Okay, so after waiting two weeks since the hearing screening, we were finally seen at the local clinic. The ARNP sticks an otoscope in Ethan's ears and says, "Actually, there's no wax in there. But he does have raging ear infections in both ears." She scribbles off a prescription for antibiotics, sets an appointment for a month from now for a recheck, hands me a pamphlet I've already gotten three copies of from various medical professionals on why I'm a bad parent for not immunizing, and sends me on my confused way.
I'm paying cash for all this. Still no answers. Tim and I both had CHRONIC ear infections as kids. Tim had tubes put in, and they wanted to do the same to me. I so do not want to start on that road again- I don't want the little guy to spend his entire young life on antibiotics like we did. I built up a huge tolerance to the stuff, suffered from yeast infections, etc etc. and still got an ear infection every time a foul bug showed its face in our house.
So that's my answer? I still don't know why he can't talk. If I'm so smart, why do I feel so incredibly stupid all the time? What if they're wrong? These are the same brilliant folks who smeared antiseptic cream all over five-day-old Ethan's life-threatening strep infection and tried to send me on my merry way. Thank God I insisted on a culture. By insisted I mean refused to leave until he showed with a new blister/bullae and shouted about it until they HAD to "humour" me. Turned out he could have been dead inside a week had it gone untreated. (Read more about Staphylococcal Scalded Skin Syndrome here.) I did my homework, I knew it was a big deal, I knew what to fight for.
I've done homework. I know it's a big deal. I have no idea what to fight for. I'm scared, and confused, and I feel like every day that I allow to pass I'm losing options. Everybody has an opinion on this, but no one knows Ethan like Tim and I do. I feel that at this point, if I had him thoroughly examined and documented, if I managed to find a speech-language pathologist and a group of various therapists who were experienced in administering tests to non-verbal toddlers somewhere four hours' drive from here, and somehow found a way to pay for all of that, their diagnosis would be PDD-NOS. (See the difference between this and clinical autism here. Ethan has several issues in groups 2. Communication and 3. Behaviours and Interests but none in group 1. Social, which is the main indicative group for autism or Asperger's.) There are no real answers for PDD-NOS. That's the "not otherwise specified" bit. Ruefully, I laugh- but there's no humor in what I'm feeling. The only answer to the questions I have are more questions.
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And, you know what is even more frustrating? If you do track down those SLPs and therapists and testers and you shell out a lot of money and you walk away with an "official" PDD-NOS diagnosis and the satisfaction that you knew it all along, you will be... just exactly where you are right now. You're not likely to have any better idea of what to do next, what protocols or interventions to try, what resources to seek out, what expectations to have. You'll just have six letters and a whole lot of questions, which will be met with answers like "Every kid with PDD-NOS is different. Ethan is lucky to have you. Just keep doing what you're doing and I have great hope for the future." Um, yeah, thanks.
After giving the "established" medical world several shots at helping ("If you want to try medication, we could go that route... or we can just wait and see how he progresses.") I've been doing a lot of research into alternative medical interventions and are starting to test the waters there. Have you ever heard of cranio-sacral therapy? We've just started it with Bud, but I have a friend whose kids are neuro-typical and she brings them for CST to fight ear infections (with terrific success!) It might be worth looking into for both issues.
Great link on PDD-NOS, by the way. I've never seen it laid out so clearly before!
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