Blog All About It Challenge – Post #2 – Art

This post was supposed to happen in April, but as with most things in my life these days…I’m behind.  The prompt for April was “Art”.

I wouldn’t consider myself an artist, but I do consider myself, artsy and creative.  I love everything having to do with the fiber arts.  I knit, spin, felt, dye…and hoard yarn.

Today was the Maryland Sheep and Wool Festival.  I love attending the festival every year.  I her reinsipred, see old friends, spend an entire day walking, talking and feeling fiber…but most of all just taking it all in.  There are so many creative people out there, all artists…no matter what medium they pick to display their creativity.

Blog All About It Challenge – Post #1 – Favorite Scent

I have really missed blogging.  It’s something that I do for myself, to help clear my head.  Put memories in to print and just wind down for the day.  I started blogging when I lived overseas.  It was a way for me to keep in touch with friends and family back in the states and to share a little piece of my day to day journey.  When we moved back to the US and adopted our son life just seemed to take over.  Now I’m trying to get back a little piece of my former self.  I decided join this blogging challenge to see if it helps to spark my writing fire.  Here goes:

My favorite scent?  I think that depends on where I am and my mood.  My favorite fragrance is Amazing Grace by Philosophy.  It’s all I wear, and all I have worn for years.  It’s clean, freshing and subtle.  No matter where I go, when I’m wearing this fragrance I always hear…”you smell so good”.  I love it.

I love flowers and love a greenhouse or nursery.  I love the earthy smell of just being outdoors working in the garden, trimming plants or pulling weeds.  My grandmother owned a greenhouse and had a true green thumb.  Summer vacations at her house were something special.  The smell of being outside in the fresh air reminds me of her.  I especially love going outside to pull weeds or tend to my garden during a gentle rain.  The weeds come out easily and the ground is so much easier to work with.

My grandmother had a dog named Charlie Brown when I was a child.  Charlie Brown was a tan cocker spaniel.  He loved to roam around outside and explore everything.  Charlie would often come home with burrs or scratches and he was always dirty.  The thing I remember most about Charlie Brown is his smell.  That dog was always running in to a skunk.  Boy did he stink.  Today when I smell a skunk it takes me back to my childhood, I stop take a deep breath and slow down.  Life was so much simpler then, the only responsibility I had was being a kid and coming home before the streetlights came on.

First Things First

The process of doing what’s right for a child shouldn’t be so hard.  When I chose not to medicate my three year old for ADHD never did I realize just how much I would have to fight to defend my decision in a world of providers who call themselves medical professionals.  As a medical professional myself, I get it.  We follow the evidence until the evidence tells us otherwise.  It always takes the insurance companies a long time to catch up.  Too long.  If the insurance company won’t pay medical professionals can’t make money and medical professionals have big houses and fancy cars and a ton of debt from medical school that takes money to pay for.  I get it.  What I don’t get is throwing medication at a three year old child.  Medication that will decrease appetite, impact nutrition and cause a laundry list of side effects that will likely require other medication.  I don’t get starting at A before moving to T and I certainly don’t get why a provider would try to make me as a mother feel guilty for making what I believe is the best decision for my child.

What I do get is that the pharmaceutical industry is controlling the medical field and our society is becoming a bunch of medicated, socially awkward zombies and we are all doomed if we don’t start standing up for ourselves and our kids and taking a more active role in advocating for our health.

When my son was diagnosed with ADHD I was relieved.  Finally, we had an answer to explain these behaviors we had been experiencing.  Since we had a diagnosis that meant that there would be a doctor that we would work with for treatment.  What I didn’t realize is just how broad the diagnosis of ADHD is and that there really isn’t one treatment that works for every individual.  What I have learned is that you will spend a lot of time in what resembles a three ring circus trying to sort this all out and literally waste hundreds of hours spinning wheels and getting no where.

You have doctor’s to manage and you have school to manage and you likely have a job of your own and probably other family members to manage…not to mention finding five minutes to yourself in the day to do anything, including using the bathroom without interruption (will post about that later).

The past two months have been a whirl wind of doctor’s appointments and evaluations.  We’ve had speech therapy, occupational therapy and vision therapy.  Of course we started all of this with the recommendation initially of the Primary Care Provider for us to be seen by the Pediatric Neurodevelopment clinic at Kennedy Krieger.  Kennedy Krieger recommended Behavioral Health (BH) outpatient visits and Occupational Therapy in the school to evaluate my son.  We did the BH visits for a few appointments – they were 1.5 hours from home and I wasn’t seeing any improvement.   The suggestions I was receiving were things I was already doing on my own.  We stopped going.  The school OT “informally” evaluated my son and said their was nothing “concerning” to her in the Pre-K classroom setting.  I continued to go for follow up with the Neurodevelopment clinic.  At the follow up visit I told them about the informal evaluation by OT in the school and “no concern” and they accepted that.  Again, medication was recommended – again I declined.  They recommended a Speech Therapy evaluation.  I got on the waiting list and waited.  We had already had a speech therapy evaluation and our son was receiving services at that time, but they wanted “their” own Speech Therapist to do the evaluation.  I took my son for a three hour appointment after a 4 month wait and heard what we already knew – there is a Speech delay.

