View Full Version : Not sure where to turn

Robin in Colorado
04-11-2012, 09:00 AM
Deep background: I have 2 nieces who have sensory issues. One was never treated. The other had profound issues, including auditory processing struggles, and was treated for a while. Belle had serious sensory issues, and was treated with a full battery of things for about 2 years (OT, nutritional therapy, music therapy, listening therapy, cranio-sacral therapy). We started her when she was 4. You'd never know now that she had struggles.

Kitty has some sensory issues including visual ground and some other issues. It took us quite a while to figure out how much she was affected - more than we were able to easily see because of her ability to compensate, and because she presented so differently than Belle. We started her in OT in February and the results are good. It's good to hear her articulate how it's helping her. However, because of her age, we've been told not to expect as many of her issues to resolve; we waited too long for some of them. :(

On to Princess: She's a strong leftie. Born left hand presenting, and will go out of her way to use her left hand. When she was little and began copying drawings, she copied things as if she saw them in the mirror and upside down.

She's been taking piano lessons for 2 1/2 years and enjoys it. However, increasingly in the last several months she is struggling to read the music. She can't recognize the notes, even the same not from measure to measure. She can't tell me why. (I ask her if the notes move, etc. and she can't answer.) She is struggling learning to read. (Boyo reads much better than she does.) She puts her face right down on the page and tells me the letters are tiny. She confuses "i" with "a".

So, I took her to the developmental optomitrist. They did a vision check. I sat in there. They asked her to identify letters, and she would do things like identify "O" as "S". She seemed to struggle quite a bit during the exam, and was exhausted after.

They told me they don't "think" she needs a prescription. What! Either she does or she doesn't. Further, they recommended her for a visual evaluation to see if she needs vision therapy. The eval is $545, and if she needs therapy it will be weekly for 6-9 months. Insurance doesn't cover it. (Nor does it cover Kitty's OT.) But they can't guarantee that she needs VT, only after we give them the (to us) large sum for the test.

I could get her an OT eval and see if these issues are sensory related, which I suspect they might be. She has some other behaviors that raise flags for this. If they are, at least I could only be driving to one therapy once a week. But again, the eval is expensive and if that's not the answer, that's a lot of money.

I could check her for Irlen syndrome (http://irlen.com/index.php?s=conferences). My sister was in college when she discovered she had it and it made a huge improvement in her abilities to be treated for it. However, there is no one in our area who does this. Loong drive.

Or perhaps it's neurodevelopmental delay (http://annashousellc.com/). Some of her struggles fall in this category, and our friends who have gone there have seen a profound difference. The eval is again expensive, and the drive is long, but it's monthly instead of weekly.

Some friends are recommending Brain Integration Therapy, (http://www.youtube.com/watch?v=FsqHorpVCos) which is being successful for their children. Again, she could easily fall in this category. Trouble is, so did Kitty, and she was treated for this to no avail.

And of course, we live three minutes from Diane Craft (http://www.dianecraft.org/), who was one of the components in Belle's treatment so many years ago. But she takes forever to get in to.

We're blessed with many avenues, but don't know which to choose. And no one "can" give us any answers or suggestions until we cough up the $500+ for their evaluation.

Any gut reaction from you as you read this?

Rachel Jane
04-11-2012, 09:09 AM
gut reaction? cry. Guess thats not helpful.

I will pray for you and your DH to know which avenue to follow and where you should put your money. Do any of the options just feel right in your gut? Can you eliminate any just by feeling that it is NOT what you need? Try to see the future of your Princess. What is your intuition telling you that will help her to get to that good place?

My MO for making decisions is to do a pro and con, pray, see if DH and I are in agreement and then trust my intuition.

04-11-2012, 09:21 AM
I saw your others post about this and have thought about what I would do in this situation. So, I wonder the following...

