Final Follow-Up results

I will start off with a baffling statistic that my doctor told me about yesterday.  

The Mayo clinic has done research on children that were treated successfully with ADHD stimulants.  Out of the study, 25% of those kids actually had a sleep disorder instead of ADHD.   

Does that surprise you?  It surprised me.  If they were treated successfully with stimulants, then don’t they have ADHD?  Well, the stimulants helped them during the day to stay alert and more focused because they weren’t getting the deep sleep or regular sleep cycles they needed at night.  These kids were damn tired.  My doctor said these same kids will be 5x’s more likely to have a chemical addiction sometime in their life because they were treated with possibly addicting stimulants when in actuality - they had a sleep disorder instead.  If I were a parent of a kid being treated for ADHD - I would get my kid in quickly for a sleep study.  What have you got to lose?  

Can you see where i’m headed here with my own ADD issues?  Yep, that’s right.  After all this testing the doctor determined quite a few findings and because of a few discrepancies - they don’t add up to ADD.

Here is what he found:

1. My brain wave scan showed that the back of my brain showed Delta (or sleep waves) and that I was either highly doped up on drugs/alcohol OR that I may have a sleep disorder.  (well, having kids will do that to you.)  I rarely use alcohol and never use drugs, so the latter is probably true.

2. The center of my brain showed major Beta (or anxiety/concentration) waves, but he said my ratio of Beta 1 to Beta 3 was WAY off - so I have a very, very overactive brain!  Therefore stimulants are not for me.  The neurologist reported that it showed anxiety, excessive worry, rumination and vigilance.  

3. My body is taking a big hit physically from all the Beta activity because it can mean high anxiety, fight-flight-freeze, and major levels of cortisol, hormones, and adrenaline are being released too easily because of how I am wired.  All of this is affecting my major strengths - Visual memory and attention.  Not good.  I can’t even draw enough from my strengths because of all this Beta activity buzzing.

4. I tested very high on the depression/anxiety scales - he was very concerned about that and wants me to seriously consider going back on an SSRI.  I’m not so fond of that idea, but i’m going to really think about it.  He says that I don’t have enough feedback from other adults - I don’t have a feedback loop and that my world is getting smaller and smaller.  It’s a social anxiety thing and I know it.  

5. My IQ showed that I am highly intelligent (thankfully) and that I have “learned well” - up to my IQ’s potential.  He said that if it was ADD - that there would be a difference between my IQ and how well I learn new things.  My biggest strength was in the visual memory category.  Weaknesses were Auditory processing and a possible math learning disability.

 

Some of his recommendations (and I will be getting a 15-20 page written report with all of this info) is:

1. starting a regimen of high quality Omega 3’s - he suggested the brand Omega Brite, as it is manufactured in a facility using nitrogen and each capsule is individually sealed for optimum quality.

2. Purchasing a little biofeedback machine from a company called Heart Math.  It’s a little portable machine that I can use when I am stressed or anxious that will give me feedback and retrain my brain to not release the fight/flight/freeze response so easily.  The model of the machine is called “EM Wave”.   Go to www.heartmath.com

3. Daily excersize to even out my anxiety and moods.  He said that there’s a great book out by John Ratey called “SPARK”.  It talks all about excersize and how it does what NO drug can do.  For people that do have ADD - it helps you wake up your brain and focus and for those of us with Depression/Anxiety - it calms us down to help us focus.

4. I need to make an appointment to have a Sleep Study done to see if there is anything else going on with my sleep patterns/cycles that have nothing to do with being up with children at night.

5. He recommended that my husband and I both read another book called “Brain Lock“.  It explains how people with the Singulet issues in the brain (where you have a hard time switching gears and moving from one activity to another) can overcome and learn how to unlock those gears.  There is a process in the book, step by step on how to do it and my husband needs to read it too - so he can try it with me.

