Autism Watch: 2007

Posts Tagged ‘migraine

BB woke up this morning in an awesome mood. He woke up before me, in fact, and woke me up. (Not something I view as his best choice of the day, as I was having a really cool dream about traveling…) He was being uber-sweet, turning on my coffee pot, and he even got me a big coffee mug and the creamer. Ahhh, life is good. A relaxing morning, a promising day at work, schoolwork planned and prepped, good coffee and a happy BB.

Then it happened.

Mom, I have a headache.

What level? 6.5.

I give him an ibuprofen and get him settled on his bed with a movie.

Thirty minutes later, it’s 7.5. He decides he wants to forego the next prescription in his migraine arsenal, so I let him be in charge.

Thirty minutes later, it’s still 7.5. Sorry, BB hon, you need to think about the pill.

“Mom, it makes me dopey.”

Yes, son, I realize that, but dopey or pain, out of the two, isn’t dopey better?

He takes the pill. Cut in four tiny pieces.

He snoozles a little, watches more tv, and two hours later, he’s out of the room, bored.

Then what I call a depression cycle rolls in. He sobs, he cries, he’s bored, this day is bad, it’s awful, it stinks, it’s not a good day.

Bud, I’m right there with you. Not only do you feel like crap, but there’s a work issue that’s out of my hands. Sometimes, being a manager means you have to make or take part in decisions that are difficult. Things that have nothing to do with you personally but are part of the job; in management, decisions are made that are in the best interest of the company, and they’re not always pretty. I guess it’s human nature to shoot the messenger, but it can really make you wonder sometimes why people don’t understand that or want to make you out to be the bad guy when you’re not operating in a vacuum. I’d like to be all-powerful, in charge of all the things I can do each day without getting approval, different from now, but then again? Maybe not. Oh well, it’s a job and I’m fortunate. This job allows me to help my family and be home with BB, and he desperately needs it.

So what do I do? I turn off my work machine. I get out the popcorn maker and get BB settled on the couch. Turn on On Demand, rent Rio, and laugh together. Perfect medicine for both of us.

Autism has brought me extremely close to my son. It’s not something I’d ask for — my other kids obviously can’t get the same amount of attention, and it’s not fair and I hate it daily — but you take what you’re given and you move forward with it. I can’t afford to let a bad day at work get me down, and it’s a three-day weekend, time for a lot of prayer, relaxation, hanging with the kids and time with my best friend, my husband.

Migraines, stay away, we’re done with you here for a while. Give the kid a break, okay?

It’s day 4, and we almost didn’t make it to school this morning. After yesterday’s headache, he was ‘off’ all night. Edgy, easily irritated and seemed unable to focus on one thing for too long. At bed time, we had a major meltdown on our hands. Apparently his service dog hasn’t slept well the last two nights and it’s keeping BB up at night. I knew about this, but I didn’t know it was to the point of near hysteria that he’d have a third night like this and keep BB up again. After 15 minutes of him yelling and crying, hitting himself and us having to stop him and try to talk him down, he decided to listen to some of our suggestions for keeping his dog happy at night, thereby allowing him to sleep.

It took a while, but with some furniture rearranging, we moved the carpet over to one side and angled BB’s bed so that the service doing, who we’ll call “C,” was only able to roam one side of the room, and with the carpet there, BB wouldn’t be able to hear his nails on the hardwood floor. C’s bed was over there, and BB could still be near him without the noise. We then watched Dragon Ball Z Kai together (not the world’s best show, but he loves it) and he went to sleep, 30 minutes later than normal, but it was barely dark out. He insists on being in bed no later than 8:30, some nights as early as 8:20, so I was worried this would upset his sleeping pattern but he seemed fine.

