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.

Done Is Done

I just met with B's Psyche for what we've planned is the last time. B has received counselling through them for about two years, which is longer than they see most clients. They need to make space for more urgent cases.

I actually wasn't planning on seeing them at all after Christmas. But then B told her teachers she was going to killl herself, and then her counsellor, and so we ended up having to see them again. And while I know that it's behaviour, the counsellor at school talked to her and asked her HOW she might do it, and if she'd rehearse. So guess what she does now. Yep. Thinks about how she would do it. And rehearses.

On Saturday she had an episode and grew violent with me. My plan, that I have worked on for the past year with the behaviourist, has been to leave the apartment when she does that, until she cools down. On Saturday I couldn't because she searched for poison, and knives, and tied string around her neck, so I had to spend the whole time with her getting punched and kicked. I don't think she wants to kill herself, she's learned that it's an effective tactic to change the nature of the attention she's getting from expectation to one of concern, but I do think she could do herself harm by accident or through impulse.

And so I wanted to address the underlying moods, maybe try a new med. But the psyche doesn't think that there really is a good one to give her. So, no meds, no more counselling, and soon, no more behaviourist.

"Let's just wait and see."

And then we discussed how she's unlikely to get support from Community Living BC, because her IQ is not less than 70.

I cried in frustration. I almost never cry.

The psyche asked if I had considered putting her in foster care for a break. No. Absolutely not. Yep, I could get someone really great. I could also get a nasty and judgemental twit that could make our lives hell. Regardless, I refuse to participate in a system that will pay someone else, but not me, to take care of her. Will not. She has a perfectly good and dedicated mother. THAT should be supported. Plus, she is so attached to me, that would kill her.

I feel very misanthropic right now. Disabled people, especially children, are the absolutely most vulnerable in the world. They have no homeland, no area of town to visit, and they might not even have very much in common with other people with disabilities. Persons like B are even completely dependent on other people organising for them. And their parents are extremely over worked and under supported, making organising difficult, and leading to isolation and exhaustion. And I resent it. And I resent everyone who doesn't have to think about this right now. That isn't fair, but there you go.

Update

It's been awhile since I posted anything. I guess things have gotten very intense and I needed to back away from it all for a while, but I've had people write and ask for an update, and there is a lot to share.

In the fall, we finally found B a good high school Life Skills program. The program is a good fit, and for the first time in her whole school experience, B does not feel set apart from her classmates, as they all have developmental and health concerns like hers. She's made friends, and has a boyfriend, which is very sweet. She kissed him, and I think they hold hands at lunch. She also now has a BFF, who phones her at home and demands that I get her a puppy as well. It makes me happy to see her chatting on the phone with a friend.

She continues to have anger and behavioural issues, which her neurologist thinks is related to her seizure disorder. We have a behavioural consultant, but last week she beat me up twice, and I admit that it can be hard for me to read about my friends and their kids, and how they are excelling at school and socially, when last week it was all I could do to physically wrestle B on to the bus, in her pajamas and covered in hot chocolate. Standing on the street and holding her while she punched me, people stopping to stare, I felt horrible and sad for her. And me. The behaviour consultant is nice, but her recommendations so far are mostly things we already do, but still, I have to try.

B's seizures are back, although her seizure patterns keep changing. We've exhausted all the medications, save one. That med is Keppra, and it is so expensive that we need special government permission to get it. A friend from the states said it cost more than her mortgage each month. But I can't give it to her, because it can increase her behaviour issues, and of the two, the behaviour issues can cause the most problems for her.

In lieu of medication options, I instead decided to have her assessed for surgery. We spent a week in the hospital, with B hooked up to an EEG, tied to the wall by a fifteen foot cord, lights on 24 hours a day, and sleep depriving her. She didn't have one seizure. She had discharges, but it was not enough, so we need to do it again. She did have a new MRI, which showed a huge scar in her right occipital and parietal lobe, and that the right side of her brain is significantly smaller than her left. Still, she is amazing in how much she has compensated, and is a walking testimony to the plasticity of a baby's brain.

As for me, I have been trying to maintain a good balance between caring for her and caring for myself. I have kept up a consistent Paleo diet, exercised regularly, and am nearing a 100lb weight loss. I feel physically good. I walk, ride a bike, and weight lift regularly. I find this is important, because I can get so lost in everything I need to do for B. Andrew is better at taking time for himself. It is a skill I need to work at.

