Archive for the ‘adhd’ tag
Neurofeedback: I can’t stop gushing
B came home from school just now… this makes four days in row without Adderall.
Me: Tell me about your day – how did you feel?
B: You're really curious about this aren't you? [lol]
Me: Well you're not taking your medicine so I worry that everything is going okay. Remember last month when you ran out? You said you noticed that you didn't listen to the teacher and doodled more.
B: Yep, no medicine today! I feel great. I don't feel as nervous or shy either. I stand up for myself better. [WOW, I say. Wow.] I just feel more… playful.
I was expecting that neurofeedback would help her concentrate better and hopefully do better at math (a result which, of course, still remains to be seen). That was, in fact, the height of my expectations. I was not expecting this sparkle and exuberance and energy and newfound confidence.
I can't even describe how it makes me feel to see her like this and hear her saying this stuff.
Butterfly, cocoon. You know. Amazing.
She was pulling her hair out.
I've been posting here about my 10 year old daughter and the neurofeedback therapy she's undergoing to help correct her problems with ADHD – Inattentive Type (no hyperactivity).
I thought I'd take a trip down memory lane with some background on her ADHD diagnosis and the journey up until now.
B started struggling with school when she was 6 years old and in first grade. Her performance was fine. But she was clearly suffering anxiety about school, complaining about how hard it was, how much she hated it, how the classroom was too noisy and she had trouble hearing the teacher. (By my observation, the classroom was pretty quiet…)
By spring of that year, she started pulling her hair out until she had a large bald spot on the front of her head (trichotillomania). (Good lord, I cried – it is devastating to see your gorgeous child self-mutilate in any capacity. 
)
At this point in time, however, I did not correlate her school complaints with the trichotillomania. It didn't even occur to me that any of this had anything to do with any kind of learning disability. About the time the hair pulling started, we were going through a rough family time. Also, my research indicated it could be just one of those things kids do sometimes and she might just grow out of it. Then it was summer and life calmed down and B seemed less anxious and she stopped with the hair pulling.
Then it was fall, a new school year, and after a few weeks it all started up again. Red flags fluttered. I described B's issues to a teacher friend, and she suggested having B screened for a learning disability. I was shocked at the very idea. After all, the kid was doing well in school, she just didn't like it. I was looking for advice thinking the problem was a teacher or curriculum mismatch. She said some of the things I described made her think B might have processing problems, specifically she suggested auditory processing disorder (APD). What?! I was in unchartered waters here – it just never occurred to me that we were dealing with anything this profound. I was skeptical, until I researched it. We started the process.
We went the private consultation route. Since B's academic performance was adequate and the waiting lists for school district resource access were long, well, time was wasting. By November 2003, we had some information: The psychological evaluation and educational assessment showed her IQ as "borderline intellectual functioning" – in the 70s. I cried and cried – how could this be? She was a great reader, getting math concepts at grade level. Obviously a smart *enough* kid – with, if anything, an above average ability to succeed since she had good grades, in spite of her so-called intellectual deficiency*.
The problem for B was she had to work 10x as hard as her classmates to perform at the same level. She's an overachiever; she has a great work ethic and she was working her tail off to succeed, to keep up – hence the stress and anxiety. So far, this plan had been working for her. But she was doomed to fail as the expectations intensified and the difficulty increased.
She was also, every day, missing out on basic data collection that you take completely for granted in average kids. She's not paying attention to the world around her, so all kinds of common sense stuff and social cues were not dinging her radar at ALL. Altogether, this represented a major disadvantage for her, and days just laden with frustration. I was and remain impressed with her TRUE intellect – how she was able hold it together and put on such a good show for so long. There was no doubt in my mind she was a smart girl. If anything, I came to realize that she was probably even smarter than I had ever realized.
*Note: When the IQ test low, the score for an untreated ADHD kid is completely thrown out. Obviously it's NOT a measure of their true intelligence – especially when this gap exists between IQ score and academic performance.
