What's my next step?

[goodmomma76]

DD is 24 months.  She is currently in OT and PT. She starts speech therapy next month.  She got fitted for Sure Step orthotics yesterday, she is pronating.  We know that she has some sensory issues, she gags on certain textures, and she can't stand to be in wet clothes at all.  She still has reflux.  She is finally on the charts for height and weight I think!  She is up to about 23 pounds, and 30 inches!  She was born at 37 weeks, after not having grown in utero for 3 weeks before that.  She has maybe 10 words, she had more but started regressing about the time we discovered she had fluid behind her ears.  They put tubes in thinking that was why she tested at a total hearing loss. But the tubes haven't helped.  And I know that there are some days she still doesn't hear anything, although I also know that she does hear some things, I haven't been able to figure out the pattern yet.  We go back Thursday to have her hearing checked again, and to check the tubes. There is no drainage from the tubes, so I wonder if they were really necessary, she never really had ear infections, but the were concerned about the hearing and the fluid.  We were hoping that the tubes would also help her balance, she doesn't have any!  She stumbles and falls very, very frequently.  When she stops walking, she struggles to maintain her balance, like falling forward then back, until she finally is able to steady herself and she often leans on something to keep from falling.  She frequently asks to be carried rather than walk a long (to her) distance, such as 20 feet.  She has pretty good fine motor skills, she holds a crayon correctly, and she loves to pour things.  She's very loving and does look at you and hug and everything.  She can do a puzzle pretty well, she matches up the shapes.  She doesn't follow general directions at all.  But, given all her falling it doesn't slow her down, she tries to do everything that other kids are doing.  It might take her twice as long because she stumbles or falls the whole way, but she doesn't give up.  I hate that its so hard for her.  So I am wondering this, over the next few weeks, I will have meetings with her ped, her case coordinator, her asthma doc at riley(OH yeah, she has asthma and was recently hospitalized for that for the first time), the hearing doc, and getting her orthotics.  I am seriously thinking I need to ask for a formal evaluation by some kind of specialist, but what kind?  What do I tell them?  The OT and the PT are both puzzled.  They're calling her their mystery, it may be ok for them but I feel like I should be doing something, like figuring out what is causing all of this, so we can get the specific appropriate help that she needs as soon as possible.  I would love your thoughts and suggestions. 

[beenmum]

How is her eyesight? Is she hypotonic?

If she has fluid in her ears, that can cause balance issues.

However, if she has some pronation then she may have some overall leg/ankle and hip instability. Also, any gait instability will cause general muscle aches and fatigue. So that could by why she wants to be carried.

Genetics may be helpful. They can do a level one check on her chromosomes and then go a few levels deeper to check for micro deletions.

When you have multiple issues, its not unrealitic to ask for a genetic eval.

[goodmomma76]

Her eyesight was checked about 2 months ago, and was fine.  They said she has low tone in her feet, causing the pronation, and she had low tone in her core, but the PT has strengthened that quite a bit.

She had fluid in her ears both times she saw the ENT, and it wasn't cleared up with antibiotics, and she had an allergic reaction the the ABX.  So he put tubes in to alleviate the fluid, but also hoping to help her balance issues considerably, but it didn't.  And there isn't fluid draining out, so I'm not sure how much fluid there ever was in there. 

She does throw her right leg out some when she walks, I am hoping that the orthotics she's getting will help with her overall stability. http://www.surestep.net/smo.php  This is what she's getting.  FYI

So, if I ask her pedi for a genetics eval, will he refer me to a specialist, is that where I go?  Is it possible that she's just got some low tone, and hearing and it's not all related?  I want to be realistic and push for what she needs, and I want to be well informed when I talk to the docs about it, so I can make good decisions, not just trust them...