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.

Wednesday, March 6, 2013

Nick's Mystery Illness

A few months ago, Nicholas picked up a nasty infection. He developed a bad sore throat and in response to this bug, his lymph nodes swelled to an alarming size. We treated the infection with antibiotics, but still his glands were very swollen, particularly the left one.

You may recall, our trip to Children's during the height of Hurricane Sandy (click here to read). The ER physicians suggested our ENT schedule an MRI, as they suspected he may have a malformation of the lymph node or a branchial cyst.

Thankfully, results of the MRI showed no growths or disturbances. It did reveal however, that both of his lymph nodes were very swollen.

Today, we had an appointment with Nick's ENT to follow-up on this unusual issue.

Dr. Nuss took a look at Nick's MRI and was astounded by what he saw.

 This is an MRI image of the back of Nick's neck. The large white masses on either side of his neck are his swollen glands. They look like sausages with long tails. The long tails are a chain of glands in the neck region that are also swollen.

Dr Nuss agreed that this is an unusual amount of swelling, particularly since his infection had resolved.

He explained there was no malformation or cyst development.

He examined Nicholas and found his glands were still somewhat large but within the guidelines for normal range.

He admitted he has no idea why this is happening.

His thoughts:

He suspects Nick body has a weakened response to fighting infection.

This is Nick's response to certain infections, bacterial or viral. He suggested that if it becomes painful to him that we should treat it with antibiotics.

I suggested he inform our pediatrician about his recommendation for antibiotic treatment since she is not always willing to prescribe them.

He asked that I bring Nicholas in for a visit if he experiences this swelling again.

He asked if other patients with PWS experience this response? This question seemed funny to me since I thought that was what he was supposed to tell me?

 What are my thoughts?

I am frustrated that none of our physicians have an answer. These are Harvard-educated physicians. I guess I expected more out of them, or at least a healthy curiosity to do a little more digging?

I am anxious to speak with our Neurologist. He has explained to me, several times, that the hypothalamus controls the Autonomic Nervous System (or ANS). He believes that many of Nick's mystery issues are associated with the failure of this system.

One of the results of a dysfunctional ANS is Chronic Fatigue Syndrome (CFS). Ironically, one of the classic symptoms of CFS is chronic swollen glands. Other issues associated with Chronic Fatigue include: sleep disturbances, diminished pain sensation, mental exhaustion, poor circulation, balance issues....all symptoms synonymous with PWS as well.

An interesting article on CFS:

I was also interested in reading this article that discusses the effects of an over-active hypothalamus which controls the ANS and as you know is the part of the brain that is effected in patients diagnosed with PWS. Again symptoms include, muscle pain, weakness, fatigue, headaches, swollen glands, poor concentration and memory issues.


Well, I guess this will be yet another lengthy discussion I will have with our Neurologist.

I am not confident we will uncover a definitive explanation.


Elizabeth said...

What a puzzle your boy is -- and how exhausting it must be for you to puzzle these things out. I admire you for doing so -- I admit to sort of, kind of, giving up trying to figure out the whats and the whys of Sophie's refractory seizures. I know exactly what it feels like when you realize that your questions are the doctors' questions as well. It's at once terrifying and affirming that you know your child best.

Joy Capps said...

OH wow! Did he complain about it at all? When my daughter (no PWS) was about 7-8 she would get these huge swollen nodules on her neck and it freaked me out. I could tell by her neck if she was about to get sick but now at 11 I almost forgot about it.

My son (pws) for the first 6 years was constantly sick hospitalized many times with bronchiolitis. At 13 now he is never sick enough to even need medicine. I haven't heard of what you described being typical with PWS...maybe he will outgrow it? I hope he is feeling better soon!

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