We just got back a few minutes ago from an appointment with Princess #2's new neurologist and I'm floored. She's so much more than what we've been dealing with in a doctor for the past few years that I didn't even know what we were missing. She also has a specialty in Autism Spectrum Disorders and Behavioral Disorders that I wasn't aware of when I first made our appointment with her. This woman is just amazing and I feel like she landed in our lap. Princess #2 loves her already which in itself is amazing, especially since this doctor is very no-nonsense. It often takes Princess #2 quite some time, if not a couple of visits, to warm up to someone. She even did her best to make eye contact with the doctor when the doctor requested it, but that was agonizing for Princess #2. Eye contact is such a struggle and so uncomfortable for her, even when she's not thinking about it.
Dr. K is already going to take control of Princess #2's seizure disorder and we'll be getting blood tests to check the levels of Lamictal in her blood to make sure it's appropriate and therapeutic. Even better or just as good Dr. K is going to be very, very hands on with our behavioral issues, sensory issues, and social issues. Dr. K already wrote a prescription for Princess #2 to get occupational therapy at our local autism therapeutic center and she said that she can guarantee Princess #2 a spot there because she consults at that school/clinic.
Dr. K already made another appointment for the 22nd, and said that she's not only sending Princess #2 for special therapies but she's going to do therapies herself in her office. We won't need the Developmental-Behavioral Pediatrician that we've been on the waiting list for. That we've been waiting literally years to see. It's like we have this amazing new all-in-one doctor and she's willing to do it all with us, not only willing but stepped up and offered. When Dr. K asked what I had in place for Princess #2 outside of school and I told her we were on a waiting list for a Developmental-Behavioral Pediatrician to help us with the sensory stuff and behavioral stuff, Dr. K's response was, "Why would you do that? You don't have to keep waiting. You have me. I can help you with all of this. Not just refer you, but actually do this myself one on one with Princess #2."
What in the HUH??? Is this woman for real? Is it already Christmas? Did Santa come early? Was there an angel sitting next to me this morning? Did God answer a prayer for me so directly and so precisely "to order" that if I were to call it a coincidence lightning would strike me?
She's going to be hands on and in frequent contact with our school. She wants to know literally everything about Princess #2 academically, she wants current and past IEPs, she wants progress reports from the teachers before each and every appointment that we have.
And for the part that made my heart sink. She's going to evaluate Princess #2 herself, which in and of itself is not bad. Nor did it make my heart sink. I wish our last neurologist had done this, as our child psychiatrist had done in obtaining the diagnosis of PDD-NOS "with the likelihood of Asperger's Disorder." But Dr. K believes that Princess #2 doesn't have Asperger's Disorder. Dr. K concurs that Princess #2 should have had the PDD diagnosis, that she undoubtedly has ASD but she has more developmental and sensory issues apparent even just during our meeting today that people with Asperger's Disorder don't typically have, and if they do not to the extent that Princess #2 does.
A new way of thinking, even though when the new DSM comes out it "won't matter" since "autism will be autism no matter what type it is." In my head there are a lot of complications to this anyway that I can't really express, but they're there. How do I digest all of this? Do I relearn what I know or think I know? Do I stop researching so much about Asperger's Disorder? What type of Autism, other than "typical" do I put my energy into researching? We'll have more answers after her next couple of appointments but now it feels like we've backtracked even though we're probably actually making headway that I didn't even realize we needed to make. I've felt like I've been treading water, nearly drowning and in over my head, not knowing where the life raft is. Maybe this explains why. We were close to the right diagnosis but not quite there... the peg just needed to be shifted slightly. Just how much it needs to be shifted won't be clear for a little while, but there are answers and help to be had and it's not just in spitting distance. It's finally HERE.
Showing posts with label PDD. Show all posts
Showing posts with label PDD. Show all posts
Wednesday, December 08, 2010
Saturday, July 05, 2008
Silent Seizures
So, my Frou Frou girlie girl might be having "absence" seizures or "silent" seizures on top of everything else.
We already know she has Asperger's Disorder, lactose intolerance, bad seasonal allergies, and vertigo. Apparently, they aren't enough. She spaces out a lot, and we thought it was the ASD catching up with her and her "detoxing." I never connected it with seizure disorder until the school nurse saw it happen (during kindergarten placement evaluations, she was attempting to perform a hearing test).
I took her to the pediatrician, who saw it happen right in the office. Now that we're paying more attention, I've noticed that it happens several times a day. We have an appointment with a pediatric neurologist this month, and then they'll probably do a sleep study for her to officially test her. But I'm fairly certain it's going to show she has them. I wish I'd connected the dots sooner. My niece has these, and Grace has them the same way Marina did. My husband's family has a history of cousins and siblings with seizure disorders. HOW could I have missed it?
