Saturday, September 16, 2006

Dark days

It has been a dark week at our house, both literally and figuratively.

The skies have been overcast and dreary, and Bud has been unable to rebound from last weekend's bone-rattling thunderstorm incident. He has spent the week with his eyes riveted to the skies, watching for signs of an imminent storm and perseverating on the possibility.

All day every day this week - and I am not exaggerating here - ALL day, EVERY day, ALL week - from the time he woke until the time he fell asleep, Bud verbalized the rollercoaster of anxiety he was experiencing:

There's no storm. Is the storm is all gone? There is no thunder. Just clouds. Just dark clouds. Is the storm coming? There's no storm. The storm will not come. Just what? Just cloudy day. There's no what, Mama? There's no storm.

This stream of reporting, with just a hint of anxiety, would continue for hours, building slowly in magnitude, it's force swirling below the surface, until suddenly and without warning the levee would break:

MAKE THE CLOUDS GO! NO DARK CLOUDS! MAKE THEM STOP, MAMA! MAKE THE STORM STOP! MAKE THE CLOUDS GO AWAY! MAKE THE YUCKY STOP, MAMA! MAKE IT STOP! MAKE IT STOP!

Then he would cry, sometimes loudly, sometimes quietly, but always with a heartbreaking intensity. After some time, that phase would pass and Bud's anxiety would return to a slow rumble:

There's just clouds. There's no storm today...

As the week progressed Bud became increasingly nervous and tuned-in to sounds and sights. The washing machine. A light flicking on. My husband's footsteps. The flutter of fluorescent lighting. A door closing. The flicker of the computer screen. A truck rolling by. The everyday sounds we hear all day long; the shadows of sights we usually filter out. Every single one of them triggered Bud's startle reflex - "WHAT WAS THAT?"

By the end of the week, we were all exhausted - without question, Bud most of all. On Thursday he started coming down with a cold and the combination of feeling sick and living on an emotional edge resulted in a hard day at school. Thursday evening was very difficult, with Bud's perseveration and anxiety at full-tilt.

It was no better when we woke on Friday. There was mist and fog outside, and Bud sobbed and pleaded with me to make it go away. Instead, I called the school to let them know he wouldn't be coming in, then bundled on his raincoat and boots over his pajamas and took him for a walk through the neighborhood. As I had hoped, the quiet misty neighborhood was quite lovely at 6:30 a.m. and the long walk temporarily calmed Bud's anxiety. I brought him to work with me for a few hours, but the fluorescent lights and copy machine/printer/co-worker noises were just too much for him.

In the afternoon I called the doctor's office. I knew Bud's pediatrician would be out of town until next Tuesday, but hoped maybe somebody else could talk to me and give me some shred of helpful advice. I ended up with a nurse, who chided me for calling at the end of a Friday afternoon, when no one was available to talk with me.

"Maybe you could distract him with a favorite book or some music," she suggested.

She asked if I could "make it" until Bud's doctor was back on Tuesday. I couldn't even answer her (define "make it.") She told me to bring him to the ER if it got too bad. I told her to leave a note for the doctor in red ink with a lot of exclamation points. She hedged a bit at this directive ("Well, I'm not sure what else the doctor will have on her schedule when she returns...if you don't hear from us by Wednesday..."), so I'm composing an e-mail myself.

I'm concerned about this specific round of anxiety, of course. And I want to be prepared for future incidents of bad weather. But, more than that, I want to investigate what this means. This is brand new. This is not something we've ever seen from Bud before. So what is it?

Is this what OCD looks like in a young child?

Is this an anxiety disorder?

Is this an indication that his Strattera dose is too high? (If Strattera is helping him focus, would too much make him hyper-focus on the wrong things?)

The sun came out today, and Bud's internal storm waned as the external one departed. We've been awake for three hours and Bud has only asked about a storm five times, each time with decreasing intensity. He has shifted his focus to his birthday party, which we'll be having this afternoon, and I have spent the morning thanking God and the universe and the angels who watch him for letting him celebrate his birthday under sunny skies.

We've got a reprieve, and we plan to infuse it with a mega-dose of joy. Maybe we can somehow build our emotional reserves - squirrel away as much of the happiness and the calm and the carefree spirit as we possibly can - and save it for a rainy day.

18 comments:

Daisy said...

You're asking yourself all the right questions -- I only hope there are answers to at least some of them. Curses on the nurse who doesn't understand the seriousness of your situation!

kirsten said...

happy birthday, bud. i hope it's wonderful for you.

it does sound like anxiety disorder (my niece has that) but i know nothing about the drug he's on, so i don't know. good luck!

Jannalou said...

I hate to say this.

It could be the Strattera.

I saw my psychologist yesterday and we did a depression inventory - I'll be blogging about this at some point, but basically the Strattera I've been taking (1) isn't at a high enough dose to be therapeutic, and (2) is probably part of why I'm now clinically depressed (5 more points and I'd have been where they start hospitalising people).

