Toddlers & older children
Children with special needs
DVM Delayed visual maturation: any helpful advice?
Sep 20, 2008 4:29AM
thank you, i will not give up hope until i'm told to, and even then it will probably still be there hiding somewhere deep inside me.
cjk thanks for that, i didn't necessarily think he had lebers i'm just clutching at straws, desperate for there to be a reason for all of this and frustrated that they seem to think there are no more avenues to explore!
please don't be so down, all children develop at different rates and i think we especially will be inclined to compare as we are so worried that it will be a problem for our little ones.
i have looked through my diary and will give you an indication as to zachariah development, some of them are spot on and some are delayed
reached for toy (based on noise) 6+month
laughed (through physical contact only) 4+ month and very rare
sit 6+ (not for long)
trying to stand he's been doing for about a week
cooing 4 + but still nothing recognisable, no ba da ma etc..........
however some of these things i honestly think happened because i was constantly doing things with him, like to roll i used to lie him on the bed, sing 'roll' and then turn him over going back and forth. sitting only began when i ignored advice on not putting in highchair until he can do it (as he hated bouncer) and it happened soon after that. cooing well we are constantly talking to him, and i tend just to copy his noises even if we're in the supermarket, i get the strangest looks but the point is we can't just flash them a smile so have to interact somehow. As for toys he really isn't intersted except in his teether rattle, but really he only wants toys to stick in his mouth since teething started. i am sure you have found lots of ways to interact i'm just trying to say that it didn't all come easily to zachariah so please please dont think it wont ever for you.
good luck with the mri he will be fine, it is scary but you will be ok, the fasting is the hard part because you cant explain it, i assume he's having a general at 8 months, i was allowed to go in while they gave him the gas and then was left to wait about 45mins for his return, he had a dry throat and a little confused about why his mum wasnt holding him when he woke up but once back in my arms he was ok just sleepy no vomiting etc. thinking of you
oh also i dont know if this helps anyone or maybe its common knowledge but i heard because of visual problems we are best to stick to one word for things eg: milk instead of, milk/drink/bottle/etc so they begin to understand/link what each thing is they hear / feel
Sep 22, 2008 11:46AM
My name is Marieke, I'm from Holland and I have three childeren. My youngest one, a boy named Kamil, appears to be (almost) blind. When I was looking for information about DVM I ended up on this forum. In one evening I read all your stories and I recogniced so much of it!
My son was born on the 23 of march. Tomorow he will be exactly 6 months. Shortly after he was born the midwife noticed he had hypospadie (his penis isn't correctly shaped) he also had strangly formed ears. When he was 2 days old he was seen by a doctor specialiced in childeren (sorry, can't find the right word..) and he has had an echo. His organs appear to be fine. His penis needs surgery but appart from that he seemed to be fine. They did notice some mild dismorfes in his face (broad nosebridge, the ears) Because of all this they adviced us to run a genetic test.
Whe decided to wait with that test and see how he developed first.
After a few weeks we (and other people as well) started to notice Kamil never made eye contact. When he was 4 months I was really worried because he didn't seem to react at toys whe held in front of him, almost never looked at us or anything else. Sometimes he did seem to follow with his eyes but I really started to doubt if that was by accident.
Whe saw an opthomologist (sorry if my spelling is incorrect) the week after I spoke about it at the buro whe go to every month with our baby's. In Holland whe call this a 'consultatieburo'. The doctor there shared our concerns.
The optomologist and the eyedoctor checked his eyes, they where normal. They also saw some response when they made him follow a light, but he did not react as he should. Whe where told it could be dvm and made an appointment for 6 weeks later. We where also told that if it wasn't dvm it could be a neurological problem and further test where required. In those 6 weeks we didn't notice must developedment ourselfs. At some point I gave up trying to make him follow a toy I moved before his eye. When we saw the optomologist again she thought she saw some aproval but not much. Whe are now waiting for Kamil to get an mri. He will have that done on 21 october, and next week whe have an appointment with the pediatric. I want to know if there is a relation between the hypospadie, the dismorfs and him appearing to be blind. I worrie if there is more....
He does react to (bright) light though, especially sunlight. Also his pupils react to light, but slower than normal. Another thing I have noticed is that he rarely blinks. Does any of you recognice that?
Sorry for this long story, but it feels so good to share it with mothers who know what I am talking about and what it feels like. I hope for all of us that our childeren will be alright. We will love them no matter what and we'll give them all they need!
I hope to hear from you soon.
Sep 22, 2008 12:57PM
Sorry to hear of another family going through this, but welcome, and feel free to spill everything on here. We all know exactly how you feel.
