Wednesday, January 19, 2011

Our ADHD Story... Moms Can You Help Me With Yours? ^^

My amazingly wonderful gorgeous hilarious sweet as pie oldest daughter Olivia has ADHD.  Pretty severely, I would say.  I think I could have told you by the time Olivia was one year old that she had this, but she's only actually been diagnosed for about 4 or 5 months now.  And it's been quite a road to that diagnosis and quite a road to a solution. 

While the ADHD has always caused me problems with Liv at home, it wasn't until she started kindergarten that it really began to pose a more severe problem for us.  She's always been a smart girl, in my opinion.  She learned to count and group things very early on and started learning letters and sounds and how to write letters also very early.

But when she was around 4 I could tell that she was starting to have problems.  Suddenly she didn't know the letters as well as she used to.  I started noticing that she was forgetting a lot of things that I felt she had already learned and she seemed to have a complete mental block when it came to anything having to do with numbers, even something as simple as identifying one digit numbers. 

I could tell she wasn't learning the things in her 4 year old preschool class at the same rate the other kids were, and she started to become less interested in working with me at home writing the names of everyone in the family (something that was once a favorite activity of hers) and trying to work with letters and numbers.  At her preschool graduation, the kids showed all that they'd learned over the year.  They all recited rhymes and chants and counted to 10 in 5 different languages and sang several songs with motions.  For most of that, Olivia just stood there.

This wasn't too surprising; she'd always seemed to retreat to her own little world in front of people, but it was frustrating nonetheless.  That summer after preschool graduation I really started to kind of go gangbusters to prepare her for starting kindergarten.  Because our local kindergarten was still doing every other day, and because she was going to be in a class of 22, I decided to keep her enrolled at the private kindergarten at her preschool.  This would allow her to go every day, and the class size would only be around 14 kids.  I really believed that both of these things would provide a better learning environment for Liv.

The kindergarten teacher was replaced at the school after we had made our decision.  She was someone who had taught in Catholic schools for 20 years and for some reason was starting over at our school.  She was very nice, but it was clear that she was easily stressed by things like... kids talking, noise, chaos... all sorts of things you'd find in a kindergarten room.  While she always commented about how much she enjoyed having Olivia in class, it was pretty evident that she didn't have much patience for her, and I didn't find her very warm-- something Liv really craved in adults.

I was very soon getting reports from the teacher about the problems Liv was having with learning.  She was falling behind and fast.  I tried working with her at home on reading and math and literally could get nowhere.  I made sight word flashcards and it was a good night if we could get through 5 flashcards.  I literally would have to redirect her back to the flashcard after every single letter sound of a word.  5 flashcards would take 20 minutes.  And she would cry and cry and beg that we could stop.  I would give in.

She continued to fall behind and the kindergarten teacher suggested midway through the year that we'd have to seriously consider if she would be ready to move on to 1st grade.  I scoffed at this; how could she even think about this so soon in the year, she still had a half a year to work with her and prepare her!  But as the year end closed in it became obvious that this was something we'd be having to face a decision over. 

Close to the end of the year I logged on to our Children's Hospital website and filled out some forms to start the evaluation process for ADHD.  My mom was immediately incensed with me.  She is very anti-medication for kids and had made that very clear to me every time we would even talk about it.  Her face would clench and she would either not speak to me or start yelling and/or crying about how I couldn't do this to Liv.  I felt like I was in such a tug of war... I didn't want to medicate my baby either, but the more research I did the more I found that medication was so far the best known remedy for the problem.

My mom is a believer, user, and salesperson for a nutritional product called Reliv.  It saved her from a life of pain from fibromyalgia, and she has met and seen hundreds of others who it has saved as well from myriad diseases and afflictions.  She gave me story upon story about how it worked for kids with ADHD and I agreed to put Olivia on whatever regimen she decided.  It's a natural nutritional product, and I was willing to try anything that would work for us.

We started seeing a behavioral therapist as the first step in the process Children's set up for diagnosis and assessment of ADHD.  She gave us a lot of suggestions that I tried to implement at home.  Many of the suggestions were well-received by our daily routine, others didn't seem to fit into our lives very well.  In truth, I didn't really feel like these sessions were making much of a difference for us.  I really really wanted them to, because I was hoping that the behavioral therapy would be the magic solution that would allow us to avoid medication.  I was soon realizing this was not going to work the way I had hoped. 

Soon at Children's they started the actual testing and not long after we had the diagnosis I knew was already there.  Liv has ADHD.  No kidding.  We were referred to our regular pediatrician to discuss options.  Again, my mom would cry and fight me on this tooth and nail, she basically said, there are no options related to medication.  I listened to her arguments and really agreed with most of them but I vowed to keep an open mind about what to do about this.

