Monday, December 1, 2014

When You Don't Know What is Wrong

Noah has been battling these strange spots which have been appearing periodically for about two months.   They look much like inflamed mosquito bites that often range in size from a pea to a quarter.  At first I thought that maybe we had a spider on the lose, so in true compulsive special needs mother style, I stripped Noah's room from top to bottom, washed his bedding, sanitized his sleep-safe mattress, cleaned the baseboards, washed his curtains, vacuumed out the heating vents... even washed his walls.  Went mad crazy cleaning in his room for six hours.  Turned up nothing.  Not even so much as a cobweb.  Nothing.  

The spots kept appearing. 

Ruling out the fact that we were now in fall months and the likelihood that these were bug bites were slim to none pushed us out the door to the doctor.   Noah was diagnosed with an ear infection and his spots were believed to be a symptom of his infection.   A course of typical ten day antibiotics cleared up his ears and his spots disappeared within a few days.   All seemed okay.  We traveled, took a break from therapy, all seemed well. 

Until the spots reappeared again.

I was trying to figure out what on earth was causing it.   Off to the doctor we went again as my assumption was that maybe we hadn't knocked out his ear infection and that it had returned.  I was rather suspicious that maybe Noah had received prescription that wasn't any good.   After Noah finished his ten day course of antibiotics it is standard for me to separate the label from the bottle and shred Noah's medical label information.  However, when I pealed Noah's label off the medication I realized that the medication had previously been issued to another child a month earlier.   I called King Soopers, where this particular prescription was filled, to be told that the other child couldn't afford the medication and it is their policy not to destroy the medication to preserve costs, and therefore it is issued to the next person, which happened to be Noah thirty days later.   They said their only legal responsibility is to block out the name only of the person it was issued to before with a black marker under HIPAA (even though i this case I could easily read the prior patient's name on the prescription.)    This didn't make me feel confident at all not knowing if the prescription Noah received was even expired prior to him receiving it. 
Prescription not originally belonging to Noah
Yet a second doctor's visit turned up a good diagnosis on his ears.   We then moved onto the diagnosis of a contact allergy.  We went over all the elements Noah has been exposed to.  No changes in food, no changes in soaps or laundry detergents, we went over where was at and what he has been doing.  Until we got to discussing his therapies.

For months his pool therapist has been experiencing skin difficulties which she tells me is from a combination of the chlorine and being in the pool all the time with children and a sensitivity to antibacterial soaps.   It's become so severe that she now wears gloves in the pool with a rubber band tied at the wrist.   Noah's spot looked like they could be classic choline rash.   And have been occurring within twenty-four hours after pool therapy. 

We are now on a thirty-day break from pool therapy and mixing two allergy drugs to assist Noah in rid of his potential contact allergy to the chlorine exposure.   Warm water therapy happens to be one of Noah's most beneficial and favorite therapies, and I'm not sure what is different about the pool all of a sudden for him, as he's been doing this now since he was about two years old, and up until now hasn't experienced any problems.  He showers immediately after therapy, yet it must be absorbing into his body too quickly.

Between the mixture of oral allergy medication and hydrocosine cream, Noah has greatly improved.   I'm still trying to determine if we're still dealing with a chlorine allergy or if this is something else.  Noah's sleep patterns have been particularly challenging lately which may or may not be an indication that something else is bothering him.  When you don't know what is wrong it puts your mind on overload as you go over any possible explanation for any of it.   Noah has been particularly irritable these last few days, which I can't tell is simply a symptom of cabin fever or something else, although he appears well otherwise.  But he's been hard to keep happy. 

But I can't help but have these feelings that I really want nothing more than a good cry because I'm so ultimately frustrated that I don't know what is ever wrong. The constant guessing game feels endless.  And makes me feel entirely helpless at times to help him. 

The kind of helpless feeling when everything you're used to has been ripped away. Like there's no more gravity, and I'm left to drift in outer space with no idea where I'm going.” Haruki Murakami


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.