Your case is slightly different to mine because of the other problems you mentioned, but my little one also has normal eye's, reacts to light and has sluggish pupil reaction. I do wonder if all the stuff you mentioned are related or just coincidence. Have they advised an ERG, because some of your symptoms do sound like what Leo has been diagnosed with, Leber's Congenital Amaurosis?
CJK, I also fely\t that Leo seemed to be spending most of his life laying flat on his back, but with time he seems to be progressing. He is 8 months and only in the last month did he start rolling backwards and forwards. He can sit but still topples over after a minute or less. He is showing no signs of crawling yet, and refuses to take weight on his legs. Every baby is different, even if they are sighted, its just with our situation its more noticeble and easy to think its somehow related to our babies low vision.
Somehting i've been struggling with lately is the feeling of not having the same relationship with my baby as other mums do with their sighted babies. There's something about the fact that they arnt communicating with to us with eye contact, making it hard to know when they want your attention when playing etc, or they are fine amusing them selves (hard to explain, I hope u understand). Do you know what I mean?:\?
Anyways hope you are well and your babies are getting along wonderfully
Hannah (and Lovely Leo)
Sep 23, 2008 4:05AM
hello maurike, i am so glad you have found us, but so sorry that you are going through such a difficult time, i wish all the best for you, your family and kamil (i love that name by the way it's lovely) like leos mummy said it must be difficult trying to decipher if there is a connection or pure coincidence but with any luck more tests will come up with a useful answer. we're all here to offer support /shoulders to cry on/ or simply just someone to chat to. welcome
cjk how did the mri go? thinking of you all i hope it wasnt too traumatic for you or the little one. and of course that you recieve good news from the test results
leos mummy hi, i don't really know what to say about the connection between baby and mum as i have not really been around many seeing or otherwise, but i do agree i sometimes feel that i'm 'missing out' on something. probably starts when you know they should be looking at you to feed and then copy you and laugh at your stupid faces or dances or whatever but i think we all just have to muddle through the best way we can. there are days where i feel zachariah just stares into space waiting for something to spark his interest but he usually snaps out of it if i start speaking to him or bouncing him. hard work aren't they
i think in our case attention seems to be required with a frustrated cry but as zachariah gets older he will find better ways to be heard / understood.
i hope you are all doing well, thinking of you all
Sep 23, 2008 6:55AM
Hi Leo's mum and waiting4baby,
Thanks so much for your replys and warm welcom! I'm glad I've found you too. Today Kamil is 6 months (time flyes!) and appart from his visual problems he's doing fine. The other things he has do not bother him. His ears are not really weird, just a bit of a fold in it but you must really know to notice. And for the hypospadie, he can pie and thats all he needs to do with it now..
I hope surgery will make it normal looking and functioning.
I have a question for all the mums but espacially Leo's mum; do your childeren follow lights (like the light from your mobile phone)? Kamil does, I hope that is a good sign! I can't find much information on Lebers in Dutch. Maybe you can tell me a bit more about it?
I'm hoping to get more anserws soon. He's a really sweet boy, very content en cuddly. My two others kids, Terra 6 years old and Ravi 5 years old are crazy about him. I've told them that their brother can't see and that we hope that it can be fixed or resolve. They where so sweet, Terra said that she would buy him a wheelchair and take him where he wants to go. I told her that blind people could walk too, but she said that this would be easier for him... He can count on the help from his brother and sister that's for sure!
Sep 23, 2008 8:33AM
Yes, Leo can follow light, and funny enough the first thing I noticed he could do was follow my cell phone light perfectly, at first only in low light but now in all light. The last time I took him to a opth (when I was visiting my mum), he said he doesn't follow the light from the little flash light they use, and I was quite disheartened but I know that I am the one who spends all the time with him and my whole family and freinds have seen what Leo can do. He also follows some objects like shiny things or toys that are bright in colour. He seems to need things to be in contrast, like black on white etc. He shows no interest in things like TV because I think there's just too much going on at once, if you know what I mean.
As for Leber's, it is a genetic condition that both parents must be a carrier of (note that there is no family history of eye problems in either of our families, so it was quite confusing at first. Apparently it is common this way, and the condition doesn't show for generations)
Symptoms are: not following things when they should be able to, normal eye structure, sluggish pupil reaction, and an abnormal ERG.
The only definate way of diagnosing LCA is through genetic testing, of which there is only a few Lab's that test for it (the one Leo's DNA was sent to is in Estonia, and we are still waiting for the results). There are 12 discovered gene mutations so far, all with slightly different characteristics.
LCA is classed as a degenerative condition but in lots of cases eyesight seems to stay the same through out life. Vision can range from completely blind to light perception only to maybe seeing outlines or shadows.
