Casey Fero - Diary Extracts by Pat Fero

Casey Ryan Fero died in his sleep in the early morning hours of July 4^th, 2005. He was 23 years old. I explained his Chronic Fatigue Syndrome history to the coroner, but she said it “wouldn’t make any difference.” She collected a bag of supplements and assumed that Casey’s death was from steroid use.  Casey did not use steroids. Samples sent to a toxicology lab specializing in substance and steroid abuse, showed all negative results.

In September, a Madison forensic pathologist determined that Casey had Viral Myocarditis, that is, viral infection of the heart muscle. His heart tissue showed fibrosis indicating past infection.

I want people to know that life was good for Casey when he died.  He was proud of his recently awarded Associate degree. So typically Casey, he had no idea if he graduated, was afraid that he did not and only called the school counselor because we insisted. Yes, he graduated with one credit to spare! In addition, the last semester, he made the Dean’s list. Casey burst out of the chair and in a joy filled rant; he talked about getting his Bachelors degree and maybe even a Masters.  (He planned to major in history, his great love and sports science, a second love.) Then he said, “Let’s order Chinese,” A third love…

Casey was diagnosed with CFS at age 9 and again at age 15. It caused him to feel weak, unable to think, and exhausted. He was plagued with headaches, stomach problems, and had major sleep disorder among a list of daily symptoms.  Casey persevered and did not want people to know his condition. Early on, he knew that medical help was unavailable and furthermore, he was met with disbelief in the school and in the doctor’s office. 

Casey’s diary – mom’s journal of Casey’s day is a testament to loss of childhood.

As parents, we created every opportunity we could for Casey. We loved him unconditionally and worked for years at helping him maintain self esteem though this illness. However, when a child’s basic needs are not met ,parents are powerless.    

CFS is a brutal illness for children. 

Casey was a remarkable child and a wonderful young man.

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For Casey Ryan Fero

Excerpts from written diary, October 1991, 4^th grade, until April 1996, 9^th grade.  That would be 1,080 school days of a possible 2,190 days within 6 years.     Original information from 3^rd grade recorded on school calendar as a rating scale. Because MD’s did not believe Casey, I wanted him to know that I believed him and that what he said was important.

1991 – 4^th grade

October

Sunday 14  - Initial complaints:  stomach aches, eyes hurt, dizzy. Looked pale.
 

December

Monday 9 - Saw a pediatrician. She said there was nothing on exam. She asked Casey how things were going at home. Casey was quiet. She told him he would have to return after Christmas to talk about it if he did not feel better. I was furious at the implied threat, but did not tell Casey this.  A few days later, and out of context, Casey he said to me, “She did not have the right to tell me what to think and how to feel.” I told him he was right.

January 8
Went to UW PEDS diagnostic clinic. MD notes his concern,” He (Casey) may be concerned about his mother’s wellbeing or may be modeling her behavior for some reason.” Counseling recommended as MD fears emotional components of fatigue will not be addresses as there is “high risk for an intense search for organicity on the part of the family.”

 

March 26, Casey is 10!

 

1992 – 5^th grade
Only missed 12 days of school first semester.

February 1- 3 & 11   
PM vomiting. Home with flu.   Pasty, depressed looking, tired. Onset of chicken pox on February 11..  Out school for 2 weeks. Case was severe as he had pox covering his face, scalp, neck, back, stomach  and down his throat.

(Missed 35 days of school to this point)

 

March 1993
Casey was home 1/2 days until the end of the semester, as he did not regain stamina after the flu & chicken pox in February. He was sensitive to sounds. He would watch TV with the sound off. He could not walk through the grocery story without feeling worse.  He said that the smells made him feel sick. In the toy store, he wanted to leave because he felt too weak to walk. I contacted an east coast CFS specialist, as I needed papers from an MD for the school.  I feared that UW Madison Peds people would cause more harm to Casey’s self esteem.

March 26, Casey is 11!

1993 – 6^th grade 

December 8
Worked on homework last night, 6:15 – 9:15 PM.  Very tired throughout.  This morning, looks terrible, yawning, white, eyes really tired.  Reviewed spelling words, he threw stuff across the room.  I see anxiety for the first time.  He stayed home to talk until 8:30 AM.  He says he’s getting a D in math and doesn’t know why.  Can’t get spelling, did poorly on test last week too.  Didn’t turn in editorial, is taking retake on science test.  He seems frustrated, like it’s all raining down on his head.  He was absent 3 days last week.  I called for homework Tuesday evening and Friday.  Math sheets came home. What about the rest?  If this continues, his illness will be compounded with anxiety and depression.  What do we do?  Called neuropsychologist and MD.

In addition to this, Casey’s belief is that he is not sick.  It’s not the same, he says.  The kid is almost 12. Who would want to admit for the third year in a row that I am going to feel awful for months because I have illness?

March 26, Casey is 12!

1994  - 7th grade 

October 17
Each night I see Casey come home very tired.  It doesn’t look good to me.  He says he’s tired, is short, and does not verbalize.  I don’t ask much and have to bite my lip not to.  Casey’s face looks pasty, his eyes hooded.  I’m hoping once football is over he’ll get more rest.  I think he’s pushing himself, accepting the fatigue as part of being normal.  It’s stimulating exercise and I’m not going to stop him.  He’s getting up in the morning.  I hope I’m wrong.  He’s growing so.  This morning for the first time I came downstairs to see that he was watching TV with the sound turned off.  Bad sign.  Brings back old times.

