Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Thursday, January 19, 2012

The Debilitating Effects of Anxiety on Learning in Prader Willi Syndrome

Sorry it has taken me so long to review the results of Nicholas's EEG with all of you. I wanted to take my time in writing this post so that I could clearly communicate this message. I believe that anxiety is a very important issue to understand for all parents of children diagnosed with PWS.

I believe that chronic anxiety is a physical condition that is overwhelmingly misunderstood in this society.

It is an ailment that can effect every moment of every day for the individual who suffers from it. It is the robber of happiness, the thief of normalcy and the harbinger of paralysing fear.

It can effect things as important to a child as his ability to learn. Fear and nervousness can effect their ability to relax and enjoy all that the world has to offer.

My grandfather was so paralysed by the crippling effects of anxiety, that he eventually could not leave his home and struggled to support his family. He suffered from agoraphobia, a severe form of anxiety.

But for some reason, I had forgotten all this.

As I have mentioned in previous posts, Nicholas has begun to develop some unusual issues. Specifically, some motor tics, cognitive regression, stuttering and speech dysfluency, early morning awakenings as well as some behavioral meltdowns. Incorrectly, I assumed that these issues were related to his ESES, a rare form of epilepsy.

I was wrong.

It only took an overnight EEG at Children's Hospital and a few savvy Neurologists to open my eyes.

Nicholas's overnight EEG was completely clear with no recorded spikes whatsoever. His epilepsy medication is effectively treating his condition. He is also maturing. The doctor's explained to me that most individuals seem to outgrow ESES and are symptom free by the time they are 12-years-old. But despite this happy news, I was still worried.

"What then, is causing Nick's regression?" I asked.

Having watched Nicholas become so upset by the EEG process, the astute Neurologists explained to me that chronic anxiety is a real disorder, just like PWS. They explained that many individuals diagnosed with PWS are also diagnosed with chronic anxiety. They explained that Nicholas's lack of academic progress and cognitive regression may be caused by anxiety.

"How could that be?" I asked.

Dr. Harini explained that as demands increase, Nicholas becomes anxious, and is unable to cope effectively with this increase in stress. Lacking the ability to effectively process these fears, he has a behavioral meltdown thus "escaping" the increased demands. It becomes a vicious circle with the end result being a lack of learning, even regression since he fails to execute these important learning activities. She suggests Nicholas be evaluated by a psychiatrist and a behaviorist.

As I heard her words, it was as if a giant hammer falls upon my head, and suddenly I am awake.

Nick's stuttering and speech dysfluency becomes more pronounced when he is anxious. His eye blinking and muscle twitches, also appear when he is stressed. He wakes at night anxious for breakfast. His behavioral meltdowns have increased when demands on him are increased. Like others diagnosed with this condition, his anxiety is beginning to effect him every moment of every day. And suddenly I realize, these doctors are correct.

Dr Harini explained that if Nicholas's anxiety is controlled, his cognition may actually improve. She further explained that most public schools lack the ability to understand anxiety and how to effectively teach those who suffer from this condition. This ignorance further escalates this condition, creating a vicious cycle of behavior with the end result being a lack of learning.

I am surprised at her statements. I thought cognitive testing was very accurate and permanent.

I question Dr Takeoka to ensure I am not living in denial about my son and his cognitive status. He explained to me that every winter we notice a general health decline in Nicholas. Since we tested Nicholas during this time of year, it is not surprising to him that his scores may be low. He explained that this is just a snapshot of Nicholas's progress at this moment, and not a final answer for Nicholas and his overall cognitive health. He cautions us that while anxiety medication can help control the effects of anxiety, if mismanaged it can also cause further cognitive regression and must be evaluated carefully.

He agrees with Dr Harini that with the right supports, Nicholas scores can improve.

I am relieved that both doctors agree. I breathe a little easier.

Both Neurologists emphasize to me that Nicholas is a very complex child. He suffers from many medical conditions. I must admit sometimes, I forget this. This medical fragility can also make a small problem turn into a monumental one simply because there is so much going on in his little body.

I feel foolish that I assumed Nick's issues were related to his epilepsy. I did not take his medical fragility and his escalating anxiety issues seriously.

I know now what it is I need to do to provide my son with the tools he needs to be successful in school, home and life.

It is time for Nicholas to be evaluated by a child psychiatrist.

It is time to develop an IEP with the school that is behavior-based and works to address the negative behaviors that may be interfering with his ability to learn. It may even be time to consider a new school that is more "behaviorally equipped" to handle Nicholas. I have alot of research to do.

But more importantly, it is time for me to remove the stress, nervousness and anxiety that plagues my young son so that he may enjoy his life, his family, and the world.


GB's Mom said...

Anxiety is very common with autism and Fetal Alcohol Syndrome also. And it definitely impairs a child's cognitive abilities. So do a lot of epilepsy medications. Life is a balancing act.

Elizabeth said...

Wow. That is astounding. And how puzzling and frustrating that his symptoms mimic ESES -- we know all too well how devastating ESES is (my daughter had it twice, at age ten and at age 15). Your doctors sound incredibly astute; I'm so glad that they were able to pinpoint that anxiety has been wreaking such havoc on your boy. There is so much to learn in the area of mental health -- so much stigma to overcome -- so that our culture will see disease and treat it accordingly. I hope Nicholas gets better soon -- and thank you for bringing us up to date!

Tanya Johnson said...

I am a special education teacher and your post is bang on. I am also a mother of a 7 year old with PWS and I am excited to learn more about some of the research that Tauber is doing in France on Oxytocin that may help to reduce some of this anxiety that our precious children live with. I am a huge believer that by improving communication, you can reduce anxiety which can improve behaviour. Good behavioural strategies and techniques are extremely effective when the root of the anxiety is acknowledged and dealt with. What was the trigger and how can we avoid a certain behaviour in the future. A proactive approach is so important and its what educators often forget. Being reactive is less productive. Dealing with the core of the problem can eventually eliminate the behaviour permanently not just put a bandaid on it. Thanks for you post, I enjoyed reading it and understand how you feel first hand.
Sincerely Yours,
Tanya Johnson

Prader-Willi Syndrome Lab at Vanderbilt University said...

We are featuring your brave post on our Facebook page today! We thought you and your readers would be interested in checking it out: www.facebook.com/VanderbiltPWS

In our psychology research lab, we study the behaviors of people with Prader-Willi syndrome and find that many have serious problems with anxiety. Fortunately, behavior management strategies (such as those provided by our Senior Research Coordinator, Elizabeth Roof) can really help reduce anxiety symptoms!

Anonymous said...

Hi, my daughter is 10 with PWS and ASD, and with the exception of the epilepsy you could have been writing about her !

Anonymous said...

Kari Dunn Buron has written a wonderful book, When My Worries Get Too Big! A Relaxation Book For Children Who Live With Anxiety. We found it at our local library. It is a simple book that has a great impact at our house.

Lisa said...

Thank you all for your comments, I believe this is such an important issue. Thank you to all who shared this post on Facebook, and other blogs. Hopefully there are other children who will benefit from our journey. Many thanks again to all!

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