6. He wants me to get some Cognitive Behavioral Therapy - learning how to retrain my brain to not crave negative thoughts for stimulation.  Supposedly some brains that are sleepy look for stimulation.  Unfortunately positive thoughts are not stimulating enough, but negative thoughts are - so my brain has been on a beating frenzy for years telling myself that I’m stupid, a fuck-up, etc… nice, huh?  He said he was reviewing and going over and over my forms, records, etc and he said that he just couldn’t understand why I was so damn hard on myself, that I couldn’t accept that my brain was wired a little differently and that I just needed to accept a little help.

7.  He recommended that I look for a volunteer position where I feel confident and could do something that I really enjoy.  I said ART would be great - so I am going to look for a volunteer position where I can maybe help out kids with disabilities with art.  He wants me to do this about 3 hours/week.   I need to expand my “feedback loop”  so my social anxiety doesn’t get worse.  I fear that one day  - I may not ever want to leave the house - thankfully I’m not there yet, but I could see how that might happen.

 

I’m sorry if I’ve disapointed those of you that may have been following my blog, but hopefully you can gain some insight from it.  You may have ADD, or you may not.  Seriously consider a sleep study before going on any meds.  

My doctor never mentioned ADD during the whole appointment, so at the end I finally asked “So, does all of this add up to ADD??”  - and he said no and explained all the reasons why.  He felt I wasn’t lacking in dopamine in my brain’s frontal cortex and also because of my IQ vs. how well I learn  - there wasn’t enough discrepancy.  Also, the neurologist has a ‘marker’ for ADD and I didn’t fall in that category afer she reviewed my brain wave scan.

But he said a lot of my symptoms/behaviors ARE consistent with an attentional disorder.

I have a lot of work to do … and it’s overwhelming, but I am satisfied with the final outcome and I hope that I can implement these changes and that I will be able to see a difference in my life.

I’m supposed to go back to the clinic in 6 months and they will test me again on attention to see where I’m at.

If you are interested in learning more about the clinic I went to - shoot me a comment and I will forward the information off in an email.  

tomorrow is the big day…

tomorrow, Thursday August 14th, I finally have my follow-up for my full Adult ADD assessment.  I am a little nervous and a little bit excited.  I think my fear is that maybe they will say after about 12 hours of testing on memory, achievement & IQ, learning disabilities and other qualities that are often found along with ADD - that they didn’t find anything.  In that case, it will solidify all the mental beatings I’ve been giving myself all these years and telling myself that i’m stupid, a mess-up, etc… 

but i don’t think that will be the case.

I have a feeling they will tell me this:  (I’m writing this because I want to compare what I think - to what they are going to tell me in my appointment tomorrow)

That i have Innatentive type ADD (as most girls/women with ADD)

That I have a math learning disability.

That I have problems with short-term memory.

That I have an auditory processing disability.

That I have low-grade depression or disthymia (sp?)

That I may want to consider medication for social anxiety.

 

That’s it.   THAT’S IT???!!!???   I know, crazy as it sounds… I think I function exceptionally well in today’s society if all of those things are an issue.  I was able to complete college in a hands-on, creative degree program (because i’m a visual learner) and have held down a few professional jobs for quite a few years before quitting to stay home with my kids.

My husband will be coming with as an extra set of ears because it doesn’t take much “talking” to overwhelm me and then my brain shuts down.  I am also scouring the internet tonight looking for a good digital voice recorder that I can bring to record the whole 90 minute appointment.

I will report back either tomorrow, or the next day.  :)

explosive/inflexible children - part 2

I’ve been meaning to recap our events after our visit to the psychologist with our daughter.  Things went very well.  Great therapist, great with kids - she even has 4 young adult children of her own.  Our daughter really warmed up to her, which we were worried about.  We need to make a few more appointments with her, but she suggested a few things that we are now honing in on.  One thing she said was: 

 Children do well if they can -  meaning that some skills may not yet be developed in order for certain children to fall in line with society’s idea of good behavior.  Skills such as cognitive and emotional developmental skills.