Usually, they occur in children who outgrow them at puberty. They're considered to be very mild, almost un-noticable seizures. They look as if the person having them is "spacing out" and it can last anywhere from a few seconds to up to 3 minutes. The longest I've witnessed for Froufy is 30 seconds or so. When they last longer like that, she tilts her head because she's "not there." She doesn't blink, and doesn't seem to realize what's happening.
The problem is that when they happen several times a day, most likely several times per hour, it's a minimum of a few seconds each time. That means that all the seconds, when added up over the course of each day, are causing a loss of learning and experiences. For a child with global learning delays due to Asperger's Disorder, that means she's losing much more time than "neurotypical" children who have them. Otherwise, it's considered a very mild seizure and nothing to worry about. If she does have this, and again, I'm about 90% certain she does, then she'll be on a daily medication to minimize the seizures until she outgrows them. I'll also check out holistic treatments as well.
We already know she has Asperger's Disorder, lactose intolerance, bad seasonal allergies, and vertigo. Apparently, they aren't enough. She spaces out a lot, and we thought it was the ASD catching up with her and her "detoxing." I never connected it with seizure disorder until the school nurse saw it happen (during kindergarten placement evaluations, she was attempting to perform a hearing test).
I took her to the pediatrician, who saw it happen right in the office. Now that we're paying more attention, I've noticed that it happens several times a day. We have an appointment with a pediatric neurologist this month, and then they'll probably do a sleep study for her to officially test her. But I'm fairly certain it's going to show she has them. I wish I'd connected the dots sooner. My niece has these, and Grace has them the same way Marina did. My husband's family has a history of cousins and siblings with seizure disorders. HOW could I have missed it?
Usually, they occur in children who outgrow them at puberty. They're considered to be very mild, almost un-noticable seizures. They look as if the person having them is "spacing out" and it can last anywhere from a few seconds to up to 3 minutes. The longest I've witnessed for Froufy is 30 seconds or so. When they last longer like that, she tilts her head because she's "not there." She doesn't blink, and doesn't seem to realize what's happening.
The problem is that when they happen several times a day, most likely several times per hour, it's a minimum of a few seconds each time. That means that all the seconds, when added up over the course of each day, are causing a loss of learning and experiences. For a child with global learning delays due to Asperger's Disorder, that means she's losing much more time than "neurotypical" children who have them. Otherwise, it's considered a very mild seizure and nothing to worry about. If she does have this, and again, I'm about 90% certain she does, then she'll be on a daily medication to minimize the seizures until she outgrows them. I'll also check out holistic treatments as well.
Tuesday, November 20, 2007
What You Didn't Know About Autism
There is inspiration out there in the world. For every hardship, there's someone who has proven that it can be overcome. For every disability or difference, there is someone who proves that those differences can be managed and coped with.
If you've read my blog over the past couple of years, you might be familiar with the journey that we've been on in discovering Grace's Asperger's Disorder aka Asperger's Syndrome. Briefly put, it is a disorder found on the Autism Spectrum Disorder (ASD) and has it's own spectrum within itself as well. Typically, Aspies appear shy and socially awkward. They very often enjoy spending time alone. They may and do show other signs of autism, such as arm flapping when upset, obsessive attention to specific thoughts or objects, excessive emotional responses or responses that aren't appropriate to a particular situation, and many more.
Many Aspies engage in sensory seeking behavior. For Grace, that could mean playing in sand, water, or with finger paints and clay to satisfy the need to feel different textures. Most kids do that, right? But do most kids eat hot spicy foods even if they don't like it? Grace will eat super-hot salsa or jabanero peppers because of the heat. If it makes her tear up, so much the better. She will also drink straight, plain lemon juice, not because she likes it, but because it's an intense flavor that gives her a physical reaction. When she's upset, one trick to calming her down is finding a fabric on a toy or blanket that is soft and gentle and feels good, like a cloud, and asking her to focus on it. More often than not, it works!
Much of the time, Asperger's Disorder pairs with a diagnosis of Pervasive Development Disorder (PDD). That's a very generic term that essentially means "social, learning, and motor delays are present and significant."
Aspies have a much higher likelihood than other ASD's individuals to respond to therapies and treatments that are aimed to help teach them to cope with the world and help tailor their education so that their delays are worked through and hopefully eliminated. Through hard work, therapy and special services these children very often show no outward signs of their autism by the time they're in middle school.
