Finding an ADHD community for parents -- Trusera.com

Since beginning this journey, I have searched high and low for good blogs and fellow ADHD moms. It's been hard to find. While there is more information than you could want out on the Interwebs, I haven't found a lot of blogs like this (except for the two great ones I link to in my "ADHD Resources" links in the left column. There's nothing more valuable than finding real people on the same journey as you.

I am so excited to have found Trusera.com. There is a fantastic, active ADHD community there -- lots of blog posts, stories and community interaction. I encourage you to check it out. You can find me there as SeptemberMom.

Trusera is not just for ADHD. It's a community for health-related topics of all types. Check it out!

Trying a Disk-O-Sit

I'm looking for others who have tried a disk-o-sit for their children. Was it successful? Did you use it primarily to help the child stay seated during class or to help build trunk strength? Or both?

When Daughter was evaluated by the O.T. at school, this was one of the recommendations. At our IEP, the O.T. offered to provide one for Daughter to try, and surprisingly Daughter was willing to try it at school (Daughter has historically been unwilling to do anything at school that might mark her as noticeably different than other children; but I have noticed this year she seems to be growing out of that -- also evidenced by her willingness to go take tests at the back of the room or in the library. I thank God for her willingness to do these things. Last year she never would have.)

I can't find much online about the disk-o-sit. The product features seems to be these:
* Promoting proper posture and improved balance and core stability.
* Creating an unstable surface for balance and proprioceptive training.
* Providing an alternative to an exercise ball.

My understanding is that for children with ADHD, sitting on these disks allows them to move their bodies without creating a distraction for other children. ADHD children have this inherent need to move more often and thus think and perform better when they have the subtle movement that this disk provides. The secondary benefit for my daughter would be the improved trunk strength.

This is at least, my understanding. But as I said, I have limited information and can't find much online. I would LOVE to have some personal feedback from some people who have tried it. I will, of course, report our experience with it.

Concerta success

Five days now on the increased dose of Concerta (27 mg), and things are going exceedingly well. There's a marked improvement with Daughter's hyperactivity at home. Her attitude has shined. She did a great job with an extra sheet of homework ("mommy homework" not even school homework, just some math I wanted her to practice on) and some speech we did. She also did great at her Bible Quiz Tournament over the weekend. I truly am noticing a difference. YAY! It does my heart good to see my happy little girl.

Books we've found helpful

Here are some of the books we've found to be helpful road maps on this journey:



What are some of the best books you have found?

What a difference a day makes ...

In my last post, I was so concerned about Daughter's mental heath and felt like we were making no progress at all. And then Friday happened. On Friday, she seemed to turn the ship around. Several wonderful things happened on Friday. First of all, may I shout from the roof tops that Daughter got a C+ on her math test! We have been living in the land of "Fs" for a couple of months now, so this is nothing short of miraculous. There are a couple of factors that might have contributed: one, her teacher started allowing her to take math tests in the library. Daughter gets so frustrated by distractions in the room during tests, and this especially hurts her during math. She has literally cried about the "loud" sound of other children writing and erasing ... if that doesn't sound like ADHD, I don't know what does. Her teacher first let her try testing at a table at the back of the room and she liked that better. But when she allowed Daughter to test in the library, she really hit the jack pot. The library is Daughter's "happy place." Everything about the library suits her. So that was a great move.

Also, we had a really great homework session on Thursday evening. And her Friday morning tutoring also went well. Both of these I attribute to her attitude. I wish I knew what it was that turned her attitude around. But sadly, I do not. If I knew what button to push, trust me -- I would push it every time. BUT ... is it a coincidence that we started the new, increased dosage of Concerta on Thursday morning and had these improvements? It's a little too soon to know for sure, but I'm going with it for now.

Friday was also Daughter's 4th Grade Spelling Bee. Daughter is a fantastic speller and has qualified for the Spelling Bee every year since second grade. She finished 9th out of 18 kids, which was a disappointment to her (last year she was 3rd). But we were very proud of her. Also, she turned her disappointment around rather quickly and didn't dwell on it all day -- didn't let it derail her math test, for example, so I think that is a real victory.

Since my husband and I were at the school for the Spelling Bee, we scheduled her annual speech IEP for the same day. She does not qualify for an educational IEP, only speech, but this year the IEP meeting was really different because of the new ADHD diagnosis. I found it to be a really positive experience. The OT who recently evaluated her joined us, as well as the speech teacher, her regular classroom teacher, and the process coordinator for the school. There was a great deal of brainstorming among the group on things we could do to improve Daughter's functioning at school. I'll talk about some of these things in future posts.