I still would like a decent and flexible job. Not working, beyond my own writing, and not contributing financially to our household is very hard on me. But I need a job that allows for appointments, and random time off, and that is not easy to find. I do what I can.

I will get back to posting more regularly, and keep you up to date on her treatments.My next goal is trying to get funding to buy this bike , because Lordy, I cannot take the heart attack of her trying to ride down the street, with her eyesight and hearing issues, a seizure happening at any random time.

Oh, yeah, she got a hearing aid.

B's Rage

     So, we're taking B off the Citalopram. Her incidence of insomnia and rage did not go away with a lowering of the dose. She was engaging in dangerous and abusive behaviour at home and at school. Apparently citalopram can cause bipolar like symptoms, and boy, has she been having those. It sucks to wish your child was just morbidly depressed again.
     The past month has been stressful, and even though the school year is essentially over, I've still taken her out of school for the remainder of the year. I don't want her getting a reputation for disruptive behaviour at school when it's meds, and it just isn't safe for her or the workers.
    On the plus side, I've been doing a LOT of walking. For exercise, stress relief, and mental housekeeping. Cheaper than drinking.

 I really hope the insomnia and rage stop with the meds. Hope for us.

B Has A Recent New Problem

     Lately, B has been experiencing some rage, which her psychiatrist and I think is from the Citalopram. She had what almost seemed like a Mixed State  a couple of times in the last week, at here and at school. Although, a Mixed State is a syndrome under bipolar disorder, and B is not bipolar.
     She was physically aggressive with me, Andrew, and her worker at school, which is NOT like her at all. It was scary and heartbreaking, and the screaming at four in the morning made me fear the police would be called by a neighbour. It took a very long time and a surprise visit from Grandma for two days in a row to calm her down. Plus some Ativan.
    I've dropped down her Citalopram, and we see her therapist this week. I also bought her a bucket of toys that she can open AFTER seven days of non-violence. I don't want to punish her, because I think it's her meds, not her, and besides, punishment doesn't work for a kid who doesn't remember why she's being punished.
     She's still sleeping in her own bed, with the dog. Now I have King sized bed all to myself, and I can't stop sleeping in the top corner, which was all the space I've gotten for years.  :)

     I hope next week is better.

B's New Meds

     Well, B has been on her new anti-depressant for over a month now, and I think there's been an improvement. She's started actually doing things without me again. She will go and watch a movie, or play on her Wii, instead of just hanging on me all day. And she's started to make things again. The other day, we made a book shaped like a hand, to write down reasons we are thankful. It's very cute.
     Also, she's more chatty. Tonight she was very entertaining, telling me all about the "Other Mother" with no eyes, with whom she made pancakes (from Coraline). And she asked me to teach her to cook, so I had her help me with dinner.
     She's still not keen on going out much, and still isn't into going to school much. Also, she's  still sleeping a lot, and having trouble with decisions. So, we've increased her meds, and I'm going to keep her other meds the same, but hopefully she'll continue to improve.
     She's been having night time seizure activity, and some absence episodes, but no Complex Partials since Christmas day. None of that really means anything, she's had periods of lower seizure activity before, but it's a nice break.
     Man, would I love for her to get back to full time school, so that I can get a job. Andrew won't give me his job, even though I think that if I comb my hair just right, we're identical!

 

Medical Treatment And What My Views Are

     I have a wide variety of friends, with a wide variety of interests and beliefs. Science minded friends, socialists, skeptics, atheists, mildly pagan leaning, new agey holistic health beliefs, and leanings towards anarchistic anti-government sentiments. It is not important, to me that they necessarily share all my ways of thinking, nor I their's. The fundamental principles of social justice, freedom of expression, personal liberty, and equality are a common ground on which our mutual friendships are based, regardless of the individual particulars of why anyone of them has such beliefs.
     I, myself, am an atheist, materialist, socialist feminist, which are all views I actively promote in my day-to-day interactions. I am extremely pragmatic, and even though I do not have a strong science background, I rely on, especially regarding B's health care, evidence based medical intervention. I am also strongly opposed to many current and popular conspiracy theories, specifically those based on faulty or fraudulent understandings of medical research, the lingering bogus belief that vaccines cause Autism being a fine example of that. It has been proven that the doctor behind that skewed his data and produced what was, at best, a faulty result, and at worst, a deliberately misleading and self serving report. The facts are that there is absolutely no link between vaccines and Autism, and all curent research indicates a genetic cause.
     Recently, a friend sent me a link to this video:

      Now, in his defense, my friend only wants to share information he believes is important, and there is nothing wrong, at all, with monitoring and criticising the medical and psychiatric fields. Indeed, any system that monitors and influences the health of individuals and society should be deeply and constantly scrutinized.
   However, this video is produced by Citizens Commission On Human Rights, which sounds all great and progressive and correct, but which is actually a front for the Church of Scientology. I will spare you my well used rant against the Church of Scientology, an out-and-out scam if ever there was one, but I will express my horror and outrage at the absolutely misleading and fraudulent criticisms of Psychology, Psychiatry, and Neuroscience put forth just in the first few minutes of this video. The biggest being that there have been no studies or research, and therefore no evidence, on the causes of anxiety and depression. A simple look at any quality science blog or site will expose that as the outright lie that that is. There as been a great amount of research on the brain and brain disorders, and a large body of evidence based medicine has resulted from that.
     Psychiatry and psychology are what is known as soft science, that is, not all the approaches are based on hard objective experimental data, but more on subjective data and studies to which interpretation and peer review must be applied to generate a consistent and usable outcome. But both are heavily driven and informed by hard science, such as Neuroscience, which does consist of hard data. To deny the useful and beneficial information and treatment that has come out of this science is a huge disservice to both people that suffer from such disorders and society at large.
     I am not going to deny that there have been, and continue to be, bad doctors, bad psychologists, and bad researchers, see the fraudulent report on vaccines and Autism for proof of that, but I believe more strongly in the scientific method and the greater ethical nature of the scientific community than I do in "alternative' sources, such as naturopathy, homeopathy, and certainly more than a group who wish me to pay exorbitant sums to have dead, volcano cooked alien souls removed from my body. And when an alternative treatment is tested, and is shown to work, that's great, but as Tim Minchin says, "Do you know what they call an alternative medicine that's been proven to work? Medicine."

     The point is, there are facts, proven, diagnosable, physically real facts that are revealed by science, and that only change when new facts appear, and these facts are not negated by mysterious belief and purely anecdotal evidence. And the treatments I seek for my daughter will be based on these facts and this research. To me, it is unconscionable to seek other treatments or worse, not treat her, based on any treatment that is not evidence based.
     So, the Scientology video made me mad. Especially as B's doctors and I just this week decided to try her on a second trial of anti-depressants for her debilitating anxiety and depression. Despite all SSRI detractors and conspiracy mongering, the fact is that depression and anxiety are physical/chemical problems, that respond best to both drug therapy in combination with cognitive therapy, and any twit that advises E-Meter testing in conjunction with vitamin therapy as a replacement for actual treatment is, at best, deluded, and at worst, deliberately misleading people. Certainly taking vitamins and eating well can help, but it is NOT a treatment for her. Well, not taking vitamins necessarily. Taking vitamins, for the most part, has been proven to not be necessary for most people, special circumstances aside.
     Do you remember the AIDS Heretics in the '90s? Well, yeah, I learned a big lesson there. You can extrapolate any amount of ridiculous belief and convince yourself it's logical. I won't be doing that again.
     Now, my friend did not know about the recent change in her medicine when he sent me the video, nor that each change or addition to her medicine involves a lot of discussion and consultation, and is never done hastily or without great need. I love my friend, and even like his desire to question everything, but for Apollo's sake, PUHLEEZE, everyone, check your sources before you send me anything meant to inform or persuade my choice in treatment for B, because I am quite well versed, as a lay person, on these subjects.
     One thing we all should all be wary of is own own predilection towards affirming our own confirmation biases, especially when such confirmations are irrational and don't have a solid foundation. And if we're all lucky, we have someone in our lives who isn't afraid to smack us with a logic stick once in a while and force us to be intellectually honest despite ourselves. I'm lucky, Andrew does that for me. I hope my friend saw that I was doing that for him. Certainly, if you read of a treatment or study you think is interesting, let me know and I'll read it, but do some verifying first.

