Sunday, September 12, 2010

Yep, Its Hazardous Waste

And, I am still 'the mother'.....


There is a monster in my child's body. Seems the Epstein-Barr Virus 'creeped' in and took over. They don't call it just MONO these days. This time around, its got a whole new identity.

It makes little difference to me that I care for one or many, as that is my role. But it absolutely breaks my heart to see her suffer with the symptoms, see her miss out on all of the exciting things she had planned and have to reorganize exciting opportunities as a new student at the University.

Since she is a faithful follower of this forum, I will not get too weepy. Yes, she is extremely ill, but  around here, never sick enough for a martyr's complex. However, lately we continue to find ourselves helpless with the illnesses in our home. Normally, you get sick, go to the doctor, get some medicine, get better.

Sunday, August 29th, Kate shipped backed to Tuscaloosa and by bedtime reported to me feeling feverish. WB and I had departed for the beach the day before so Kate, Michelle and Hunter took in the Shelby County Fair Saturday night prior. On Monday night she reported a fever of 102* and on Tuesday night, Hunter made the trek to Tuscaloosa and delivered her to the ER there. I did not find out about this until Wednesday afternoon when speaking to her on the phone. 

Even though she felt that she was doing the right thing by trying not to worry me, I was still outraged that this took place without me knowing. I have reminded all, I am still 'the mother'.

They ran tests for flu, Mono, Strep and all came back negative. Their titers test for Epstein-Barr was due to us by telephone on Friday to Kate. Of course, Friday came and went with no call and no alert to 'the mother'. A later call from 'the mother' to DCH confirmed that their records department was closed for the holiday weekend.

Up Thursday morning at 5:00 am and we were on the road north by 6:30. About Greenville, Kate called and asked that we come and get her, she felt too weak to drive home. Detouring through 2-lane country roads, I had her in the car and was back home by 3:00 pm. Chicken soup, Tylenol and juice. She missed the opportunity to see Saturday's game in the student section and on Labor Day Monday, she was still running fever at 101.7*, so to Children's Hospital we went. 

Nine hours later, she had tested negative for everything they threw at her.  Even though we left with no specific instructions for treatment, I cannot say enough about the excellent staff and their excellent care and attention to Kate. When all around us lay terminally ill children with very little chance for recovery, an abundance of crying babies, ambulance charters steadily arriving, we left with Kate in tears.  Once again, nothing found in the tests but a promise of test results by Friday.  So on Tuesday morning, she left for Tuscaloosa with fever again. That was September 6th and marked the 9th day with fever over 101*.

Kate is a dance major at the University of Alabama and takes rigorous dance classes 4 mornings a week. That counts for 6 credit hours and part of the course load to satisfy her Presidential Scholarship. That she auditioned and made it into the dance and theater department was no surprise to me, and I encouraged her to try it out even though she had decided not to continue a 15-year dance career. For the past week, she has audited classes only with notes and not danced. She wakes with a fever each morning and makes all of her other classes.

On Friday at 1:00 pm the call came from Children's Hospital, she had tested positive for Eptstein-Barr with a note to see her doctor immediately. Once again, this presents a unique situation. She is in Tuscaloosa all week and can come home on the many doctors are available? Her pediatrician since birth had just recently decided to no longer treat her ~ actually decided not to take her new insurance so we were already in search for a doctor on our side of town. She had not been sick, we had a lot going on over the summer and that was on the never ending to-do list. Out of sight, out of mind. However, 'the mother' had already completed admissions process and was ready to make that appointment with a Pediatric doctor who specializes in infectious disease. I had a feeling in my gut after our day at Children's that this was not over. The soonest appointment we could get to work around her schedule at school will be this Thursday afternoon. We will be there, this is why....

Epstein-Barr:  or Infectious mononucleosis. Infectious mononucleosis (also known in North America as mono, the kissing disease, or Pfeiffer's disease, and more commonly known as glandular fever in other English-speaking countries) is a disease seen most commonly in adolescents and young adults, characterized by fever, sore throat and fatigue. It is caused by the Epstein-Barr virus (EBV), which infects B cells (B-lymphocytes), producing a reactive lymphocytosis and the atypical T cells (T-lymphocytes). The virus is typically transmitted from asymptomatic individuals through blood or saliva (hence "the kissing disease"), or by sharing a drink with friends/family, eating utensils, being coughed on, or being in close proximity of an infected person.

And, there's more...

Epstein Barr's Disease is actually a variant of the mononucleosis (“mono”) virus, which almost everyone, up to 95% of the population, in America has been exposed to. Where the distinction between Epstein Barr's Disease and common mono is made is in that an infection of mono is typically a one-time condition, which is temporarily debilitating, treated, and is resolved. Unfortunately, in 35 to 50% of all cases of mono infection in subjects between the ages of 12 to 25 the disease never actually resolves itself. It becomes dormant and re-emerges periodically throughout the rest of the person’s life.

The typical victim of Epstein Barr's Disease is one who is a workaholic and known to burn the candle at both ends. With this type of personality, the dismissing of their symptoms as stress related and a possible depression disorder is even more frustrating. Epstein Barr's Disease absorbs every ounce of energy, and unfortunately, the type of personality usually afflicted with the disease cannot stand to lie low and wait for it to go into remission. In fact, the personality of the typical Epstein Barr's patient is usually a detriment to their own recovery, as they jump right back into their old routine as soon as humanly possible, while their immune system is still at low function, and the result is additional afflictions and complications.

