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Nystagmus anyone?

Assembly_ReqdAssembly_Reqd member
in Special Needs

Nate has mild nystagmus(wiggling back and forth) in both eyes. I just called EI and asked for an assessment to see if he can get some vision therapy from the School for the Blind.

At our appointment last week the neurologist said "Why is he not getting therapy for this!!???"  We both looked at each other and said "umm, nobody told us we could get therapy for it through EI"   **sigh**  When I asked our EI case manager about it she said "Oh? We do that? Let me ask my supervisor"...grrrrrr.

So my question is if anyone else is also dealing with this, if they are getting vision therapy and how it is going for their LO? TIA

WAY 2 Cool 4 School


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Re: Nystagmus anyone?

  • MbitnerMbitner
    I am not going through this.  But, when LO was younger and he had strabismus (and opthamologist said it probably would not go away- as most infants do) I asked our EI for vision services through the school for deaf and blind (I used to teach there and I knew they offered services.)  The director of EI didnt even know it was a possibility.  But, in our state I would have had to switch to the school for deaf and blind for EI services if I wanted him to receive vision therapy.  They do not have local providers and I was not comfortable having an EI coordinator across the state.  So, at that point I have opted out of it.  But, recently one of his eyes has begun to turn in again- so we may revisit it after our opthamologist appt in 2 weeks.  GL!  I have had many students with nystagmus- let me know if I can help at all!  
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  • Assembly_ReqdAssembly_Reqd member

    bubba-we live in the city.

    It is my understanding that the vision therapy is done at the school for the blind, so they do not have therapists that come to your house...We live pretty close and I do not work, so it will not be a hassle to go....

    thanks mbitner! our OT provider is the one who said she sees a boy who goes to vision therapy and he is in the "system" too...They sent me a copy of the EI request for an assessment but never said anything about having to do other services through school for the blind too. It must be a requirement in your area..?

    WAY 2 Cool 4 School


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  • Ms. Y.Ms. Y.

    My son Nate has both strabismus and nystagmus and our doc from Children's Hospital Boston never recommended vision therapy ----Hmm interesting. Nate just wears glasses - I guess he'll need to have surgery on one eye (due to muscle issues) but our eye doc said we didn't need to rush in to anything. I wonder what age they would typically start vision therapy?

    Crista

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  • Assembly_ReqdAssembly_Reqd member

    Yeah, I am getting the impression that I may need to be one step ahead for Infants & Toddlers.

    I am so, so glad we are going to KKI on the side. The therapist there has given us so many ideas and suggestions.

    I really like our I&T PT. She is super sweet. Our OT looks like she is right out of college and admitted to me that Nate was the youngest child she had ever done OT for feeding on. Not my idea of instilling confidence and she really didn't need to make any admissions to me. Just watching her try and feed Nate was clue enough. Total amateur in the baby spoon/food handling skills. But, since the therapy is free, I figure we can both learn stuff together. ;)

    WAY 2 Cool 4 School


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  • LowellLowell

    My daughter receives all of her therapy, PT, OT, ST, including Orientation and mobility through the school for the deaf and blind.  They aren't an actual school, at least not where we live.  They are just EI.  We chose to have them because she is eventually going to lose her vision and possibly her hearing due to a genetic syndrome.  She has nystagmus (its pretty bad) and wears glasses for farsightedness.  I would think that even with nystagmus, he should get some therapy.  My DD is delayed, especially in fine motor and they think that's because of her vision problems.  She is getting speech for feeding issues also. I DON'T know how everything is going because we haven't had our first session, just the evals over the last two weeks.  I'm hoping all of this therapy helps her:) Sorry if I didn't answer your questions....I'm still figuring out all of this stuff too!

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  • Abae&RshaAbae&Rsha
    Hi!  I am a teacher of the visually impaired (TVI), working with both EI and school age kiddos.  Dependent on your LOs eye report, he may be able to get services, either via Infants/Toddlers or the School for the Blind.  I believe, from reading other posts, that I may live in the same state as you. If that's the case, MSB is great with their outreach services if your local I/T program does not have a TVI on staff.  However, there is a significant difference between vision therapy and vision services.  It sounds like you are looking more for vision services (vision therapy is a lot of times done by an OT or optometrist, and they work on having the eye works together and visual processing - this is not covered by the school system). Your TVI will help you determine your LOs functional vision and how to maximize it to ensure that he continues to meet developmental milestones.  They will also help you with accommodations/modifications.  Again, MSB will explain all of this to you, but just remember we are teachers, not therapists.  Best of luck and if you have any questions do not hesitate to contact me!
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  • Assembly_ReqdAssembly_Reqd member

    Thanks A&R!

    It is so nice how even the big bad interwebs is a small world....

    I can see how the vision services would not necessarily be covered by I&T. I was just so surprised that another child was getting vision therapy so young. According to our OT his nystagmus was WAY bad and all over the place and was really affecting his milestones.  I guess he is 1 year now and just at the three month development level so there may be other things going on besides vision.

    I am interested in learning more about MSB because it could be in Nate's educational future and I am looking forward to a visit to the campus. We just don't know yet.

    I am also just covering all of my therapy bases so when we see the neurologist again in the summer I can give him a "good mommy" report. ;)

    WAY 2 Cool 4 School


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  • SJC1984SJC1984
    My son had very severe nystagmus, of course he had a brain tumor too.  I assume you've had a CT/MRI to rule that/cysts/pressure problems out (I hope)?  Anyway, DS isn't getting any specific vision therapy, but I think I really need to look into this.  He gets PT.OT.Speech currently.
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  • Assembly_ReqdAssembly_Reqd member

    We had an MRI when he was 5 days old and will have a follow-up one done in July. I am assuming the neurologist is looking for any other issues that may have popped up since then.

    Nate has Partial ACC caused by genetic microdeletions. The deletions have also affected the maturity of his maculars and hearing loss.

    WAY 2 Cool 4 School


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