Ah, Xmas Day At The Hospital

     B does not respond well, I keep relearning, to stressful situations, crowds,  lots of visiting, and the over-all overwhelming expectations of the Holidays. On Christmas Eve she had a very hard time at the dinner we had, feeling very stressed out but happy to see her cousins. After everyone had left and it was just me, her, and Andrew, she had a pretty big meltdown. She yelled at me and tried to throw the cat's scratching post. She couldn't say what was wrong, which is something we've been working on, but expressing herself comes very hard to her.
     I have long suspected that she has a lot of seizure activity at night, but not in a very obvious way. Her sleep is very restless, and she has repetitive mouth movements and moaning. She's scheduled for a 24 hr EEG, but as with everything in our underfunded health care system, this means a long wait. Some research on my part has turned up Electrical Status Epilepticus During Slow Wave Sleep, a condition that will only be made clear with the 24 hr EEG. I will discuss it with Dr. P on our next visit, although there likely won't be anything extra we can do that we aren't already trying. I would like a night time seizure monitor for her, though, because I don't ever really sleep well as I'm always worried about night time seizures. During sleep is the only time she has Tonic Clonic seizures, and even though she hasn't had one of those in years, still they worry me.
     However, Christmas Eve I climbed into bed at 3 a.m. and as I lay there, she had a Partial Complex seizure. She didn't jerk, she curled her knees up to her chest and went rigid. After a minute or so it stopped, but I remained on edge. At 6:30 she woke me  to say she had wet the bed, which she doesn't usually do. I suspect she had another seizure.
     Christmas morning she slept and slept. I woke her up finally at 12:30 p.m., and she was so grumpy. I finally got her up to open presents, which she did, and then an hour later had another seizure and collapsed on the couch. We let her sleep. A while later she awoke for a bit, but after unsuccessfully trying to get her to eat, I found her collapsed on the couch again. Again she lay down to sleep, and then had another seizure in her sleep, at which point I gave her an Ativan. When she woke up around seven she had a paste around her mouth, which I feared was the melted Ativan. Now I had no idea how much she had ingested, which was worrisome if she did have more seizures. I also didn't have anymore Ativan, so I told Andrew I would take her to the hospital if she had anymore seizures. But this time she was alert, and got up like nothing had happened and coloured for awhile.  Then she had another seizure, so off to the hospital we went.
     There's not much they can do at the hospital, a fact that I have learned well enough. They check her out, watch her for awhile, give her more Ativan if she needs it. For this reason, I avoid going there. It is a lot of stressful waiting for us. The benefit comes in ruling out any other issues that I am unaware of and, in this case, getting some more Ativan. I also needed some clarification on how much she can have, as she has these kinds of attacks, called Status Epilepticus, rarely, and it's never been the case that she's had more seizures after having the Ativan.
     She had another seizure in the hospital, which was kind of relieving. I know that sounds weird, but often B's seizures are like a ghost that for a very long time only her and I really saw. Exposure to her seizures is really dependent on how much time you spend with her. Some people have known her for years and have never seen them. I know the hospital and her doctors know they exist, but having them see her have one makes it concrete and I feel less like a nutcase. It has been that way with people who feel that I am just over-protective, and then they see them and I have to resist shouting, "See, see! The seizures are ALIVE!" Often, everything just feels surreal and, at the same time, hyper-real.
     The neurologist on call told me to slightly increase the medicine (Topamax) she's on and decrease it more slowly. I had been decreasing it at the same rate I increased it. She also told me that B can have 2 or three doses on the Ativan throughout a 24 hr period, as she's big enough for that now. And I can call the on-call neurologist from now on for direction regarding giving her Ativan and whether or not to bring her into the hospital, which is a huge relief. Finally, she told me something very interesting about the next med B's neurologist wanted to try. I thought we had been waiting to start it until all the new medicine, Keppra, until B had all the Topamax out of her system, but it turns out that they have to apply for special permission for Keppra, and that it's very expensive. If they get the special permission though, it's covered.
     We finally left at four a.m.. We went through a drive through for burgers, because she was finally hungry. When we got home, she ate half her burger, had a seizure, and dropped her burger in her boot. :-( How totally unfair was that?
     On another note, awhile ago I read a report from B's public health nurse that said B has Lennox-Gastaut syndrome, which I also need to discuss with Dr.P.

Pediatrician Appt.

