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JenniferS
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| Posted: July 02 2007 at 8:37pm | IP Logged
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I have two sons with strabismus. My 8y.o. has already been through four surgeries. We were led to believe that at some point he would receive vision therapy after he surgeries, but the doctor only sees him every six months and then after about eighteen months tells us he needs more surgeries. His deviations are very noticeable. He ahs strabismus in both eyes. At one time dh and I explored vision therapy, but our opthamologist talked us out of it by telling us ds would recieve vision therapy after his surgery, but it has never happened. DS now has very little depth perception.
D.S. (5 y.o.) has a milder form of strabismus and some vision loss. This same doctor wants to do surgery, but dh and I are feeling less and less confidence in the doc. we have investigated therapy, and there is board certified optomestrist in our area that does vision therapy. It is expensive.
Does anyone have any experience with this?
TIA
Jen
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ALmom
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| Posted: July 03 2007 at 3:40am | IP Logged
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Jen, we have quite a bit of experience with vision therapy but not strabismus. We had a lot of binocularity problems and did have one that had an eye that wandered at least once (I'm the only one that saw this and it was my clue that this dc problem really was her eyes). Yes, therapy is expensive but for us it was worth every penny!!!! 5 of our 6 children have been through vision therapy. 4 of these had very severe binocularity issues. I know we haven't dealt with strabismus and you'd probably like to speak with someone who has - but I would be happy to answer any questions related to our experiences with therapy if you PM me. I do know that often the therapists/docs will work with you for payment plans, family discounts and in some cases even help you to do programs at home youself while they evaluate (docs evaluation in our case was covered by insurance while the therapy was not). I know you may be able to find useful info on pavevision.org and I know I've seen brochures discussing strabismus and percentage success with therapy as opposed to surgery. I would really look into this. One thing is that therapy will do no harm - except to the pocketbook and you can pursue other things later if needed. Prayers to Saint Lucy for your dear children.
Janet
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JenniferS
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| Posted: July 03 2007 at 8:34am | IP Logged
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Thank you, Janet. I'll be honest that right now I am so overwhelmed that I'm not sure what questions I have, but as soon as I ahve them, I'll PM you. Thank you so much!!
Jen
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denise3578
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| Posted: July 05 2007 at 2:00pm | IP Logged
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I have two children with strabismus. My first 13yod has been a very difficult case. She is not eligible for the surgery because she drifts outward when she looks in the distance, but inward (on the other eye) when she reads. So she is constantly dealing with issues of double vision. She has seen ped. opthamologists at Duke University and Wills Eye Hospital. They told her they could not help her. She also has very little depth perception and no binocular vision. She uses her eyes independently - she said it feels like she pushes a button and she can choose to see the image her right eye is seeing, or the image her left eye is seeing. She was also skipping when she read, in other words, she would be reading a sentence, and then be suddenly somewhere else on the page. Vision therapy has been miraculous for her.  They are working on her ability to track, and to keep her eyes working together so she sees just one image. My son, 3yo, had a more stable form - both eyes pulling in, and had the surgery at 16 mos. So far, there is just a slight drift, every now and then. We have not done anything with vision therapy with him, and unless he has reading problems, I probably won't. In my experience,Pediatric opthamologists do not necessarily support the idea of vision therapy.I know the optometrist I go to has patients that have had the strabismus surgery and he is now following up with them to fine-tune them.
Does your son experience any double vision? My daughter describes it as having your own kaliedescope - that never turns off. 
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JenniferS
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| Posted: July 05 2007 at 2:07pm | IP Logged
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My sons eyes did and continue to do the same thing your daughter's do. Our opthamologist told us that ONLY surgery would work, but four surgeries later, he is only slightly better. You could have been describing my ds when you described your dd. The doctor told me that the eye problem was not the cause of his learning problems, and I did not and still do not believe her. UGH! Thank you for posting. you give me great hope for the vision therpay fo my oldes ds. The younger ds has one eye that pulls in slightly, but he also has some vision loss.