Also, Strat hasn't been tested much on children... and it's only been around for about 3 years or something. Remember that kids often react to meds differently from adults - and people with autism react differently than people without, just like people with ADHD react differently from people without. Etc.

I'm going to be put on Wellbutrin next - my psychologist wrote a note to my doctor about it. If that doesn't work, we'll try a combination of Effexor and Dexedrine. Need to get the depression under control, not just the ADHD.

I always look up meds at drugs.com so I know what I'm getting myself into.

Kristina Chew said...

Happy Birthday sweet Bud---hoping for sunshine all day, in and out!

I can't quite put my finger on it but anxiety has been a part of such "attacks" for Charlie----as he has gotten older, he gets anxious in anticipation of things that cause him a lot of emotional turmoil (start of school, visits to his beloved ocean, my parents visiting).

Charlie took Ritalin for a week and it made him more anxious than ever---hyper-focused. Big hug from us to all of you.

Milehimama said...

It could be any number of the things you've already thought of...or it could be Seasonal Affective Disorder (we call it Seasonal Anxiety Disorder around my house...) a cloudy day, the rain, the barometric pressure is off... and my son starts getting anxious too. Having nightmares, worrying. He's 8, but 2 weeks ago a tropical storm came through with 3 days of rain, and he even started wetting the bed again. I've started noting the weather on his mood charts.

Lisa/Jedi said...

I agree that you are asking the right questions to help Bud (in spite of the indefferent medical system, grrrr!). As you probably know, B has had OCD symptoms since he was 8 years old, which is the "classic" age for this sort of thing to appear, according to his pediatrician (who's area of research is OCD). The inability to tear his mind from certain thoughts & fears has certainly been the hallmark of his OCD presentation, & I can empathise with the confusion & distress you are feeling. B's psychologist was the best at helping us with B's anxiety, & the fortuitous discovery that his pediatrician's specialty is OCD in kids was a very helpful, too. I hope that you'll soon have an understanding of what Bud is experienceing & find ways for you all to cope. My recent reading has helped me to understand that OCD is part of the spectrum, & so it's been easier to wrap my head around the symptoms in a way that is most helpful to B. I'll be thinking of you all as you explore what's going on...

MOM-NOS said...

Kristina, both Ritalin and Adderall had that effect on Bud. Strattera is not a stimulant so it has not that effect on him so far.

Janna, thanks for sharing your experience. We weighed all of the things you mention before we decided to try it, but Bud's been on Strattera for more than a year with really great results. We raised the dosage early in the summer, which is why I'm thinking that all this may be a side effect of that.

MOM-NOS said...

Lisa/Jedi, I've actually been thinking about B a lot as this has been going on, and thinking that you could be a tremendous resource for us. Thanks!

for what it's worth said...

The complete feeling of being overwhelmed is exactly what I experience during an anxiety attack. Noises which are part of my everyday existence push me over the edge. The white noise of a fan is the most trying of late. That combined with the barometric changes is sending me into a quiet zone. We have turned off all the phones, no TV or radio, just quiet today.
I understand that children with ASD have a sensitivity to noise in many cases, perhaps it is even more acute with Bud's apparent anxiety during the storms.

below is a link to the research being done here on the ADHD bio-feedback project...it might be worth a read to see if any of their suggestions could work, or whether this is something worth looking into. Sorry I didn't post it with my other diatribe.
http://www.capitalhealth.ca/NewsAndEvents/NewsReleases/2005/ADHD_neurofeedback_study.htm

Mamaroo said...

I am so sorry for the week Bud has had. I hope we keep this sun around here for a long while. Happy birthday Bud!!!

Roo had a particularly difficult day today despite the sun being out. I have no idea what was causing his distress. My guess was stomach problems, but I don't know that for sure. He definitely has anxiety issues though. I was wishing so bad that he had some words to tell me what was the matter with him today. He just kept crying all day on and off. He was not able to verbalize at all to give me a hint. I am exhausted and am going to bed hoping that tomorrow is a better day.

Teal said...

Shame on the triage nurse who couldn't recognize an emergency when she heard one. If Bud had been bleeding, would she have been so unconcerned? I think not. You might want to touch base with the pedi to ask what to do in the future if he/she is not around and something comes up since clearly, the nurse is not qualified to triage these kind of issues.

What about regular old tranquilizers? The "as needed" kind like you take for an airplane trip or something?

On a different note, a friend of mine has a son with SI issues, and weather is one of his things. I've asked her to read this and offer any helpful advice she can.

laurentius rex said...

If it keeps on rainin', levee's goin' to break, [X2]
When The Levee Breaks I'll have no place to stay.

Mean old levee taught me to weep and moan, [X2]
Got what it takes to make a mountain man leave his home,
Oh, well, oh, well, oh, well.

Don't it make you feel bad
When you're tryin' to find your way home,
You don't know which way to go?
If you're goin' down South
They got no work to do,
If you're going down to Chicago.

Cryin' won't help you, prayin' won't do you no good,
Now, cryin' won't help you, prayin' won't do you no good,
When the levee breaks, mama, you got to move.

