- Joined
- Aug 10, 2011
- Messages
- 1,350
She's up on a higher dose of 6MP now and still seems to be doing well on it, but she's also on 10/5mg of Prednisone and in the past, even that tiny amount has kept her from flaring and it's when we reach 0 that all hell breaks loose again.
As the prednisone is lowered, her shoulders, back, hips, knees, ankles, and wrists are bothering her again. They tell us it's not arthritis and they don't even think it's related to her Crohn's. She never had this problem before her severe Remicade reaction but the doctors insist it couldn't have been that despite the fact that the advent of this pain was the same day of the reaction.
The rheumatologist diagnosed neuropathic pain and prescribed PT and TENS therapy, but there's a problem with that diagnosis: neuropathic pain CAN'T be treated with corticosteroids, so WHY does her pain go away when she's on them??! She had MANY, MANY X-rays and MRIs last year and they say there's no inflammation or damage in any of them, but she wasn't in much pain when they were taken, either. I'm starting to think we're never going to know what causes it. She claims it's becoming less severe and she's able to be more active at school, but I wonder whether she's just building up a tolerance.
Izzy FINALLY got the sedated hearing test (Auditory Brainstem Response) that we've been pushing for to prove once and for all, conclusively, whether she has a hearing problem (she could still have auditory processing disorder, but we won't know for years). It was negative, she can hear. This is bittersweet news. She has a "diagnosis" of autism, but that was given to us by a speech pathologist who only saw her for 45 minutes. We think she might have suffered neurological damage from childhood jaundice but can't be sure. If there is damage, it's too "mild" to diagnose, so she gets "autism" instead. Izzy can barely speak and the words she does say are garbled and hard to understand. She has trouble with tasks like putting shoes on or taking them off, dressing, undressing, walking on uneven terrain... all things that she should be able to do, or at least attempt successfully around 50% of the time, at age 2. We have seen neurologists, audiologists, and now we've resigned ourselves to just taking her to speech and behavioral therapy for autism in the absence of another diagnosis. Izzy is a happy, affectionate, smilling, beautiful girl who LOVES hugs and kisses, loves to "sing", dance, play peek-a-boo, is incredibly imaginative and acts out spontaneous, imaginary scenes with her toys. If it's Autism, it must be incredibly MILD autism.
We took her to a neurologist on Tuesday to show him a video of Izzy having some sort of fit. In the middle of dinner a few weeks ago, she started panicking and didn't seem to be able to swallow the food in her mouth. She almost choked. She couldn't spit it out, either, we had to remove it for her. We took her in the living room to calm down, and her tongue kept lolling out of her mouth for almost a half an hour. I posted the video on here a little while ago.
The neurologist took a look at the video, seemed interested, started to speculate under his breath about a few things, then looked at her chart and saw the "autism" diagnosis in her record and immediately stopped and said "Oh, well, this is just the autism" and didn't do ONE MORE THING for us, just sent us home. Not even a neurological examination.
What sort of medical practice is that??!!
I don't know if this sort of thing is allowed on here, so tell me if not and I'll take this part out. Sarah has been working for the past year on a novel, and she asked me if we could publish it as an ebook and use the money from any sales "to help pay off the bills so that we can afford to fix things up." I told her we could try. She worked like crazy on that book, night and day, sick or well, through vacations, weekends, whatever. She wrote and wrote and wrote. I put up a page for the book on her/my blog at http://www.sarah-story.com/sarahs-writing/ If you're inclined, please have a look. You can even download the book for free if you want, you just need software (or a nook) to read the EPUB format. Full disclosure: there's a donation button on that page as a "tip jar" for people who download the free book and like it enough to contribute. If you could share the link with others, we'd be very grateful, but if not, that's fine too.
I'm ready to burst. I'm spinning way too many plates and it seems like more are coming.