More about Daughter's history

I had a very productive meeting with the counselor yesterday. The counselor, by the way, is s child psychologist who has known my daughter for about a year and a half. We began taking Daughter to see her at the end of second grade because Daughter had began having debilitating stress and anxiety symptoms toward the end of that school year -- headaches, tummy aches and insomnia. They were brought on mostly by a very difficult teacher and difficult school year. Even though Daughter had excelled academically that year, it seemed she could do nothing right behaviorally for that little twit of a teacher. In hind sight, I believe that was the year that the ADHD symptoms began surfacing ... but the teacher was too young and immature to recognize them and explain to us what the real problem was. So we simply never understood the problem for what it was. My daughter was treated like--and felt like--a pariah in that classroom. To top it off, her best friend moved away, which sent her into a depressive state. That was when we began seeing the counselor.

So we have had a history with counseling. The counselor and a wonderful third grade teacher got us through the next school year. But still, no one suspected ADHD. Her grades remained A's and the occasional B in math. She hated school, struggled socially with her best friend gone, and had a real chip on her shoulder. So we thought the anxiety she had with school was based on her recovery from the bad experience in second grade and adjusting to school life without her best friend. She was bright enough to compensate academically even though she was having her daydreaming/spacing out problems. But again, we really thought this was just because she was so unhappy to be at school.

By the end of the year she was doing well. She had really improved her outlook over the year. She began to get a lot of writing awards (she is a very gifted writer). She even won third place in the third grade spelling bee. She discovered a love for acting and landed a part in a community play. She really ended the year on a high note.

Fast forward to fourth grade. She has finally overcome that chip on her shoulder. She's a happy little girl again. She gets a wonderful teacher for fourth grade. And then of all things, her best friend moves back. We start the new school year under the best of circumstances.

And then all of a sudden her grades start tanking. We start hearing the reports from her teacher about all the daydreaming, lack of focus and wandering around the classroom. All the classic ADHD symptoms for girls are now very apparent. Still, I don't really suspect it until we go back to the counselor to talk about what's going on. And then it hits me like a ton of bricks ... the fact that I've lived with a little jumping bean her whole life ... a little Energizer Bunny ... and that this constant motion isn't normal ... it indicates a problem. And maybe it's not just an overactive imagination causing her to blank out during lessons. We accept the ADHD and begin treating it.

But in addition to the ADHD, she's started getting anxious and depressed again. That's what yesterday's post was all about. And that's what took me to the counselor yesterday.

There's something else I haven't written about here -- a factor that could play into all of this. My family went through another traumatic event last year. We lost our home in a flood. It was during the Spring, just when Daughter was doing really, really well. Right in the middle of her play. We lost our car, much furniture and all most all the kids' toys. We were forced out of the home and have been living in a rental duplex for 10 months, struggling financially on FEMA money waiting for a buyout deal on the property. So we have had a pretty difficult year.

But Daughter has been the one person in the family who seems to have handled it pretty well. She really seemed unaffected by all the stress. We expected her to be the one most traumatized. But she really took it all in stride. But for the last two months, we hear about the flood a lot. So we're wondering if perhaps the flood trauma has not caught up with her.

I told the counselor yesterday I think it's kind of odd that she would have handled it so well for so long and then start falling apart at the very time when things are starting to get better for the rest of the family. Things are finally looking up financially, there's less conflict between her parents now, we've almost reached closure on the house. So the rest of the family is LESS stressed and she is suddenly MORE stressed. What is that all about?

The counselor suggested it could be the same phenomenon that affects adults when they are under a lot of stress and have to work night and day and get very little rest but they get through it without getting sick -- but then when it's over and they can finally rest, that is when they get sick. In other words, when you are able to let your defenses down, that is when you finally get sick. It's just a theory, she doesn't know for sure. But she is going to begin therapy with Daughter on the flood to see if that could be causing the anxiety. Here are some of the other things we could be dealing with:

*Puberty? (long shot. her body doesn't seem to be showing signs)
*Just the stress of having ADHD
*The ADHD medication
*Something physical in her brain -- I could ask for a brain scan if therapy and ADHD med don't help

Anyway, that's more of our story. I'm just really trying to get to the bottom of what is hurting her and what's causing her behavior. She really is such a great kid with so much potential. I love her with every fiber of my being, and I just want her to be OK. To thrive.