The bad news is that LCA is one of the worst cases of congenital blindness, but the good news is that they're already doing clinical trials on humans and they say it can now be classed as a 'potentially cureable condition'. At the moment they are doing the trials on the RPE65 gene mutation, and they've done it on 19-22 year old's where its been noted as somewhat effective and safe. I hear that they are now doing it on 8 years old and will soon be moving onto infants (the dr's say they are very sure that the results will be better, the younger the patient as the disease has not yet damaged the eye).
I hope I haven't bombarded you with too much info! Sorry I tend to babble when writing it down because when people ask in person I find it quite hard to explain.
As for my Leo, he's a poorly boy and has a nasty cold bless him
Hope everyone is well
Sep 23, 2008 10:02AM
Welcome Marieke! I am sorry that you are going through this as well but it sounds like you have a sweet little boy and a wonderful family. I've never heard about there being any connection between any of the other issues and the eye problems. It seems like they might be completely separate but who can say -- it is all such a great mystery. My son doesn't seem to follow light at all, nor does he track anything yet. He is just over 2 months.
waiting4baby -- that is such a cute picture of Zachariah!! He is adorable and what a smile.
hannah - I know what you mean about feeling as if you don't have the same relationship with your baby as sighted babies. I have felt that ever since the beginning and it is hard. Sight is just such a huge part of how we connect in this world and it's difficult to adjust expectations when we don't have that element -- particularly when they are so young and can't talk or express themselves. We definitely have a harder road, but it sounds like everyone is finding good ways to deal. And I can only hope that things will get easier with time.
As far as my news -- I haven't learned much. We are still waiting til the end of October for another exam with the opth. Disappointingly, though, I found out that they don't even do ERGs until about 6 months -- apparently there is only one woman in the U.S. who does them earlier. I am very frustrated as it means that I won't have any answers for many months. I was so hoping to at least know more soon. The doctor is still optimistic that it is DVM and says he has seen cases like ours that resolve, but so many of the signs point to Leber's that I am feeling discouraged. Trying to keep my spirits up, but frankly the waiting is the hardest part for me -- with a diagnosis I feel like I could move on and accept whatever comes our way, but otherwise I just spend all day alternating between worrying and hoping.
Sep 23, 2008 12:37PM
Hannah, I'm also just wondering what you did to get the Leber's gene testing from Estonia and how long it takes. Is this something your doctor did or did you set it up yourself? Any info is greatly appreciated...once again things are slow here in the US -- apparently the lab in Iowa that tests takes 8 months.
Sep 24, 2008 5:57AM
Leo's mum, thanks for the information! It's very helpfull. Monday we go see the pediatric and I will ask him for the ERG. I'm still hoping that it will all pas and that it is "just" DVM.
How is Leo doing, is he feeling any better?
I found out that there is a doctor in Holland who runs genetic test for Leber's, she's specialiced in this subject. So maby this will make it a bit easier for us to get Kamil diagnost.
How are all the other mum's doing? It's so hard to wait and feel like there's nothing you can do, don't you think?
I try to enjoy every moment I spent with Kamil. Luckely he's very cudly and sweet. I also started babyswimming. He loves the water so that's real qualitytime! I don't want to worrie all the time but it is difficult.
How are the daddy's coping with it? My husband is worried but he can let go better than I can. He's not thinking too far ahead while I am worried about the futer, school, friends, sports etc. All the things his brother and sister do, he maybe can't.... That thought makes me sad!
[Modified by: motherof3 on September 24, 2008 10:59 AM]
Sep 24, 2008 11:33AM
done twice oops!
[Modified by: waiting4baby on September 24, 2008 04:41 PM]
Sep 24, 2008 11:33AM
thankyou milos mum i love the pic too
it's one of my favourite ones.
i would not worry about the erg not taking place until after 6 months as i heard if they are done younger than that they are not particularly accurate so for best results they wait.
mumof3 zachariah never followed lights to begin with although sometimes i would wonder if he was looking, like hannah said, mobile phones seemed to be the key for us and he squinted in sun light. so we did get reactions if bright light but as for tracking it, no chance!
husbands, well mine wanted to bury his head in the sand. in the beginning it was very hard and i had to be the strong one. i wouldn't call it denial but it's sort of ignored and theres a full belief that he WILL see. i prefer to be more cautious as less room for heartache. it's hard, and i found family took it a lot harder than i expected but as we've watched him grow we've all just accepted it as part of him that makes him ourv special zachariah
leos mum hope you dont mind theres a new thread 'eyesight' where a mum is asking about glasses in babies i've mentioned your name to her although obviously its different perhaps her hearing from someone whose baby is doing fine with them will put her at ease
hope all of you are doing well and the little ones of course. thinking of you all.
cjk, how are you doing, how was the mri?