Jen
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denise3578
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| Posted: July 05 2007 at 7:20pm | IP Logged
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Jen,
How could it NOT be a cause of his learning problems. I have had to read almost all my daughter's work to her for years now. And math - another horror. She couldn't track the problems, for ex. she couldn't do long division because she couldn't keep the numbers straight. As a result, she is doing approx. 5th grade math - fractions. I have been in panic mode as she is now entering her high school years. But thankfully, as I said, things are improving. I have also never been able to have her copy anything. She can't look at something, look away and copy. My guess is your son can't either. That makes copywork, worksheets and handwriting very difficult. Hang in there, I have found this particular condition very frustrating to deal with - it is a very technical thing to explain to a parent and I always feel that I am just not getting it straight. Good Luck, Denise
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AnaB
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| Posted: July 05 2007 at 8:55pm | IP Logged
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I went to a pediatric opthamologist who specialized in vision therapy and he had my son wear bifocal glasses. He said that the bifocals would exercise his eyes more consistently and more frequently than the exercises of vision therapy. The downfall is that my son has lot two pairs of glasses. We may be needing to order more (we'll know if he still needs them after he next appt.), but next time I will have him wear them when awake with a strap around his head like athletes do.
This is just a thought. My son is now reading voraciously and seems to not have any problems. He started wearing glasses when he was around 6 years old. He wore them for two years.
Hope this helps.
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His By Grace, AnaB blessed WIFE to Jeff and mama to 4 blessings!
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ALmom
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| Posted: July 05 2007 at 9:47pm | IP Logged
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My dd did not use both eyes together but since her eyes were not visibly (at least not to the docs) turning out/in, she was never diagnosed with strabismus. The optometrist who finally diagnosed her said she had a tendency to eyes going out. My relatives always said she never looked directly at anyone and it did remind one of my aunts of her son who had severe amblyopia (which runs in our family). Actually, here we were told that nothing at all was wrong with her eyes.
However, she alternately shut off eyes (much like what is described above in other posts except my dd didn't even have a clue that anything was wrong), could not converge or track, lost her place, had no more than 5 min. attention span (5 min. was a good day), reversed all letters, transposed numbers, could not do math problems because of inability to focus, had difficulty copying, was barely sounding out cat and definitely struggling in all things academic.etc., etc. Her spoken vocabulary was huge. She often fell out of her chair when trying to read to me. We also noticed that she could not do jumping jacks. She often would complain of being sick to her stomach at night - but she was somehow riding her bike (though not in crowds in the cul-de-sac) and otherwise appeared extremely coordinated and had gone through the developmental milestones of crawling and walking at normal times. The developmental optometrist who finally diagnosed her also found that in addition to all that we noticed above, she had trouble with visual form, visual memory, visual closure, directionality, and some other things I don't even remember. Vision therapy was nothing short of miraculous for her. I attribute our even finding this out of town doc to the intervention of St. Lucy. However, believe it or not, she told me I was crazy when I told her I thought her struggles were due to eyes. I guess she just thought everyone saw so poorly as it was all she had ever known. Today, at 15, she has none of the problems mentioned above and is working at or above grade level in all areas. She is still a bit distractible but nothing outside the range of normal variations in temperment and such. She has never had any recurrences of her vision problems though therapy was completed when she was 10. We were told that if she were ever in a severe accident or extremely sleep deprived or deathly ill, she might have a regression that we would then address with more eye exercises, but otherwise we shouldn't experience any problems. She sees the optometrist (the one who diagnosed her) once a year for a normal eye exam. Her therapy took 36 sessions 2X per week at the therapist (and daily at home). It took us all day to accomplish our therapy exercises and we dropped all other school in the process. The first week of therapy was spent simply in getting her to use both eyes together. (The therapist described what she was doing as alternately shutting off each eye so it was like a flashing light with her eyes. She could not converge her eyes on a single point on the whole yardstick so we had to start with turning on her eyes together. We used red/green glasses a whole lot.