Not Okay

My daughter is not OK. By the way, I'm scrapping the format of this blog. Daughter doesn't need to read this, and she won't be able to. I sign out at home, and she doesn't know the password. I'm not going to have her post anymore. Nothing about this blog is in her best interest--except for the benefit it provides me as we journey through this thing and try to find our way.

Daughter is full of anxiety. She is self-destructing at school. My typically A student has become a D and F student. She "forgets" to bring home text books constantly, "forgets" to do homework, or "forgets" to turn it in at school. She picks fights with her best friend and sister. She is touchy and emotional and frustrated with herself and others. She is not the little girl we are used to.

Best we can tell this downward spiral started around two months ago. The ADHD diagnoses was about five weeks ago. So I truly can't blame this behavior on the medication.

In about an hour I'm meeting with her counselor. We need more help.

Follow up with peciatrician today

ME: My husband and I took Daughter back to the pediatrician today. We covered quite a bit of ground. Let me just break down into the major categories:

Medication
First of all, her weight is holding steady. We haven't had any negative side effects with the Concerta, but we told the doctor we don't really feel like it's helping either. He said that is likely because he has her on such a low dose--in fact he said the 18 milligrams she has been on are really about half what he thinks she ultimately needs. But because she reacted so poorly to the Daytrana, he had wanted to start her out very low on Concerta. The bottom line is that we're upping the Concerta to 27 milligrams. We'll start that tomorrow. It does make me really nervous to change her medication on a week day when I can't be with her to see for myself how she's reacting. But I know that her teacher will watch her closely and let me know how it goes.

Anxiety
We discussed our concern for her anxiety level over the last couple of months. Even her teacher says it seems that anxiety is a bigger factor than the ADHD right now in her behavior. She gets very upset if everything isn't just so ... just how she expected it to be. He basically just wants us to keep pursuing that issue with her counseler and he wants feedback from the counselor on what's going on. He indicated that we could use some medication if we needed to. But he would rather -- and so would we -- try to deal with it in counseling. We still need to get to the bottom of what is causing the anxiety.

Occupational Therapy
I showed him the report from the O.T. at the school, and he really wasn't concerned. Given her history with O.T. and P.T., he said the results weren't different than what he would expect and they didn't raise any red flags for him. He offered to refer us to an O.T. if we wanted, but at this time we're not going to bother with that. She's already missing enough school for counseling appointments, and I just don't want to put anything else on her. I really just needed to know that the doctor wasn't concerned about the results.

I guess for now I don't know much more than I did before going in, other than having a new medication dose to try. As the doctor explained (and I know from the research I've been doing), ADHD treatment is not an exact science. We just need to keep working it until we find the best balance for her.

Discouraged

MOMMY: I feel like I am failing her in so many ways, and I'm not sure what to do. She needs me to show her the way, and I honestly don't know the way.

After receiving the report from the OT, clearly her fine motor and gross motor skills are still a problem, but the school won't be able provide intervention in that area. This is the report we received:

Occupational Therapy Screening
2-10-09

[Daughter] was seen for an Occupational Therapy screening on 2-10-09 by [school district's OT], MS, OT/L. In the area of self help skills, she was able to manage buttons and snaps, but had difficulty engaging a zipper and was unable to tie. [She] is able to manage bathroom and lunchroom needs independently. [She] demonstrated weak proximal muscle strength while attempting the prone extension (superman) position. She was only able to hold this position for 10 seconds after practice, where the norm is >30 seconds.

She was unable to balance in the Rhomberg position (one foot in front of the other) with her eyes closed. She was able to cross midline during Brain Gym activities and reports she has no tactile aversions.

In the area of fine/visual motor, [she] demonstrates a thumb wrap grasp using her right hand during writing tasks. She is able to copy from the board using adequate sizing and spacing. Finger individuation and serial opposition are within normal limits. She had difficulty visual tracking in diagonal planes.

Recommendations:
-Hand strengthening exercises with theraputty
-proximal strengthening using superman position to improve posture and
attention
-allow [her] to chew gum during class if needed to help with attention
-try a disc seat at desk to allow for movement without disruption
-balloon volleyball, or any other eye hand coordination exercises to
improve visual tracking

Meanwhile her grades are not getting any better, it doesn't seem like the medication is helping and she shows increased signs of anxiety at home and at school. We go back to her pediatrician this Wednesday, so we'll see what he has to say about all this and go from there I suppose.