All last night sat on the levee and moaned, [X2]
Thinkin' about my baby and my happy home.
Going, going to Chicago... Going to Chicago... Sorry but I can't take you...
Going down... going down now... going down....


And I suppose that will go down like a Led Zepellin, but if I lived anywhere that had to rely on levees for storm protection I would feel uneasy too.

Well I am off to catch a train later today, of course it might never get there, or I might never get to the train. Still you would not have to put up with any more of my posts then.

MommyTof3 said...

happy B-day Bud!!!
Poor little guy. Bailey has Anxity-nos also with his PDD-NOS diagnosis and he gets like this sometimes. Our basement flooded abt 2 years ago and we hear abt it all again when storms come-or when there is ONE cloud in the sky-its constantly on his mind....and Constantly has to be reasured the flooding was a once in a life time deal...:(
Hugs to you and bud-Im constantly praying for clear skies here too......

kjoel said...

I can't offer any quick advice, only to say that it probably won't last forever. When he was about 2 to 4 yrs old, our son had a similar reaction to airplanes, after a plane from the local Nat'l Guard base flew very loud & low over his school's playground. After that, he reacted badly to any airplane, no matter how distant and silent.

One thing we did that seemed to help was give him strategies to help him feel in control (local coherence?). He had an umbrella handy for outdoor encounters (this made him feel safe), he was allowed to go in the house or car when possible, we began telling the airplanes to go back to the airport (which always seemed to work, as they left our local airspace eventually). We gave him earphones to wear, too. We tried to honor the fear even as we worked to lessen it.

This wasn't foolproof - I remember many a horrible time when none of these ideas worked or were possible. The OT at our school worked with him on this generally and specifically, and eventually he was desensitized to a certain degree. He was sensitive to all loud noise for awhile - firetrucks, loud classroom, tractor engines. He's 6 now, still has some issue with loud noise, but is no longer phobically anxious or fearful.

I'm sure you'll hit on something that will help Bud - although I know exactly how frustrated and powerless I felt trying to help my own son through those times.

Jannalou said...

Janna, thanks for sharing your experience. We weighed all of the things you mention before we decided to try it, but Bud's been on Strattera for more than a year with really great results. We raised the dosage early in the summer, which is why I'm thinking that all this may be a side effect of that.

Good - I'm glad you checked everything out before you decided to use it. Too many times I read about kids whose parents haven't bothered to question the doctors who recommend random medications for their children: everything from Risperidal to Zoloft to Ritalin - without properly making sure that the child needs the medication, without looking into other possibilities, without taking into account any lack of research on the use of said medication in children, and/or without understanding the side effects.

That's why I use the web site I linked to in my first comment; I can read the physician's notes on a medication, which means I can read the study results and find out what dose I'm probably going to start at - and I can see a list of all possible side effects, from extremely common to extremely rare.

Wendy said...

My heart goes out to you...and little Bud. Sounds like a lot to deal with...esp for a whole week. This may be a dumb idea but have you thought about renting one of those movies about thunderstorms? Bud would be safe because it's only on the TV, not in real life, and he may see that yes, they can be scary but they're a natural occurence and as long as he stays inside his home during a storm, he'll be safe. Maybe it's just his fear of the unknown (the sound of thunder, the quick flash of lightning) so maybe if he watched a movie about storms, they wouldn't seem so scary. Just a thought.

gretchen said...

Sorry I'm late to this, MOM and Bud. We had some computer problems this weekend (damn those teenagers and their IM!) and I'm just now checking in.

I can certainly relate to the perseveration issues, but thankfully not the anxiety. Our experience with that has been in intervals (when it's time to get on the school bus, etc.) but not all-day worrying about a thing. I hope that it does turn out to be a medication issue that can be quickly remedied.

I hope you'll have a good report for us about Bud's special day. I can only send you some hugs and hope that the seas are smoother this week.

holly said...

I just recently discovered your blog and I truly enjoy it. You are a brilliant writer. I know your students will learn much from you! On the anxiety topic. Have had my 8 yr old on a low dose strattera and prozac combo for a little over a year now. It has really made a difference. We started the strattera first for the focus issues with some success but still struggling with too much anxiety so added the prozac. He's doing very well with this. If I had to change anything though, I would lower the dose even further. During a particularly trying time, (a visit from my 85 year old mother) we missed several days of meds and for the first couple of days he improved dramatically in every area, then as the meds began to clear out of his system, his anxiety skyrocketed and all he did was stim for 3 days until we got the load back up in his body.
About this time I remembered back to a Temple Grandin talk I attended where she spoke about how important it is for people on the spectrum to take the lowest possible effective dose of medication due to the difference in brain functioning. This got me thinking that maybe the lowest dose wasn't even low enough for D. because his functioning improved as the load started to deplete but then he lost it when it was depleted too far. So at this point I'm considering asking his Dr. if he could take it every other day or something. Can't exactly cut a capsule in half. So I don't know what we'll do, but I just thought I'd throw my 2 cents worth in.