I hope everybody else is doing relatively well. I need to catch back up on the forum at large now that most of the specialist appointments are behind us and a more regular, predictable schedule of speech therapy (and maybe occupational therapy) will be the new norm for awhile.
As the prednisone is lowered, her shoulders, back, hips, knees, ankles, and wrists are bothering her again. They tell us it's not arthritis and they don't even think it's related to her Crohn's. She never had this problem before her severe Remicade reaction but the doctors insist it couldn't have been that despite the fact that the advent of this pain was the same day of the reaction.
The rheumatologist diagnosed neuropathic pain and prescribed PT and TENS therapy, but there's a problem with that diagnosis: neuropathic pain CAN'T be treated with corticosteroids, so WHY does her pain go away when she's on them??! She had MANY, MANY X-rays and MRIs last year and they say there's no inflammation or damage in any of them, but she wasn't in much pain when they were taken, either. I'm starting to think we're never going to know what causes it. She claims it's becoming less severe and she's able to be more active at school, but I wonder whether she's just building up a tolerance.
Izzy FINALLY got the sedated hearing test (Auditory Brainstem Response) that we've been pushing for to prove once and for all, conclusively, whether she has a hearing problem (she could still have auditory processing disorder, but we won't know for years). It was negative, she can hear. This is bittersweet news. She has a "diagnosis" of autism, but that was given to us by a speech pathologist who only saw her for 45 minutes. We think she might have suffered neurological damage from childhood jaundice but can't be sure. If there is damage, it's too "mild" to diagnose, so she gets "autism" instead. Izzy can barely speak and the words she does say are garbled and hard to understand. She has trouble with tasks like putting shoes on or taking them off, dressing, undressing, walking on uneven terrain... all things that she should be able to do, or at least attempt successfully around 50% of the time, at age 2. We have seen neurologists, audiologists, and now we've resigned ourselves to just taking her to speech and behavioral therapy for autism in the absence of another diagnosis. Izzy is a happy, affectionate, smilling, beautiful girl who LOVES hugs and kisses, loves to "sing", dance, play peek-a-boo, is incredibly imaginative and acts out spontaneous, imaginary scenes with her toys. If it's Autism, it must be incredibly MILD autism.
We took her to a neurologist on Tuesday to show him a video of Izzy having some sort of fit. In the middle of dinner a few weeks ago, she started panicking and didn't seem to be able to swallow the food in her mouth. She almost choked. She couldn't spit it out, either, we had to remove it for her. We took her in the living room to calm down, and her tongue kept lolling out of her mouth for almost a half an hour. I posted the video on here a little while ago.
The neurologist took a look at the video, seemed interested, started to speculate under his breath about a few things, then looked at her chart and saw the "autism" diagnosis in her record and immediately stopped and said "Oh, well, this is just the autism" and didn't do ONE MORE THING for us, just sent us home. Not even a neurological examination.
What sort of medical practice is that??!!
***
I don't know if this sort of thing is allowed on here, so tell me if not and I'll take this part out. Sarah has been working for the past year on a novel, and she asked me if we could publish it as an ebook and use the money from any sales "to help pay off the bills so that we can afford to fix things up." I told her we could try. She worked like crazy on that book, night and day, sick or well, through vacations, weekends, whatever. She wrote and wrote and wrote. I put up a page for the book on her/my blog at http://www.sarah-story.com/sarahs-writing/ If you're inclined, please have a look. You can even download the book for free if you want, you just need software (or a nook) to read the EPUB format. Full disclosure: there's a donation button on that page as a "tip jar" for people who download the free book and like it enough to contribute. If you could share the link with others, we'd be very grateful, but if not, that's fine too.
I'm ready to burst. I'm spinning way too many plates and it seems like more are coming.
I hope everybody else is doing relatively well. I need to catch back up on the forum at large now that most of the specialist appointments are behind us and a more regular, predictable schedule of speech therapy (and maybe occupational therapy) will be the new norm for awhile.
(((HUGS))). 
