Letter to EI, seeking evaluation

[Violet2]

I don't know why I'm sharing this. I think I just want some of the more experienced mommas to give it a glance and let me know if there's any tweak you would give or if I'm making some major gaffe somewhere.

This is in answer to 'what else do you want us to know about your child'

DD (3 1/2) has had problems with her left leg since she started walking. It would often (and still does sometimes) buckle under her, taking her down.  However, it did not register as abnormal to us until we realized she wasn’t alternating her legs on stairs and was behind on that milestone.

In fact, we noticed she used the right leg exclusively on stairs and was still falling a lot, often for no reason. When I first encouraged her to use her left leg on the stairs, she couldn’t ‘find’ her leg—I could see her trying to figure out how to get her leg to move and failing-- and, when she finally did, it wouldn’t hold her weight.

I took her to the pediatrician in Spring 2010 and she referred us to a neurologist (who I’m looking to replace). Neurologically she seems fine. There’s no diagnosis to date.

But she has observable weakness in the left leg and regresses without physical therapy. She’s had several falls down stairs, one quite scary. She still falls for no reason, but with regular therapy it’s not as prevalent. She can alternate legs on stairs, but chooses not to unless prompted by us. She refuses to alternate coming down stairs for us, but the PT can coax her to do it.

Left on her own, she will avoid use of the left leg.

She appears fine, superficially, until you watch closely and realize she favors her right leg and does little with the left. She can cover pretty well using the right and there are no stairs at organized activities like preschool so it doesn’t stand out.

Due to the noise phobia and fear of tape/band-aids she’s exhibited at PT, it’s been suggested we seek an OT evaluation for sensory issues. On the parent evaluation the PT had me fill out, she registers as having sensory issues for sound. Our ped recommended contacting First Step.

Regarding noise,  concerts and movies are a problem. We have even used noise reduction head phones which have not been enough. She covers her ears a lot and says “too loud.” At places that are loud to her, she immediately wants to go home and will cry or ask to go to the bathroom repeatedly as a means of escape.

Fine motor, she is still working on mastering things like door knobs, scissors, peeling stickers and getting puzzle pieces to fit. I feel that she is behind in this area.

Behaviorally if she can’t do it, she won’t try.  She frustrates very easily and gives up, refuses to participate, tantrums etc…  I am currently seeking out ways to help her manage this and ordered a book called “Try and Stick With It” to read with her.

Cognitively, she knows both upper and lower case letters as well as phonic sounds. She is reading a little bit and can count to 20. She can count objects up to 10 reliably about 85% of the time—occasionally she skips an item, which goes in hand with her visual discretion lagging behind other skills a bit.  Knows her colors, shapes etc… Due to PT, knows left and right as well.

At the recommendation of the PT, we’ve also enrolled her in soccer, swimming, dance and ice skating. Except for swimming, she is observably behind her peers.

Edited by Violet2 - 4/22/11 at 7:42am

[Aegis]

I think I would try to get an occupational therapist.  What you shared about your daughter's leg sounds like an issue with her proprioception sense.  It's not a well-known sense, and I don't know if it would show up on a neurologist's radar. 

Basically, proprioception is awareness of our body position in space.  Here's an excerpt from *"Discover Proprioception: A 'Hidden' Sense": "When our proprioceptive sense works well, we make continual, automatic adjustments in our position.  This sense helps us to stay in an optimal position in a chair; to hold utensils such as a pen or fork in the right way; to judge how to maneuver through space so that we don't run into things; to know how far to stand away from people so we're not too close or too far; to plan how much pressure to exert so we don't break a pencil lead or a toy; and to change actions that were not successful, such as the throw of a ball that was off target or a dive that turned into a belly flop.

"Since proprioception helps us with such basic functions, a problem in this system can cause a great deal of trouble.  What often happens is the child has to pay attention to things that should happen automatically.  He may also have to use vision to compensate and "figure out" how to make adjustments.  This can take a lot of energy.  The child may feel clumsy, frustrated and even fearful in some situations.  For example, it may be very scary to walk down stairs if you're not sure where your feet are.

"The proprioceptive system is activated through push/pull type activities, jumping and activities that involve weight and deep pressure or firm touch.  This kind of sensation is often calming and may be helpful to a child who becomes easily disorganized."

It makes sense that your daughter would be more adept at swimming than the other sports since she would feel water around her constantly.  That sort of sensory input would help her to know where her body is.

My son sees an occupational therapist (she gave me this article) for a myriad of reasons, and proprioception is one of those reasons.  He used to have sound sensitivity, though can now tolerate most noises.  His fine motor skills are pretty good, but he clearly has to concentrate when doing more gross motor activities.  We live in a rancher, and about 2 weeks ago, we were at an appointment in a multi-story building when I noticed that he won't lead with his right leg when going down stairs.  Now we look for opportunities for him to practice, and it can be heartbreaking sometimes watching him concentrate on coordinating his leg.  It only happens with stairs; most would NEVER guess that he struggled with this.  At this point, he still needs prompting from time to time to use his right leg, but sometimes he'll do it on his own.  We're getting there with practice!

I hope this was able to provide some help or at least offer up one theory for you to check out.  Best wishes to you and your daughter!

*Mailloux, Zoe. "Discover Proprioception: A "Hidden" Sense." Sensory Integration Quarterly Winter (1993-94): 12.

Edited by Aegis - 4/23/11 at 8:49pm

[LynnS6]

I definitely agree that it sounds something sensory going on (the noise phobia and the fine motor issues and the giving up because she can't do it sound very much like our son who had sensory processing disorder). The books I like best are: The Out of Sync Child and Sensational Kids. One thing I would caution is that she's still pretty young -- some things like alternating feet aren't mastered by some kids until 4. And be cautious with the "if she can't do it, she won't try" -- for our son, I've seen as he ages, that it usually means that's more than he can't do it. It means that he can't even figure out where to begin. Occupational therapy helped a lot (they worked a lot on motor planning), but he still has that issue with things like puzzles and tangrams. He needed a lot more scaffolding and breaking things down into manageable steps than my other child. We also spent a lot of time reminding him of how 6 months ago he couldn't do X, but now he can. So, don't despair -- it may not be so much personality as it is (a) a phase that a lot of 3 year olds go through and (b) the fact that her body isn't doing what she wants it to and she's too young to be able to explain that. I was convinced that our son was going to give up on everything at age 3. He's now 9 (turning 10 this week) and I'm currently impressed with how much he works.

However, the left leg thing would really concern me, as it sounds neurological. The fact that it's only her left leg and that it seems to give way spontaneously would concern me. I've never heard of an SPD child who has trouble with only one side of the body. Has her spinal column been checked? Could she have something like a tethered cord? What about mild cerebral palsy? Have her joints been checked? Sometimes juvenile arthritis can cause pain/weakness. However, I don't know enough about any of these conditions to do more than mention them. There are probably half a dozen other things that you should have checked out. Since your current neuro couldn't find anything, but the problems aren't going away, I think finding a new one/second opinion might be a good idea.

[Aufilia]

Why are you writing a letter to EI?  Have you called them?  When I wanted an EI evaluation for my son I just called and asked for one.  It took like 2 minutes to set up an appointment on the phone.

The letter might be useful for your evaluator, but I don't know that you need it to get an eval.

I agree with the previous posters that I would seek an occupational therapy evaluation (at 3 1/2, I think you might need to contact your school district, but call EI first and ask what their age cut-off is... it's on the 3rd birthday here). 

But I would also continue to seek medical evaluation. Physical therapy might help with the leg thing, but it does sound more like a neurological or physical/medical issue to me...