     On Monday we saw B's pediatrician. I think I have mentioned before that she has the best Pediatrician. Dr. P has been with her since birth, and he is a caring and conscientious man. Not that all her other doctors aren't great, they are, but Dr. P is just the doctor that always makes me feel better about what is going on.
     He agrees with Dr. F and me that these meds are not working for her, but he also worries that she needs to see a tertiary psychiatrist at Children's because she might be having depression symptoms. She's already diagnosed with depression, but I have not wanted to medicate her because she's already on so many meds.
     "You may not have a choice," he said. And he is right.  I have to stay open to all the choices. DR. P has never pushed me into any treatments. When I hesitated at getting vaccinations for her at birth, he was very calm and non confrontational, unlike some others who were irate. I did get her vaccinated, after I had processed all the facts.
     We also talked about the surgery. He said the wait won't likely be long to get assessed, because the surgeon who does it knows that once a neurologist has actually referred a patient to him, well, that neurologist has already emptied his bag of tricks.
     Dr. P said that if the seizures aren't localised, meaning a removal of that part of her brain, then they might separate the two sides, since we know she has a pathology (injury due to stroke) on the right side.
     I really want to get her a puppy right now. I really think it would pick her spirits up, give her a real need to get out of the house, and help her interact with others. Unfortunately, the pet rescues I have been in contact have been run by, uh, really eccentric and uncooperative people.

Last Week

     Last week was just great, full of magic kittens, lollipop adventures, and beeyoootiful queens with awesome powers.
     Except not.
      B felt just horrible on this med. She basically just tried to sit on me all week, really, I am not kidding. She wouldn't leave me alone to do anything, and would follow me to room to room. And if I begged for some time to myself, she would have a huge temper tantrum. It was really sad. She didn't go school. She had headaches.
     So I phoned her neurologist and explained the horrible state of my child, the dwindling of my sanity, and the fact that she's still having seizures anyways. I'd rather have the seizures than this angry, morose girl.
     So we're taking her of these meds. He has one more he'd like to try, but regardless, the surgery will remain on the table.
     On top of that, I had a huge fight with my best friend which, quite frankly, in the cold light of morning, doesn't look that it will be resolved. And it's not something I think we can just not fix, and she doesn't seem to want to try. So, that's that.
     It was an emotional, exhausting week.
     And, oh goody, look, here comes another one.

More Applying For Apparently Invisible and Imaginary Services

     Today B and I had a visit from the lady who assesses children for the At Home program. She was nice, but I'm rather burnt out right now and very tried of applying to programs that turn us down all the time, even though, as this woman noted, B has the most complex profile she has encountered. But as usual, B surpasses or has disabilities outside the range of the questionaire. The woman asked if B can use a spoon or put on a shirt. She can do both. She can go get neither, or will sit in front of her food and forget to eat, or get get an inappropriate shirt if she does actually manage to find them. If she were spoon fed, she fits the profile, but because the problems are that she can't be left alone to eat in case she has a seizure, she doesn't.
     Half way through I told the woman that if I seemed lacklustre to her, it wasn't because of her, it's because I don't even see the point of applying for stuff anymore. She gets turned down from VSB special programs. It's December and we still haven't heard if she'll get funding for out of school care, which I guess means I'm pretty lucky I don't need it yet. She got turned down from Big Sisters, Worry Dragons, and now that school program I had hopes for has turned her down as well.
     On top of that, she's had a horrible week of headaches and lethargy from her meds. She has practically sat on me the whole week, and if I go to another room, she follows me. She hasn't had a Complex Partial since that day she had three, but seems to be having absence seizures. I can't really tell because she's so foggy and angry right now. She needs to come off these meds, but I do not have any other med choices available.
     She did cheer up when I offered to replace her spleen with a waffle maker today. The At Home woman laughed, too.
     If she qualifies for at least the medical portion of the At Home program, she can get physiotherapy, speech therapy, and occupational therapy, as well as other things, so cross you fingers, or your legs, or eyes, whatever your religion dictates, for us.

When The Meds Don't Work

     B has had a horrible time of it lately. Her seizures are quite bad lately. On Monday she had three. Is the new med not working? Or just not yet? I don't know. She's having a lot of trouble cognitively. She can't follow the plots of cartoons and she's struggling to put sentences together. Her normally bad memory has taken a nose dive. This has led to high frustration and temper tantrums, which she doesn't normally have, because it's really hard when you don't know what's happening most of the time.
     Today we got squeezed in at the neurologist's. The increase in seizures as well as her emotional and cognitive problems are a cause for concern. For now, we will stay on the schedule for the medication.
     I REALLY hope it starts to work, because her neurologist feels like it's time she was assessed for brain surgery, where they will likely remove part of her brain. I really don't want that. But the meds don't work. But the surgery isn't a guarantee. But the meds might work, for awhile. But maybe they won't for the long term. But the surgery is dangerous. But the seizures are stealing her life.
     Apparently children that have tried two or three drugs for seizures that haven't worked are candidates for surgery. B has been on six.
     You know, it feels really weird to have normal interactions with people when you have just been told such things. A little while ago I went to cash a cheque, and I promised B some pizza. They wouldn't cash it because it's a day earlier then the cheque is dated, even though they have the last two months. It's perfectly reasonable, but I became instantly and profoundly depressed that I couldn't buy her pizza. She doesn't remember I said I would, and we have tons of food at home, but I just felt really sad. And now I'll have to go tomorrow and see if the teller thought I was being rude.
   