March 26, Casey 13!

May 14
Mother’s day and I haven’t been keeping good track.  The school nurse called a week ago on a Monday or Tuesday to tell me to come to get Casey.  He ran the mile but told me in the morning and the night before he didn’t feel good.  I gave him a note but he ran anyway, made attainment and was proud of himself.  He was so sick, coughing, and dizzy.  MD said no sinus infection.  I thought he might not have cleared from a cold 3-4 weeks ago.  Bruce took Casey that time; no antibiotic was given either time.

What I’ve seen the last few months is what I thought I’d see when he started symptoms in January.  Most prominent is the cognitive fog.  Disorganized, can’t remember to turn in stuff, grades falling, handwriting deteriorating, spelling deteriorating, but teachers have not been responsive to his needs.  He’s developing an attitude – defensive posture.  Counselor says he’s withdrawing and demonstrating fringe behaviors.  We have been participating in homework 2-3 hours per night.  No one at school is monitoring him in any way so we organize, help, explain, and read…. yuck.

1995 8th grade

November 21

In AM, very tired and irritable.  Came home from school and fell asleep downstairs.  I tried to wake him up at 4:45 PM.  Bruce went down at 5 PM.  He’s gone, unshakable.  Another red alert.  This one’s a little scary because it is so early in the year and he’s so pasty.  Yet, I look back through this journal and if I had a quarter for every time I wrote the word tired, I’d buy myself a nice present.  What’s different about this year?  Something.  I’m feeling well, very little fatigue.  Maybe he seems worse to me because I look better and feel better than I used to, thus in comparison he’s worse.  Nah – this boy is pushing himself.  Tomorrow is the Wednesday before Thanksgiving, then he gets a break.  Pray.

March 26, Casey is 14!

1996 - 9^th grade

September 5

School did not start well.  He missed Aug. 29 and Sept. 5, and from the beginning, I thought he seemed very tired.  Cognitive functioning poor.  He quit football this week saying practice was just getting to be too much, “making me tired.”  He had several days where he “couldn’t find his classes.”  Today, the school nurse called for me to come get him.  Temperature 100.7.  He says he’s tired but “fine.”

February 19 – 20
Bad mornings as they all have been.  Took Casey to school. He was so upset. Brought him back to talk.  He talked about sleep – all dreams, still has sore throat and goo running down the back of his throat.  I talked to the counselor who  says it’s not a motivational or behavioral problem.  His demeanor is different now.  He tells me he feels angry and depressed, but got tired first.  Took him to the doctor on Feb. 20. MD says it looks like mononucleosis, swollen glands, etc.  Negative on spot test.  No surprise there.  Started amoxicillin for upper respiratory infection.

March 3
No better but he has been in school.  We had an hour discussion last night about this.  He wanted to go to a hockey game during school hours.  We said no because he’s been gone so much.  Then we went on to a discussion about reality.  I read him the 9th grade sick day diary.  He said I exaggerate and he was mad as he pressed on about it being normal to miss school this much, normal to have morning problems.  He says he sleeps because he is bored.

His solution was if we stop helping him, he’d take responsibility and fix everything.  He says that he has been sick but it’s not what we think it is.  As Bruce pointed out missing 22 days of school is not normal, nor is his morning behavior, Casey began to get agitated. We decided that when he asks for help, we would help him as always, but otherwise not. Casey was angry – oozing beneath the surface. Bruce thinks that he is in denial.  

So, this morning, Casey got up earlier, fixed his own breakfast, and then could not find his socks until I told him to look in the dryer. He was not together when I went to wait in the van. Last night we reminded him to look for his book bag. I was in the van with the neighbor kids until 8 Am and I left so they would get to school on time.

When I returned, Casey had changed his clothes again and came out, but with no book bag because he could not find it. So, he has no materials for today. He was 15 minutes late to school. Also, I reminded him last night to arrange a ride home after school, as I would be gone. But it all snowballed on him and that was not done, so he will have to figure it out.

My concern is the anger underneath the surface. I have no idea what he will do as the day goes on. – No pen, paper, books and a lot of stress. He did not ask for my help other than to dry his hair. Poor dear Casey - -oh – After last nights discussion, he went downstairs and lifted weights for an hour. Anger.

 

March 11, 12, 13,18, 20, 21

Home sick. Went to school at 10 Am on the 17th and 10:30 – 1:30 on the 19th. Casey saw a UW adolescent Med MD on the 18^th who confirmed the CFS diagnosis and offered sleep meds after a sleep study on the 19th.   On the 21st, a Friday, Casey was ready to go at 10 Am, and then disintegrated. I could see the anger building, then crying. We talked until 11:30 Am. A lot is coming out about not sleeping, and being angry when he wakes up. “Inside mad,” he says. Casey realizes that it is not his hair, clothes etc, things he attaches to it. It’s just an exploding at nothing kind of thing.  Casey has incompletes for 3rd quarter….

 

March 26, Casey is 15 

 

Mom’s journal stops here.