(And, by the way, my experience is that these kids are the ones who fall STRAIGHT through the gaps. Decent grades? No matter if those grades make you literally pull your hair out from the stress, no IEP for you. We've had wonderful teachers, however, who have always been very nurturing and supportive to B, and have gone out of their way to help with classroom accommodations. I've always thought this was in part due to B's special charisma and sweetness that just makes people want to help her.)
Anyway, that evaluation narrowed her diagnosis down to ADHD – Predominantly Inattentive Type and/or APD. A soundproof booth session with an audiologist ruled out the APD (in fact, she scored above average for auditory processing), thus ADHD-I (no hyperactivity).
This blurb describes B perfectly:
"Daydreamers" with ADD (ADHD)
Girls of the inattentive variety are often shy daydreamers. Their inattention in class may be overlooked because they try hard not to draw attention to themselves. Many quiet girls with ADD (ADHD) seem to be listening to their teachers, while
their minds are a thousand miles away. These girls often seem anxious about school. They are forgetful and disorganized in completing their school work and become very worried as assignments come due. When sent to their room to complete homework they may quietly daydream at their desk unless they are kept on track by a parent sitting beside them. They may seem easily overwhelmed and operate at a slower pace than other girls. Some of these girls are anxious or depressed, and are often mistakenly seen as less bright than they actually are.
I wouldn't say she thrived, but Adderall made a tremendous improvement in her day-to-day functioning at school. The anxiety dissipated, the trichotillomania ceased. Through third and fourth grades, her performance has remained basically average, but – with some extra tutoring in math – it was less stressful for her to maintain.
Until this year. Fifth grade math has been her downfall. She's not hairpulling again (yet), but the anxiety is back full force. Probably she's due an increase in her medication dosage. But we wanted to try something more holistic first – hopefully to eradicate the needs for meds entirely. And that's where the neurofeedback came in.
We don't know yet what the long-term future holds for B, but the immediate effects have been really exciting! For the past three school days, she has requested to NOT take her meds, and she tells me that she feels "WAY better" than she did before the neuro, even when she had meds in her system.
Today I asked her what school has been like these past few days – and this girl, who ALWAYS tells me school is boring and she hates it, said: "I didn't think neurofeedback would make me feel like this! I love it! I like going to neurofeedback! It makes me feel so much better and happier! I like school a LOT better! I'm more energized and it's more interesting!"
And yes she's saying it with all those exclamation points as she bounces round the room. I've never seen her with so much energy, especially after a long day at school. She is blissed. out.
She also told me today that her teacher noticed that she had a lot more energy than usual.
It's like a fog is lifting for her.
If her behavior continues in this vein, watch out! I may become very evangelical about neurofeedback in, say, 6-12 months. 
Burned. Out. (And good stuff, too.)
Work: Lots of projects and deadlines. I need to get more done, faster. This entry is not helping. But all the little stuff I've been wanting to post about has been intruding on my focus, so blogging right now is actually good for the big work picture. Yep. It's true.
Health: Most of the kids are sick with a cold, one which Scott and I are desperately begging our immune systems to repel. I'm almost 14 weeks pregnant. Food sounds good again. Haven't felt the baby move yet, but hoping I will notice it any day now. My energy levels have improved over the past few weeks, except I'm draining the reserve as quickly as it replenishes, because…
Evenings: Have been hell. Neurofeedback or orthdontist or parent teacher conferences were scheduled EVERY NIGHT for the past TWO weeks. And some days, there have ALSO been daytime doctor appointments. I'm a sloth. My body and my psyche are not used to this treatment. Thankfully a more normal routine is set to commence next week.
Good news: For the past three years, HM's teachers have recommended her for the school district's gifted program. She just tested again (CogAT) last week and this time she qualified with a 95th percentile score in verbal reasoning (that's my girl!). She's been wanting to participate in this program – it's a full day, once per week – so she's pretty excited and proud of herself.
More good news: I think B's neurofeedback sessions are making a difference! Even her younger sisters have been observing positive behavior changes. She seems to have more energy, is more alert, more confident, more peaceful and calm. She doesn't mumble as much and she seems to hear/listen with less effort than before.