Occupational therapy?

MOMMY: A note from the teacher today:

She did finish her morning work but I had to have her check over it. It seems that the mornings are still her most difficult time with focusing. That may be something to mention to her pediatrician. We do really well from about 10:00 to 1:00 and then you can tell her mind is starting to wander. She is doing so much better with staying in her seat though. I rarely have to redirect her anymore!!!! YEAH!! I am seeing positive progress though. I don't notice any signs of depression etc that sometimes goes along with it.

Daughter is being evaluated by an occupational therapist at school today. I asked the school if there was any way that an occupational therapist might be able to help teach her some skills for impulse control in the classroom, and we also wanted to have her fine-motor skills evaluated. Her writing is very sloppy and that really seems to be affecting her math accuracy (as she gets her numbers out of place when adding columns). I'm not sure what, if anything, the school can do to help. But we're checking into it. It's obvious just watching her that she holds the pencil all wrong -- in fact she had a real power struggle with her third-grade teacher over that issue and never has "gotten it" regarding how to hold that pencil.

Daughter received occupational and physical therapy when she was 5. Her gross-motor skills were about two years behind at that time, and we did the therapy through the hospital and the school until she caught up. She still has poor muscle tone and strength ... and the mommy-playing-doctor-therapist in me is wondering if this isn't all connected to the ADHD issue. At the time we went through that before, her fine-motor skills tested right on schedule. I just wonder if she hasn't been progressing as she should in that area.

Week in review

MOMMY: A big thank you to Suzymom for your encouragement to Daughter on her post. Your comment is similar to what I told Daughter when we discussed this. My gut feeling is that she is feeling some pressure to be different or feel different, and she is really confused about what she is supposed to be experiencing right now. The reports from her teacher indicate that she had a very successful week at school, particularly in the three areas we are trying to encourage her most (completing morning work, staying in her seat at the appropriate times, and concentrating her best during math).

Daughter told me she feels that she's doing better only because she is trying harder, and not because of the medication. She also feels very frustrated about her difficulty in concentrating, which she doesn't yet feel is getting easier. I think it's a combination of the two: her working so hard and the medication giving her a boost.

I told her that we'll talk to the doctor about it at our follow-up visit, and he may very well increase her dose now that she's tolerating the lowest dose so well. We'll just continue to see how this develops ...

The first full week of school with the pill

ME: I have had the first week of school with the pill and as far as swallowing it I'm on role. But well I'm just not sure if it is helping. And I'm not sure of what I am supposed to feel or how much it helps but... I feel it barely helps. It helps with my bible study easily but with school - not so much. I still can't concentrate well and I'm frustrated. I haven't told mommy or daddy, but mommy will find out soon enough. Sorry mommy. I'm just not sure if this is helping.

School report: Day Three or "Fourth grade math may be the death of this family"

MOMMY: Daughter reportedly had a good day at school. Both my "flies on the wall" had encouraging things to say about schoolwork and her eating. It just all went south after she got home. I'm telling you, this fourth grade math ...

Actually what happened was she completed her "morning work" assignment -- division problems during class. So that was a good thing. Unfortunately she did them all incorrectly. So she needed to rework them tonight. I think the real issue for us is just trying to explain to her where she went wrong. And then once she gets it, going through the steps. Again, I have found that if I leave her side during these assignments they don't get done correctly. I just need to be there keeping her on track. I would love it if we could get to the point where that wasn't necessary. Not because I don't want to sit with her, but because I know it can't be good for her confidence. Not to mention the fact that I can't be with her when she takes her tests.

There's another little issue we're having around here: anxiety, drama, fighting with her sister and her best friend. She has been very tightly wound for the last month or so. I really can't blame it all on the meds ... as it started before she began the medication. In general, she's more anxiety-prone than the average kid. But the drama seems to be increasing lately. I really want to get to the bottom of that issue with her.

School report: Day Two

Mommy: Today let me copy and paste an e-mail from the teacher:

"She had a much better day today. She was very positive during math.
She even said at one point, 'Wow this is easy once you learn it.' I think
we'll see lots of great changes in the future."

If you know Daughter's struggle with math and her attitude toward it ... well, this is huge. HUGE.

