Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, 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.

Tuesday, February 26, 2013

Provigil, Parents and PWS

Everyday, I thank God for the Internet.

This amazing invention has enabled me to connect with other parents of children diagnosed with Prader Willi Syndrome. These parents live all over the world.

I can tell you, without a doubt, that I have learned more from these parents than any medical professional or specialist.

These parents share ideas, tips and treatment options and thanks to them, the health of my son has improved.

My latest discovery from these true experts is a medication called Provigil. Thank you Cyndi O!

Cyndi explained to me that Dr. Jennifer Miller, an Endocrinologist and PWS expert located at the University of Florida, had used Provigil successfully in patients diagnosed with PWS to prevent daytime sleepiness and improve concentration. Dr Miller had presented her findings in papers and PWS conferences.

Cyndi lives up north but makes the journey to Florida to see Dr Miller for her proactive approach in treating this syndrome.

Provigil is a stimulant medication, much like Ritalin or Adderall. It is used most specifically to treat narcolepsy. But Dr Miller found that this medication helped improve focus and concentration in children diagnosed with PWS. It prevented daytime sleepiness and also seemed to normalize disrupted sleep patterns. She saw few, if any, side effects. She also noticed a mood stabilizing effect in many of her patients.

Many children diagnosed with PWS will fall asleep early in the evening. They also wake very early in the morning and often have trouble sleeping soundly throughout the night. This lack of sound sleep can exacerbate behavioral issues. The early rising creates dangerous opportunities for children who food-seek or for those who elope.

Thanks to Cyndi, I met with our pediatrician to discuss this treatment option. We had been talking about starting Nicholas on a stimulant to see if it would help improve his focus during the school day. Since Weston and dear old Dad suffer from symptoms of ADD, it seemed that this might be a concern for Nicholas as well.

But our pediatrician was not familiar with this medication and felt uncomfortable prescribing it.

I emailed Dr. Miller and asked if she would provide me and Dr B with her thoughts on the use of this medication.

God Bless Dr. Miller.

She responded to me via email with some of her observations. This woman is a saint. She is a wonderful physician, researcher and advocate for all patients with PWS! Thank you Dr Miller.

I also emailed Nick's Children's Hospital team to seek their respected opinions as well. Both Dr Stafford and Dr Takeoka were on board and agreed it was a good treatment option for Nick. Thank you Dr Stafford and Dr Takeoka.

Still our pediatrician was uncomfortable and requested I speak with Dr Takeoka since this medication is most typically used to treat narcolepsy.

Thankfully, we were due for Nick's EEG and as I posted earlier, we saw the return of some sub clinical spiking on his EEG. This spiking was specifically in the frontal region of the brain which ironically controls attention.

So, it seemed a "no brainer" (pardon the pun) to start Nicholas on Provigil.

We started at 100 mg and after 2 weeks increased to 200 mgs.

So far,  here is what we notice.

Nicholas no longer dozes off during the day, not even in the car!

His focus and concentration is much improved. He is calm and alert with less behavioral outbursts.

He stays up much later at night. Typically, he would fall asleep by 7 pm every night. He has been staying up later.

He seems to sleep sounder with less frequent wakings.

He sleeps later and is no longer getting up at 2 or 3 am.

I have however, noticed more skin picking.

I believe it is because he is now so focused. I have been vigilant with the band aids. We will see how he does when he is distracted by school.

I would be happy to answer any questions, for those interested.

I am thankful to belong to community that shares such helpful information.

Thank you again dear Cyndi.