Test after test soon leads to torture

Posted: August 27, 2011 in Epilepsy
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This is a follow-up to my post called Our Experience With the Short-Term EEG for Diagnosis of Epilepsy.   Read on if you want to know what life is like when your child is first diagnosed with epilepsy.  In my previous post I described my son’s short-term video EEGs and some of the frustrations we faced.  I also discussed the requirement for perseverance and to trust your instincts.

As I have said, there was a lot of debate about what these events were that my son was having.  My son’s videos of his events were looked at from doctors all over the country.  They were also reviewed at a symposium for practitioners who specialized in movements disorders.  The reviews ended inconclusive.

We had seven or eight long-term  video EEGs at two different Children’s Hospitals and at the Cleveland Clinic.  You may wonder, why so many.  Well my son’s epilepsy was not typical and it appeared there were multiple kinds of seizures going on.  The majority of his seizures started with facial oriented seizures.  They included odd eye blinks, head jerks and eventually body jerks.  One of the neurologists referred to this string of seizures as the Jacksonian spread.  Jacksonian seizures are movements that start in one muscle group and spread systematically to adjacent groups, reflecting the march of epileptic activity through the motor cortex.  In my son’s case the seizure would affect the muscles by his eyes, the side of his mouth and onward.

As a part of the diagnosis process they ran numerous blood tests.  They were trying to see if there was some genetic issue or other neurological disorder.  Eventually it took all my strength to hold my son down so that they could take the blood tests.  As he sat on my lap, I wrapped my legs around his legs and then held his arms as the technician took his blood.  He hated it.  I hated it.  To this day he is terrified to give blood tests.  There was a time in the hospital when they were taking some blood and something went wrong and all of a sudden blood was squirting everywhere.  It totally freaked him out.  It was an accident but, who could blame him from being frightened.

One of the blood tests that they took was checking for metals in his system.  They did this blood test many different times and each time the results came back with the observation that there were unidentified “inclusions” in his blood cells.  I was a little frustrated because something was not right but the doctors did not know what the inclusions were.  In the end they kept taking the test and switching labs until they got the results they wanted.  To this day I don’t know if this was evidence of something that was going on with my son.

During this search for a diagnosis, my son also saw a couple of different ophthalmologists.  When my son has a seizure that affects his eyes and face he complains that it hurts, which is why they sent us to ophthalmologists.   All of the tests with the ophthalmologist did not turn up anything that explained the seizures or the pain.  They did diagnose him with a severe astigmatism.  So he wore glasses from age 3 1/2 until he was 7.  At age 7 the ophthalmologist said my son’s eyesight was near normal and he did not need to wear glasses anymore.  I really don’t understand how you can go from a “severe” astigmatism  to normal within three to four years.  Later still when he was ten, an ophthalmologist discovered something unusual at the back of one of his eyes.  In the end they concluded that it was scar tissue.  Still, I don’t know if this has anything to do with what was going on with my son’s eyes.

We had done so many tests that I could not bear take my son to the doctors.  One of the tests that they did to test for neuromuscular diseases was an intramuscular Electromyography (EMG).  An EMG is a is a technique for evaluating and recording the electrical activity produced by skeletal muscles.  It evaluates the potential generated by muscle cells when these cells are electrically or neurologically activated. To perform intramuscular EMG, a needle electrode or a needle containing two fine-wire electrodes is inserted through the skin into the muscle tissue.  The needle was long, really long.  Like three inches long.  With no anesthesia or pain reliever they inserted this needle into the calve of my son’s leg.  He screamed in pain when they did it.  The technician encouraged him to hang in there and told him it would be over soon.  I held onto him tightly because I didn’t want him to go through this again.

It was torture.  It broke my heart to see him go through this pain and hysteria.  It was clear he didn’t understand why they were hurting him, and he begged me to help him.  He was only four at the time.  The memory of this is vivid in my mind.  It took everything I could to not break down and cry.  In fact, I did cry.  I knew that I had to remain strong for him and if I started crying in front of him it would only make things worse for him.  I really don’t know how this happened, but when I cried the tears only came from one eye, the eye that was away from him that he could not see.  In the end we got through the test which turned out to be normal.

At one time we thought perhaps the seizures were evidence of high or low blood glucose.  My son’s seizures started every single morning within twenty minutes after waking up.  There was a theory that this may be an indication of his blood glucose being off.  So, for five days we woke up and before we ate I took him to our pediatrician and they would test his blood glucose.  I didn’t have the heart to do it myself.  In the end it turned out to be normal.  Oddly, down the road my son’s blood glucose was going to be an important event in our lives.

Over three years my son had three MRI’s.  For the first MRI, they gave him a rectal medication that knocked him out.  Once again I had to hold him down.  The doctor and nurse assured me that he would not remember the administration of the drug or the MRI.  In the end they were wrong.  A short time after these tests, I took my son to a psychologist because he was beginning to show signs of being traumatized.