Also, she suggested a book call Parenting with Love & Logic.  We purchased it and are now listening to it on CD.  It gives a lot of great parenting tips.  But, we are also doing a little reading on our own from a book called The Explosive Child by Ross W. Greene.  This book is more in line as to what we need to be reading right now, to understand what point our little girl is at in her development.  Basically, we’re learning that some kids are delayed developmentally in certain areas and some of those missing developmental skills can be frustration tolerance and coginitive flexibility skills.  These are not things that can be taught by sticker charts or any kind of extrinsic rewards systems or even time-outs.  This books suggests explosive/inflexible children know they are not supposed to scream, rant and say horrible things or hit their siblings, but often times when they are exploding - they can’t control it.  Often times our daughter will come down from a meltdown and not even realize what she was so angry about.  This is typical of children with this type of developmental delay.

We are learning.  But how do you explain to someone, like a soccer coach or a Sunday school teacher that may be in the room when your 6.5 year old is having a meltdown and they look at you as though they are thinking “wow, what a spoiled rotten child”.  How do you explain that you are doing the absolute best as a parent and your other child falls more in line with society’s expectations of children’s emotions at certain stages of their life?  How does that explain the emotional immaturity of your 6.5 year olds skills?  I haven’t met another child like my daughter even though I know they are out there.  I even discovered that there’s a support group not far from where we live for parents of explosive/inflexible kids.  I guess I need to try and have thicker skin and not worry about other parents and what they may be thinking.

My main worry is that eventually if we can’t get this under control that she may have a really hard time keeping friends in the future.  She is very social and makes friends easily now, but she is still young.  I have hope that things will get better.  I need to have hope, otherwise what else is there?

She had a much better week last week.  We were able to keep a really good bedtime schedule for the kids and it’s amazing how much that can help/hinder the meltdowns.

Also, we’ve learned from the Love and Logic books not to “hover” so much and let the kids work out their own little sibling battles.  We do keep an eye open in case things escalate too much, but my little guy has been better about sticking up for himself.  The last few days that we have backed off, both my husband and I were more calm and the kids seemed to be more calm too.  weird.

ADD Assessment - part 3

Well, today was finally my last day of testing for Adult ADD.  I still have one more appointment in about a month for a follow-up where they will fill me in on their final conclusions from all the findings of all my testing and my QEEG brain wave scan.

Today started out pretty easy with a few tests using a computer.  The first test consisted of watching and listening for the computer to say “one” or to watch the number “1″ flash onto the screen.  Seems pretty easy, right.  The final part of that test involved a “2″ that flashed or a voice that said “two” in-between the “ones” and “1″.  I thought I did okay, but after talking with the administers of the test it was nicht gut - (”not good” in German).  There was a space at the end of the test that asked me to type a comment about the test and I wrote “I’m sleepy”.  I seriously got so bored with that test that I just wanted to put my head down on the desk and take a snooze.  Granted, this was the day that I was to come to the appointment with no sugar or caffeine in my system for the past 12 or so hours.  One of the administers said that she’d love to see how I would do on this particular test after I’ve had my morning coffee.  Yep, it definitely helps me get through the morning, and day, and even sometimes the evenings.  By this point my caffeine headache was going pretty strong, but it was bearable.

Next, it was onto a different testing room where I did multiple tests on memory.  There were auditory tests for memory where the administer would read aloud two words that were unrelated (such as: truck and arrow).  About 6 or 7 pairs of these words were read and I was supposed to remember.  I laughed a bit after hearing these directions because I know myself well.  Then the administer read back one of the words and I was supposed to say what the pair to that word was.  Ugh… I think after about the 3rd word that I had missed, I started to cry.  This was a really hard thing for me - the whole memory thing.  The whole auditory direction and trying to remember for me has always been really tough.  It was definitely a defining moment in me learning more about myself and confirmed a weakness for me that I’ve suspected all along.  The administer was very nice and let me take my time to continue on.  They were very encouraging and understanding.  