Fast forward to 6:15am, when I wake him for school, and I hear him moaning as I walk down the hall. He said he’d woken up about 30 minutes prior with a ‘super bad’ headache. I get him a pain reliever immediately, massage his head, offer him water, and do all I can to get him to be willing to go to school. That’s where I felt like a really bad mom, because I don’t want to leave my bed when I have a migraine, yet the schools out here have the world’s most ridiculous policy for attendance. It doesn’t conform with the state’s policy, so we’ve pushed it a bit as the state allows for 10 days of unexcused absences, and four that you have a doctor’s note for, which is fair — I really do believe kids need to get to school and it’s important to make rules — but what’s not fair is that our school starts threatening truancy at day four and makes you attend an attendance meeting. You quote disability laws and they state that we have to have a document on file. Uhm, I think the IEP and medical diagnosis of autism and migraines should suffice, yes? But no, we have to have a note each year on file and even then, they want to make sure we’re ‘being truthful’ and not taking advantage of that. So you end up taking your child to a doctor for a mild cold that’s given them a temp of 100, not enough for a doctor to do anything more than write a note that you were there and enough for you to pay the bill and expose your child and yourself to even worse illnesses.

I digress.

I finally got him up and moving this morning and got him out the door..a few minutes late and with him being oh so slow that it was really hard not pushing him to move faster. After all, tardies count against the 10! We have to weigh the balance between being a mom not making your sick child go somewhere that he’ll only be in pain, and the school hassling you. I partially think it’s the area — we’re ex-homeschoolers and we believe that while schools are important, they’re run by humans and parents have the utmost choice, and people locally tend to believe what school staff says without question. I also think that I’m just burned out on years of expectations that are unfair. He’s sick, he shouldn’t be at school where it’s only going to make him worse. If school is making him this anxious, it’s not up to me to just continuing to increase his medication, but to them to find out what they can do to decrease the anxiety.

So I sit and wait for them to call and give me an update. I’ve already spoken with the nurse first thing, but it’s up to the teacher to let him go to the office if his head hurts, and if she doesn’t let him..well, I’ll be there in the office first thing, but that won’t fix the day for him. For him, when he has a problem with something once, he’s put off from ever trying it again. Let’s just say that the day that It’s a Small World at Disneyland broke and we were ‘trapped’ for 15 minutes, five years ago, assured that we’ll never ride it again. I liked that ride.

For those of you dealing with anxiety, what do you do? BB’s headaches were far less frequent over the summer, in the environment without bright lights, too much noise and stress. Now that he’s back at school, we can see him getting stressed and anxious, and we feel the headaches are a side-effect. We want to try something to help — biomedical is the first goal, followed by medication but only if absolutely necessary. How do you handle autism and anxiety? Where do you see it cause the most problems?

On Tuesday, BB had to go back to the neuro to discuss his migraines. It’s a drive to the neuro, about 40 minutes, and includes crossing several bodies of water and even more two-lane highways. It’s not a rough drive, but I do prefer to do it during daylight. By the time we’re there, BB is already impatient, and on the drive home? We’re required to make a pit-stop, either at a store for something cool, not a habit I want to encourage, or at a drive-thru for fries or nuggets. Since we’re very particular about what fast food we’ll allow him to eat, it’s not a slam-dunk, so I have to plan to drive a certain way in order to pass an ‘approved’ drive-thru. Nothing like turning a simple doctor visit into an event!

This visit, I told BB we’d stop by and get nuggets on the way home. He’d had a rough day at school, and I witnessed, when I picked him up, a teacher snapping at him, pretty loudly and over-the-top harshly about dropping a piece of paper on the ground. (Get a grip, woman, and remember, he’s someone else’s child. Discipline your way at home, but at school, there are nicer ways to reprimand.) He railed on and on about it all the way to the doctor, but the minute we got out of the car, his mood changed. Phew. He loves the doctor’s office, and is especially fascinated with the little door from the bathroom into the office. You know, the specimen door. I had to remind him, dude, look, urine tests sit there. Imagine what you’d be touching if you put your hand there or get your face too close to the door. It did not deter him enough, so I was really excited when he ran to the nurse counter to ask for a piece of note paper. Then he grabbed my check-writing pen out of my hand, as I’m paying the $30 co-pay, to write on this note paper. Then he drops it into the comments/suggestions box. Scary?

