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.

Saturday, November 10, 2012

Breathing Easy

We finally received a response last night from Nick's ENT.

No cyst or solid lesions seen in the neck.


I am happy beyond words.

Me.....doing the happy dance
The MRI did reveal that both of his lymph nodes were enlarged. But there was nothing different about the left one.

We are to meet with our ENT in 4-6 weeks for a follow-up.

So what is causing the problem?

I am in discussions with our pediatrician to investigate this further.

A potential issue may be that Nicholas, like other children diagnosed with PWS, has difficulty fighting infection. These children present with low cortisol levels during times of illness. It may be that we need to treat Nicholas with corticosteroids (along with antibiotics) during these more intense infections? Cortisol is a hormone excreted by the adrenal glands and helps the body to fight swelling and infection. It is controlled in part by the hypothalamus. So, it may not be surprising that this response is inhibited in a child with PWS. But more discussions are necessary with Nick's medical team to confirm this theory. Ahh, the joys associated with raising a medically complex child!

For right now however, I am just going to celebrate this wonderful news!

Thank you all for your prayers and well wishes. They mean so much to all of  us!

And yes, I am breathing once again.


The Henrys said...

Woo Hoo!!!! What a relief! I'm so very happy for you, Nicholas, and your whole family!!

Elizabeth said...

Wonderful. I am relieved and continue to send you good wishes and thoughts of strength and courage -- onward!

CarrieT said...

Wonderful news! Praise the Lord, especially after your ordeal to get the MRI. Will pray for wisdom in how to treat this.

Carrie T.

Over Yonder said...

Up until about 6-7 our son was always sick. The kind of sick that ended up in the hospital. He had his tonsils and adenoids removed and has only needed an antibiotic a few few times in the last 6 years. I'm glad they did not find a big problem with your little man!

Lisa said...

Yes, we had Nick's tonsils and adenoids removed when he was 2 years-old and noticed the same thing. He has had just a few bad bacterial infections that have seemed to overwhelm his system, despite taking the big guns antibiotics. This was one of them.

Giulia said...

Let make a happy dance with Calimero :D
(a quite famous anime character in Europe. Well, Calimero is an Italian character, not French. But even in France, it's quite famous)

Lisa said...

Thank you all for your support. It was so very helpful to all of us!

Lisa said...

I had never heard of Calimero. Nicholas and I checked him out on Youtube...very cute! Nicholas loved him. Thank you.

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