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Saturday, August 22, 2009

PT, Orthotics, CP Rant

I interrupt the generally upbeat tone of this blog to do a bit of ranting.

Finally, two months after Hallie's IEP went into effect, she finally started getting PT at school this week (which is the last week of camp, so now she has to wait another two weeks to see the PT again). The PT took one look at how she walks, runs, climbs stairs (tries to climb, really), jumps, etc and said that she was very concerned about her gait and that she believed that Hallie had mild left hemiparesis and needed orthotics.

This makes me upset and stinking mad. I have been telling everyone who is remotely involved (Early Intervention, Hallie's ped, the developmental pediatrician) that I thought that Hallie needed PT and that I was worried about her left side. I go to the playground and run around with the kid all the time and I know how often she falls, how far she's fallen behind on the milestones, how much it hurts her or tires her out to do a lot of the stuff that kids her age can typically do, etc etc.

The response I've gotten so far has been a great big thud. Early Intervention (birth to three) responded by saying that it would take too long to get a PT evaluation (this was about six months before she aged out of the system) and that we should just add another session of OT so that the OT could work on gross motor skills (I guess she assumes that all therapists are interchangeable and that PT doesn't require additional training...quite an assumption to make). The pediatrician, who spends fifteen minutes with us per visit and most of it involves Hallie sitting on an exam table or my lap, said he saw nothing wrong with her gait when he watched her walk up and down the hall for fifteen seconds (I pointed out to no avail that walking up and down the hall is not one of Hallie's problems). The developmental pediatrician watched Hallie walk up and down the hall at her office for thirty seconds and came to the same conclusion. My request that both of them watch her on the stairs went unheeded.

Finally, after yesterday's pronouncement, I got referrals for neurology and orthopedics from Hallie's pediatrician who changed his tone a bit, saying that 'of course she's at risk for these problems'--meaning cerebral palsy, ultimately--but that he wouldn't want to just get one opinion on whether she has CP but that we needed a second, confirming opinion before he would buy it. He's got a bit of a problem with Hallie being labeled -- which also pisses me off. He was dead set against her having an aide or services in the classroom because that would make her seem different and essentially wanted us to enroll Hallie in any old school on her own to see how she'd do without help. He said that he would (reluctantly) provide us with a neurology referral if we insisted but that he didn't think that we needed to go down this route.

All of this seems to us to be tantamount to throwing Hallie to the wolves--something Sharon and I are not now and not ever willing to do. The kids at school don't care that Hallie has an aide and the therapists who visit spend time with all the kids so Hallie doesn't stand out. And at least this way she is not overlooked and learning stuff.

It's a good thing that Sharon and I always take medical advice with a grain of salt and realize that we know Hallie better than any one professional whom she sees knows her. And it's a good thing that Sharon and I are in relentless pursuit of the best possible care for our children.

But it makes me so angry that no one listens to us--we know what's going on with our kid and if we notice a problem, we're not making it up or looking for attention. The issues we've seen are very real and I just wish that the professionals would take us seriously and that everything wasn't such a fight.

So the upshot is that we will make appointments to see an orthopedist down at DuPont in Wilmington and a neurologist over at CHOP (both recommended by our pediatrician; while we don't think he's as proactive as he needs to be, his referrals have proven to be stellar). And we will do what we need to do to ensure that Hallie can keep up with her peers to the fullest extent possible. But the whole thing sucks tremendously and I hate it that the other shoe (or orthotic) has dropped yet again and that we are most likely cruising for yet another diagnosis in the near future.

On other, happier notes: stay tuned for an update about Hallie's excellent performance at her camp (preschool) end-of-session show; the positive news concerning Hallie's early attempts at potty training (courtesy of Hallie's excellent school aide); and how our new feeding approach is going. In the midst of all of our concerns about gross motor skills and CP it's essential to remember how far Hallie has come. Her progress is substantial, and as far as I'm concerned, the sky is the limit for her. She is talking A LOT more, making friends, not vomiting as much (157 days and counting...), and is the best little three year old two moms could possibly want.


Katie said...

I'm so sorry to hear how frustrating all this has been for you! I can't remember if I have commented on your journal before, but I am a school psychologist that works at a preschool for children with special needs. The fact that they wouldn't give Hallie a PT eval because it would take too long is appalling to me. The EI kids we serve can get an eval within a couple of weeks after it is requested.

I was so thrilled to read that she is doing well in preschool! I love seeing the positive changes in the kids I serve as well. I like reading your blog to see a parent's perspective on things. Keeps me in check. :)

BusyLizzyMom said...

We have said this over and over, that it never ends there is always something to worry about that our kids are never really out of the woods. I am sorry you have to continue to go through so much and to have to fight to get what Hallie needs. We had the same problem with her last 2 peds and I even got her kicked out of the last practice as I got a referal on my own as Elizabeth was not walking at 2.5 years. Hopefully orthotics will help with her stability, with Elizabeth's orthotics she is really unable to safely walk. Is Hallie tight on her Lt. side or loose (if you bend her foot upwards is there resistance). If you ever want to talk please call or e-mail me, we have been though so many similar things with our girls. Hopefully with all this you can get some PT for Hallie. Do you have private ins. to get PT earlier? We do both private and public PT.

Sammie said...

Nates starts Kindergarten tomm.. they are supposed to do his eval for OT and PT soon... I hope I don't have issues with them it just stinks when I read things like this..

Hug to you all!

Kirsten Wood said...

That stinks!!!! I am so sorry you have so often run into the bad side of the medical profession. It doesn't matter whether it's overtreatment or undertreatment: it is just rotten when doctors won't listen. I hope that this new round of visits produces something useful: not labels, but real treatments and/or insights that help Hallie be everything she can be and wants to be. ....And someday, you and Sharon should get a medal. You already have the best reward, which is Hallie herself, but you deserve a medal from the medical profession as well, or maybe parents-of-the-year, or something! Lots of love from Miami.

Oh, and thank you thank you thank you for the adorable outfits! I am way behind on my formal thank-you notes, but one will come eventually.

Sara Cohen said...

I am sorry about your frustrations and wish that this was easier...if anyone needs a break from all of "this" it's the two of you. My ped (at the same practice is wonderful and is almost more pro-active than I want him to be. Would you consider switching? I am glad that you got the referrals you do know your child, as does any mother, and you are doing exactly what's best for her. Glad she is doing well in school. Keep up the good work! ps-love the new blog look!