[Modified by: waiting4baby on September 24, 2008 04:39 PM]
Sep 24, 2008 11:46AM
i just wanted to add about not being able to do things i think to be honest they will surprise us by just how much they can do, it will just be gone about differently.
i actually wish that zachariah had been my 2nd so that he had an older sibling to hold his hand and look out for him, it will be harder to ask of a younger one. i think as long as we dont wrap them in cotton wool (too much) they will learn what they can and can't do, as long as you're not told you CANT do something i think anyone tries to give it a go ... we just have to keep more of an eye on them that's all
Sep 25, 2008 4:40AM
I know your right waiting4baby, but it breaks my hart that nothing will be without questions as for my other two. H?????? is lucky though he has a big brother and sister to help him. I want nothing but the best for my childeren as does every mum. And I know blind childeren don't have to miss out on anything but I'm worried that my son might be mentally challenged too. So that will make it more difficult in life for him.
But I'm glad he's my boy, because me, my husband and his brother and sister will do everything we can to make his life wonderfull. So far he's enjoying every minute of it!
Does anyone of you know anything about Cerebral Visual Impairment?
I think this could be what Kamil has. Maybe it's interesting for other mums to look it up? the opt also mentioned it.
Sorry if my English is incorrect, but it's a difficult subject to write about when it's not your own language. I hope you can follow me : )
Sep 26, 2008 5:03AM
hi maurike don't worry abuot your english i think you are doing fantastically, as long as you feel you are able to say all you want to.
i understand that you are worried about brain damage as well but even so i am sure he will surprise you with what he can do, especially with the help of his older brother and sister. i do not know much about cerebral vision but i THINK that one of the mums on www.justmommies.com in the visually impaired children section has information on it. i sometimes use this site and its a great source of information but i find that people dont seem to respond quite so quickly. worth a go though.
i hope everyone is doing well and moving along with the test etc at quick speed. we've yet to have an appointment with the neurologist and our next appt with the opth is in mid-january as they are just checking up on him. just trying desperately to get on with our lives come what may.
Sep 27, 2008 5:25PM
Hi, I hope everyone is well. I just wanted to say hi as I am thinking of you all.
As usual there are so many ups and downs with this waiting. For me, like waiting4baby said, it is easier to believe that Milo is blind. And if it turns out that he gets his vision back then it will be a wonderful miracle. But I feel like I need to move ahead. I have signed up for Early Intervention and they will come on Monday to do an evaluation. I think this is something similar to Vista in the UK maybe?? Not sure, but it makes me feel good -- like I'm doing something that will be constructive for Milo. Also, I joined a support group for people and parents with LCA. Hannah, you might be interested -- if you go to groups.yahoo.com and search on LCA it is the first group to come up. They are wonderful at that site and it is really good to read about adults that are leading full and wonderful lives even with blindness. There is also another smaller group called Blind Babies that may be of interest.
Also, it's been a good week in general. Milo is smiling more and more each day and for the first time I feel as if he is responding to specific things. A friend gave us a toy that makes noises and he will almost always smile in response to it. Plus, he is cooing a lot -- making a lot of "ah goo" and "ooh ahhh" noises that are new for him. I am thrilled. He is still pretty lazy about lifting his neck, but it seems to be fairly strong so hopefully that will come along eventually.
Oh, also, waiting4baby -- i spoke to my opth earlier in the week and he said he has personally seen sight return from DVM happen as late as a year and has heard of cases that go even later. Just wanted to pass that on.
Thinking of you all...
Sep 28, 2008 11:28AM
Do your childeren cry with tears and do they blink frequently. Kamil doesn't but when I mention this in the hospital they don't pay any atention to it. But I think it's weird. I also notice that he has a sort of shiny layer over half his eye. Just below his pupil. The opth. hasn't mentioned it. I will ask the pediatrician about it tomorow.
Sorry for all thes questions, but I'm looking desperatly for anserws. It takes so long! I'm glad I can ask you. It really helps to talk about it with you, you know how it feels and how frustrating it can be....
Sep 28, 2008 3:53PM
Marieke- Yes, Milo cries with tears and blinks. But I have looked at him and thought that he definitely blinks way less than I do -- don't know if that is a baby thing. Also, not sure what you mean by the shiny part of the eye but I don't think I've noticed that. Good luck with your next appointment!
Sep 29, 2008 5:55AM
I have some news about my Maia(8 months now).
