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, February 16, 2012

So, What Causes Anxiety in Children Diagnosed with Prader-Willi Syndrome?

We know now that Nicholas is suffering from anxiety.

We also know that this anxiety as interfering with his ability to learn, to speak and to behave calmly in the world.

So, what is causing this debilitating issue?

And more importantly, how do we treat it?

These answers are not so easy to find.

Is his anxiety caused by his physical disability? Is he wired to be anxious?

Is it behavioral, caused by certain stresses in his environment?

Is it hormonal, as his body is starting to mature? Is there some hormone inside his body that is lacking, or perhaps too much of another hormone that causes him to feel stressed? Does his growth hormone need to be increased?

Is it food related? Is the thought of food becoming so distracting, it is causing him to be anxious all day?

Or is it perhaps, all of the above?

And when do we as parents consider medication as a treatment for this condition?

As Nicholas and I journey from one specialist to the next, in an effort to unravel this mystery, it appears at least to me, that it is all of the above. Nicholas is plagued with many, many issues that predispose him to anxiety. My job as his parent is to address each one.

But where do I begin?
Is it a physician we need, a psychologist, a psychiatrist, an endocrinologist, a neurologist, a PWS expert, a developmental pediatrician, or a special needs advocate?

Do we need medication, behavior plans, locks, hormones...or voodoo magic?

The answer for us, has been....again...all of the above.

Except the voodoo of course...although I wouldn't rule it out if I honestly thought it would help!

We started where Nicholas's anxiety was the worst....school.  He suffers from issues like: lack of academic progress, speech dysfluency, behavioral issues, skin/lip picking and a lack of writing skills to name just a few. Our latest Neuropsych report indicates a significant drop in IQ.

So, we hired a PWS educational consultant named, Naomi Chedd and a special needs advocate/attorney to help us sort through the issues. We are hopeful that by addressing these issues first, we will see an overall improvement in Nicholas.

Once school issues are resolved, it is off to a developmental pediatrician who was referred to us by our new Geneticist. This physician will review all of our test results and the latest accommodations we have made. They will review the data, and Nick's demeanor to determine if his anxiety has improved. If it has not improved, they have the ability to prescribe medication. This, however, is a last resort for us, since both his Neurologist and Geneticist believe Nicholas has a very laid back demeanor and medicating him right now may actually cause him more harm than good.

So, our  first step is the IEP today!

As an added note, it has also been a very intense few months for me. The appointments and professional discussions have my head spinning. Since I am the caretaker for both of my children, I need to slow my pace so my overall health (as well as my mental health) does not suffer.

I do honestly believe my son is like a mirror, he reflects the energy of the individual nearest to him. I have found that folks with strict, narrow and inflexible energy have an immediate negative effect on Nicholas. He responds more appropriately to calm, nurturing and flexible spirits.

I am thinking of taking a "just me" weekend, a time for me to relax and calm my restless spirit. What good is treating Nick's anxiety if I too am a source of his stress?

This looks pretty relaxing to me, don't ya think?

A "time-out" for Mummy.

1 comment:

The Henrys said...

That looks Heavenly to me! I want to go there so badly I ache!

I say go for it, and take the time you need. You have had lots going on, with lots of stress. This weekend away may be just what you need to continue to do the best you can for both of your sons. You are a wonderful mother, and this weekend away will refresh and rejuvinate you!

PS, can I go too??

PPS, your comments about the school investigation were exactly what I needed to hear. So much peace come over me when I read your words. Thank you so much for being such a good friend!

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