Wednesday, February 22, 2012

when the medication is right

Last night I got a phone call from two excited 6 year olds.  Their mom tried to hook us up with Facetime, and I got a brief glimpse of their bright smiles before my crappy internet connection failed.  So we talked on the phone, and put the speakerphone on so Stevie Wonder and I could hear their news at the same time.

They wanted to tell us about their accomplishments at school.  Maddie went first.  She told me about her grades and that she can read 106 words a minute.  She had several 90's, and a 100 or two in other things like spelling, language and math.  SW and I told her how proud we were of her.  Her teacher had written something along the lines of A+++ on her paper.  SW and I were both grinning from ear to ear.

Then it was Duncan's turn.  My stomach clenched, waiting to hear his results.

Duncan has ADD (Attention Deficit Disorder, a learning disorder).  It has been a months long struggle, plus a lot of tears for Jenny (his mom) to find the right medication.  It took her weeks to decide to try medication.  Then weeks and weeks, three different medications, plus adjusting the doses.  The first medication, Intuniv, made him too sleepy.  He couldn't stay awake.  After a couple weeks of that, the pediatrician tried Vyvanse, another medication for ADHD.  The medication was adjusted after a few weeks.  And it turned a happy little boy into an aggressive, angry, unhappy child.

The problem with the medication was that when it wore off, Dunc had withdrawals.  Every evening Duncan was angry, and hated everything and everyone.  And if you knew Duncan, you would know what a personality change this was for him.  Polar opposite.

Jen would call me from time to time, and I'd listen as she despaired ever finding the answer.  She questioned giving him medication at all.  She worried he would be held back.  She worried what it would do to his self esteem if his twin sister went to second grade and he got left behind.  She worried what the medication was doing to his body, and the turmoil he was in.  She worried because he struggled, struggled, to do his schoolwork.  She worried what it was doing to Maddie because Duncan required so much time and attention.

We shared information we found back and forth with each other, trying to figure this out.  And I listened.  And provided moral support.  Encouraged.  Bolstered Jen's flagging spirits.  Provided the optimism I knew Jenny needed.  Worried myself sick when I wasn't talking to her.  Prayed, lots of prayers.  I knew Duncan was trapped inside his own mind.  I knew there was an intelligent, bright boy in there waiting to show us what he could do.  Wanting to learn but unable to process the information being given to him.  Struggling, struggling to learn.

Third medication, Focalin.  We all held our breath.

Duncan started doing better.  Suddenly.  The doctor had told Jen that if the medication was right, she would see immediate results.  And there were, but he was still having some trouble.  Jen talked to the doctor on her gozillionth trip back to the pediatrician's office with Duncan.  She increased the dosage.

And now here we were, on the phone.  I waited to hear the results, and held my breath.  Duncan started talking.  He was so excited I couldn't understand a word he was saying.  Jenny started laughing.  She told me not only had Duncan passed all his tests last week, but he made dramatic improvement.  My stomach fluttered and I took a deep breath as she told me just how much he had improved.  An 85 in math, 93 in reading, 80 in spelling and 70 in language.  Jen said she had hollered in amazement when she saw the math grade.  Duncan had been failing math.  Failing.

The best thing for us?  Duncan is Duncan.  His personality hasn't changed, and we see no aggression in him.  He's our happy, loving child again, giving us lots of hugs and smiles.  I asked him last weekend if he felt any different when he takes the medication.  He told me no, he couldn't tell he was taking anything.

That is the way medication should work.  When you get it right, you have a child who can learn, who gains self esteem from his accomplishments, and leads a normal, happy life.

Way to go Duncan.  Way to go.
Duncan and Maddie, first day of 1st grade


~cath xo
Twitter @jonesbabie

40 comments:

  1. I love this story. I am a teacher and have seen the dramatic results myself when the medication is finally right. Way to go and a BIG congratulations to Duncan!