Hell Week

     Well, this has certainly not been an enjoyable week. B developed a high fever last week, which I assumed indicated she had a cold, since both Andrew and I had bad colds the week before. Then, last Saturday I woke to her having a long (2 minutes) Complex Partial in bed next to me. That would be the reason why I sleep with her. Vomiting and heavy drooling present a choking hazard.
     On Sunday her face turned brilliant red and swell up and she still had a high fever, but didn't seem to have other cold symptoms.  Sunday night, around 2 a.m., I became concerned that she actually showed a reaction to her meds, the new ones we had just started her on, Tegretol. I feared she might have Stevens-Johnson Syndrome, a horrible necrotizing skin disorder that people can develop from plenty of different medications, but has more links to specific types, like anti-convulsants. I have been told every time she starts or comes off a med to watch for it.
     I phoned the nurse's line, but the nurse, who I found to be very kind, couldn't really offer direction. We both decided to wait until the morning to see how B felt.
     In the morning she had a rash all over her torso, arms, and up her neck onto her chin. I had a mini panic and got her into the GP in an hour. He agreed that she had an allergic reaction, although he couldn't say for sure either way if she might have Stevens-Johnson. I felt better though, having seen him. The visit was followed by some phone calls to the neurologist, who asked that I bring her in right away, but since that proved impossible, we agreed to have an appt. on Thursday morning. We had actually originally had an appt. Thursday morning, but since she had seen him just two weeks previously, that appt. had been cancelled. Obviously, all this had been a plot by her to keep her commitments. :)
     On Thursday she actually had three appointments, 9 a.m. at Children's Hospital, her GP at Hastings and Slocan at 10:30, and an appointment to meet her new counsellor at Child and Youth Mental Health at 2. What a hard and tiring day.
     The neurologist has now prescribed Topamax, which belongs in a different drug family, so hopefully she won't have an allergy to it. She's on the mend, but has already had two seizures today, so I've given her an Ativan, which she has been prescribed for Anxiety, but they use it for treating seizures, too. I don't want her going into Status Epilepticus today, as I feel quite done with doctors this week, thank you. They are nice people, but, yeah, we've quite had enough. 
     But let this demonstrate that I KNEW something more had happened BEFORE she developed the rash. Parents KNOW their children, so do not EVER hesitate to be pushy and demanding in getting them help, and ALWAYS follow your instincts. No doctor is ever going to get angry at having examined a healthy child, not if they are a good doctor. If they do, then they are not a good doctor, get a new one. B's doctors are great.
     One thing that worries me about the Topamax is that it induces anorexia (not anorexia nervosa), which she has already had from the Lamotrigine and which she had just recently recovered from somewhat. Oh well, high calorie, fat, and protein kid friendly snack and meal ideas are appreciated.
     I am quite tried and pretty grumpy today. I think Andrew has hidden himself away to avoid my grumps.

