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My Ry - any one with a child with these same diagnosis?


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  #1  
April 4th, 2010, 02:51 PM
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My daughter Ryleigh was diagnosed with congenital nystagmus at 2 months old. Her eyes move uncontrollably vertically and horizontally. Around 18 months we learned that she is severely far sided with very poor, but functional vision, and started wearing glasses. At two, we were still in observation, changed her prescription to a lower on (plus 5 from plus 7) and she harly would wear them. She is about to be three and we just had a dr appt with the opthamologist on Friday. He confimed her poor vision and thinks she might have something called ______ Labors. Cannot for the life of me remember what it is called...I should call and find out tomorrow...anyway, it has to do with her retinas. She will have to have an ERG test which flashes light on her retinas to see how they respond. Any one have experience with this? The dr said we have to wait til she is a little older bc the test in inaccurate in younger children. If she does have this disorder, he says there is no treatment and her vision will no get better. This breaks my heart. And I feel angry. Like it is not fair. It is a poor attitude and I don't feel like this all the time, but every time we go to the dr, I always go in feeling hopeful or that maybe someone has thought of a cure or an operation or anything. Now I am looking into the AZ School for the Deaf and the Blind so we can go ahead and start getting services for our "legally blind" daughter. He renewed her prescription to a plus 6 so hopefully she will be able to see better.

Also, any place where we can get things for our home to help her with letters, numbers, colors, ect?


Sara
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  #2  
April 6th, 2010, 09:24 AM
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I am so sorry about your baby girl.
My daughter is almost 9 months old and has nystagmus as well. Wandering so its the up and down and left and right, though more up and down for her. Typically nystagmus is from another condition but not always.
I don't know much about retinal issues so I am no help there.
Avery had bilateral cataracts (both eyes) so had surgery to remove them over Thanksgiving week, Monday and Friday. She is in contacts now and wears a +21 which was lowered from a +23. This gives her arms length vision.
Do you know what your daughters acuity is? or how far roughly she can see?
I would not get caught up in the numbers a +5 can give one person 20/20 vision and the other person can have a +2 and only see 20/100 it just depends on teh person.
Do they think your daughter will have working vision like be able to drive a car and such?
sorry about all the questions. lol

as far as feeling guilty you need to stop! lol I know easier said then done. There is nothing you could have done to prevent this, its just what happens sometimes. One thing that helped me was just knowing that I am doing everything I can NOW to help her n omatter what her vision is or will be.

Is your daughter getting any services? Like ECI or through the school district?
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  #3  
April 6th, 2010, 08:53 PM
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She isn't yet but I'm looking into it now. We live in a small border town with limited resources so we might be needing a transfer. Anyway, we have not been given. An acttual visual acuity. In fact I feel very ilinformed. I have also decided to get other opinions. We have no famiily history of anything like this so it just doesn't make sense for her to have an inherited vision disorder. Kwim? Just been in observstion mode last three years being told there is nothing that can be done at this point. Now we have this lca scare which we still don't know when she can get the erg. I want it now! Then if the lca is confirmed I'm getting my family the genetic testing that is available. I'm curious to see what's going on and also dh and I r wanting one more. :/ so I'm researching early childhood schools so we can get the best services we can and I'm doing research to better educate myself.
She gets around great. Early on she had a difficult time with depth perception like didn't see a step down or thought shadows were a change in level. She scoot from bottom driveway to street in stead of holding my hand and stepping. She has got it now. Just delayed. And lemme tell u how fun parks were but she does great now. Refuses glasses wished she could wear contacts but no one has offered. Always told there's nothing we can do. They told me same things about her vision either it could be perfect or terrible but I know nothing. Just that it sucks. And she is very farsided. They seem to forget were not eye experts.
I'm sorry about ur baby. I saw ur siggy and recognized the nystagmus. Ry had ppicture day at school today and I hope they were patient with her. I left directtions and explanation. stuff like that gets to me. The lil things like her having such a hard time feeding herself with utensils. We have been practicing for 2 years!
I dunno. Been crying a lot. Did they have to give ur daughter all those scary tests to rule out brain tumors and such? Worst two weeks of our lives! Ugh!
Her nystagmus has slowed down a lot. Not too noticable but then her eyes r starting to turn in occassionally. But now it could something far worse than I ever imagined. Such garbage. I wanna hold on to the possibilty the dr is wrong.
Is the cataracts the cause of her nystagmus?
How old is ur other daughter?