Thankfully the rest of the memory testing was visual.  Well, I kicked ass on those.  I was shown a picture of a family - Grandpa, Grandma, Mom, Dad, Son, Daughter and a dog.  There were 4 different scenes involving some or all of these characters that I was to look at and then try to remember later.  Wow, what a difference for me to have a visual instead of the auditory.  I aced it and the administer said he had never had someone do so well on that particular test.  I don’t think he was just trying to make me feel better either - I did feel confident with all of my answers.  This test confirmed a strength for me, thankfully.  I really needed that after the previous one.

Finally, we needed to prep for the QEEG brain wave scan.  So we went into the “Q” room, as it’s named at the clinic.  First I was asked a number of questions about family health history (again).  Things came up about depression and anxiety in my family and extended family, a Great Grandmother that had committed suicide, an uncle with Dyslexia, an Aunt that was diagnosed with Dementia before her 60th birthday.  I forgot to mention about my Grandfather that had died of ALS  - Lou Gehrig’s Disease, but I remember putting that on a written health history form.  Then on to the prep…

In the “Q” room my head was measured and marked for the correct placement of the cap that contained about 23 electrodes (don’t worry people, nothing to shock me!).  The administer put some goopy gel on my forehead (almost like when you go for an ultrasound when you’re pregnant) and through parts on my scalp to help the electrodes get a good read on my brain waves.  Well, we weren’t getting a good read in the beginning and the administer had to apply more gel and then poke through each electrode to my scalp to get the gel further in for a better read.  Guess what they used to poke the gel through with?  The cut end of a plastic Q-tip stick.  Yes… it was quite uncomfortable especially since I had to go through this process twice because the first cap was too big and we just couldn’t get a good read.  My caffeine headache was already in FULL SWING so at one point I almost felt nauseous.  The rest of the test was a breeze.  I had to sit still for 10 minutes focusing on a picture at the wall in front of me and 10 more minutes sitting still with my eyes closed.  I remember my head bobbing once because I was getting very sleepy.

Finally the tests were finished and I was free to go.  They offered me some shampoo and a towel if I wanted to go wash my hair in the restroom, but I had planned ahead (not like me) and brought a baseball cap to wear home. 

By this time I was feeling a migraine.  It was bad.  I didn’t even know if I was going to be able to drive home, but thankfully I live about 7 miles from the clinic and traffic wasn’t bad at that time of day.  I made it home and had to go lie down immediately because I thought I was going to vomit.  That’s how bad my head was pounding at this point.  I was able to get up to take some ibuprofen, but coffee was not sounding good because my stomach was not feeling well.  Thankfully I was able to fall asleep and nap for about 90 minutes.  When I woke up I felt much, much better.  I had some lunch and then made some coffee to subdue the rest of my headache.  

It’s now about 12 hours since the start of my appointment this morning and I almost feel 100% myself again.

Next up is my verbal follow-up with the psychologist and then after that I will also receive a 15-20 page report on all of the final conclusions to my testing and assessments in the mail.

I am glad that the worst is over and I am glad that I am doing this.  I am also glad that my insurance is paying for most of it.  ;)

Ooops….

So, I’m supposed to go into the clinic for my last of my assessment/testing appointments on Tuesday.  Well, it’s an appointment where they are going to do a QEEG.  The QEEG is a brain-wave scan.  It is sent to a neurologist to be thoroughly analyzed.  Somehow, people with ADD/ADHD show different brainwave patterns than non-ADDer’s.  I was reading about it a bit today how when non-ADDer’s are given a task that requires a great deal of focus - they show activity with BETA brain waves (the fastest of the five types of brain waves), but when ADDer’s are given the same task, they use THETA waves instead (the daydreaming brain waves).  No wonder ADDer’s can’t focus.