Doctors

     This past week, B had two specialist appointments. We saw a pediatric gynecologist on Wednesday. What an incredible specialty. Only two such specialists practice in Vancouver. We discussed suppressing B's menstrual cycle, because I don't think she will have the ability to handle it, and the public health nurse, her pediatrician, and her neurologist all agree. B will not remember to check and change her pads, and would likely need physical help to do that. I want to spare her the stress of having to do all that.
     Our choices are hormonal treatments, of which there are less choices than with adult women, or a Mirena IUD, if her uterus is large enough to accommodate one. I don't want to do anything that will affect her ability to have children in the future. I don't feel that I should make that choice for her, and certainly not now. Nor do I want to affect her libido in any way, as I have no reason to expect that she will not want to have loving, sexual relationships when she becomes an adult.
     We have to wait until she menstruates to do anything, but the appointment answered my questions, and helped me to feel like I've made a good choice. Before the appointment, I showed her videos on menstruation, and then some on fetal development. The one on fetal development had a rotating 3-D representation of a fetus and, for some reason, B found it uproariously funny. She laughed all the way through it, then ran into the kitchen and yelled, "I am a fetus. I am just developing arms!" then she started spinning and said, "Now I am at 26 weeks," and laughed herself into hysterics. I laughed because of her laughter, but I remain unclear on why she found it so very funny. I suppose that I've just not mined fetal development as a source of comedy, but I should start.
     In the waiting room she played with a Rube Goldberg machine. It has two wheels that, when you turn them, move balls up and down a complex series of buckets and ramps. Even I find it very captivating. As she played with it, a young boy about her age came in with his grandmother. He seemed very angry about something, flopping down in a chair, crossing his arms, and giving Grandma the old stink eye. But then he saw B, turning the wheels on the machine, and he went over and asked if he could play. She said sure, and he sat down and started giving directions, to which she kept replying, "I know that," growing quickly annoyed at him.
     "Do you come here a lot?" he asked her, "I do. I am a hemophiliac. Do you know what that means? It means I have special blood. If I cut myself," he drew a hand across his arm, "I could bleed to death!"
     She turned to him and said, "Do you know that I had a stroke? Do you know what a stroke is? It is when a blood clot goes into your brain. If you had a seizure, you would scream!"
     "Oh," he said. And then they repeated the whole conversation.
     I found the conversation fascinating, sad, funny, and very revealing. B does not usually volunteer so much information, and I found myself thinking that the two of them would make good friends. But grandma did not look very happy and I let it go. Children's hospital is very stressful, and you have to get a good read on people before you just approach them.
     On Friday, we saw her neurologist. Apparently I had missed some calls the day before changing the time from 9:30 a.m. to noon, but after some phone calls the doctor came in at 10:30, so we didn't wait long. The nurse took B for weighing and blood pressure, and I went right into the doctor. We have decided to change her meds, from Lamotrigine and Epival, to Epival and Tegretol. The next few weeks will prove stressful, as I wean her slowly off the Lamotrigine while slowly increasing the Tegretol. That means taking three seizure meds until the process finishes. As usual, I hope this combination will work, but have to remain practical that it might not.
     After we got home, the doctor's nurse phoned to tell me that when she had B alone, in response to the nurse's casual chat while she weighed her, B had said she wanted to blow up her school. She doesn't mean that, of course, she picked it up somewhere, and it entered into her series of perseverations that occur when she feels anxious. But, of course, the nurse does have to report it to me, and I have to report it to her new counsellor who will take over her therapy in October. I have had many talks with her about why saying such things might scare people, and had another talk with her after talking to nurse, during which she felt awful, guilty, and embarrassed despite mine and Andrew's assurances that we know she doesn't mean it, didn't mean to say it, and that we both love her.
     In other news, she had two seizures this week, one on Wednesday crossing First Ave. at Commercial, which scared me because I had to hold up the traffic, and one tonight, in the bathtub. I can't pick her up anymore, so I will have to get a bath chair or something, because trying to move her around the bathtub has become very difficult.