Thanks for writing back. I have never talked to anyone else whose child is effected. Ur girls r gorgeous btw. Just like mine.
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  #4  
April 7th, 2010, 12:57 PM
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inhertited doesn't mean that mom and da has it too. Avery's are inherrited from dad, as my dh has cataracts as an infant as well, and his are hereditary BUT no one in the family has it. He was tested for everything under the moon as a child but that was 30 years ago.
Avery was not tested for anything as she was 4 months old when we took her in due to the nystagmus, and yes teh cataracts is what caused it. From what I have learned about nystagmus is it is common to have when there are other issues at hand. Whether eye, brain ect... BUT its not always either. But the nystagmus is what brought us in to the doc in the first place, though we were aware of cataracts as well we just didn't know either. AHH confusing! lol
as far as glasses vs contacts, contacts are more because the lens of her eyes have been removed so most babies with cataracts wear contacts. glasses are not an option because her nystagmus is too great, the way the doc explained it was that glasses would give her eyes to large of an area to focas, teh contacts are smaller so her eyes are more likely to be calmer. We hope that it will get better as she gets older and even now they don't flutter anywhere near as bad as they did, they used to do it all the time, now its more when she is trying to focas further away.

I would ask them to give you an idea of acuity. How old is she? You said she is in school so there is no reason she couldn't read an eye chart even if its the kid one with pics.
Does your dd have a null spot? Avery does she tips her head back to look straight but its not always either.

I can't beleive she doesn't have a vision educator and mobility therapist to help when she was little learning the depth perception and such. The problem is you have to be VERY proactive and KNOW what your rights are. I was able to get Avery in Early Childhood Intervention right away. I called the week after her diognosis as soon as her surgery was over on Monday, I called to get her evaluated. So we had occupational therapy for her from that week on, we now have the school district that stepped in that specializes in vision, so she is in good hands. We have therapy every other week for her.

there is a yahoo group that is called aphacic, its mainly for parewnts with kids like Avery that have congenital cataracts, HOWEVER they have some kids on there that have retinal problems and others like that, maybe you can join that and see if anyone can be of help. That hting has been my life line. When we first started doing contacts it was so hard, have to pry her eye lids open, her eyes blood shot, eye lids swollen, screaming and puking and only getting one contact out in 30 minutes having them for support was well.. it was the best. There are kids on there that wear glasses as well, so again it might help
aphakic : APHAKIC support group

and thanks, my oldest is Nichole and she turned 4 in january! No eye problems
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  #5  
April 7th, 2010, 07:18 PM
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Hey There!

OMG I had no idea you could enroll them into anything that young. Like I mentioned, I feel so illinformed. I wasn't given anything. No resources. I asked. I asked what can I do to help her at home. Is there anything we can work on and they told me no. Just try to keep her from developing a null position and force her to look straight which I think I did a pretty good job on. I would work with her on tracking and focusing the best I knew how. She kinda has a null position similar it sounds to your daughter's. Like she tilts her head back, eyes almost closed to look at things close up. But this isn't constant either. So I am not even sure it is a null position or not.
Ryleigh turns three next month. She was home with me her first 7 months. Then I started working and she went to a home daycare twice a week and stayed with my mom 3 times a week. Then we moved to AZ where she went to another home daycare full time til I moved her into an acutal early learning center. I have always been told we could get services from the state via public school but we haven't had the paper work or anything done. Her DR didn't seem in any rush to classify her this way or that. I feel like she could so further along by now had I known she could recieve help so early on.
According to my dr both the nystagmus and the lca are hereditary. Both parents must be carriers of the mutated gene in order for a child to become effected. This is what boggles my mind bc none of us have any history of this anywhere. I mean what are the odds that Dh and I would come together with a mutated gene like that? Geez! I have scheduled her two more appointments with two different opthamologists in May. I am going to call the retinal specialists I found and see when we can get her an ERG done. I also need to contact the public schools here and find out what I need to do to get her serviced. I work at a charter school where my son also goes but that is ok. I don't think we can give her the services she needs there. :/ I feel like I don't even know where to start.
Are you and DH going to have anymore children? What are the chances another child will have the cataracts? DH and I are in the process of planning...still poppin the BC pill and especially now til we get this whole thing resolved. From what I have read, there is a 25% with each child that they could be effected. I don't know how I feel about that chance. I mean, my daughter is completely functional and aside from the vision and the things that go along with it, developmentally on schedule along with her peers. I just worry too much I guess.
Our son is 6 and in kindergarten with perfect...better than perfect vision. I am so happy for him to be so blessed. And I guess the other way to look at it...more glass half full which used to be my outlook on life til lately, is that there is a 75% chance, the child will be born asymptomatic and a carrier or completely ineffected all together. Ya know? Ugh! I hate this!
Can't the drs put the contacts in for u? My mother has a friend whose grandchild wears hard lenses for one month and they take him to have them put in every 30 days. I couldn't imagine trying to put contacts on an infant! Poor baby.
Well, I need to help my hubs get the kids in bed.

