Gifted Issues Discussion homepage Forums Twice Exceptional Visual processing help w/more intensive treatment?

HELP!!!

Behavioral optometrist recently assessed 2e/pg ds8's visual deficits. On the subtest of the Test of Visual Perceptual Skills, he had a standard score of 3 which is 1st percentile. On other subtests (visual tracking to visual discrimination), he ranged from 22nd to 38th percentile.

Ds had vision therapy for over 2 years between 3.5 and 6 yrs old. He's also had loads of other therapies (pt, ot, water therapy, neurofeedback) since then. On previous visual tests, ds was in vision therapy and, believe it or not, no one picked up problems with the visual working memory. On a Beery test when he was 5.5 yrs old, he performed at a 9-yr-old level and, of course, didn't qualify for ot then as a result.

Behavioral optometrist acknowledges that ds's visual deficits are partly neurologically-based but then referred us to a chiropractor for physical imbalances before prescribing ambient lens. And though ds is currently in neurofeedback and has already had about 70 sessions, I'm beginning to wonder whether or not we should seek help elsewhere. I'm questioning whether the vision therapy is enough since ds still has the visual deficits despite over two years of vt when he was younger.

Neurofeedback claims that they can help with ds's visual deficits, in particular with his visual memory. However, after ds received the the low scores after 60+ sessions of neuro, I'm getting discouraged. To be fair, neurofeedback providers were not entirely aware of the visual deficits until we saw the behavioral optometrist about a month ago. After doing some research, I came across the neuro optometry field and wonder if they may provide some more help and direction.

Anyone have any suggestions on how to tackle the visual deficits when vt alone may not be enough? Are there other treatments for visual deficits? Does anyone have any suggestions on who to contact? I plan on contacting Dr. Lovecky again (who we've previously seen), Dr. Silverman, and my son's former behavioral optometrist, but am open to contacting others.

Thanks. And if anyone has any tips on coping and treating a child that scores within the 1st and 99% percent, I'd love to hear from you. This is mind boggling to me.

OH CDfox I am so sorry! I so wish I had some info or advice to help. I feel for you b/c my guy has been in vision therapy over a year now. He still moves/tilts his head weird while reading (though reading seems much easier now and the eye strain is much less). But heavily visual tasks really tax him. How old is he now? Is it that he is regressing? My son's visual memory seems to test quite well on those tests but his visual sequential memory is in the toilet (and appears to be staying there); I think it is what causes his dysgraphia. Working on reversals for years now and nothing seems to help. Anyway, I'll be following along here hoping you get some info. And please update us with what Dr. Lovecky, Dr. Silverman, and the former behavioral optometrist say!

I know for certain strabismus there is surgery

Hmmmm. I've no experience to offer regarding the neurofeedback. Regarding the VT, my son did it between 1-2 grade, and then needed it again for different issues in 4th grade. We've been "done" again for almost a year now, and I'm still seeing the effects of it manifest in various ways. I think that even when the neuropathways are built through the VT, they take some time to build up strength.

It sounds like you are doing the right things and asking the right questions. Sorry I don't have a specific suggestion, but do want to offer moral support. Keep going and keep up the faith that you'll find something that will help.

Wow. Such a wonderful response! This is so encouraging and welcoming. I'm so sorry that others have been through this too, but it's so comforting to me - and I'm sure others for the support. Very much appreciated. I knew I could count on this board!

Last night after I wrote this message and was researching online, I came across the diagnosis of cortical visual impairment:

http://www.afb.org/info/living-with...-injury-and-neurological-vision-loss/123

http://www.aph.org/cvi/define.html

I had never heard of this diagnosis. NOBODY has ever mentioned this diagnosis as a possibility to us - NEVER. And I've seen some pretty top people, including top US/world neurosurgeons.

Now, ds was born with severe plagiocephaly (both flattening and facial asymmetry - his head looked like a parallelogram...ugh, math) and torticollis (and etc. - hypotonia, severe sensory, dyspraxia, global developmental ideas - get the idea?). He wore two Doc Band helmets as a baby for the plagio; he had neck surgery for the tort at 18 months. Last August, he started neurofeedback for ADHD-like symptoms; we were told that the plagio/tort was, in fact, a tbi and neck injury (traumatic brain injury and neck injury).

Today, I phoned the department that treats cortical visual impairments at Children's Hospital in Boston. What an interesting conversation that was. I said that we keep getting blown off from neurosurgeons who dismiss the plagio being a tbi. I said that we keep getting bounced around from behavioral optometrists and ophthalmologists and that the behavioral optometrists don't seem to have a clue about how to pursue treating brain-based vision except with vision therapy.

So I'm just really relieved that I 1) found someone, 2) found perhaps a department who can help at CH, 3) got an appointment, and 4) I can pepper the doctor with questions!

Neurofeedback is supposed to help with visual deficits. And I'm sure it does in many cases. However, with my son's case and our rapidly dwindling financial resources, I'm eager for a second opinion or someone, somewhere to help and provide more guidance.

Ds was in neurofeedback from August to May and then took a break until November. At that point, ds was head tilting again, which I assumed was due to the torticollis being both visual/ neurologically-based and since ds was becoming more dry at night than wet and had finished pre-algebra/algebra using college textbooks within 2.5 months (which would do my head in too). He went back into water therapy to keep his head midline and body aligned too. So yes, he had regressed due to a number of issues (cognitive gains, growth spurt, nighttime pottying, etc.). I've been told that we might be facing this head tilting and other issues on/off. I've also been advised to stay on top of it up to puberty so ds's head/body stays in alignment.

When we saw Dr. Lovecky in June 2012, she asked if I had considered medication for the ADHD-like symptoms. I immediately asked about neurofeedback based on this board! We never discussed medications again. She believed that neurofeedback might address ds's and that he might need vt again after doing some nft - which is why we took ds to a behavioral optometrist a month ago.

Wish this journey was a tad easier! Jeez.

Thanks, thanks, thanks so much.

My head was full after the behavioral optometrist finally e-mailed the December evaluation to us this Wed. My head was starting to explode between what the behavioral optometrist says/ recommends and has referred us to and what others (neurofeedback, ophthalmologists, neurosurgeon, pt/water therapists) have said/ recommended and referred us to within the last few months.

You can easily go crazy trying to figure these things out and what's what. I have. One professional says one thing; another says something else. It can be hard to make heads or tails out when there isn't a clearly demarcated approach or treatment. And the situation gets exacerbated when everyone seems to be recommending different therapies that can be costly and out-of-pocket expenses. One recommended we look into the sensory learning program (http://www.sensorylearning.com/program.php), but that's $3,000 and it's doubtful whether the insurance would cover any of it or be really what ds needs at this point in time.

It seems to me that there's very few professionals who have the expertise and knowledge with brain-based visual issues. This is just crazy at the moment with getting help and/or the right diagnosis. Hopefully, this will change soon.

I will continue update here on what's going on and what anyone (ie. Dr. Lovecky or others) say/recommend, etc.