Our pediatrician had a very long talk with us.  I had decided not to tell Liv that she had ADHD.  She is already so timid and worried about people not liking her and worrying about being different in any way, I decided I didn't want to put on her little shoulders the thought that there was something wrong with her.  The ped talked quite a bit about what we were dealing with.  It was a very emotional and educational meeting.  Olivia was bouncing off the walls during the visit. 

Something that kind of stopped my breath was when the doctor said that the lack of impulse control was something that contributed to the way Liv was acting in the office.  She asked how she was when we were out in public.  I realized that I almost always avoided taking her into public unless I had a ton of help.  I didn't take her to the grocery store unless I could put her into the grocery babysitting area.  I didn't take her to restaurants unless I had at least 1 preferably 2 other adults with me.  The list went on.  I thought to myself, all this time I was only thinking about how I can help Olivia succeed in her education and social life, that's all that I want out of any of this.  But was it possible that I wasn't realizing how much this was affecting my own life and maybe we could have a more normal life?  It wasn't what I set out to accomplish, and honestly, if we could find the right combination to help Liv succeed but I didn't get that result, I'd be totally fine with it.  But the thought of it sure sounded nice. 

Plus she asked me how Liv was around the (then 10 month old) baby.  I said, she attacks him, all day long.  I am continually saying, be gentle, don't crowd him, leave him alone, he doesn't want you to do that, etc.  She asked if I had to tell Ava the same things.  I admitted that I didn't.  She said that's because Olivia has no control of these impulses and space issues.  It's not normal to have to remind a 6 year old 20 times a day to be gentle with a baby, they should know this by then.  I was sufficiently crying by this point.

She did recommend medication and explained to me in detail why she thought it was necessary and how closely we would monitor it.  She mentioned that if often took several tries to find the right fit that worked for each kid and we needed to work with her teachers to see if there were any improvements or not in school and also to see if there were any side effects such as loss of appetite and trouble sleeping getting to her.

We first tried focalin.  By day 2 of trying this medication I was sobbing.  I realized that I had done my daughter a huge disservice by not pursuing this further.  I saw her entire demeanor change.  She would suddenly sit and play with legos for hours on end and was so much better with her brother.  And when we did sight word flashcards that first day?  She read 30 of them.  And she actually read them.  It was amazing.

Her teachers, however, weren't really seeing any improvements at school.  I was also noticing that on days that she had after school activities she was totally out of it or not paying attention or acting really silly during them.  The doctor suggested we up the dosage amount of the focalin.  It was too much.  Liv seemed "high."  Her teachers noticed her acting like she was in a total daze, and they still didn't see any improvements with her attention span.

Next we tried the original focalin dose, but added a half a dose of short acting focalin for her to use to get through the after school hours for homework and activities.  The only result we saw here was the addition of more anxiety-like symptoms, such as picking her fingers and worrying about things even more.  I tried it for a couple of weeks but soon nixed the afternoon dose.  She stopped the finger picking but we were still back to the drawing board, according to the teachers. 

Honestly, in my eyes, Olivia had improved by leaps and bounds and I never dreamed I would see that much change in her so quickly and I was happy with what I was seeing and happy to acknowledge that as the miracle it was to me.  Her teachers still disagreed, though.  They were still having problems keeping her on task and again, she was starting to fall behind in school. 

I explained these concerns to the pediatrician.  She assured me that once we found the right dosage for Olivia that I would hear different things from her teachers.  She would never be perfect as no child can be, but she will learn to control impulses and pay attention to the point that her teachers won't feel the need to contact me about these issues any more.  The doctor then prescribed vivance.  Sadly, we still weren't seeing any improvements but suddenly the finger picking was back.

I am just so upset about all of this.  Why weren't we finding the answer?  Why were we still treating Liv like a science experiment?  There had to be a better solution.

Just before Christmas break the doctor changed her medication again to something called Intuniv.  I saw horrible results from this medication.  I was told she might be a little more sleepy than normal but I had no idea what to expect.  She literally slept almost an entire weekend.  The girl who hasn't taken a nap since she was 2 and can stay up as late as you'd let her but still be up by 8 each morning could hardly be woken.  I carried her from car to couch back to car to places we were going back to car to couch for 3 days.  It was awful.  I called the doctor's office Monday morning and said, no way we need to get off this med immediately.  She urged me to give it a couple more days. 

I was pretty against the idea, but I agreed to 2 more days.  She thought Liv's body would adjust and she wanted to hear what her teachers had to say.  So I agreed.  And lo and behold, the next day, both of her teachers emailed with the most amazing, glowing reviews of Liv's focus and attention span and ability to stay on task since the start of the year.  Had we found the magic solution??  I was cautiously optimistic.  The doctor was like, "see, I told you so."  LOL. 