I have similiar stories with many of my other dc - though with most of them we began therapy at a much earlier age so they seemed to "like" the exercises more than this dc did. We did one son twice because we chose to do therapy while he was still very young despite the docs recommendation that we wait and do it when he was a bit older. He cautioned that doing it really young might mean we would have to do it again when he was older. We decided that we wanted to avoid some of the developmental lags that occur when dc do not have binocular vision. His eyes were corrected, he had this huge learning jump and then we hit a wall again, and redid therapy just as the doc had said. He is fine now other than reading glasses. Our oldest had different vision problems and no binocularity problems. Her jumps were not as dramatic but she did get beyond getting sick to her stomach every time she read for more than 20 min. She is now near-sighted and could use a bit more therapy for range of focus (ie going from near to far and back) but uses reading glasses instead. She just didn't think doing more therapy was worth it. (We didn't get her therapy until well into her teens so it is no wonder she was never fond of reading - she is just now beginning to read more just for fun and the doc advised us to listen carefully to our teens as doing therapy when they are not really behind it, unless it is really severe, means often that you waste money). We have one son whose vision therapy gave huge improvements, he learned to read and is an avid reader - but he has relapsed into no binocularity. We thought maybe like other son that he just needed a refresher and did therapy one more time with him. He still struggles, and we think there is more than just vision going on with this child. However, the therapy gave him a huge lease in the ability to read - so it is still worth it to us for every dime we spent. We do not regret any of the therapy decisions we made and would do the same over again - except that we'd begin sooner and make sure we went all the way until release by the doc even with our oldest.
Don't be afraid to ask questions of the docs and understand how all the pieces fit together. Our optometrist wanted us to see - and made sure both my dh and I saw what he did when he made the diagnosis. We were rejoicing that for once someone was seeing what we saw. I will say that every MD here refused to aknowledge the therapy. We had one doc insist that she really had ADD and the eye therapy just taught her how to concentrate(they couldn't argue with the visible results of therapy as she was functioning whereas before she was unable to learn). They even tried to insist she had appraxia (we knew that was ridiculous for this child as her command of verbal language was always very high). To satisfy this doc - and to keep from feeling cornered to a social worker who was dead set against homeschooling, we paid for testing for appraxia locally. The tester came out to us laughing - saying she didn't know how to score the test, they ran out of test before my dd missed enough to score it. Anyways, she didn't have appraxia - surprise, surprise. But the doc dropped the social worker stuff and by that time we'd done enough therapy to say that the problems were resolving. I do remember being a little fearful about what we'd do if the state challenged us about our educational program (only therapy) as we were dealing with a child that had no problems as far as the state and local medical "experts" were concerned (our diagnosis was from out of state) and since she couldn't read or write much, we really didn't have much written record of any education going on - 5 problems on a page for math (simple addition that I wrote in huge print and space very, very far apart was I think the only written thing we had. I had attendance records where I recorded what I had read aloud to her and I had therapy records. That was all we did for a year. No one ever challenged us. In hindsight, we made the right call.
Janet
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JenniferS
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| Posted: July 06 2007 at 9:15am | IP Logged
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Thank you ladies. The doc did put my younger son in bifocals for about three months. Then she said they weren't working, and we were just supposed to patch leading up to surgery. That was a red flag for me, as ds had only been going to the doc for three months. His is much milder than older ds, adn it went undetected for many years. I used to really like our doctor, but I am losing faith in her because she doesn't seem to think that we, as parents, know anything. It's frustrating. I am hoping this doctor we are going to see at the end of July about vision therapy wil give us hope.
Our oldest ds hates copywork,hates handwriting, hates creative writing. He loves math. He is very good at it. In fact I could move him up a grade level, but most of the math books for fourth grade are nono-consumeable. He does like MCP, so we are stiking with that for as long as possible. You all are really giving me a lot of hoping. I'm feeling bad for not going on my first instinct several years ago and lookig at vision therapy instead of surgery, but I can't change that, so I'll just move forward.
