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Showing posts with label Testing. Show all posts
Showing posts with label Testing. Show all posts

Thursday, April 18, 2013

Ritalin For Everyone!

Quite frequently I see posts on Facebook by my friends such as these:


Implying  that kids who have ADHD are simply normal energy level kids, and that parents and educators are lazy and just don't want to make the effort to control their kids.
     I can't answer for the system in the US, only here in Canada. B has ADD as one of her diagnosis. I have more experience than most people ever will in the child psychiatric and health arena, and I am going to say now, and for the record: Unless you have a kid with a diagnosed mental health disorder, you have no idea how lengthy and involved and complicated it is to get them diagnosed, so you should probably stop acting like you do.
     Even getting B diagnosed with ADD took several visits to Children's Hospital,  and hours, I mean HOURS of filling out mental health questionnaires. Dozens of them, all with similar yet slightly semantically different questions. She had to be interviewed and tested by two psychiatrists, and not just once, but five or six times over her life by different psychiatrists, all of whom can UNdiagnose as well as diagnose. That was what happened with her diagnosis of Nonverbal Learning Disorder. She was diagnosed with it when she was five and UNdiagnosed with it when she was a couple of years older, in a diagnostic test at Sunny Hill that took, and I am not exaggerating here, a full week to undergo. Seriously, 8 hours a day for a week.
     So let's be very clear here: In Canada, you do not walk in to a clinic and say: "Hey, Jimmy won't eat his peas and keeps jumping off the couch," and the doctor says, "Well, that sounds like ADD. I won't recommend any other course of action, let's simply shove Ritalin in his face and have done with it." (If your GP DID do that, report him him/her to the College of Physicians, because that is wrong.) NONE of the doctors B has had has EVER suggested medication for her ADD. For her anxiety, yes, and for her seizures, yes, but not ADD. Neither did they force me to medicate, even with the seizure medications. We had appointments, options were discussed, I read up on the medicines and things were tried. And anyone thinking that all she needed was a sea grass enema, relaxation tape, and a more understanding parent is at best deluded and at worst,  insulting and assumptive. Getting your kid diagnosed is the longest and most complicated way of being a lazy parent that anyone could undertake.
     And these diagnosis are hugely important. A diagnosis makes getting services in school and in the community possible. I know people with adult children who do not have a diagnosis, and they get no services. Their kids do not have a condition that is recognised, so they get nothing despite being fully acknowledged as having developmental, mental health, or physical problems. These services are not extra special treats that our kids are spoiled with, these services are meant to make independence or family life a bit more realistic and possible for us and our kids. Make no mistake, these kids 30-40 years ago were too often stuck in mental hospitals and abused their whole lives. They deserve better.
     And sometimes better means medication. And sometimes it works well, and some times it doesn't. And sometimes you have to try again. A lot of medicine is just educated guess work, and psychiatry is a soft science, but it is informed by hard science, by neurology and neuroscience, and there are things about the brain that are measurable and treatable.
     A few months ago, a friend posted this video:


     First, this video was made by the Citizens Commission on Human Rights, which sounds legitimate, but is actually a bogus mental health organisation run by the Church of Scientology. I wrote about them in an earlier post. I am not taking any advice on mental health from a bogus institution that bilks millions and was an admitted scam by L. Ron Hubbard. Second, even if this were by a legitimate mental health group, the perceived message here is that, "Parents and educators are just putting down non-conformists! Fight the man!" but the message I take from it is, "You can't have a mental health disorder and be anything but a mental health disorder. A diagnosis will end your life."
     I think, with the proper diagnosis, the right therapy and even medication, you can have a mental health disorder, and live a life, and be a leader. Diagnosis, proper diagnosis, and treatment doesn't preclude that, it makes it possible.
      None of this is to say that there aren't huge problems in healthcare, that we don't have to watch and care for human rights, but that is done by supporting and helping those who are affected, not by second guessing and criticising them. Not by making assumptions you are not qualified to make.
     You know what they say about making assumptions? If you assume, you become an ass. To me.
     I think the most hurtful thing is that the parents I know who medicate their kids, it's a hard decision. You come to it  at the end of reading and trying every other thing you can find. You don't just wake up one morning and think, "Ah, you know what would make life easier? Psychiatric and medical intervention for my kid."  For parents, learning about and facing that their beloved child may have problems and needs help is painful, and difficult, and lonely. Watching your kid go through school without making friends, or handling the work, or hitting regular milestones is devastating, and these parents actually have to work harder to educate schools, family members, friends. You have to reinvent the wheel for people time and time again. It's exhausting. So maybe the next time you go to post these, maybe think that there might be a better way to support these kids, maybe there's a better way to work on change in healthcare. And maybe that starts with asking someone who is a patient how you can help.



Tuesday, March 6, 2012

Our Week

Well, we've had an interesting week here. On Friday, I started Mandt training, which comprises a part of our safety plan for B to help me deal with her behaviour problems. They focus on preventative and recuperative procedures, but I will also learn proper restraint practices, should restraining her become necessary. It has proved necessary in the past, but it is a scary thing to do if you haven't had training, and I don't want her to get hurt. Or myself. I can't just leave her, she follows me around and is physically aggressive, and she has also left the apartment, which terrifies me. The training will take one full day a week for over a month, and I will need to take refreshers every year.

I like the behaviour consultant who teaches it. I think it would be a hard job, because they need to connect with both kids and adults as clients, all of whom have a wide variety of disabilities, and they can have very offensive personal views. One of his clients now is a teenage Neo-Nazi. I can't even imagine how I would deal with that.

