads around it. We play with our children and we are doing everything in our power to help them, don't be so hard on yourselves. Every step zachariah makes I am so proud of him and also proud of myself as I feel I have helped him get there, you should all be proud of yourselves too as each one of you is talking about what happy content little babies you have.
Look after yourselves and I really hope you all see some progress or get some good news very soon.
[Modified by: waiting4baby on October 01, 2008 02:24 PM]
You're absolutely right! We are doing great and our childeren are happy and loved, it's not easy but we are all doing the best we can and maybe even more!
Thank you for pointing that out.
Marieke
just thought,... you were asking about toys
really in the beginning zachariah wasn't really interested in anything and i think a lot of this is just because he was too young but things i've found good are
mirrored disco ball - this was one of the first things he appeared to 'see' due t it being shiny and reflecting light onto his face. i used a rainbow one for more colour but dont know that it really mattered
http://cgi.ebay.co.uk/2-Inch-Rainbow-Disco-Mirrored-Ball-Ornament-FREE-Ship_W0QQitemZ5676488802QQcmdZViewItem?hash=item5676488802&_trksid=p3286.m63.l1177
squeaky/crinkly dragon - visualy this did nothing but he did get very excited when he heard the squeaky noiuse and enjoyed making the crinkly sound
http://www.twenga.co.uk/offer/20872/8762989574585440865.html
(this isn't the dragon i got but gives you an idea.)
elephant mirror - this was good for everything they tell you to use for stimulation as it was noisy had flashing lights/mirror/ and movement also great for letting him sleep when he cried at lack of noise
http://www.walmart.com/catalog/product.do?product_id=4241554
i'll see if i can find more later for you ;\)
Today we got the preliminary results from the MRI by phone, and everything seemed to look perfectly normal
Next week we will see the neurologist and learn more about what the next step will be. They will also compare the x-ray pictures of our son's brain with pictures of a normally developed brain (at 8 months) to look at the maturation.
We celebrated with a glass of champagne
Where having an mri planned on the 21 this month, I hope whe can have champagne too....
good luck mother of 3 for the 21st really hope it all goes just as well for you.
hope everyone is doing well, thinking of you all, take care
Mother of three, I've got everything crossed for you for the 21st. Please let us all know.
Molismom, I'll be thinking of you too! When will you get the results back? Whe are having an appointment with the neurologist on 28-10. He will show us the results than. I must say I don't really know what to expect. One day I'm confident it will be alright, the other day I'm worried sick. Appart from the blindness Kamil is doing well, so that's reasuring.
Marieke
Milosmom and Motherof3, i'll be thinking of you both on the 21st, good luck with that, i'm sure it will be fine.
Quick update from us. Leo is doing great, i'm really impressed with his development this last month. He can sit for a length of time, is rolling all over, babbling ALOT, and finally taking some weight on his legs. Really proud of him, he's just so clever. I'm amazed everyday with him, his co-ordination with his hands is unbeliveable, he can pick up small things and find's what ever is in his space with ease.
Hope you are all well, and your little ones are thriving.
The eye doctor has nothing more to tell us and the neurologist has never heard about DVM or whatever it is that our son has. Such a disappointment. We really feel that we need to get started with habilitation. Our son is almost 9 months and I wish someone could help us get information about how to help him develop, communicate etc etc. We feel all alone and I'm so glad that this forum exists.
Waiting4baby - are we almost in the exakt same situation now? Nobody has a clue and all tests have been done? Have your son taken blood tests and chromosome tests? What will your next step be, do you know?
Just wanted to let you know I'm thinking of you. I can understand your frustration! Where not having all tests done yet. Kamil is having an mri next week and where going to have chromosone testing and bloodtesting done begining of november. So whe're still waiting for results. But I can imagine you are feeling helpless right now. Is there a pediatrician you can ask for further information? (have you ever been to one?) Whe have been to one last month because whe tought it would be usefull to have one doctor who is "in charge" and tells us what steps to take and who communicates with the other doctors (clinic genetic, neurologist, eyedoctor... etc.) She will see Kamil again in december to follow his development and if necesary she will send him to a physiotherapist or any other therapist he needs.
Maybe you can see one too? You have so many questions and someone needs to anserw them.
I can't believe how you're neurologist reacted!
I hope you'll find someone who can help you with this.
Let us know!
Good luck,
How is everyone else buy the way?:\)
Marieke
leosmummy: i'm so glad leo is doing so well
cjk: i'm so sorry to hear that the neurologist wasn't much help to you it certainly does nothing for the frustration. it does sound like we are in the same situation, zachariah is 10.5 months now and as far as i can tell the dr have done as much as they can/intend to do. i am still waiting for a follow up for the neurologist since seeing him after the mri, the opth we've been seeing isn't checking on zachariah again until the end of january, we have been referred for a second opinion but i've yet to hear anything. he is meant to be having a hearing test but i have been told it's just to say they've done it as we really don't think there is any problem there. As far as i know we are not having any blood tests done, there has been no mention that it could be anything but dvm which is great but at the same time 10 months on very frustrating.
i have to say though i think zachariah is beginning to improve, i wouldn't say for certain but he really does seem to grab at things with far too much precision, not all the time though, and there is still no face recognition. i am beginning to wonder if he can see just from the corners of his eyes only. i haven't quite worked out the pattern for what he does visually but am trying to see if i can work out what the drs appear to have 'missed' if that makes sense. do you feel there has been any improvement with you yet?
best of luck to everyone may our los continue to do well for themselves
CJK, what did the VEP entail for you? Im just wondering because Leo had an ERG but it wasn't like what i'd read it was going to be if you kwim? He just had lots of electrode wires stuck to his head and then had a light flashed above his head. Have you had that??
Thanks
Hannah
Our son has had VEP and ERG, and they did it at the same time. They put electrodes on our son's head, and they also put one under one of his eyes. The electrode under his eye somehow was used to measure the function of the retina (ERG) and the other electrodes was used to measure the signals that went from the eyes to the brain and back (VEP). I think they measured how fast the signals went, and next time they see if they go faster. Hmm, no doctor's language here, sorry