A traumatic event involves a single experience, or an enduring or repeating event or events, that completely overwhelm the individual’s ability to cope or integrate the ideas and emotions involved with that experience. The sense of being overwhelmed can be delayed by weeks, years or even decades, as the person struggles to cope with the immediate circumstances. (Wikipedia)

At the time I had no idea what a huge effect all of these tests had on my son.  Initially, he exhibited wild, careless behavior.  It got to the point I had to constantly hold his hand because he would bolt off, unaware of any danger around him.  On several occasions I caught him just in time when he was headed toward a busy roadway.  He started showing fits of anger.  Anything could set him off.  There were times he was deeply sad.  You could see it in his face and his eyes.  He also had a real hard time falling asleep and had numerous nightmares when he finally did sleep.

The psychologist, in a playful environment, worked with my son to re-enact what was upsetting him.  He investigated what my son thought of  doctors.  On our third visit this doctor had created a crude replica of the electrodes of an EEG.  Then he asked my son to show him what the doctors had done to him by using a doll.  I was shocked about the details that my son remembered.  At one point he poked the doll on the bottom.  It was clear to me that he remembered them giving him the rectal Valium.  The doctors were wrong.  He remembered everything they did to him.  To him he was being tortured.  He didn’t understand what they were doing to him and why.  He had no understanding about his epilepsy.  He didn’t even have the language skills to talk about what was happening to him.  In years to come, I started to see the impact of this trauma.

Prior to my son’s first seizure I was very sensitive about using drugs.  I had taken the position that drugs could do harm, especially since there are few long-term tests for medications.  Upon the arrival of epilepsy, I had to let down my guard.  I could not fix my son, no matter what I did.  I needed to trust the doctors, even though it was hard.  It wasn’t easy.  It still isn’t easy.  But I was desperate to find out what was wrong with my son, and then hopefully find a cure.

The neurologists were running test after test as a means of eliminating things from the possible diagnosis.  My son was a guinea pig enduring test after test.  At one point we decided to try medication that is used for tics.  They put my son on  clonidine, which is a medication usually used to control blood pressure, but can also be used to control tics disorders.  After trying it for several months we also tried liquid Valium (diazepam), which also did not give him any relief from the eye movements.

Over time the neurologist prescribed many types of antiepileptic medications.  In four years my son had been on:  Clonidine, Valium, Tegretol, Depakote, Lamictal, Keppra, Topomax, and Clorazepate.  Some of the side affects of these drugs include (Drugs.com):

  • Clonidine:  Constipation; dizziness; drowsiness; dry mouth; headache; nausea; tiredness; trouble sleeping.
  • Valium:  Drowsiness; incoordination; muscle weakness; tiredness.
  •  Tegretol:  GI upset, weight gain, blurred vision, low blood counts, low blood sodium (hyponatremia). Carbamazepine causes a rash rate of a few percent, sometimes even the dangerous rash called Stevens-Johnson syndrome
  • Depakote:  weight gain, tremor, hair loss, GI upset, blood count decreases, hepatic or pancreatic injury, bone weakness over time (osteoporosis)
  • Lamictal:  dizziness, double vision, headaches, coordination problems, blurred vision,  nausea, vomiting
  • Keppra:   dizziness, fatigue, insomnia, but the more troublesome problem can be irritability and mood changes
  • Topomax:   thinking and memory problems, renal stone,  glaucoma (increased eye pressure) and weight loss
  • Clorazepate:  Blurred vision; clumsiness; confusion; dizziness; drowsiness; dry mouth; headache; lightheadedness; nervousness; stomach upset; unsteadiness; unusual weakness.

The routines for going on a new medication and coming off a medication is exasperating.  Each drug requires that you slowly bring up the dosage over time.  In fact one of the drugs had a rash side effect which could lead to death if administered too fast.  At the time many of these drugs had not been tested for children, nor were approved for children.  In addition, most of these drugs did not have a liquid form.  We then had to cut and crush the tablets and put them into something that you could get your child to eat.  One time I asked the pharmacist what he would recommend that I use to mix the drug with, and he would not recommend anything, because the drug was not meant for kids.  So I was on my own, and we used strawberry pancake syrup.  Later on yogurt worked really well.

So for every drug change it meant weeks to slowly decrease his current medication and then slowly increase the dosage for the new medication.  It was tedious.  In the end, most of it did not work.  At one point one of the neurologists thought maybe the seizures were being precipitated by the medications themselves.  So we took my son off all medications for about nine months.  No change.  The seizures did not decrease, nor did they increase.

For over three years my son had every test the neurologist could think of.  We were no closer to a diagnosis than we were the first day he had a seizure.  More than $200,000  in medical bills and we still did not have any answers, and my son was still having seizures.

To Be Continued . . .

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