B commented the other day, when she was coming down with this cold, that even though she felt miserable that day, she felt like she could handle her schoolwork. Usually she struggles to cope with her schoolwork even when perfectly healthy. Then today I reminded her to take her medicine before school and she said, "I really don't think I need it today." Hmmm. I let her go without it – will be interesting to see how she felt today.
Of course, time will tell exactly how these changes impact her performance in math, but I'm optimistic. She has a lot of catching up to do, but she's always been bright, in spite of the ADHD fog, and she works hard.
My amazing husband: CupCate's wifey entry has inspired me to blog a little public husband appreciation. The last couple weeks, with so much work and so many late nights and schedule juggling to make the appointments work out – and all the stress that goes along with that – well, it's been as hard on my boy as it's been on me. But he's hugged me lots and lots when I was grumpy, had dinner all but ready several nights when we got home after 7 pm and has just generally been there for me in all kinds of ways big and small. He's always like that, but he did try extra hard, especially this past week.
And he never, ever treats me or talks about me like "the ball and chain" (even when I'm acting like it). He says I'm his wife like he's honored by the association.
Deciding to grow old with him is the best idea I ever had. (He'll point out it was his idea first and that's true, so technically I suppose I should say it's the best idea I ever consented to. 
My man is the best.
Neurofeedback for ADHD
Update January 12: B had her second session last night and she did beautifully. She was more relaxed because she knew what to expect. She performed better in all areas (i.e., for this workout, her brain was able to lift more weight). Afterwards, again, she was very energetic and just… positive. Her little sister, Mir, even commented, "Why are you so happy?" LOL
Tuesday, January 9: I took B in for her neurofeedback assessment/brain mapping. She was positive about it, but had a few concerns. Would it be boring? Would it be hard? Would it hurt? Would those electrodes be able to read her mind?!
The assessment itself was a little boring and tedious, but she did a wonderful job coping with it. It wasn't particularly hard (i.e., no tricky math questions), although sitting still with her eyes closed for one minute (6 separate times) and then partially closed for one minute (another 6 separate times) was NOT fun for her. Of course, it didn't hurt at all – and the tech did a good job explaining how the electrodes could read the electricity in her brain, but it wouldn't invade her privacy. B could ultimately see for herself on the computer monitor exactly what the machine read out of her mind.
Anyway, the results of her assessment certainly weren't surprising to me. When B is relaxing, her brain is most active (explains her insomnia). When she is supposed to be concentrating, the faster brainwaves that help us focus are LESS active for her. It's not *completely* backwards – I'm oversimplifying – but it's decidedly out of whack.
The psychologist who analyzed her brain map observed that generally her theta and alpha waves in her left temporal and left central nodes are way too high, and that this is something that has probably been going on for her since infancy or earlier.
After all these years? I have to admit it is cool to have, at last, an objective measure of her problem. She was diagnosed ADHD Inattentive Type (without hyperactivity) in second grade – and she so very clearly IS – but still that is a diagnosis achieved through a process of elimination.Getting some insight into how her brain is actually functioning – even just seeing that – is very interesting to me.
Her neurofeedback sessions will consist of protocols that exercise her brain and help her change these frequency patterns so that she can process incoming data with less energy and anxiety – and feel more relaxed and calmer overall.
Wednesday, January 10: So Tuesday evening was all the assessment stuff. But last night was the real test – her first session. And the verdict?
She liked it!
Again, I think, it wasn't completely interesting for her. But in spite of that, she seemed to LIKE how it made her feel. (A common reaction, I've heard adults describe feeling refreshed and sharper immediately after a neuro session.) Indeed afterwards she told me she felt great – "better, relaxed." Plus, she was very enthusiastic (maybe even surprisingly so!) about returning tomorrow for another session.
This was a huge weight off my mind, because if B decides something is boring or stupid, she can dig in her heels belligerently and be very uncooperative. In fact, she was very curious about everything from how the procedure works to how the cool reclining chair functions.
The technician (herself a mom of three) was extremely patient and thoroughly answered all B's questions.That definitely helps spin the whole experience very positively – I think B is enjoying the attention overall.