We get called in right away. He gets weighed, and I learned he’s gained 3 pounds in 3 weeks. Periactin anyone? That’s the nudge I needed to change medications, as it wasn’t doing enough for his headaches anyway. On into the room, where he regales the nurse with lovely stories from tv shows I wasn’t home when he watched (no, nothing that bad) and then tells the nurse “I’m serious, this is a serious story.” Doctor comes in, we do the exam, talk about migraine med changes, and BB starts with another story. And another. Thankfully, the doctor understands and was interested, quite possibly even entertained, but I’d lost all control. Short of taking him out of the office or physically restraining his mouth, he wasn’t stopping. Yep, ADHD and OCD displays their ugly heads quite evidently, and at least it’s in the doctor’s office, right?

The nurse empties the suggestion box. Finds the note. “Dr. XXX is epic!” We had to explain that epic means cool, but they seemed pleased. Phew. I’m really glad, as we have to go back in six weeks if the new medication isn’t working.

Epic. I guess if you have to go to the doctor a lot, it’s good to have an epic one.

Mommy, I need a pain reliever. It’s at a level 7.8.

That’s what I heard last night around 8pm. Apparently the school nurse also heard it around 1pm.

I heard it the afternoon before. The rating is a little different each time, but 7.8 got my attention.

Two years ago, my son went to his neurologist for a follow-up, where I mentioned his frequent headaches. I get migraines, as does my 16-year-old daughter. (Can I just say how miserable it is watching your child going through insufferable head pain that you know kills you just to have your eyes open?) The MRI was slightly abnormal, but there was no visible cause for headaches, so they were determined to be migraines based on the presentation and other tests he ran. He was prescribed a medication to take daily, but after waiting two days for the prescription to be filled (it had to be ordered) and seeing him not have another headache, we decided to not risk the side-effects. Fast forward to now, he’s still not on medication but he’ll go a few weeks at a time with frequent headaches, then a few weeks of pain-free time.

He goes back to the neurologist on Tuesday, where we’ll seek treatment as well as a note for school attendance. To me, it’s pretty obvious that a child diagnosed with autism and documentable migraines would miss some school, but I am not on the state school board.

Anyway….the wasting of the doctor’s time aside, does your child with autism experience headaches? Migraines? What do you do?

I’ve done a little research. I found this:

Reversing Autism: The Story Behind Feast Without Yeast, an article about a book that appears to detail a dietary change that will reduce headaches

Biomedical Autism Intervention

Autism Comorbidities, part 2 of a blog series about migraines and autism

Not a lot of mainstream information available, so I’m interested in others’ experiences as well as any references anyone may have. I want to be well-armed for the appointment, as I need to find a way to keep barnacle boy pain-free. He’s got enough to deal with already.

I whined yesterday about all the things going on, but once just isn’t enough. Be warned.

Awards event at school yesterday, and ds was unnecessarily upset (not his own fault, imo) by a technicality. Sometimes I really wish people would understand how important these things are to ASD kids. Little upsets that just aren’t worth the fight can ruin an entire afternoon. And this did. I’ll leave it at that, but I just want to be like other parents, go and watch something and have a smiley child who is enjoying himself. Heck, I’ll forego the smile, I just want him to enjoy himself.

With no respite last night, I had to tote him along with me to Borders. He didn’t want to go, but the bribe of a chocolate chip cookie was too strong to ignore. But..and this shouldn’t surprise me, given how our week is gone..Seattle’s Best was out of chocolate chip. They had some delicious looking other flavors, but no chip. Oh no, he’s getting anxious. Oh look, a bakery next door. Run across the street, find the cookie. Crisis averted. We find Jenny’s latest book on the “new” shelf, pay the cashier (feeling the ridiculously increased tax hike for the first time and nearly cry…if I feel it on a book, what about when I shop for clothes for the kids or order his new supplements??) and enjoy my non-fat Blackberry Cream Latte. The little things in life. I was trying to keep ds calm about his cookie, then realized: would I be upset if I couldn’t get a coffee right then? Probably.