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    1. Thanks Shelly I appreciate the feedback. Duncan's teacher didn't want him to take medication, she was dead set against it. Even though she had to take him out of class one day because he became upset...he couldn't understand the work and it was a timed test...I wonder if she feels differently now?

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  2. How wonderful Cathy. I'm so pleased for all of you but most especially Duncan. I have seen first hand children struggle and what it does to their self esteem. As an educator I have to question what we do that a 6 year old feels a failure. It has to be the system that is failing the child not the child himself/herself. .What a relief it must be to your family to see Duncan return to his normal happy self.

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    1. I agree Mary. It horrifies me to think about a 6 year old taking medication, the nurse in me cringes...but when he told me he doesn't feel it working, I realized it was going to be ok...I questioned him for several minutes about it last weekend...then Jen called with those wonderful grades and I was finally able to get some sleep...

      I appreciate your kind words.

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  3. I know your struggles. We spent an entire year trying 3 different medicines for Michaela. She was in first grade at that time, and by the end of the year we realized that she had missed way too much learning and held her back a year. She repeated 1st grade and understood why, but the kids were cruel and would say horrible things to make her feel stupid. I was surprised that their parents allowed it to continue, not even taking the time to try to explain to their children how these things happen.
    Needless to say, Michaela ended up on a medicine that caused her to go into an Acute Pancreatitis. She was taken off the medicine immediately. It was at that time that I researched alternative options. That was 7 years ago, and she has not been on an ADHD medicine since. I had to have much patience in working with her, constantly re-focusing her. Now that she is older, she can 'feel' the ADHD and when it becomes unmanageable for her, she lets me know. We do a lot of relaxation and breathing techniques. With all of her health issues she is on enough medicine. If we can effectively manage without another one, we give it a try.
    It's wonderful that Duncan has found the right medicine for him. I think it's going to make all the difference in the world to his progress :)

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    1. That is exactly what we feared Mary, that Duncan would feel stigmatized by being a grade behind. We were lucky the medication worked, it could have taken much longer. Duncan has a wonderful pediatrician and she has been very sensitive and supportive of Jen and Dunc. Jen said every time she went in and talked to the doctor, she came away with hope and feeling more optimistic. We were truly blessed all the way around with support and excellent professionals. And to hear the excitement and PRIDE in his voice the other night...that makes it all worth while.

      Thanks for your wonderful feedback!

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  4. So happy for Duncan and proud of Jen for keeping after it until they got it right! Can't wait to see you and Dooj this weekend!

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  5. Way to go Duncan...can understand your worries. My son also had infantile epilepsy...the effects of which can be seen even today though he is cured.

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    1. I am so glad your son is well Janaki, and I appreciate your kind feedback... :D

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  6. This is the problem with so many medications that attempt to alter neural pathways or the chemicals that feed them. We don't know enough about the interactions to determine a priori which (hopefully, one) will make that difference.
    I'm thrilled at the results- and that it only took three tries to find the better choice. Notice I did NOT say best- because there may still be one out there that will let Duncan terminate his yoyo spinning and afford him the ability to "go round the world..."

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    1. Yes Roy, I realized after reading extensively that it could have taken much longer, we were so lucky...

      Thanks for your wonderful feedback, and the tweets too! :D

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  7. This is great news Cathy! It's true that we are the greatest advocates for our own health. Medication could be scary, but when you do find the right ones and the right combination/dosage as you had pointed out here, they could be God-sent!

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    1. It's all about responsible prescribing and taking it the right way...medications are abused so much, and as a nurse I have seen the spectrum...thanks for adding your insight Joy.

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  8. I am happy for Duncan, things are looking on the brighter side for him and here's hoping they just get better and better.

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    1. It's going to be fun to watch this amazing boy and see what he can do! :D

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  9. Oh, what glorious news for little Duncan! Your grandchildren are absolutely adorable!
    Thanks for sharing this uplifting post with us. :)
    Blessings!