During my wait I continued educate myself and tried alternatives to medication.  I made diet changes, I added vitamins.  I changed bedtime, we started swimming lessons.  I joined a support group.  In the support group I started seeing a common theme…  Occupational Therapy (OT) evaluation finding of Primitive Reflex Retention.  100% treatable with OT.  Retention of Primitive Reflexes leads to behaviors which mimic symptoms of ADHD and often to misdiagnosis and mistreatment.  I found an Occupational Therapist who specialized in pediatrics and had my son evaluated.  I was surprised and relieved and angered to find that he still 4 of his primitive reflexes.  These reflexes did not integrate and we the source of many of the problems we are experiencing.

There was also reference in the group to Vision Therapy (VT).  In the OT eval there was mention of ocular motor dysfunction.  I joined another group…found a Vision Therapist and paid for an evaluation.  This evaluation confirmed the finding of the retained reflexes and found that because of this my son was having trouble fixating and tracking which would lead to problems reading and learning if not corrected.

I called the PCP to request referrals for OT and VT, I was told that the doctor would do the OT but they weren’t sure he would do the VT because he “didn’t believe in it”.  My response was as follows, “You tell him that I did what he asked and took my son to Kennedy Krieger.  I followed their recommendation and had and OT eval.  OT noted a problem with Vision so I took him to another professional who recommends VT.  So while he may not believe in VT, I don’t believe in medicating a child for a diagnosis they may not have.”  I faxed the evaluation reports for him to review and later that day I received a call that I could pick up my referrals for OT and VT.

Mom for the win.



Float Spa Take Me Away

To say that this year has been challenging would be an understatement.  This year has tested every ounce of patience I have and truly been one of self realization.  With a husband battling PTSD and a child with what we thought at the beginning of the year was ADHD let’s just say there hasn’t been a lot of down time.

Husband is finally getting help and working on himself.  He’s lost weight, has more energy and his attitude has improved to his baseline of grumpy.

Child (4.5 year old boy) is a constant work in progress (as any child is).  We started the year on the ADHD train but we’ve now changed trains and are working with something that I have no idea how to handle – (but I’m learning) – Primitive Reflex Retention, Sensory Processing Disorder and some Ocular Motor Dysfunction.

These diagnoses are a relief and at the same time a huge source of anxiety for me.  I’m relieved because I chose not to medicate my child for ADHD and try to treat him naturally first.  I’m relieved that these diagnoses are 100% treatable and that he actually enjoys the treatment.  I’m anxious because in addition to everything else I have to do in my day I have to figure out how to get him to all this therapy in addition to school and myself to work, make a home cooked meal (shout out to Terra’s Kitchen) and at some point find time to sleep (and for the Bachelor and General Hospital).

The services that he needs aren’t available in the county that we live in so I have to drive about an hour to these appointments and back.  In searching for services I came across something called Float Therapy,  I’m intrigued, not for him, for myself.  These Float Spas offer a sensory deprivation chamber where you float in about 18 inches of water that is saturated with magnesium salts leading your body to float without any effort.  The chamber is dark and you float in silence for 60 to 90 minutes…your choice.  I can’t wait to try it.  Kind of like a bath of silence.

So Much More

Day to day I struggle with being called “Dietary” by various members of the healthcare team.  I spend a lot of time an energy correcting this when it happens…”I’m sorry, do you mean Food Service or Clinical Nutrition?”  People don’t realize how hard we work to become Registered Dietitians.  Years ago Registered Dietitians did spend a lot of time…most of their time in the Food Service department.  Over the years the practice has advanced and Clinical Nutrition has really come a long way.  Our clinical expertise is being acknowledged by the interdisciplinary team and we are FINALLY becoming recognized as experts in our field.  We use stethoscopes, we perform physical examinations, we conduct a detailed interview with patients and family members and our assessments form the foundation for the diagnosis of malnutrition.  Did you know that 1 in 3 patients is admitted to the hospital already malnourished?  I saw 8 patients today and 2 of them met the criteria for malnutrition.  One was likely deficient in B vitamins based on the clinical presentation.

As a dietitian I get excited about all sorts of strange things…deficiency is one of them. Really looking at the patient from head to toe is my job.  It isn’t all about telling someone what to eat or telling them they need to lose weight (most people already know they are overweight you know), it’s about looking at the person, listening to their story and putting the puzzle together.

This patient had angular cheilitis (red, irritated cracks at the side of the mouth), lips were a deep pink reddish color), poor dentition (loose, cracked and broken teeth, many cavities), the patient gave the description of “teeth going bad quickly”.  It was reported that the patient had been taking iron supplements in the past but had run out recently. The patient had lost 6% of body weight in the past 2 months and had mild to moderate fat wasting on physical exam.  I felt there was a high likelihood that there was some nutrient deficiency.  It wasn’t until I was typing my note and entering the past medical history that it hit me – B6.  This patient had a history of seizure disorder and had been on long term Keppra.

I placed a call to the MD and discussed my findings.  I recommended that the patient be worked up for B vitamin deficiency.  The provider agreed.  THIS is what I went to school for, THIS is the reason I attend conferences and continue my education.  THIS is reason that I correct people when the call me dietary.  I am so much more, I AM a Clinical Dietitian.

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