Saturday, January 7, 2012

In the Valley of Elah

Prednisone. A steroid. A tiny black widow of a pill that heals first and harms later.

A drug so dangerous long term that son's Neurologist refuses to write a consecutive prescription. The good doctor knows that were my boy to remain on Prednisone indefinitely he would develop Adrenal disease, Osteoporosis, and Diabetes. It is a matter of when, not if.

This tiny white pill is the last of it, taken today. At high doses son loses all stereopathy: arm flapping, sound making, repetitive behaviors - gone. Speech explodes and he thrives in mainstream classroom settings. Most importantly, he is freed from the excruciating brain and gut pain that plagues his young life.

His neurologist will re-prescribe, but only after son's body has had a break. Trouble is a certain percentage of children with epilepsy do not respond again to steroids after going off them. The fires of inflammation return with a vengeance, triggering seizures that rob these children of speech and continence and the overall ability to function in public - this time with no recourse. And yet, some children do just fine with subsequent doses. You know which category I hope son falls into, but there is no way of knowing beforehand. I may be used to risk by now but it doesn't exactly fit like a comfy old shoe. It never will.

This week son bumps down to his lowest dose yet: 2.5 mg three days this week, then it is over. The regressions have started, it seems, or is this just a bad day? I don't know anymore. He tantrums for an hour straight.

"Come rock with mommy", I say, leading him to the same rocker I nursed him to sleep in as a healthy infant.

"Cat's Cradle. Cat's Cradle", he says, wanting me to sing that song to him. He is trying to self-sooth. Son might be the only person in the world who finds the lyrics of that song humorous.

"..........The cat's in the cradle and the silver spoon, little boy blue and the man on the moon. When you coming home son, I don't know when...". I choke on tears, unable to finish. Damn it! You're not supposed to do that in front of the child! Can't you even give him the one thing he needs right now?

He angrily rocks us so hard that we almost tip over backward. I steady us, holding his gaze, "It's okay honey, it's okay." He softens.

"Get a tissue", says my barely verbal Autistic child as he wipes the tears from my cheek with his sleeve.

"When you coming home son I don't know when, but we'll be together then. You know we'll have a good time then...........", I finish. He smiles.

Mommy vs. Goliath

I am a human echo chamber, bombarded by son's past suffering. Those memories ricochet off my synapses, locking me into fight-or-fight. It is all I can do.

So we're headed into battle. Again.

In preparation I grab my gear - hour upon hour on Pub Med trying to identify gaps doctors miss. Test results have ruled out certain things, including autoimmunity. My research (and gut) tell me a Mast Cell problem might underlie son's haywire inflammatory processes. We are giving him Neuroprotek in attempt to level the enemy. It is basically a high quality flavanoid supplement, that's all. So even if this isn't ultimately a Mast Cell problem, flavanoids are super healthy anyhow. We could all use more flavanoids, you know.

And so I march into battle, armed only with my little Neuroprotek rock and a really good homeopath. I will sling these at that twin Goliath brain and GI inflammation. Will I emerge from battle, like David, with an unlikely victory? Will I wander into the sunset, healthy son on my shoulder? Or, like the older David after crucial mistakes, will I scream to the heavens, "How much longer! How much longer!"?

This is my testimony. I hope some day son is able to give you his.



 My son did regress, but not until two months after stopping Prednisone (kids typically last about ten days), so the Neuroprotek may have helped. After two months he returned to Prednisone and remained on a pulse dose for two years. Fortunately he did respond after having gone off that medication when he went back on it.

The epilepsy diagnosis just scratched the surface of his issues.

Update: 3/30/18

My son's early and middle childhood were continual bouts of his doing well and then regressing. He has always been verbal, but until the last few years speech was limited to short sentences. He was subsequently diagnosed with migraines, which was what caused much of his pain in the early years.  Migraine conditions in the functionally nonverbal are commonly missed since these individuals cannot explain what is causing them pain. Sadly, pain outbursts and self-injury from their migraines is often labeled "just behavioral" or "just the autism".

Now that his migraines and epilepsy are controlled with Cannabidiol Oil my son is happy 90% of the time. I no longer believe Autism itself has anything to do with his physical pain.

I share this for the same reason I have always shared the end results of his medical mysteries: what if information in our story holds a key for someone else? After her autistic son's aggression was labeled just behavioral, a local mom heard our story and insisted upon an EEG. Her son had undiagnosed epilepsy and behavioral problems reduced dramatically with treatment. 