1. Is the visual evaluation going to be done by the same people who did the developmental test?

2. Is there a pediatric opthamologist within two hours of you? A pediatric hospital?

So, I probably would not have the evaluation done by the same people. I would look into finding a pediatric opthamologist and going for another evaluation. This seems like an issue with her eyes or visual processing.

Depending on her other issues, I would make a list and then beside each problem, write who can diagnose this and assist with treatment. Maybe sit with a trusted doctor and go over each concern and where to go for help. Then, look at your list and see which specialist can help with the most issues and go there first.

When I started thinking of the possibilities for my oldest ds, I got so confused. Thankfully, we have a lot close by for diagnosis and treatment, but it made the choice SO hard. I want him to be looked at as a whole person, strengths and weaknesses, and I wanted his weaknesses diagnosed and helped if need be.

I dunno, hope that helped.

04-11-2012, 01:28 PM
Hi Robin,
I am no stranger to the overwhelming-ness of all of this. :group:
This was my thought in reading over your situation. How is your relationship with your pediatrician? If he/she referred for the original developmental optometrist can you explain that you were not comfortable with the results and ask for a second referral? If you haven't been through your pediatrician yet about this issue, I would bring your concerns to him/her and see what they recommend as an option. I know my pediatrician is very good about working with us and finding options that our insurance will cover, and they sometimes know of resources I don't know about.
It's not easy at all to make these decisions. In my decisions about which route to take with my sons, I research and research until all of my "wonderings" are answered and I pray for wisdom and directions and follow what I believe makes sense for us, and that includes for our whole family. How many therapies I can realistically do, how much money we can afford to pay.
Also, if there are options you mentioned that your insurance will cover but the waiting list is long, I would definitely start the process of getting on the waiting list for an appointment, so that you would have that for a backup even if the time frame is longer than you would like.
I don't know if that helps at all. I hope you find the help you need.

04-11-2012, 01:48 PM
Are there any agencies in your area that treat a wider range and thus could do the evals all in one? I would be willing to drive quite a way to deal with one set of doctors who talked to each other- if they knew what they were doing of course.

I am not in a position where I could not come up with the $ if needed somehow- so I am advising from that perspective. (It would take a while to pay off on a credit card or we'd have to borrow from elsewhere, but we could do it.) From that position financially, I think I would spend it. I understand that not everyone has those options though.

Are you able to get any services through your school system? I'm not familiar with your state laws on that issue- I think in our state they have to provide services (though they may drag feet) to anyone in the district.

Go online, spread your net broadly looking for SN support boards and forums. Find out if there are oganizations in your state such as ARC or others that have folks who have 'been at this' for years. Find out from the moms who have BTDT where to get the best services for your $. :group: FWIW, when we were looking to diagnose DS' digestive issues I used this technique. I found out who the best in our region was from the ladies online. Then we actually drove to a neighboring state and spent the night to have his scopes performed and evaluated by this guy. If I'm going to spend the time and money, I at least wanted it done by someone with good reviews. ;)

Now, I will admit that we are so busy with oldest Ds right now that I've not investigated (beyond one eye doctor appointment) why DD squints when trying to read. Glasses didn't do the trick, so I probably do need to look further. Guess I'd better start doing my own research online!
Oh, and remember, the doctor who says you got started to late must be forgetting the powers of our God.

maria maria
04-30-2012, 09:27 PM
:group: Pro/Con list as RJ mentioned sounds like a beginning.

Ruling out sensory seems a route to consider since you have two others that have sensory issues. Anything that someone in your family or extended family deal with seem like reasons to rule those things out.(i.e. Irlen syndrome)


Robin in Colorado
04-30-2012, 10:14 PM
I talked to the director of the neuro center where we go for OT with Kitty and went with Belle. She said it sounds to her like Princess' sensory issues are so minor that it's not worth worrying about, that it's likely not a visual issue either, and it's probably a phoneme awareness issue.

She recommends that we work on lots of repetition from now until July and if thing don't improve, then we start working with her on phoneme awareness.