Even more reassuring for me was to observe the session and see with my own eyes that B's brainwaves are responding to the feedback appropriately (by achieving the desired pattern).
B has six protocols (each of them last between 4-12 minutes). All of them require her to listen to tones through earphones – this is the critical feedback that is programmed to influence her brainwave frequencies.
On several of the protocols she watches a video simultaneously. The video has no significance, it's just something to do. Most of the video footage is of the American's Funniest Home Videos variety – just something to keep her engaged.
As long as her brainwaves are responding appropriately to the audio feedback, the video keeps running. When her brainwaves veer from the the targeted pattern, the video stops. So watching video with B last night was kind of like watching YouTube on a slow connection. But overall, she really did a good job keeping the video running. It was somewhat stutter-y – not so bad as a dial-up connection – more like a sub par high speed connection.
We go back tonight, tomorrow night, Saturday morning – and then again most every evening next week. It's a challenge! It will all be worth it if this can really help her.
Orthodontia, brain training and baby, oh my!
What a busy (expensive!) month we have shaping up in January.
First, a new baby. A new baby 7 years after the last one, at that. I have NOTHING. Starting all over again. I think I’m relatively a minimalist when it comes to baby gear (will skip the whole nursery thing completely – baby will cosleep at least the first 9-12 months), but still, one needs maternity clothes, baby clothes, car seats and other essentials. Fortunately, we have months to save and plan for most of those needs. I’ll need maternity clothes soon, but I work from home – that helps!
Plus there’s the midwifery care. Insurance won’t cover. Long story. Prenatal care (and the monthly payments) with my midwife starts in mid-January.
Teeth. Then, two of my daughters (ages 6 and 9) require orthodontia. Crossbites, both of them, and my six year old has a scary open bite (it looks a lot like this). In January we will begin their treatment… both of them are signed up for palate expanders and an interesting device called a bluegrass appliance (that’s a picture of it on the right). The bluegrass is soldered onto the palate expander, so it will be like one, integrated, appliance. Fun!
The bluegrass serves a twofold purpose: In theory it will help prevent any further thumbsucking (of course any seriously motivated child would not be deterred) and it retrains the tongue to lie in the proper, healthy position. I guess thumbsucking trained their tongues to do all the wrong things, which is bad for upper jaw alignment. Insurance pays for half of this.
Brain training: Lastly, we’re beginning neurofeedback treatments for my 10 year old – also in… January! She was diagnosed with ADHD – Inattentive Type when she was seven. She has been on Adderall since (currently XR 15mg). Over the past several years, with lots of extra tutoring in math, she’s been able to hold her own. But it’s not enough – at the 5th grade level she’s having a really hard time keeping up. She seems to KNOW the material (i.e, she can manage her homework just fine, if very slowly), but falls apart under testing pressure.
Neurofeedback – when it works – effects a permanent retraining of the brain. In her case, it will help her train her brainwaves to accelerate when she needs to be focused (something the Adderall does for her now, but she probably needs her dosage increased and we’re trying to avoid that). Neurofeedback practitioners claim an 80-90% success rate with ADHD kids. And it’s supposed to work specifically in a way that helps kids succeed in math.
What are the risks? Well, there is no evidence that the treatment causes harm. From my research, it appears there is no risk that she will be hurt by trying this. So the primary risk is financial. Insurance doesn’t pay for it. What controlled studies there are showing efficacy are small. The larger studies are anecdotal. The risk is that it won’t work for our daughter and we’ll be throwing our money (significant dollars!) away. We’re operating on the theory that the potential benefit is so great that it’s worth taking the risk of losing money.
Ideally, the way this will go is that we’ll see some small improvements after just a few sessions, which will make it easy to commit more money to it. It all becomes more complicated if it takes lots more sessions to see any improvement. Wish her luck!!
Mom to 4 kids and 2 stepkids, I work at home in the heart of the chaos. Founder and executive editor of SheKnows.com and various other sites. Homeschooling. Knitter. Family chef. Gadget geek. Wordphreak. LAZY BLOGGER. 
