— Gilda Radner
I just found this quote when I went to update my facebook profile - to save myself from apparent identity theft :) Anyway... how truly fitting.
So, this week has been another interesting one in the life of Makenna. Last Friday, she had an allergic reaction to cashews. We took her to the immediate care and she was fine. We have an appointment with an allergist next week, so we'll know more then. As Dave pointed out at the doctor's office... At least with her everything ends up better than it started :) That is, indeed, a good thing!
Her allergic reaction got my mind going again, and it brought up a lingering issue in her speech. She has had trouble with her 's' and 'z' sound. She forms them completely in her nose.... if you plug her nose, she CANNOT say an 's' or 'z'. Not at all. When she makes them in normal speech they sound somewhat like a snort. I can't even reproduce the sound. I have no idea how she does it. You can google it ~ it comes up as a phoneme specific nasal emission (PSNE). My mom and I both came up with the same description. Then came the hard part...finding a doctor who agreed.
Her ENT had checked her out at her last appointment and said there wasn't a structural reason she should be making the noise. He seemed to feel she would 'grow out of it'. This sounds a lot like the 'wait and see' we were told with the scoli... not wise advice :)
So, I was going to pursue it on my own. Makenna has aged out of the early childhood program in Indiana, so I had her speech tested through the local school system in April/May. The speech therapist there had never heard that sound before, but still felt she didn't qualify for any speech therapy because 's' and 'z' sounds are not expected to be correct until a child is much older. Waste of Time.
With that, I had put the whole thing on the back burner until last week. I was wondering if maybe an underlying allergy (on a daily basis) may have something to do with her speech as well. Maybe her throat was constantly irritated...
So I started researching a link between PSNE and allergies. I came across a blog of another mother perplexed with her son's speech and frustrated with no answers. This same predicament keeps arriving at my door! I also found some new research articles and information which led me to e-mail a doctor in Denver and Cincinnati.
Trust me, I realize how crazy this whole thing sounds. "Why does this crazy lady keep e-mailing doctors about her kid?" "Don't you trust your own physicians?". I can hear it... you have to be asking yourself these questions; because I do, too. But the truth of the matter is: Makenna is unique. That was the very kind answer I got from the doctor in Denver. I had to carefully explain to these people why someone in Indiana would be e-mailing half a country away about their 3 year old daughter's speech. But the literature that I read listed all these things that could cause such a speech pattern...
Ear infections. Check.
Cranial Nerve Palsies. Check.
But for each of these things, she has a different doctor. There isn't a captain for the boat. I have to be the captain. And there are so many things standing in your way ~ as a civilian captain. I know she needs to see a speech therapist. But she needs to see a seasoned speech therapist you has experience with this one intricate speech problem. How do you find one of those? I had already been told by a speech therapist that there wasn't a problem... how do I tell them that I did a five minute google search and found the problem?
Anyway, both doctors e-mailed me right back. To be fair (to me), I did e-mail a doctor here at IU med center as well. I have not heard back from him yet. The doctor in Denver actually referred me to the doctor in Cincinnati ~ even without knowing I had already e-mailed her:) Anyway, they both gave me excellent guidance and agreed that given Makenna's "unique" (I like that) medical history, it was important to take a careful look at what may be causing the speech problem and how to address it.
We will be making a trip to see the doctor in Cincinnati. I had already had an appointment set up with a speech therapist at a local 'big' hospital ~ I have since cancelled it. We have not yet met our deductible on therapy services. The hospital here was going to charge $363 for an evaluation... even though we already know what the issue is. The doctor in Cincinnati, sent me tips on what to do with Makenna ~ including video of a little boy with the same issue and how to do the exercises. I'm pretty much convinced that any issues in our health care system are 100% insurance based. You can find great doctors. You just have to get through the red tape.