TJ’s Story

Site created on March 1, 2020

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Journal entry by Gary Walk

Yesterday, didn't actually start yesterday. It started Thursday.  Let me explain.

On Thursday, I came home after 8pm from driving the bus.  School sports trip to Philadelphia for district championships.

TJ seemed "off" to me.  I couldn't put my finger on it, but the closest I could describe it is that  he seemed like he was post-seizure. TJ has had lots of seizures. Most times he bounces right back from them. His biggest seizures though keep him down for days, and he can't remember things that before the seizure.  His memory loss can range from seconds before, to in some cases, hours or even a day before.

Anyways we wrote it off as he may have had another seizure.  We all went to bed that night.

On Friday, Mom received a message from TJ's day nurse.  TJ didn't want to wake up.  She would wake him, but he would go right back to sleep. This can be typical for TJ in his post seizure mode. Especially if it was a larger one.  Seizures wear you down.  The nurse made the decision to let him get his rest and keep him home from school.

TJ did finally wake up hours later.  However, he was off balance, had slurred speech, was lethargic, and his pupils were huge. This lasted for a couple of hours. He seemed to have some energy for a couple of hours. He still had slurred speech, balance issues, and large pupils. He wanted to play. Then a couple of hours later, he was lethargic again.  Mom reached out to TJ's diagnostic pediatrician.

(I have to take a break here to address this doctor. His job is to try to look at the "big picture" to help point us in the right direction or diagnoses. If you watched the TV show "HOUSE", that is a diagnostic doctor.  Yep, it is a real job. We had to look it up too.)

So TJ's diagnostic pediatrician, Dr. Michael Fox, (No J in his name. And as he says "No relation") left mom a message that it sounds like we might want to have TJ seen at Dupont Hospital Emergency Department for an "altered mental state." 

Now normaly, I would have been home around 5pm. However, I was in Philadelphia with the swim team.   I didn't get home until almost 10pm.  Tj was sleeping and I decided I would see if he was better in the morning.

He wasn't better Satuday morning. He was still slurring his speech. He was off balance. He even walked into furniture and walls, almost like he didn't even know they were there. The decision was made to take him down to Dupont Hospital to be seen. We knew they would want to do at least an EEG.

They did a number of tests.  They measured his vitals, took blood for lots of tests, made him walk (watched him stumble), and finally did an EEG. They consulted with Neurology and Diagnostic Medicine.

TJ had a regression of his Mitochondrial Disease. 

(WAIT WHAT?)

So a couple of years ago TJ had a test done that showed his mitochondria (part of the cell that makes energy) wasn't making energy right.  He was put on a cocktail of vitamins and enzymes to help.  Later, another test seemed to indicate that his mitochondria were producing energy.  We had 2 schools of thought. Either he had a problem and the vitamins were helping, or the first test was wrong. 

Yesterday's visit proved the former. TJ has a Mitochondrial Disease.  

There are lots of different Mitochondrial Diseases. Some can be found with current genetic testing.  Some are identified with other tests, like MRIs end CT Scans.  

Right now, we know TJ doesn't have a type that could have been identified with his last genetic test 3 years ago. We also know that according to the same genetic testing, that it doesn't appear to be something passed down from mom.

We started reading about Mitochondrial Diseases last night. There are a LOT of them.  We don't know which kind TJ has, but now we are starting his journey to find answers and treatments.  

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