Anyway, I have a few restrictions before I have the QEEG done and one of them is No Alcohol for 72 hours before the test.  My husband and I finally got a babysitter last night, went out for sushi and I had two beers - OOOPS!  I completely forgot that I wasn’t supposed to drink.  It is a rarity when I do have alcohol, but this is just a prime example of my brain and my poor ability to plan ahead.  I “should have” written it on the calendar the days I was supposed to abstain… ugh.. i have a really hard time thinking ahead most days.  I guess it didn’t occur to me because, like I said, I rarely drink alcohol.

So, I need to call the clinic and see if 60 hours “alcohol-free” will be okay, probably not.  In that case, I’ll have to reschedule.  I can’t believe I did that.  Just another thing to beat myself up about … stupid, stupid, stupid!

Oh well.  Que-sera!  

Other than that, it was a good day for me today.  My moods have been better the past few days and I was able to excersize this morning, which helps immensely.  :)

ADD Assessment - part two

So - the other day I went for my second of 4 appointments for my Adult ADD Assessment.  It was very interesting to say the least.  They had me doing numerous neuropsych screens to determine if at some time in my life there were any neurological problems … i.e. mini strokes, etc.  I’ve never had any concern that this was the issue, but it was part of the whole assessment and I guess it’s good to have it ruled out.

During the neuropsych screen I had to do things like repeat back a tapping rhythm and sticking out my tongue in three different positions as quickly as possible for 10 seconds - yeah, that was strange and the test administer prefaced it as “this is going to seem strange, but bear with me”… but I think I passed that part with flying colors.

After the neuropsych screen, I then moved on to memory testing - having to remember a drawing and re-drawing what I remembered at 3 different points during the appointment.  I don’t even remember half of what I had to do that day - how ironic, huh?  The last few years I have noticed a big decrease in my memory.  It really scares me a bit.  I can ask my husband or kids a question and then two minutes later I ask the same question again.  I think the problem lies within my short term memory.

There were a ton of math equations and word problems.  I feel as though I bombed those… fractions, square root stuff and more… thankfully I know I answered what the symbol for Pi was … 3.14.  I attempted quite a few fraction problems, but I am not confident that I completed them correctly.

At one point I sat with headphones on and the CD test they had me listen to had me repeat back sentences by the narrator, but at times during that test, there was background noise - like people talking…my downfall.   Then the narrator said 2 different sentences at the same time and I had to repeat back the one that I heard from the right ear and vice versa with the left.  My brain was completely fried after that test.  I had to concentrate really, really hard to hear the sentences above and beyond the background noise.  It was like being at a busy restaurant with my husband and trying to focus on our conversation - I get SO distracted, that he used to think I was eavesdropping on other peoples conversations, when in fact, I just couldn’t focus with all the background noise and was squirming in my seat!

I go back again on Tuesday for a QEEG Screen that will test/measure brain waves.  This is a bit controversial at the time because there is research that shows ADD brains look different than non-ADD brains.  I think there are a lot of non-believers in this form of testing for ADD.  

I figure that all bases are being covered with all of this testing that I am going through - and the best part of it is that my insurance is paying for most of it.  I had wanted to go to this particular clinic a few years ago, but I had different insurance at the time.  So, I feel as though if this assessment doesn’t show a final result of ADD or possible learning disability then maybe I can just move on with my life… or maybe I will once again go back to thinking that I really am stupid.  I can’t bear to think like that.

explosive/inflexible children?

So, I’m not only dealing with my own issues of ADD, anxiety, depression and a possible learning disability, but now my husband and I have finally made a decision to have our oldest child evaluated for Explosive/Inflexible behavior.  We have an appointment with a psychologist next week.  This has been going on since she was about 1.5 years old and we always figured she’d grow out of it.  You know, the terrible twos and threes?  We kept saying, “by the time she’s 4 it will get better”.  Then when she turned four we started saying “well, by the time she’s 5 it will get better”.  She is now 6.5 and things have not gotten better.

