Friday, May 04, 2012

Dual Diagnosis: ADHD and Down Syndrome

Another day, another diagnosis...

Today Aleksa went to the neurologist (same doctor we saw yesterday, they just didn't want to do both girls as new patients in the same day).  She was diagnosed with ADHD which was apparent within 2 minutes of entering the exam room :).

And now, I've become "that parent."  The one that says YES, let me try a medication to help with my child's attention and hyperactivity.

Let me first say-- the hyperactivity we have learned to deal with.  Deal we do.  It's not that big of a deal, though it can drive us up the walls some days.  The attention deficit, however, is not only frustrating to US on a much deeper level, but is SEVERELY LIMITING Aleksa's daily life.

People used to believe that there was no such thing as a dual diagnosis of Down syndrome and ADHD, and that the hyperactive and lack of attention were simply "part of the characteristics of Ds".  Having 5 children with Ds, let me assure you that it is NOT apparent in every child with Ds!  Three of my five have no indications of ADHD.  Two... DO.  Very much so :).  The second is younger and not at a place where he has NO ability to concentrate, therefore I don't feel comfortable seeking a formal diagnosis or medication for him at this time.

For Aleksa, some of her history could very well have to do with her attention deficit and hyperactivity.  She spent years... literally YEARS (8 of them) without any type of boundaries that would teach her social appropriateness, or to teach her to be able to look at, focus on, or otherwise concentrate on ANYTHING.  No one ever tried to get her to... so how would she be able to at 9 1/2?

Aleksa has adapted VERY WELL from institutionalized life to family life.  There are still a LOT LOT LOT LOT of difficulties, and more hard days than 'good' ones.  She still has behaviors that top the charts of what we've dealt with in any of our children, and issues with attachment and bonding that are more than we've ever experienced before and show up at very random times... not every day.

I have and continue to be a strong advocate of "don't seek any behavioral (including ADHD, autism, PTSD, etc) diagnosis for your newly internationally adopted child until 12-18 months after the child arrives home."  SO MUCH CHANGES (in those first 12 months especially) that a child that is a total out of control monster like Aleksa was (said with much love, and intentional menace because she would melt down in to the little "Incredibles" baby that burst out in flames and look the devil himself when she saw food and wasn't able to take it for herself and eat it RIGHT THEN (including a child walking down the sidewalk with a lollipop or someone eating at a food court as we walked around at the mall) therefore making life VERY difficult... to grocery shop, go anywhere in public, or especially to eat out and have to wait for food while others around us were eating... did you follow all that rabbit chasing?) can change in to the little girl that has behavioral troubles but generally can conform to whatever we're doing and participate as a part of the family-- with firm boundaries.

After that last sentence, go ahead and ask yourself WHO has attention issues... It's ok :)

If you didn't follow... I strongly believe that the changes in an internationally adopted child initially are significant enough to avoid diagnosing or medically treating behavioral things for quite some time, and therefore we tried other means to deal with the behaviors that we saw in Aleksa.

Here are some of the things that we recognized in Aleksa at 16 months home which are what helped us make the decision to seek medical intervention:

  • She can't look at anything for more than 1-2 seconds.
  • Aleksa cannot put a puzzle piece in a puzzle because of being unable to concentrate long enough to find the right place, put the piece there, turn it and successfully get it in.
  • Aleksa has not learned any letters of the alphabet to be able to consistently identify them even though she has been exposed to them daily for 16 months.  The same is true for numbers and the concept of counting.
  • Given two pictures and being asked for one- using a word or sign- Aleksa cannot pick up the right picture card consistently because she cannot look at the picture cards and concentrate long enough to figure out what we're asking her for.
  • Aleksa cannot sit in one place without very firm boundaries as to where she is to be.  (*some of this is related to her control and attention SEEKING behaviors as well!*)  
  • She is in constant movement whether sitting or standing.  Her hands are always moving, feet moving.  She touches everyone and everything around her, and makes constant "uh, hm, huh, wha, uh, nuh" sounds as though she's talking... but she doesn't talk.  
  • Aleksa has little or no "intentional planning" of movement.  She will go get something, put it down, get something else, put it somewhere else, pick up a crayon, put it back down, get another, draw one line, put it on the side, turn it over, snap it in half, get another crayon, throw it across the room, then stand up, get a book, open it, close it, flap it in her face (she copies Emma in this for a second or two) then  hand it to someone then try to get them to open it, then walk away, then pick up a piece of paper, then go to someone and murmur something (no speech...) then go put it in the trash can, then.....  It is a constant movement without anything meaningful or planned out.
The biggest reason for US to seek medical intervention/medication for Aleksa is that we want to see whether she will have a BETTER QUALITY OF LIFE by being able to control herself some more.  Basically, if a medication will help her to be able to focus on things better, then this could open up the world of LEARNING to her.  letters, numbers, shapes, objects... the list goes on!  It could possibly help her to focus enough to take in from her environment instead of being so hyperactive and inattentive that she can only draw little tidbits from it in 2 second pulses. 