Sara
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  #6  
April 7th, 2010, 08:25 PM
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our doctor didn't give us anything either, but I have friends that have done the ECI thing (kids under 3) so they told me to call right away as they can sometimes have a waiting list of a few months, so I did but either they like to work with vision babies quick or that my county isn't as populated I don't know but either way we had our evaluation like in 2 weeks. Since she will be 3 next month you need to all your school district special education program, they will get you into contact with whoever yo need to talk to ECI is ONLY for kids under 3. Then the school district will evaluate her and determine if she needs any services, (speech, occupational, just help in school ect)
The problem with avoiding a null spot is it doens't help, they have one as that is the position that helps them focas better so not sure what that is about lol. They told us to look for one but nothing more. I know when they get older if they have side null spots and such its about positioning them in the class to help them see better so I don't see how you can stop it, ya know?

As far as more, most likely we are done, can't say 100% at this time butmost likely, there is a 50% chance any of our kids can have it. So...... we were fairly sure we were done anyways, but that makes us even more unsure of more. I would be soo scared during hte pregnancy and such I don't know if I can do it on purpose. If it happened I would live but I doubt I could really try for another ya know?

Even if they are in extended wear contacts its HORRIBLE to leave them in more then daily. Its jsut bad for the eyes. just like adults, the contacts may say 30 days, but a good opthomologist (not optometrist) will tell you daily removal is best for the care of the eye.
ALSO its best to do it daily as she will be wearing these until she is in grade school or higher before we do implant surgery and even then she may need them, that routine of doing it daily is better then so rarely. If I did in every 4 weeks, then ext month Avery wouldn't remember doing them at this age. Now its routine. We go upstairs, we change into pjs, we change into a disposable diaper (we cloth during the day), prevacid used to go in but we just weaned 4 days ago, contacts come out. Morning, she wakes up, contacts go in first thing before we do anything including changing the diaper. When we get them in we sing our song and clap hands and go to bed. She KNOWS what is going to happen.
PLUS they put them in the first time and took them out and it was so horrid, the doctor wanted to use an eye speculum to hold her eye open because she was screaming and thrashing so much! So sad!!!
When we first started doing them it was the same. I was pinning her down, she was screaming and puking and just trying to pry her eye lids open. BUT I watched youtube video of a mom puttin gher babies contacts in and out, I watched it a dozen time I think lol then did Avery's I had them out in 2 minutes!!! It just kept getting easier.
Now its not stressful for either of us to do, she rarely puts up any fuss, sometimes I can get them in without even holding her arms down, I jsut lay her down and tell her and pop them in or out.
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  #7  
April 8th, 2010, 10:43 PM
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I'm glad she is addjusting! Poor baby! I wear 30 day ones but take them out nightly. Esp over here in az where its nice and dry. Got her appointment with a retina consultant for the 22nd but this clinic doesn't use an anesthetic so its probably not gonna go very well. Shell have to wear contacts for this. Still doing research. But I'm dead tired so I will right more tomorrow.
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  #8  
April 9th, 2010, 01:04 PM
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do they specialize in childrens? I would make sure they do.
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  #9  
April 10th, 2010, 09:47 PM
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No they don't specialize in children. There is one in Tucson who does but I can't find them...I might have to go all the way to Phoenix. I am going to call her dr back Monday and see what and who he recommends.
Sorry been MIA. Been busy getting the house ready for my inlaws and nephew who came in for the weekend. Been entertaining so I hadn't had much time for much else.
I am so sick of waiting! I want answers!
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  #10  
April 12th, 2010, 01:01 PM
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I would probably find someone who specializes in children. Our doc is not just peds but does peds and he started off doing congential cataracts so I feel confident in his ability to treat her.
I'd call around to local opthomologists. and ask them upfront if they have worked with children and nystagmus?
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  #11  
April 16th, 2010, 10:45 PM
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There is no one in Tucson who specializes in children with the erg procedure. we are going to have her appt thursday and hopefully if it does not go well, they refer us to someone is phoenix. i have called several people. ~sigh~ Hopefully we will know something soon.
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  #12  
April 18th, 2010, 12:41 PM
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hang in there
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  #13  
April 25th, 2010, 07:17 AM
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My dd had an ERG done when she was 4. We had it done at an eye hospital in a nearby major city with the chief of pediatrics. My dd's retinal issues are undiagnosed but they suspect either choroideremia or gyrate atrophy. Her symptoms match those disease but her genes don't. We don't have vision problems in my family either other than near-sightedness.

