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.

Sunday, February 20, 2011

Motor Tics and a Missing Mojo

Last weeks visit to the Neurologist has me feeling deflated. Not only did we learn of the passing of our dear friend, Dr. Stavros, but we also discovered that Nicholas has started to develop some motor tics.

Typically, I am a positive soul, always looking for the gifts in the rubble, this week however, I must admit, I have lost my mojo. I am finding it hard to rebound back to my usual self. I am feeling overwhelmed.

In the last few months, Nicholas has developed this unusual blinking symptom. We notice it particularly when he eats. In the past, we have always thought that these were absence seizures, since Nicholas was diagnosed with ESES, a type of epilepsy that includes these kinds of "mini seizures".

The frequency of this blinking has increased in the last few months. We have also noticed a disruption of his speech, an increase in his weight and some unusual shivering spells. The blinking had worsened at school too, as I received a call from his teacher concerned about his potential for choking at lunchtime.

During our visit with Dr Takeoka, our wonderful Neurologist, we discussed these issues and had Nicholas eat his lunch so the doctor could witness this unusual blinking phenomena. Dr Takeoka watched Nicholas carefully and made several notations. I was certain these were seizures so you can imagine my surprise when Dr. Takeoka told me he thought Nicholas was experiencing involuntary motor tics.

"Motor tics?" I gasped, my mind now spinning out of control as I wondered if Nicholas had acquired yet another diagnosis.

Dr Takeoka explained that since there was no change in Nicholas after these events, they were considered "a tic". He said there could be many reasons why these were occurring. His first thought was that they could be a result of Nicholas' thyroid hormones. Thyroid levels that are too high or too low will cause several of these symptoms. Since Nicholas does indeed have hypothyroidism, and we have not checked these levels for over a year, this could be the culprit.

He also noticed that over the years, during the winter months Nicholas seems to exhibit more of these events. If it is his thyroid, then simply increasing his dosage of levothyroxine should help eliminate the problem.

If hormone levels are normal, then we begin the difficult task of eliminating variables. According to Dr Takeoka, some children will develop transient tics during their childhood. The reason is unknown. Anxiety, however, can be a trigger. Usually the tics will disappear as the child ages. Some tics however, can persist throughout a person's life. If the tics persist and become disruptive to Nicholas's daily life, then medication can be prescribed. Anti-anxiety medication is used as the treatment. Of course, Dr Takeoka does not want to treat Nicholas with medication unless it is absolutely necessary. We are going to wait to see the results of Nicholas's blood work.

I fired off a barrage of questions and the wonderful doctor answered all of them honestly and completely. Dr Takeoka is another kind and patient caregiver who blesses our lives. We are indeed fortunate to have him on our team.

Needless to say, my husband and I left Dr Takeoka's office feeling sad and overwhelmed. And although Nicholas's blinking is bothersome at the most, and certainly not a life threatening situation, to me, it is just one more "condition" that plagues my son and prevents him from being the best that he can be.

I guess what's more concerning to me, is I need to find my mojo. This is that mythical magic spirit within me that has always been there to help me face a challenge with fierce determination and steadfast love for my son. The spirit eager to grab my sword and look those motor tics in the eye and say.....I am not afraid. I will defeat you too. It is a power borne from love for my son that has helped me to overcome any obstacle. It is what has always defined me.

I believe that I am suffering from some kind of  "special needs battle fatigue". I have taken this weekend off. I am spending time with my husband and children. I am taking the phone off the hook and relaxing with a good book and perhaps a stiff drink. I am not a drinker, and lightweight that I am, will usually fall fast asleep after just one drink, but in this case I think I may make an exception.

Perhaps a cold margarita and some warm sand will help me get my mojo back.


The Henrys said...

I so understand your "special needs battle fatigue" and would love to join you with some drinks on a warm beach! Oh that would be Heaven!

Hugs to you and give yourself some time!

Isaac's Mom said...

Hope you get your mojo back soon!!! I'm sure you will!!!

Candy said...

As a hypothyroid patient, I am suffering different kinds of symptoms like depression, memory loss and even anxiety but I keep on fighting! That's why I'm taking porcine thyroid . Hugs for you! I'm sure you can get your mojo back!

Lisa said...

Thank you all for helpng me find it!

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