The behavior... we deal with.  That has no bearing on us choosing medication at this time for Aleksa.  The goal is for her to be able to focus, to learn, and to take more control of HERSELF and her actions so that she can have more meaning in her life.  

So, today was 1/2 dose day (and no noticeable difference, I will say...) and tomorrow will be another 1/2 dose.  We will go to a full dose if we find that there are no adverse reactions to the medication after a few days.  We'll do this for a month then go back to the neurologist to evaluate the effects of the medication.  At the moment we're starting on a "classic" medication- a slow-release version of Adderall.

Our neurologist said today that children with Down syndrome and ADHD can have "true ADHD" which medications designed to help this will work well for.  However, children with "mental retardation" (yes, this is the term still...) in general can also have hyperactivity that's due to a different part of brain control which they haven't figured out how to control.  For those children, the traditional ADHD meds will not help, however stronger, more "psychiatric based" medications can re-center the child enough to help with the hyperactivity and attention issues where the ADHD meds may not.  Many of you may be familiar with Risperidone which is often prescribed for children with Ds and autism.  That is a different class of medication than the traditional ADHD medications, but can also be given to children with Ds and ADHD that do NOT have autism.

(*Let me take this moment to clarify that Emma will NOT be put on medications right now, because although she has Autism and Ds, she doesn't have behaviors which severely restrict her social, educational, or emotional life therefore we don't feel the need to seek that for her at this time*)

So... the adventure begins.  Two children with "official" dual diagnosis, and the entrance of the terms Autism and ADHD in to our daily lives.  Though... we've already been living with both, so there's not so much that changed except the titles... and the treatment!


  1. The terms "ADHD" and "autism" have been in our family for the last 4 years...Daniel has Asperger's and ADHD. I understand it's a lot to take in. I am so proud of you, Meredith. For seeking out answers, praying to God for guidance, and for being the advocate these precious children need. I love you, sweet friend. -Rebecca

  2. Meredith, I have several friends who have used meds after years of trying everything else. They only wanted their childen to succeed. The meds worked miracles, helped with self esteem and helped the kids cope with school and life in general. I am thrilled that Aleksa has been given this opportunity! Hugs to all!

  3. Have you, in addition to the meds, considered the use of small weights on Aleksa's arms and legs? It will slow her down a bit and also help her brain develop the correlation between where her body is in relationship to her environment.

  4. So glad you are choosing to address the problem with medication. I wee too many children who truely need medication missing out on life because their parents refuse it. It's amazing the cognitive and social growth once on the right medication!!!

  5. my sis(adopted at 17.5 months) home for 7.5 years in grade 3 (not Down's) has struggled GREATLY with school in the last 2 was like having a pms'ing teen in the house...she couldn't focus her eyes on the text long enough to keep her spot let alone read the paragraph...we finally pushed for testing and she's 2 entire yrs behind. A book report on a little book would take her HOURS. Homework was a HUGE HUGE fight. The day we started her on ADHD meds her teacher actually called me and comment that she was Focused that day(day one) and was wondering what had changed. YAY!! we now(for the most part) have a child that can get a book report done in 20-30 minutes on her own and a child that would forget everything and be sooo disorganized to a child that now voluntarily cleans her toys and sorts her clothes. I was very leery of meds but I'm SOOOO glad that we were able to get her on the right path to success! so far the biggest side effects been her losing 10 lbs..

  6. Made a HUGE difference for our 10 year old. We stared her on meds last school year. She couldn't read a sentence without looking up distracted and then reading the same sentence over and over. Meds have improved her learning ability so much. I agree, also having 3 kids with DS it was easier to know it wasn't "just the DS". Warning though: She will lose weight if you don't add calories. My Tia doesn't have any appetite for lunch. So we add Pediasure to breakfast and sometimes dinner. Hope you see a huge change like we did! Go Aleksa!!

  7. Tanner was diagnosed last week as well. He's been home 2 years today, and within just a few minutes it was obvious to the doc. In fact, she brought it up first. I have always been against medicating, but for him, it's reasonable to. Like she said, he has so much that he can learn, and we want to make sure he can pay attention and learn it before it's to late. So we started with a half dose of meds in the morning and evening, and will re-evaluate soon. I'm glad you are getting some help with Aleksa :)