But suddenly at home she was much more hyper in the evenings than she ever had been.  Of course she had some hyper tendencies, but her problems were mostly resulting from the inattentive side of ADHD.  The doctor suggested I give her a small dose of Adderall in the afternoons.  I tried this, and we were back to Olivia sleeping for hours on end.  It was too much.  I never gave her that dose again.  More importantly, though, we were on Christmas break.  She was only in school for 2 days on the start of this new medication, and I worried that when she returned to school things would be back to square one again.

On top of that Liv's insurance wasn't agreeing to pay for this medication.  They said it was too expensive and needed more information as to why a cheaper medication wasn't prescribed.  Hours on the phone with everyone from the doctor's office to the pharmacy to the insurance company to the pharmacy board itself proved futile.  Still no coverage.

School started up again and her teachers said at the end of the first week that they were still seeing a lot of the same, longer attention spans, staying on task better, less redirection needed.  I still was having problems with her at home at night and the ped suggested I try the small Adderall dose again but I've been reluctant to do that.  She was so happy to get the notes from the teachers again and I guess had pretty much decided we had found the miracle we were looking for and so we were done with it.  But... still no movement on how to get it covered.  I can't pay even close to what it would cost so that's just one of the roadblocks to this medication.

The next roadblock is something else I'm discovering.  The teachers are seeing more focus, but are they seeing more results academically?  Olivia seems to be very much at a standstill with her improvements in reading and math and I don't know how else to help her.  I'm starting to wonder if there's a learning or processing problem on top of the ADHD.  It's a bitter pill to swallow, and I'm hoping it's not the case. 

I'm a licensed, although not practicing teacher myself and I know what labels can do to a child, and I don't want that for my baby if it can be helped.  I recognize that I may not be able to avoid an IEP for her in the future, but I'm hoping to put it off until we do find the magic solution and therefore no longer need it.  I do not want her labeled to have a learning disability because the poor girl already has so much working against her socially I'm afraid how much more harm this will do to her. 

I don't even know how to approach this next obstacle.  Some people say, oh, she's just in first grade, she'll be fine, blah blah blah.  But there is no question that she is already falling behind and it's going to be a huge uphill battle for her.  I am actively researching more solutions, from different medication options, to tutoring options, and even as far as homeschooling or private schooling options that are better equipped to work with someone with problems like this.

That's our story.  So far.  That pretty much brings us up to date (aside from her teacher saying yesterday they want to have Liv evaluated for gross motor skill deficiencies, which may or may not be related to her ADHD... but I'll talk more about that in another post). 

I hope you stayed with me; I know it was a lengthy post.  But I'm hoping if you're a mom also dealing with ADHD you'll be curious in our journey as you have already been on or may be in the middle of or just embarking on your journey to figuring out your magic solution. 

I would LOVE any suggestions you would like to give!  Anything that worked or didn't work for you or your kids.  I need to find something that really works for my girl and I will try anything!  I hope to find something soon and figure out how to best help my sweet girl so I'm completely open to anything you have to add or offer! 

Thanks so much readers, I will let you know how things progress.


  1. Your daughter is unique and if she may not perform like the other kids at her age, she is fine as long as she is healthy. Her behavior may be different but she is still growing and learning everyday. Hope things will work out for you. Have a nice day!

  2. Let me think on this for a while. I am a retired teacher of LD and BD students. I have worked with hundreds of children and adolescents with a variety of educational problems resulting from various problems. I myself have lived with ADHD all my life (although it wasn't diagnosed until I was around 40).

    I understand your mother's point of view. Some of these medications are
    scary. Monitor her closely (and it sounds like you are).

    The sad thing is you may never get the medication right. Your daughter has some kind of chemical imbalance. First of all NO ONE really knows what's going on to cause all of this. They only have educated guesses. It is a trial and error type of treatment. And if they do manage to stumble upon a chemical solution that works then when your daughter starts growing and changing physically the medication can be rendered ineffective.

    The only hope I can offer you right now is that a majority of individuals who suffer from ADHD grow out of it by adolescence (or at least it lessens). Also, there are a number of medications that do seem to work miracles. Also, have you contacted the companies that make the meds she is on? Some of them have programs that offer reduced even free meds. Also, if you can get her on a study with someone researching this problem, the meds are usually free.

    Eventually, it may become necessary to have and IEP if only to keep the teachers who work with your daughter from (I am having a problem coming up with the next may sound too harsh, but here goes) abusing her. Teachers are just like every one else. There are excellent ones, good ones, bad ones and REALLY BAD ones. The last two can do more emotional harm to your daughter than the ADHD. Believe it or not, some educators think that this is all a bunch of hog-wash!

    I have been retired for 5 years and am kind of out of the loop. But, if you need to kt