We were only able to diagnose his migraines because my child was somewhat verbal and could offer clues. "Alex's head is humpty dumpty.", "My head exploded.", and "There is cake frosting in my head." The neurologist took it from there.        

"Having children is like consenting to a wound that will never heal because you never stop worrying about them."

"The role of quercetin, flavonols and flavones in modulating inflammatory cell function".Chirumbolo S.
Department of Pathology and Diagnostics, University of Verona, Strada Le Grazie 8 37135 Verona, Italy.

"Anti-inflammatory effects of dietary phenolic compounds in an in vitro model of inflamed human intestinal epithelium."
Sergent T, Piront N, Meurice J, Toussaint O, Schneider YJ.
Institut des Sciences de la Vie, Louvain-la-Neuve, Belgium.

Am J Clin Nutr. 2010 Dec;92(6):1511-21. Epub 2010 Oct 13.

"Quercetin is equally or more effective than resveratrol in attenuating tumor necrosis factor-{alpha}-mediated inflammation and insulin resistance in primary human adipocytes."
Chuang CC, Martinez K, Xie G, Kennedy A, Bumrungpert A, Overman A, Jia W, McIntosh MK.
Department of Nutrition, University of North Carolina-Greensboro, Greensboro, NC, USA.

Int J Immunopathol Pharmacol. 2009 Oct-Dec;22(4):859-65.
Autism spectrum disorders and mastocytosis.
Theoharides TC.

J Clin Psychopharmacol. 2008 Oct;28(5):479-83.
Autism, gut-blood-brain barrier, and mast cells.
Theoharides TC, Doyle R.

J Autism Dev Disord. 2011 Jan 6. [Epub ahead of print]
Brief Report: "Allergic Symptoms" in Children with Autism Spectrum Disorders. More than Meets the Eye?
Angelidou A, Alysandratos KD, Asadi S, Zhang B, Francis K, Vasiadi M, Kalogeromitros D, Theoharides TC.
Molecular Immunopharmacology and Drug Discovery Laboratory, Department of Molecular Physiology and Pharmacology, Tufts University School of Medicine, Suite M&V-208, 136 Harrison Avenue, Boston, MA, 02111, USA.

Expert Opin Pharmacother. 2009 Sep;10(13):2127-43.
"Autism: an emerging 'neuroimmune disorder' in search of therapy."
Theoharides TC, Kempuraj D, Redwood L.
Molecular Immunopharmacology and Drug Discovery Laboratory, Tufts University School of Medicine, Tufts Medical Center, Department of Pharmacology, Boston, MA 02111, USA.

References regarding specific ingredients in Neuroprotek:

Middleton E Jr, Kandaswami C, Theoharides TC. The effects of plant flavonoids on mammalian cells: implications for inflammation, heart disease, and cancer. Pharmacol Rev. 2000 Dec;52(4):673-751.

Kempuraj D, Madhappan B, Christodoulou S, Boucher W, Cao J, Papadopoulou N, Cetrulo CL, Theoharides TC. Flavonols inhibit proinflammatory mediator release, intracellular calcium ion levels and protein kinase C theta phosphorylation in human mast cells. Br J Pharmacol. 2005 Aug;145(7):934-44.Kandere-Grzybowska K, Kempuraj D, Cao J, Cetrulo CL, The
oharides TC. Regulation of IL-1-induced selective IL-6 release from human mast cells and inhibition by quercetin. Br J Pharmacol. 2006May;148(2):208-15.

Kempuraj D, Tagen M, Iliopoulou BP, Clemons A, Vasiadi M, Boucher W, House M, Wolfberg A, Theoharides TC. Luteolin inhibits myelin basic protein-induced human mast cell activation and mast cell- dependent stimulation of Jurkat T cells. Br J Pharmacol. 2008 Dec;155(7):1076-84


  1. touching post hope your son does well off the medication. Thanks for sharing on the NOBH

  2. I love when you talk about your struggles with your son...not because you have to go through it, but because it's strangely comforting. I guess because the way you describe it is exactly the way I feel about these struggles with my son. They're so difficult, so tiring, yet so beautiful, such a big part of my life. You and your son are in my prayers!

  3. 3LA - I understand exactly what you mean. Special needs parenting can feel lonely because most people we are around cannot relate, so it is comforting when we come across someone who does. I do try to convey the nuance that yes it is hard, but it is not only hard, but a glorious, wonderful gift. Thank you for reading.


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