To further help Grace, we'll soon be having her checked out by a genetecist who will do some basic neurological and genetic tests on her. I believe the goal is to help find out if there's a root cause for the Asperger's in Grace. Honestly, though, I think she just inherited all of the emotional anxieties and other crap from both sides of our family, and in Gracie, it showed up as Asperger's Disorder. I relate very much with a lot of the things Gracie goes through, but I also see certain tendencies in her that I see in other family members. Family members that don't have Asperger's.
I also want to make it very clear that Asperger's and Autism Spectrum Disorders DOES NOT MEAN that there is something wrong with an individual. It means that they think differently than the rest of us. That they have difficulty coping with social interactions and sensory stimuli.
As a parent to a child with Asperger's Disorder, it can be daunting trying to advocate for her and get her the services she needs. We're still in the process of figuring things out and getting special services through the school system, as well as her continued therapy with a child psychiatrist. After her genetic testing, we're hoping that will open the doors for more "play therapy." It can be overwhelming and stressful. Lately there are many more good days than bad, and I can see my daughter making efforts to overcome things that upset her and challenges she has that other children don't.
We have good days, but when we have bad days, they're very very bad. There are different triggers for the tantrum-like episodes, and usually we can predict what will trigger one, but sometimes... we can't. And those days are very difficult, especially if our usual soothing techniques aren't working. The good thing is that Grace does try most times now, because she's becoming aware that she needs help with certain situations. I'm quite proud of her for coming as far as she has.
I do wonder sometimes, and worry about what her future will be like. And then I hear something inspiring, like this and I know that she'll be able to do anything she chooses. These people below had/have uatistic traits including Asperger's Disorder.
If you've read my blog over the past couple of years, you might be familiar with the journey that we've been on in discovering Grace's Asperger's Disorder aka Asperger's Syndrome. Briefly put, it is a disorder found on the Autism Spectrum Disorder (ASD) and has it's own spectrum within itself as well. Typically, Aspies appear shy and socially awkward. They very often enjoy spending time alone. They may and do show other signs of autism, such as arm flapping when upset, obsessive attention to specific thoughts or objects, excessive emotional responses or responses that aren't appropriate to a particular situation, and many more.
Many Aspies engage in sensory seeking behavior. For Grace, that could mean playing in sand, water, or with finger paints and clay to satisfy the need to feel different textures. Most kids do that, right? But do most kids eat hot spicy foods even if they don't like it? Grace will eat super-hot salsa or jabanero peppers because of the heat. If it makes her tear up, so much the better. She will also drink straight, plain lemon juice, not because she likes it, but because it's an intense flavor that gives her a physical reaction. When she's upset, one trick to calming her down is finding a fabric on a toy or blanket that is soft and gentle and feels good, like a cloud, and asking her to focus on it. More often than not, it works!
Much of the time, Asperger's Disorder pairs with a diagnosis of Pervasive Development Disorder (PDD). That's a very generic term that essentially means "social, learning, and motor delays are present and significant."
Aspies have a much higher likelihood than other ASD's individuals to respond to therapies and treatments that are aimed to help teach them to cope with the world and help tailor their education so that their delays are worked through and hopefully eliminated. Through hard work, therapy and special services these children very often show no outward signs of their autism by the time they're in middle school.
To further help Grace, we'll soon be having her checked out by a genetecist who will do some basic neurological and genetic tests on her. I believe the goal is to help find out if there's a root cause for the Asperger's in Grace. Honestly, though, I think she just inherited all of the emotional anxieties and other crap from both sides of our family, and in Gracie, it showed up as Asperger's Disorder. I relate very much with a lot of the things Gracie goes through, but I also see certain tendencies in her that I see in other family members. Family members that don't have Asperger's.
I also want to make it very clear that Asperger's and Autism Spectrum Disorders DOES NOT MEAN that there is something wrong with an individual. It means that they think differently than the rest of us. That they have difficulty coping with social interactions and sensory stimuli.
As a parent to a child with Asperger's Disorder, it can be daunting trying to advocate for her and get her the services she needs. We're still in the process of figuring things out and getting special services through the school system, as well as her continued therapy with a child psychiatrist. After her genetic testing, we're hoping that will open the doors for more "play therapy." It can be overwhelming and stressful. Lately there are many more good days than bad, and I can see my daughter making efforts to overcome things that upset her and challenges she has that other children don't.
We have good days, but when we have bad days, they're very very bad. There are different triggers for the tantrum-like episodes, and usually we can predict what will trigger one, but sometimes... we can't. And those days are very difficult, especially if our usual soothing techniques aren't working. The good thing is that Grace does try most times now, because she's becoming aware that she needs help with certain situations. I'm quite proud of her for coming as far as she has.
I do wonder sometimes, and worry about what her future will be like. And then I hear something inspiring, like this and I know that she'll be able to do anything she chooses. These people below had/have uatistic traits including Asperger's Disorder.