Anyway, they did the ERG under anesthesia. It came up totally flat meaning there is no activity in her retinas at all. The ophthalmologist didn't really believe those results so she'll get tested again when she's older and she can be awake for it. I've chatted with adults who have had it done and they don't love having it down but it's manageable.
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  #14  
January 9th, 2011, 06:57 AM
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Wow I have been gone forever!

She had the erg done and the activity level was pretty flat also. It was an interesting experience...we told her the things on her ears were earrings and her baby got to do the test too...had to bribe her with a new baby...she did an awesome job!

We were told that since it was meant for an adult, we will probably have to have it redone in a few years. But the results were consistant with LCA. From there, we started doing some serious research. We found that Florida would be our daughter's quality of life hero so we got all of the paperwork together and my husband prepared a memo for a transfer and filled out an application to the Florida School for the Deaf and the Blind. It all came together in July where DH got the transfer and she was invited to the school for an evaluation! Both the same week so we headed to Florida...she was accepted (of course) and there began our journey!
We moved to South Jacksonville in August...midway between DH's job and her school. The school is fabulous...has all the resources you can think of! We found a new opthomologist who hooked us up with the "in the know" retinal specialist from the University of Florida where several clinical trials are taking place, specifically for LCA. Also, we have a genetics consult in April! All this was done by October...everything we have wanted, needed, and hoped for all provided to us in at that point in the 3 months we have been here.
Her teacher is a huge advocate for Foundation Fighting Blindness and I am working with her to raise money for our children!
I have seen such an improvement...DH and I don't know if her vision has improved or that she is just learning how to use the vision she does have bc she continues to amaze us everyday...for example, there was a large stuffed shark hanging on the wall at Bass Pro Shop with its mouth wide open and no teeth...she asked us why he didn't have teeth! She rolls and throws a baseball and chases after it and does it again. She will run to something she has spotted across the grass. Etc. She is being introduced to braille, large print, uses a cain in unfamilair territory, has a mobility coach, and an occupational therapist...remeber how I said she was having a heard time feeding herself? She has improved so much!!!! I am confident we made the right move. And also here in FL anyway, she and all other children with vision lost qualify for inhome services from birth to 6 years of age.
And if you didn't notice from my ticker, we are expecting a baby next month! We went for it...still nervous...and will be til he is born, but we are confident, he will be just fine.
Wanted to do an update and see how everyone was progressing! Thanks!
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  #15  
January 15th, 2011, 08:02 AM
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wow that is so wonderful that everything is just going right for once! 'm so happy for you and her! Congrats on the new little one!!

have they been able to get an acuity on her?
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Last edited by nvr.4.gtn; January 15th, 2011 at 08:06 AM.
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