09-01-2010, 10:31 PM | #676 |
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Our nightmare summer from hell is almost over: we are back on the surgery schedule for a tonsillectomy. And when I say nightmare from hell I really mean it: at his very worst--i.e., about 4 weeks spanning July and August--we were experiencing roughly 5 tantrums a day, each about 30 minutes. The level of aggression during these meant that my only option was to lay with him on the bed, restraining him in a hug until he calmed down again. Meanwhile, my 2-year-old daughter basically gets to sit there and watch her mother pin her screaming brother to the bed. I'm sure that's been fantastic for her emotional development as well.
This whole time, his bad days and worse days have been directly correlated to the size of his tonsils. He tells me every single day that his throat hurts, and that he wants to go back to the hospital. He then reiterates all the details that he remembers from the last time he went to the hospital for the adenoidectomy--the pajamas he wore, the nurses he saw, the toys in the waiting room, the hospital pajamas, the oral medication, the IV, the special mask... and the feeling better. Today he basically promised me in broken phrases that if I would let him have another IV, he would be calm and not fuss at all. But today we finally saw our new doctor, who gets it. We have (yet another) antibiotic prescription for symptom relief until the surgery on the 15th. In addition, she has ordered x-rays for his sinuses, because she suspects that a chronic sinus infection is actually what keeps re-seeding his tonsils after every round of antibiotics. If the x-rays confirm that, she will also do a sinus wash during the surgery, which involves (highlight for grossness) sucking all the pus out of his sinuses with a giant needle, then flushing them with an antibiotic fluid. This woman is my hero. I almost started crying in her office when she dismissively said, "Of course I believe you. We're going to help him." |
09-01-2010, 10:54 PM | #677 |
has a second hand user title
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You are the most awesome woman
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09-01-2010, 11:03 PM | #678 |
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Well, she's got no choice, she's doing what she has to do... but she shouldn't have to do it, and wouldn't, if the mother fucking doctor did his god damned job.
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09-01-2010, 11:33 PM | #679 |
~~Life is either a daring adventure or nothing.~~
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I feel for you clodfobble. After reading your post,tired for you too. I am glad for the good news though, I am sorry for the hassle and the pain you all have to go through just to get to the right outcome.
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09-02-2010, 06:29 AM | #680 |
still says videotape
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You are amazing. Your chronicles are helping me think about how I need to relate to parents, thank you for that. g
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09-02-2010, 10:59 AM | #681 |
barely disguised asshole, keeper of all that is holy.
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I was going to do this in a pm then decided public kudos were/are well deserved.
Clod - I'm constantly amazed at all the challenges you unwaveringly (sp) overcome. Your posts have led me to keep keep track of those who are really helping vs those who are just going through the motions. The latter are systematically removed and replaced. I really don't know how else to say this, but you repeatedly inspire me to keep on fighting when everything I'm dealing with seems so overwhelming and my efforts futile. Thank YOU.
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09-02-2010, 05:25 PM | #682 | ||
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Quote:
Quote:
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09-02-2010, 05:46 PM | #683 |
™
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Thanks for posting that. I'm glad to have read it. That should be handed around to every parent in every class with a special needs kid.
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09-02-2010, 07:13 PM | #684 |
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In less than 5 years, that will be every class.
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09-02-2010, 07:17 PM | #685 |
Come on, cat.
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Dr. Jeffrey Kahn of Austin Ear Nose & Throat should be made aware of what his incompetence has caused in some way.
You're a fighter Clod, I admire the crap out of ya.
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09-02-2010, 08:00 PM | #686 |
barely disguised asshole, keeper of all that is holy.
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Damn right and next time you see your friend tell her that I'd like to share her letter with some people out my way. PM if you prefer.
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"like strapping a pillow on a bull in a china shop" Bullitt |
09-02-2010, 10:16 PM | #687 |
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She's already said she's happy to share it with anyone who needs to read it, or I wouldn't have posted it on the open internet. Feel free to pass it on wherever necessary.
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09-10-2010, 04:25 PM | #688 | |
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Just when you think you know at least one tiny thing for sure...
Fragile X is one of the few testable, confirmed genetic diseases, present from birth, that accounts for approximately 5% of autism cases. Some parents do not try biomedical treatments because they have had the genetic testing and know for sure their child has Fragile X, and many more parents assume they shouldn't bother with the genetic testing because their child is responding to biomedical treatments. Except it turns out that, quite surprisingly, the symptoms of Fragile X actually respond to antibiotics. Quote:
1.) If a parent says something is working, don't fucking dismiss them. Figure out why it's working. 2.) Overuse of antibiotics may have even more significant implications for our population beyond breeding superbugs. |
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09-14-2010, 12:41 PM | #689 |
Goon Squad Leader
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Dear Clodfobble:
I'm sorry I have taken so long to acknowledge your great work here and your even greater work as a Mom. You're awesome.
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09-14-2010, 05:09 PM | #690 |
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I'm tired of being awesome. I want to be normal, and smile, and sleep on occasion.
Sleep would be especially useful tonight, as I will almost assuredly be pulling an all-nighter in the hospital tomorrow night. If I'm lucky, they'll decide non-stop screaming is bad for his throat healing, and sedate him again in the evening. |
Tags |
autism, food intolerance |
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