I am exhausted. I am so thankful it’s Friday. I’m not sure if the weekend will be a relaxing one, it’s too early to tell — as in, I don’t know until five minutes beforehand, and sometimes not even then — but at least I won’t be throwing work into the mix. I’ve been working earlier most days anymore, so I can be sure to put in my time around any issues with ds. It’s do-able, but when you dream of being chased by scary dogs, when ds isn’t coming into your room due to another nightmare, sleep is fragmented.

Today we’re going back to Kirkman’s chewable multi-vite. Ds isn’t currently GFCF so it’s fine. We saw the biggest improvement on it, but he hates the taste. I am not a walking checkbook, so I’d like to get him to use this bottle before I switch to a liquid or other version of it. I’m also starting him on double S. boulardii, a good probiotic to combat the yeast that’s probably built back up in his system. We did an anti-yeast protocol around 18-20 months ago and it was fantastic but it can return so it’s a good time to try again.

And, because it’s fun, ds is home from school again. Okay, it’s not really fun but you gotta laugh to get through the neverending stuff or you’ll go crazy. He woke up at 5:40am and said his leg is burning. No swelling, joint is fine, but it hurts to touch. What now? He’s near tears, and when he’s not looking, we tested it by touching the leg. OUCH!! So, a new symptom added to the mix. We’ve decided that it’s time to go back to no dietary infractions: all homecooked/homebaked stuff and no dyes. (Dad bought him Fruit Gushers earlier this week, which to me is just a big package of HFCS and dye, but Dad was giving in to a sweet boy who’d already had a lot of stuff going on and really wanted to try the gushers. Who knew.) He also had a couple of processed foods, like pizza pockets. Yanking those out of the diet too. He was already acting odd/off by then, with the lip licker’s dermatitis and headaches, so at least we can’t blame those on bad food, we really are careful with his diet. But this leg thing has thrown me for a loop.

It’s a rainy day here, so I’ll be getting the fireplace going shortly and will make it a snuggle & cuddle day. We got AT&T U-verse installed, so he can watch anything he records on any tv, and he’s got his own tv in his room. Well-worth the cost. (And the money we’re saving over our prior services is a good thing, too. TV, phone and high-speed internet together is way cheaper.)

Enjoy the weekend. Not sure if I’ll be blogging or not. I do have to say I’m disappointed I saw so little about World Autism Awareness Day, other than some online mentions in the appropriate autism-related places/communities. Nothing on TV or on the news. I guess it’s less important than what the latest loser celebrity is doing or other ridiculous news stories I did see on. Shows you where our priorities lie.

Tomorrow’s Barnacle Boy’s MRI appointment. We’ve done the social story, we’ve talked about how he’ll be at school late, and we’ve burned the CD for him to listen to during. I think we’re set, except for the one thing I can’t plan for or prevent: a meltdown.

The last couple of weeks, bb’s been having a lot of ‘short fuse’ moments. Out of nowhere, he blows up, usually over pretty small things. No clue when it’s going to happen, it just does. In addition to the verbal assault, his weapon of choice is a swift sharp kick to the shin. Ouch.

I have no idea what’s causing it. Meds not strong enough since he’s had a weight gain? Aggressive phase? Not feeling well?

Right now, I’m leaning towards not feeling well, though we have no real idea as to why he doesn’t feel well. He’s getting the headaches still, but they’re not 24/7. Residual feeling from headaches?

I picked him up early from school (again) yesterday. Fever of 101.7, though my thermometer here at home showed 98.7.  Looks like I may need to consider a new thermometer while we’re at it. He went to the nurse a few times again today, no fever but not feeling well. He’s going to take a pain reliever and see if he can make it the rest of the day. The message we’re trying to send is that coming home from school is only for when you really don’t feel good. None of us think he’s faking, at this point; you can see his eyes seem not quite right, and we can tell he’s not feeling well when he says he has a headache, but he also is not the best at communicating his physical feelings.

So what now? We’ve tried to get him to explain his feelings to us, but we get a lot of “I just want to be left alone.” We can’t read his mind, and that apparently irks him. (It irks me, too, but I can’t let him know.) He says he feels his friends are ignoring him. He says that we don’t let him do the things he wants to do. He says a lot of things, but where are we, really?