The Happiness

     I suppose that when reading about parenting B it is easy to feel overwhelmed by the large scope of her disabilities. It is quite a lot, with the doctors and the meds and the difficulty we face in accomplishing even day to day things. For instance, most twelve year olds have been doing things like washing and dressing themselves for quite awhile, and B doesn't do those things without direct supervision and considerable help. Largely, that's a memory issue. You can't say to her, "Go get your clothes and put them on," because most of the time she can't find the room she needs to be in, doesn't remember what she was supposed to get when she gets there, and needs constant prompts to do what she needs to do even when everything has been arranged and provided. That's just our life.
     Every single day, no matter what is happening, I feel overwhelming joy in being her mother, and I am always keenly aware that she is really doing remarkably well. The area of injury to her brain is very substantial, over half of the right side of her brain. It is not exaggeration to say that  if you or I suffered such a loss we would be suffering a much greater loss of function with truly significant impairment. Babies have an advantage, they have a clean slate of a brain, whereas we, as adults, have mapped our neural pathways. It is much harder to remap those pathways than it is to map them the first time, even if you need to map around a large injury. So babies can fair better after having a stroke than adults.
     But not always. B's pediatrician told me that he has patients with smaller injuries that are worse off, and ones with larger ones, like B, that do better. There is no way of predicting what the outcome will be, and I have always felt, although he has never said outright, that B is doing way better than anticipated given the size of her injury. This is due, I suspect, to the fact that her injury is from roughly the middle of her brain to the back. If it was at the front, where the higher cognitive skills are, I think she would be more delayed.
     There are areas that are just gone, and no amount of mapping around them will replace them. The occipital lobe is at the back of the brain, and she will never have full vision in her left eye (the right side of the brain controls the left side of your body and vice verse). Also, the areas that process sensory and motor control, which affect spatial reasoning, well, their injuries will be permanent. While I expect we will always TRY to help her develop these areas, I also accept that adaptations must be made. I have become really good at letting go of expectations.
     So, all things considered, I absolutely know on a daily basis just how lucky I am. She lived through a terrible health crisis when she was born, grew and hit milestones when she was a baby. Perhaps later than most, but she hit them. And she continues to grow everyday, developing insight, and knowledge, and a really keen sense of humour. And I am thankful to her, because being her parent has been an extraordinary challenge, one that has made me grow up, become kinder, and learn when and how to let go of expectations.
     And none of that means that I don't experience stress from having so much to deal with, or sadness at realising the space that has grown between her and my friends' children as they pass her by in development. It just means that it is absolutely worth it.
  

B's Doctors and Meds

     B has many doctors and other specialists. Currently she has a neurologist, a pediatrician, a GP, a ear nose and throat specialist, a sleep specialist, a pshychiatrist, a therapist, a public health nurse, and in September she will see a special pediatric gynecologist. These are all the people who are currently actively involved in treating her various health concerns.
     As you might imagine, it's a bit exhausting for both of us. This is certainly not a comprehensive list of everyone who has been involved with her, nor does it include the therapists I hope she will see soon, nor all the people at school that are involved in her care and education. Education will get its own posts.
      Today we saw her pediatrician, the doctor who has been with us the longest. He was the first doctor she had, as he was in the room when she was born, and we both like him very much. It is very important to get doctors and other specialists that we feel very confident in, because so many of the treatments  B gets are trial and error. When you are dealing with brain injuries there seem to be no clearcut answers, the brain is very complex. Healthy brains are complex enough, and an injured brain, well, that is an area where you tread lightly with those trained in treating an injured brain as your stick.
    Unfortunately, B's seizure meds don't seem to be working very well. When she was born she was on Phenobarbital, but only briefly, and when she came home from the hospital she wasn't on anything for the first couple of years as she seemed seizure free. When she was about two, she started having Tonic Clonic seizures, so she was started on Clobozam and I was trained to administer Diazepem per rectum for long seizures. She seemed seizure free at about five years old so she came off the Clobozam. When she was seven she started to have Absence episodes. It took me quite a long time to figure out these weren't just attention issues. She was was put back on the Cobozam, but this time the results were horrible. She did not sleep for more than a couple of hours at a time for over a month, which left me a crying mess. She was then put on Lamotrigine. This worked for awhile but then, despite ever increasing dosages, slowly stopped working. Last winter it was decided to add Epival to the Lamotrigine. The Lamotrigine dose was brought down, and the Epival added. For the last month and a half she has been on 100mg Lamotrigine twice a day, and 500mg Epival twice a day, and she is still having several seizures a week. The seizures she is having now are Complex Partials. Last Sunday she had two and slept for most of the day.
     So, now we will look at changing her meds yet again. It is a daunting process, as each old med must be carefully and methdically lowered and only when she is off can the new meds be slowly and methodically introduced. It takes a long time to even get them to therapeutic levels, let alone to see if they work, and then adjust them and give them time to stabilise.
   Every medication change involves having EEGs done. B has an EEG about every six months. She is such an odd duck that she LOVES having EEGS. Not so much for the actual examination, but because I learned when she was just wee that the child will absolutely not sleep for them, which is ideal, if she has had even a couple of hours of sleep the night before. So I have to keep her up the whole night and then, hopefully, she will sleep. Even then, it's not guaranteed she will sleep. I have kept her up all night and had them give her a mild sedative and still she has not slept. But she loves staying up all night. A couple of times a month she will come to me, hope in her eyes, and ask, "Do I have an EEG tomorrow? I forget," and I will say, "No, honey, you have to go to bed tonight," and she is disappointed.
     I'm not. I like sleeping.