The work with the behaviour consultant will take almost two years, and they work with her school, and all the family and caregivers, focusing on teaching US to deal with B. I like that approach. Quite frankly, I think a lot of this training would be useful for all parents, and it sucks that it is so hard to access.

On Friday, while I had my training, Andrew took B to some appointments I didn't want to reschedule. One of the things we needed done were some blood tests, and so I told him to give her Ativan before the blood tests, as she is needle phobic. Badly, although there has been some improvement lately. Still, holding a screaming kid down for blood tests is not fun. For anyone. However, some of the tests needed to go out with a courier, and so they told him to bring her back later in the day. In the interim, he asked her GP if he could safely give her MORE Ativan later in the day and the GP said yes. Unfortunately, the lab had misinformed him about the later time, so she still didn't have the tests.

And the doctor was wrong, because it was far too much Ativan, and she felt very ill later in the day. I felt bad for her AND Andrew. We'll have to schedule the blood tests properly this time. I had never heard of blood tests that needed immediate couriering.

She hasn't had any noticeable seizures lately. Now that I want them, of course, they go into hiding. The sneaky bastards.


Friday, February 4, 2011

One Of B's Gifts

     Along with reading, which B has always excelled at, one of her other talents is remembering both the words and the melody of songs. The kid is a sponge for music. I keep trying to get her interested in choir, or voice lessons, but she won't go for it. She only needs to hear a song once to get it down, and she will remember it for years, spontaneously usually.
     Two days ago, on Wednesday, we had an appointment at Hematology. B needs to get some blood work down, because we are going to suppress her period. The pediatric gynecologist needs to know if she's at risk for further strokes, so that we can decide how to do that. Birth control can increase the risk of strokes. We had to wait for the doctor for a long time, which meant having to keep B entertained. For a while she was happy wearing a mask and pretending she was the Grinch Doctor who was going to operate on me.
     I got her up to waltz with me, while I hummed. All of a sudden she said, "I know the Coast Salish National Anthem," and she started to sing it. She sang the whole thing, very well, with all the tonal changes and proper pacing. I was blown away, and I felt just so overcome with pride for her.
     Her school has a large First Nations population, 64% of the student body is First Nations. We are not First Nations, but I have always really liked the diversity of her school. The majority of the other students are English as a second language, largely Asian. This has been an overwhelmingly positive part of her education. Her school teaches a First Nations curriculum, and so she has learned so much about the culture.
     I knew, of course, that they sang the Anthem at the school, but I hadn't realised how well she had learned it until she sang it to me.
     When she was done, and I wiped my teary eyes, I told her that she had just demonstrated more cultural awareness than most people I had met. And I am so proud of her. And grateful to her classmates and school for sharing that with her.

Friday, November 26, 2010

Sleep Study

     On Wednesday night, B had a sleep study. She still is somewhat sleep disordered and will sleep for a very long time, rarely seeming rested when she wakes up. She has been better about going to sleep, though.
     So we went to Children's Hospital on Wednesday. B had it in her head that it meant staying up all night, like she does for EEGs, even though I kept explaining it was a study of how she sleeps.
     Andrew came with us, which was a big help, because she was NOT happy once all the electrodes and monitors were attached. She became particularly angry about the tubes under her nose to measure her breathing. She got mad at me, Andrew, and the nurse and it took quite awhile to calm her down to sleep. She has absolutely no patience right now, a side effect of the Topamax, and while she hasn't had many seizures all week quite frankly, unless she stops experiencing such mood and anger issues, I don't think I can keep her on these meds.
     Anyways, Andrew left and I stayed. They provide a bed for one parent to stay. Well, not a bed so much as an instrument of torture, designed to make parents sit up all night weeping and swearing they will never try to sleep at the Hospital again. I experienced the same thing after her birth, a memory I had a lot of time to think about as I lay on the carefully disguised rock they call a mattress on Wednesday night. When she was born I spent everyday for a month in the Special Care Nursery, and all they provided were hideously uncomfortable chairs. Oddly high and uncushioned chairs, to mothers trying to breastfeed sick babies and who often had stitches in their vaginal openings. I developed a bad infection and they threatened to open me up again.
     When they finally moved her to a ward they gave me some fold down contraption, old, plastic, and positively hilly in all the wrong areas. It felt like sleeping on misshapen dentist's chair. One night a nurse felt sorry for me and told me I could sleep in a spare bed in B's room, and another nurse the next morning was just livid with me for that. The hospital felt hostile to parents. If I hadn't been so exhausted and emotionally blank at the time, I would have made a complaint. All I could think about was getting her home, though.
     So on Wednesday night I just could not sleep and had to keep getting up to move around. B finally fell asleep, but the nurse had to keep coming in and adjusting all the wires on  B's  head. B grew furious, and really, bad med reaction or not, I totally understood. By four in the morning she had stopped all cooperating and refused to let the nurse touch her anymore. I told the nurse to get everything off her, because I knew that girl would not be sleeping again. And she didn't. She read and watched TV, and at 5:30 a.m. we bundled up and caught a bus. We went downtown and got some food. then we came home.
     And slept.
     And we still need to do a 24hr EEG. Yay!
     I am pretty sure she will not grow up with an incredible interest in medical science. I don't blame her.
     But today we had fun. I kept her home from school to have fun with the snow, and pulled her in a sled to the Cafe for Mountainous Marshmallow hot chocolate. No mean feat, since she weighs a ton. I am convinced she eats rocks when I'm not looking.