It seems that she is seeing something : She started 4 weeks ago to follow a little bit the people arround her, and some toys. It seems that in the last 4 weeks she improved. Now she is looking to us, she is following us arround the room, she is looking to some toys and to her hands.
But still she is in trouble with her head which is not very stable, she is not sitting by her own, she is not crawling, she is missing coordination eye-hand means that she is not grabbing toys or something else, only if she is feeling the toy touching her hand.
Otherwise she is eating just fine, she is happy, she is making a lot of noise but stil she is not making siblings like dada, gaga, etc.
And another thing - she doesn't like to be held in our arms with the face towards us(she is pushing herself away), if we held her with the face against us than she is fine.
And she wants to stand up and to make steps all the time if we are keeping her of course because otherwise she cannot standup by herself.
Me and my wife : we are somehow happy but still scared and worried about the issues that I mentioned about.
We are working a lot with her(some exercises each day) and also she is under a treatment each month 10 days with some brain vitamins and proteins. This treatment was precribed by some doctors here in Romania. In Germany, the doctors said that there is no reason to give her a treatment. Now we really don't know what do to. To continue this treatment or not. Our Maia is developing some sight because of the treatment or because this is her way.Dis she had something wrong or she is just delayed.No doctor said to us something clear. Only that they cannot say that there is someting or there is nothing. All the tests came clear.....but you can see that she is not developed like she is supposed to be at her age.:roll:
Sep 29, 2008 7:10AM
Hi everybody. Claudiuf - wonderful news about your daughter, I'm so happy for you
And MilosMom - thanks for sharing the information about DVM later than 6 months. My son is 8 months now and it is good to hear that we can still hope for DVM.
In the meantime we are waiting for the results from the MRI. Hopefully we will get the preliminary results this week, otherwise we have to wait until October 8, when we will se the neurologist.
I feel really low today. The uncertainty about our son's vision has taken over everything and we can't go on with our life until we get a diagnosis. I wish we could do like you Waiting4baby and start planning for a life with a visually impaired child - but what if there is more? If it is just his vision i would feel so relieved. What if there is more? I'm so worried about brain injury that it is almost all I can think about right now.
And I feel bad that I can't enjoy life the way I should. My son is so happy and content. He smiles a lot and Saturday night he couldn't stop laughing when I made him jump on my lap. I think he has started some crawling-attempts, and finally he seems interested in exploring things with his hands. When I read the paper and he sits on my lap he crumbles up the pages and tries to put them in his mouth. This is a step forward, definitely.
I also have a 2 year old daughter who is just wonderful. She loves to play with her brother; he lies on a mattress and she brings toys and pillows and pretends that it is a boat.
My son blinks normally I think. As for crying with tears - he almost never cries! But I have seen tears, I remember I noticed 3 or 4 months ago.
Sometimes it looks like my son is trying to fix or focus on an object. Then his eyes get crossed and it looks like he gives up. Do your children get cross eyed sometimes?
Sep 30, 2008 4:11AM
hi too all,
So good to hear maia is making progress! Hope she will keep developing like this Claudiuf.
How are the others doing? Some days I'm doing fine, other days I can't stop worrieing. The appointment with pediatrician didn't give us much more information. We just have another doctor to add to the list.
Fysically Kamil is doing fine, he's growing perfectly, his hart and longs sound fine, he can roll from tummy to his back, he rolls from his back to his side, he can keep his head up and he can sit with a little support. So that's all good.
When I mentioned the funny looking shiny layer (like a contactlens that has slide down the eye a little) I see in his eyes to the pediatrician she looked and she said she good see what I mean, but she couldn't tell what it was. She told me to wait and ask the opth. in november when whe have our next appointment. But I don't want to wait this long.
So I made an appiontment with our housedoctor (how do you call him?)
to get an second oppinion in a academic hospital. I must be shure it's nothing serious, but I still think it's not normal, especially because of the rarely blinking and not crying tears.
Am I an overconcerned mother now?
I also asked if Kamil could have Leber's and if he could be tested for it but she didn't take it very seriously. She had never heard of it and because I heard about from some other mother it didn't mean that Kamil has it..... Whe had to discuss it whit the clinical geneticdoctor. I'm trying to get an appointment there too. She will do the blood testing.
I'm glad I only work two days a week it all costs me a lot of time, but I'll do everything I can to find out what's wrong with my son and how I can help him.
I've also filled in forms for visio, an organisation that helps blind and poor sighted people at home, at school, etc. I hope they can be of any help.
Another question... I 'm looking for some nice toys for Kamil, I could use some tips!
Sorry for my long message again, but it's so helpfull!
I'm very curious how you are all doing too, hope to hear from you soon!
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