So, that is the good news. The bad news is she forgot to bring home her math homework. You win some; you lose some.

I am trying to figure out how to help her organize herself without actually doing it for her (ie, put the homework in the backpack myself). I made her a very simple end-of-the-day checklist for school, but she is not using it consistently. We even have a reward system right now, and part of her reward is based on using the checklist each day. We're not there yet, but I'm not ready to give up on it.

School report: Day One

MOMMY: No real changes reported by teacher yesterday, except that Daughter appeared "moody" and a bit difficult throughout the day. I believe this may have had more to do with being up too late at a Super Bowl party the night before than anything else. The pediatrician made a point of saying not to judge the impact of the medication on one day. We all have good days and bad. We're looking for trends over the next couple of weeks. That makes a lot of sense.

I will say that Daughter said she thought it was easier to concentrate on her classwork. And I noticed a marked difference in doing homework last night. She worked through the math problems with much less drama than before -- in fact, no drama. For whatever that is worth.

I just want to document this daily so that I can look back and see the trends.

First day at school on ADHD meds

MOMMY: Daughter is at school right now. Day three on Concerta. This is the big test. How will she do today? And will she have any anxiety because she thinks she should be doing better, but maybe she doesn't? Will she feel the anxiety that I feel? Why can't I be there with her? Oh, to be a fly on the wall in that classroom today. I am so very fortunate that she has a teacher who is so caring and concerned about her wellbeing and also great at communicating with me. She'll give me a good play-by-play of the day. It's only 9:42 a.m., and I've already gotten one e-mail. And as for my other worry--how she'll do at lunch--I have that covered as well. See, Daughter's best friend's mother is an aide at the school. She eats lunch with the kids every day. So she'll be watching and giving me a full report. So while *I* can't be a fly on the wall, I have two flies on the wall who will report back to me. Still ... this day is killing me. I don't like turning my child over to others when I feel like she needs me.

Concerta vs. Daytrana: Mommy's perspective

MOMMY: If you read Daughter's post last night, you know we had a considerably better first day on Concerta. Whew ... what a relief to both of us. What a curiosity as well. Why would two drugs based on the exact same ingredient (methylphenidate) have such vastly different effects on her?

The only thing I can figure is that the Daytrana Patch is not metabolized through the stomach and is absorbed straight into the system, thus giving her a stronger bolt of the drug. The Concerta though, which is an extended-release pill, is designed to be released slowly from the stomach. I'd think the patch would release slowly as well. But there must be something about the metabilization through the stomach that changed the way it is absorbed into her system. That's just doctor/scientist mommy talking. (And by the way, she's actually taking a few more milligrams of the Concerta than the Daytrana, so it can't be that she was getting more of the methylphenidate through Daytrana...)

Anyway, all I can say is that the two drugs had the complete opposite effect on her. The Daytrana Patch zinged her up like she was literally on speed, and that rapid heart beat and breathing scared us to death. Plus she was so wired she didn't sleep all night. But with the Concerta, she was really rather subdued all day (the desired effect). And she fell asleep easily. Good. Good, but weird.

We still dealt with her tummy hurting and difficulty eating, but she did eat more yesterday than she did last Saturday. I even took her out for ice cream, and she ate the whole sundae and said it really tasted wonderful - even though she had been afraid it would be difficult to eat (she hadn't been able to get down more than two bites of ice cream the week before). The appetite-suppressant issue is going to be a big one for us. Her doctor will take her off of the drug if she loses weight for more than two months because of her current size, so I am actively working on this issue. Here is what I'm working on:

1) I have to see that this helps her and that the good outweighs the bad or I'll take it off her it myself, but anyway ...
2) We're eating a very hearty, nutritious breakfast before taking the pill so that at least breakfast is not affected by the drug.
3) I'm trying to get in really nutritious snacks -- yesterday she did a great job snacking on raw veggies and ranch throughout the day, even though she did a rather poor job with lunch and dinner. I'm even going to send some snacks to school, and I think the teacher will be cooperative about letting her have these at recess. She loves cashews, so I think they should make an easy and nutritious, calorie-dense snack for school.
4) We're having Ensure shakes before bed at night. She really enjoyed one last night. So that worked pretty well.

We'll just figure this out as we go! But I sure do feel more hopeful today

And to answer your question yesterday, Good Fountain, yes, it's one pill a day. Thank you so much for reading and caring.