I’ll be glad when tomorrow’s MRI is over. The doctor can then read the results of everything (bloodwork, too) and see if there’s any physical reason. Then we’re looking at how to treat the headaches/migraines.

Meanwhile, I wore my Green Our Vaccines t-shirt yesterday. What better opportunity than St. Patrick’s day, for a non-green/non-Irish person? I’m still reading, with interest, the back-and-forth between everyone on vaccines, and I still believe that we need to re-do our vaccine schedule along with removing the garbage in them. Did you know they pulled mercury from dog vaccines because it’s a neurotoxin? Apparently dogs are more important than kids, pregnant people, and the elderly who are supposed to get the flu shot. Who knew.

I’ll update after the MRI. I’m coming back to work right after, so it won’t be an immediate update…I’ve been so bad at updating anything lately, this is nothing different. We are going camping this weekend, and bb’s really looking forward to it. Being outdoors seems to really help him, though there’s always arguments because he feels other kids leave him out. What’s new.

Yep, for reals. That’s a lot of the reason I haven’t been here much lately. I got to the point where I started to think twice about blogging about ds. What’s new to talk about? What will people want to read about? It also gets harder to discuss some things at times. Did I need to stop blogging and re-focus?

After a lot of thought, I’m back blogging. I’ve probably lost most of my readers, but we’ll see. I’ve taken some time to think about the whole point of my blog, and while I’m not sure of the real point yet, there’s still plenty of things to blog about.

Like migraines.

Ds started having headaches a few weeks ago. To be clear, he’s always had them periodically, at least every couple of weeks, and they’ve just gotten a lot more frequent. I’ve spent a lot of time running to the school to either pick him up or give him some pain reliever. I’ve spent equal amounts of time trying to talk him from needing to come home. In the end, he missed a few days of school by either leaving early or staying home entirely for a headache. That just makes it more stressful for him, as he has homework to catch up on. But, his teacher’s been understanding and he’s not been overwhelmed. The doctor ordered bloodwork, and an MRI. We had a social story about the MRI, including pictures of what to expect. (Finding a picture showing the inside of the MRI machine was a challenge, I could only find cartoon cutaways.) Hopefully, the MRI will show nothing, and we’ll move on to treat the headaches as migraines. The bummer is that it may mean an additional daily medication as preventative, and the first doctor pointed out that headaches can be from seizures. I really didn’t want/need to hear that — we already know the path my daughter’s headaches took, so I’m praying ds goes a different direction. No sign of anything else, so it’s a realistic hope.

On other fronts, things are going well in school. He’ll likely be in the GATE program next year. He gets easily bored if the work isn’t challenging enough, and he hates to have to wait for the other kids to finish work after he’s done. And he’s distracted by their noises and poking and prodding. (Of course, I’m sure he contributes his own poking and prodding and noise.) He’s back to finger flapping quite frequently, though he’s twirling his hair a lot less. I’m almost thinking I liked the hair twirling better. We went to Knott’s Berry Farm this past Saturday, and he even waited in a couple of short lines without issues…but we were close.  Thank God their new special assistance pass system works much better than their old non-successful antiquated discriminatory policy. This time? We got immediate boarding the first time on each ride, and a timed boarding, without waiting at that time, on our second ride. We never got around to testing that out, the first time on each ride sufficed as we only lasted until 4pm. La Revolucion did him in, a fast, twirling upside down ride that proved to be too much for him. “Mom, I have a headache” was instead “Mom, that made me feel like I was gonna throw up.”He never did throw up — he inhaled a bowl of Dippin’ Dots but still wanted to go home.

While at Knott’s, he found a new ‘pet,’ a rock with eyes named Watcher. We couldn’t find Watcher before we went to school this morning, but he didn’t freak. No meltdown. No excessive worry, just a calm assurance we’d find it when he got home. And I did find it, hidden in a little box he put it in last night so he had a ‘new house.’ I know he will be excited to hear that when daddy brings him home from school this afternoon.

Back to the headaches. We’ve got a standing order at school for him to receive pain reliever as necessary, and we’re keeping a headache log. Think positive thoughts for us as he has his MRI a week from Thursday, soonest they could get him in.


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