Historical famous people
Jane Austen, 1775-1817, English novelist, author of Pride and Prejudice (see above)
Béla Bartók, 1881-1945, Hungarian composer
Ludwig van Beethoven, 1770-1827, German/Viennese composer
AMENDED Alexander Graham Bell, 1847-1922, Scottish/Canadian/American inventor of the telephone
Anton Bruckner, 1824-1896, Austrian composer
Henry Cavendish, 1731-1810, English/French scientist, discovered the composition of air and water
Emily Dickinson, 1830-1886, US poet
Thomas Edison, 1847-1931, US inventor
Albert Einstein, 1879-1955, German/American theoretical physicist
Henry Ford, 1863-1947, US industrialist
Kaspar Hauser, c1812-1833, German foundling, portrayed in a film by Werner Herzog
Oliver Heaviside, 1850-1925, English physicist
Thomas Jefferson, 1743-1826, US politician
NEW Carl Jung, 1875-1961, Swiss psychoanalyst
Franz Kafka, 1883-1924, Czech writer
Wasily Kandinsky, 1866-1944, Russian/French painter
H P Lovecraft, 1890-1937, US writer
Ludwig II, 1845-1886, King of Bavaria
Charles Rennie Mackintosh, 1868-1928, Scottish architect and designer
NEW Gustav Mahler, 1860-1911, Czech/Austrian composer
Wolfgang Amadeus Mozart, 1756-1791, Austrian composer
Isaac Newton, 1642-1727, English mathematician and physicist
Friedrich Nietzsche, 1844-1900, German philosopher
Bertrand Russell, 1872-1970, British logician
George Bernard Shaw, 1856-1950, Irish playwright, writer of Pygmalion (see above), critic and Socialist
Richard Strauss, 1864-1949, German composer
Nikola Tesla, 1856-1943, Serbian/American scientist, engineer, inventor of electric motors
Henry Thoreau, 1817-1862, US writer
Alan Turing, 1912-1954, English mathematician, computer scientist and cryptographer
Mark Twain, 1835-1910, US humorist
Vincent Van Gogh, 1853-1890, Dutch painter
Ludwig Wittgenstein, 1889-1951, Viennese/English logician and philosopherHistorical people prominent in the late twentieth century (died after 1975)
Isaac Asimov, 1920-1992, Russian/US writer on science and of science fiction, author of Bicentennial Man (see above)
Hans Asperger, 1906-1980, Austrian paediatric doctor after whom Asperger's Syndrome is named
John Denver, 1943-1997, US musician
Glenn Gould, 1932-1982, Canadian pianist
Jim Henson, 1936-1990, creator of the Muppets, US puppeteer, writer, producer, director, composer
Alfred Hitchcock, 1899-1980, English/American film director
NEARLY NEW Howard Hughes, 1905-1976, US billionaire
Andy Kaufman, 1949-1984, US comedian, subject of the film Man on the Moon
L S Lowry, 1887-1976, English painter of "matchstick men"
Charles Schulz, 1922-2000, US cartoonist and creator of Peanuts and Charlie Brown
Andy Warhol, 1928-1987, US artist
Contemporary famous people
Woody Allen, 1935-, US comedian, actor, writer, director, producer, jazz clarinettist
Tony Benn, 1925-, English Labour politician
Bob Dylan, 1941-, US singer-songwriter
Joseph Erber, 1985-, young English composer/musician who has Asperger's Syndrome, subject of a BBC TV documentary
Bobby Fischer, 1943-, US chess champion
Bill Gates, 1955-, US global monopolist
Genie, 1957-?, US "wild child" (see also L'Enfant Sauvage, Victor, above)
Crispin Glover, 1964-, US actor
Al Gore, 1948-, former US Vice President and presidential candidate
Jeff Greenfield, 1943-, US political analyst/speechwriter, a political wonk
David Helfgott, 1947-, Australian pianist, subject of the film Shine
Michael Jackson, 1958-, US singer
Garrison Keillor, 1942-, US writer, humorist and host of Prairie Home Companion
Kevin Mitnick, 1963-, US "hacker"
John Motson, 1945-, English sports commentator
NEW John Nash, 1928-, US mathematician (portrayed by Russell Crowe in A Beautiful Mind, USA 2001)
Keith Olbermann, 1959-, US sportscaster
Michael Palin, 1943-, English comedian and presenter
Keanu Reeves, 1964-, Lebanese/Canadian/US actor
Oliver Sacks, 1933-, UK/US neurologist, author of The Man Who Mistook His Wife for a Hat and Awakenings
James Taylor, 1948-, US singer/songwriter
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