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    1. Thanks Martha. I've chewed on this one for a while, and almost posted about our struggles, but held back. When Jen called, I couldn't contain it anymore. It just popped out in a flurry of words. :D

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  10. That's great that it is finally coming together and you are getting him back at last. Such an awful road to have to travel, but fingers crossed the destination is worth it :-)

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    1. Yes Glen, you never want to see your kids struggle, even though you know that happens in life. It's a good feeling to have it turn out well. :D

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  11. Happy days! What a wonderful update! :-)

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  12. That is so great, Cath, I'm so happy for Duncan! Children have so much potential if given a chance. You have beautiful grandchildren.

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    1. Thank you Adriene..I think they are beautiful, but I know every cow licks its own calf. :D

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  13. Oh how wonderful for you all that the correct medication was found. I know the pain of the search. I am glad that Duncan can be himself and learn at the same time. Congrats to you all. <3

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    1. Thank you Jan, I really appreciate your kind words.

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  14. You had me in tears with this, Cath. I'm happy for Duncan and for your whole family. I love this picture of the two of them ♥

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    1. Thank you Corinne, I wrote this through tears...I appreciate your taking time to share your thoughts with me. xo

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  15. This is a fantastic news! I don't know anything about ADD, and I am glad that you found something that works. I hope that Duncan will go from strength to strength !

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    1. I've learned a whole lot more about ADD than I thought I would ever know! Thanks for your wonderful comments Muriel!

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  16. What a great story! A happy, satisfying ending. A better life for Duncan - and his mom.

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    1. Life isn't always smooth, but it's how you approach the obstacles that make the difference. Thanks for your reply Pennie!

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  17. To only take a few months to find the right medication is amazing. It took us years with our oldest and makes a world of difference!

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    1. I was afraid it would take us years too. I applaud Dunc's pediatrician for her knowledge and patience, and support of my daughter. Many times she bolstered Jen's confidence and made her feel better by listening and talking to her. She's taken care of the twins since birth, and we were blessed to find her.

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  18. This is so great. My youngest has ADD that he had diffuculty controlling beginning in preschool. We went to a wonderful pediatric neurologist who tried everything before meds. Unfortunately, my school system insurance wouldn't cover alternative treatments. Meds helped with the ADD but caused Tourettes-like symptoms, requiring more meds. By mid elementary school, he had an IEP and was in a pullout program, by middle school he was in a consult program and they wanted him to have a word processor to help with the writing disability and the school system wouldn't provide it. I worked for this system, helped write IEPs and still couldn't get what he needed, I felt for parents who couldn't or wouldn't advocate as strongly as I did. He is an adult now, a paramedic, in college parttime and a Dad

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    1. I am so glad to hear you were such a strong advocate for your son. It is our responsibility as parents to be that advocate. Your son has succeeded, and I am so proud to hear of his achievements. How gratifying it must have been for you that all your work and effort paid off so handsomely. Bravo to you!

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  19. Thank you all for sharing your wonderful replies. An update on Duncan...his grades have rebounded DRAMATICALLY. He is able to focus, and he has gone from making 0-40's to making 80-100's. I can't tell you how dumbfounded I have been by this turnaround. Life isn't perfect, he still balks occasionally on homework. But it is just a normal reaction to 2 hours of nightly homework, not that he can't focus. Jen told me the other night if she has to maintain this routine until he graduates high school, she will. Because Duncan is smart, and is so proud of his achievements. I'll be framing his and Maddie's recognition awards soon, and will post photos of them when I do. They are both anxious to have their "awards" framed and hanging up.

    I guess what makes me the most thankful is the boost to Duncan's self esteem. He wants to make good grades, and can't wait to tell his mom every time he makes a good grade. What happens to children and how we help them deal with it affects how they approach challenges the rest of their lives. I wanted Duncan to realize that there was a solution. And that he was NOT a failure.

    We are blessed. Thank you all for the support and encouragement. I appreciate every word you have taken the time to write.

    xo

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  20. Does my pride show that much? I try to keep it tamped down. :D

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