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.

Friday, January 11, 2013


It's official. Nicholas has the suds.

He woke up last night coughing and complaining of a sore throat.

I called Children's Hospital this morning to cancel his overnight stay. The coordinator told me not to worry. She said she was getting ready to call me to tell me that Nicholas had been bumped. The hospital is full with children suffering from the flu.

The city of Boston has declared a flu emergency.

Since Nicholas has a weakened immune system, this cancellation is probably a very good thing.

Thankfully, both of my children received flu shots. All week he has been very emotional and uncooperative, a sure sign that something is wrong. There were no outward signs of sickness though,  no runny nose, no swollen glands and no constipation, which is usually my first clue that something is off. He was just not himself. I knew something was coming.

We cut back on his school day to prevent him from getting over tired. We loaded him up with fluids, vitamins and healthy food. But alas, the night before our hospital visit, the tough little man finally succumbed to the side effects of the flu.

"But Mummy, I want to go to the hos-BIT-i-BAL!" Nicholas wailed. "I want to get my buttons on!"

There was no consoling my enthusiastic adventurer, his tears were as big as watermelons.

I, on the other hand, am relieved. I was having trouble preparing myself for this next visit. Usually, I am able to simply flick the special needs mother's block switch and easily shut down the emotion that accompanies our visits to the neurology floor.

This time, however, I was unable to access this superpower. I felt like I bumped into a brick wall and lost all my power coins. It was as if my supermario button on my controller was jammed leaving me unprotected and exposed to the relentless attack of bob-ombs, thwomps and pirhana plants.

So, as the lovely neurology coordinator, Kathy, (another of our favorites) reassured me that this cancellation was probably for the best, inside I breathed a very big sigh of relief. Kathy was able to give us more time and rescheduled our appointment to February 1.

We had a regular neurology appointment scheduled for Feb 14. I was anxious to speak with our beloved Neurologist, Dr Takeoka about a new medication called Provigil (more on this later). It is a medication that many families have successfully used to help their child diagnosed with PWS to sleep better through the night and become more focused during the school hours. It seems to normalize their disrupted circadian rhythms and allows them to concentrate better during the day.

Dr T's assistant called us back to tell us they had canceled this appointment. She explained that Dr Takeoka knows we are anxious to discuss this new trial with him. He wants to meet with us on Saturday (!) while we are already in the hospital, saving us another trip to Boston and addressing our immediate concerns.

This small act of kindness is a very big deal to a family raising a complex child.

He placed our needs ahead of his own, meeting with us on an off day. He understands that to a family of a child diagnosed with special needs, there is nothing more important then alleviating our child's suffering now.

Once again, I feel fortunate to have such a kind and helpful healer in our lives.

In the meantime, we are resting, giving poor Nicholas a chance to recover from the suds and his poor mother a chance to unstick her power-up button. 


Elizabeth said...

I'm so glad for ya'll. I just read about the flu epidemic in Boston, and I was thinking that you should request or find out whether you can do the overnight EEG at home. The last few times we've checked for ESES, we've been able to get the ambulatory one, and even though it stops and starts, there's enough information to make the diagnosis. We use UCLA which you might know has one of the best epilepsy centers in the world, and we're so happy not to have to go in to the hospital with Sophie.

The Henrys said...

I'm glad you had to reschedule! As Elizabeth, I had heard about the flu epidemic and was worried about you and Nicholas having to go there and be exposed to that!

I'm sorry to hear that he does have the flu, but hopefully the flu shot and all that you did beforehand will help him to fight if off quickly.

I also hope that this reprieve will give you time to gather yourself and prepare for Feb. 1st.

I also have to say that I am jealous of this wonderful doctor you have! He sounds like a very thoughtful and caring man.

Giulia said...

Nicholas' neurologist reminds my own ENT doctor (I don't have epilepsy, but hearing loss) :)
The only *slight* problem is that my ENT doc works too much and forgets to eat, poor him !

Give some consolation to Nich because I have the suds too ! Only a cold, but I have to take care of it because it can pill up in my remaining ear.
Acetylcisteine helps to fluidise and go into the tissue. When it pills up, it adds hearing loss to the already existing hearing loss.
Looks like suds travel through the ADSL ROFL

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