On a daily basis we almost feel as though we walk on eggshells trying to avoid power struggles, her very low frustration tolerance, and her emotional meltdowns, but nonetheless they are still happening.  She and her little brother fight constantly and it’s often physical.  I am constantly aware that we need to be very close by when they are together.  We are very hands-on parents and restrict TV watching, feed our children whole grain foods, fruits and veggies, read with them daily… just trying to do all the right things.  She gets herself so emotionally revved-up that her immune system isn’t as strong as most average kids - getting colds and many ear infections over the last few years.  She just plain wears herself out with all of the emotional outbursts, angry rants and inflexibility if things don’t go her way.  And trust me, we do say “no”  to our kids - quite often actually.  

I am not a meek or mild person.  I consider myself low maintenance when it comes to life and I’m very down to earth so I do not see our family life as anything “average” if there even IS an “average” or typical family life.  These emotional ups and downs from hour to hour or minute to minute leave us all tense and stressed and what bothers me the most is how it’s affecting our other child - our little guy who is only 3.  He’s starting to do this nervous little thing when you hold him where he grabs a hold of your shirt between his thumb and pointer finger and rolls it back and forth.  Sometimes if he’s not being held, he’ll do it to his own shirt.  Needless to say, it all adds to my daily anxiety issues too.

The beautiful side of this child is her sweetness and amazing creativity - she’s an adorable little girl too and smart as a whip.  She is equally sweet as she is angry and it often feels as though it’s one or the other - no middle-of-the-road.  Oftentimes after an emotional meltdown if I talk with her after the “storm” has passed, she won’t even remember what she was raging about.  I always thought that was strange.

I want her to succeed in life, and by no means do I mean making lots of money.  My idea of succeeding for her and for the rest of us is having meaningful relationships with others and having friends that treat her well and being able to reach out to others if she is in need.  I can only imagine that things MAY NOT get better - and I’m thinking ahead to puberty and it really scares me to think that this may get worse.

I stumbled upon this website the other night while we were researching Explosive/Inflexible children and it has some really great information if anyone needs it.  The Foundation for Children with Behavioral Challenges.  

There is a tool that is also explained on this site called CPS (Collaborative Problem Solving) that you can use with explosive/inflexible children.  I need to read up more about it, but I will do anything it takes to bring more peace and harmony to our little family.  Nobody should have to live like this.

ADD fog brain

sometimes I get so overwhelmed with life - i feel as though i’m in a fog.. just going through the motions.  pretty sad when you think about it that way.   

trying to lose weight.

trying to get stuff done.

trying to be a good parent and stay on top of discipline and healthy meals, etc…

 

always feeling like the climb up the motivational ladder just gets steeper and steeper and it’s hard to ever feel like I really have all my shit together.  How come it seems like everyone else does?  Or is it just a facade?

productive days

today is a better day, not feeling the depressive symptoms like yesterday.  I haven’t been getting as much sleep lately either… need to work on that

 

I was able to get a whole bunch of stuff done this morning:

grocery shopping, vacuuming, changing bed sheets, emptying dishwasher, clothes off the line all between the hours of 9am - 11:30am!  … it’s amazing what i can do in a short amount of time when i set my mind to it.  Maybe i do have a bit of the Hyperactive component (as in the “H” in ADHD) who knows? 

The distraction also plays a role in this… i could be scrubbing the floor and then something will trigger a thought about laundry and then I’ll find myself in the laundry room and wonder how i got there and what was i doing beforehand…and then off to wash dishes… it’s never ending.

 

ADD strangeness…

better for now…

as the day goes on, i am feeling better, not so sad.

i think my kids are a good distraction to all my thoughts on my current mental state.  We had a fun afternoon swimming and playing UNO.