Jen
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humanaevitae
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| Posted: July 06 2007 at 10:51am | IP Logged
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Jen,
I'll need to ask my dh to share his experiences as both he and his brother have strabismus. He had multiple surgeries and has turned out pretty well. He also patched and believes that it helped a lot.
Our youngest was born with a cataract and to make a long story short... now wears bifocals, a contact lens, and will patch half his waking hours until he is 10. We have seen over half of the POs in our state as we love to get second opinions!
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Nicole-Zane 10, Elizabeth 7, Xavier 4, and John Patrick 2
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JenniferS
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| Posted: July 06 2007 at 11:07am | IP Logged
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I don't necessarily regret all of ds's surgeries. The first two made a huge difference. The last two have made very little difference. I'm interested in hearing what your husand thanks, Nicole.
My cousin and her son both have strabismus. My cousin has had multiple surgeries, and she doesn't feel like they helped much. Her son wore prism glasses and had several yeas of therapy, and they fell that it worked better. It probably varies for individual cases.
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ALmom
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| Posted: July 09 2007 at 5:48pm | IP Logged
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Jennifer:
We will keep you and your dc and their eye specialists in prayer as you persue whatever is best for your children. Isn't it wonderful that we have so many different approaches to try - but it is confusing and the controversy over methods can sometimes befuddle. God will lead you to what is best for your children. Many hugs as you go through all of the searching all over again. Don't look back - only forward. God will use even the mistakes and struggles to bring some great good for you/your children. I know the struggles with vision have made my dc more patient and understanding of others who struggle.
Janet
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Victoria in AZ
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| Posted: July 10 2007 at 2:49am | IP Logged
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My son has amblyopia and strabismus. Bifocals were prescribed. We did some vision therapy. When it became too expensive, the doctor said that group sports would accomplish nearly the same thing for ds. Every year his crossing has improved. Now he only crosses when he is very, very tired.
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Victoria in AZ
dh Mike 24 yrs; ds Kyle 18; dd Katie 12; and one funny pug
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JenniferS
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| Posted: July 10 2007 at 10:01pm | IP Logged
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Victoria,
Thank you for mentioning the group sports. My oldest ds loves group sports, and he is amazingly coordinated despite his eye difficulties. My younger ds hates group things, and he seems to really struggle with coordination sometimes. But I do notice how much baseball and soccer have really helped my oldest. And my younger one likes those sports within out family. He just doesn't like playing on a team much.
Janet, thank you for what you wrote, also. I appreciate it. It really does help. We canceled ds's sppointment with the opthamoligist until we have heard what the optometrist that does eye therapy think. We will re schedule afterwards.
Prayers for guidance and discernment are so appreciated.
God bless you all for just letting me talk about all of this.
Jen
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J.Anne
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| Posted: Aug 02 2007 at 5:16pm | IP Logged
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My daughter has amblyopia (I think?). We've been patching one of her eyes - four hours a day - for four years. It has been remarkably successful. Her eyes (with glasses) are 20/20 and 20/25 now. I'm not sure what other therapies there are. My daughter was not eligible for surgery. I can't remember all the details as it's been four years since we got the diagnosis.
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JenniferS
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| Posted: Aug 02 2007 at 9:40pm | IP Logged
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We just visited an eye doctor that specializes in vision therapy. My boys have strabismus, and one has a very severe case that probably cannot be helped through therapy, but my other son has a milder case. The doctor fixed a pair of glasses that help my son to straighten his eyes, and we do exercises with a light twice a day for a few minutes. We already notice a difference after only a week. I do think that their involvement in sports like baseball and soccer have helped a lot. The doctor was shocked that our son with the more severe case could even hit a baseball. So, I think(I'm not an expert by any means) that anything that develops the eye/hand coordination is probably good, at least for my boys' situation.
Jen
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Topic: Vision Therapy for strabismus?