Epstein Barr's Disease sufferers have a permanently impaired immune system and suddenly find themselves very susceptible to colds, flu, respiratory infections, bladder infections and a host of other “common” conditions, which, when occurring on a periodic basis and with typical level of severity as is with most people, would be manageable. Unfortunately, the hallmark of the disease is that it dramatically amplifies every illness, rendering the patient to extreme exhaustion for several days for what would be a common cold to someone with a healthy immune response.

There is no known cure or specific treatment for Epstein Barr's Disease. Treatments involve management of the symptoms and the accessory infections that accompany the disease, although many patients are finding relief and an increase in remission periods by conferring with a doctor who administers potent vitamin injections as a course of preventative treatment. Patients have reported overall improvements in how they feel day to day, as well as lower incidents of viral infections when put on a regular regimen of vitamin injections.

Kate had one bout of Mono several years ago in high school and it went on for 6-8 weeks. We know this as she was tested weekly as dance was part of her curriculum. It is a virus and is therefore treated with rest and fluids. I do remember her feeling fatigued but never remember the fever to this extent. Seems this is a reactivation of that same illness and even though they suggest that fever runs its course in about 10 days, we are 15 days and this morning the thermometer read 101.7*. Her tonsils are so swollen that I am most sure at any moment they are going to start protruding out of her ears.

Plans to tailgate with friends yesterday while she attended the game were scrapped. Instead, 'the mother' rubbed her feet with Peppermint Oil and wrapped them in warm towels on and off all day (a remedy prescribed by a facebook friend). I believe we must have forced half of her body weight in fluids down her as well. We will break the fever this morning, fill her full of vitamins and send her on her way this afternoon. 

Wonder how her suite mates would like 'the mother' hanging out in the dorm spraying Lysol and tending to their sick friend? I do know that during the first week of school heard several of the girls coughing and sneezing and one reported fever. The worst for me is sending her away again knowing that she is sick, therefore miserable and feeling helpless.

Tomorrow, after a meeting with the dance chair, she will most likely be forced to drop dance and pick up an online class to finish out the semester. There is a chance that she could pick up dance in the Spring, however that is not important. She has no intentions of making a career with dance, so perhaps this was just the test one needs to change the course on the rest of your life. And, perhaps this is just the condition one needs to begin to change bad habits.

My family is so chock full of hypochondriacs, that I have not been sick my entire adult life. Well, I may have been sick and I might be sick as hell right now, but I certainly wouldn't talk about it. So when my kids are sick, I am quick to respond and even quicker to dispel. In, out, over. They have learned from 'the mother' and they do not complain. To a fault they are nearly ready to die before they will admit they're sick. Oh, they might mention a little something/something, but typically just get up and move on. Because I will not allow myself an illness, I then must become a hot mess when anybody else does.

Kate is somewhat different, as her immune system has been limping along in a chronic cripple her entire life. If it comes along, she will get it. So with Epstein-Barr and 95% of adults carrying it, I suppose any one of us could have been the culprit who infected her. I still kiss her on the mouth, share a spoon or straw, snuggle and swap germs as often as possible. But, none of that in our near future.  I am wondering if I should invest in a few of those disposable masks for a couple of months. Not only must I find a way to get her well, the real goal now will be keeping her well. 

I am not a happy camper as I send her back today to a germ infested dorm room with a fever,  but  am looking forward to an appointment with another doctor this week who can confirm for me that this too shall pass. Perhaps in the interim, I will stumble upon yet another home remedy that may not actually help her physically, but may certainly relieve my anxieties of being totally handcuffed. Doctors have advised that this is common, that they see this everyday and they do not get overly concerned. Hey, WHOA, they are not 'the mother'.

On the other hand, WB is a hand-ringing nervous wreck. He cannot comprehend the diagnosis, the illness nor why we cannot make it go away. Additionally, he has come up with a few ideas of his own. For us to openly show too much concern over this or anything else would take him right over the edge. It is certainly hard for us to hide that she is feeling poorly as all you have to do is look at her . My scampering around yesterday trying to "witch it out of her" nearly sent him to bed. Kate's Australian Shepard rescue was just as wild and never left her side (or head).

Thinking back on it more, she was surely a trooper yesterday when 'the mother' laid oily hands on her feet, neck and forehead, wrapping her up in warm towels. I am not sure if that $23 bottle of Peppermint Oil helped any at all, but to administer it with love was the only thing left for me to do. It was she who exclaimed, "Mama, my saliva must be toxic waste."

Just as with everything else that goes on around here, I write to the wind as we find humor to dispel fear.  If laughter truly is the best medicine, then I am thankful to still have plenty of it.

Then, thanks to Hunter after seeing the concoctions laid out on the table, who shared this....

Thanks to all who have expressed their love, concern and lifted our Kate up in prayer. 

Just Brantley

1 comment:

  1. "The typical victim of Epstein Barr's Disease is one who is a workaholic and known to burn the candle at both ends."

    Well DUH!! She got it from you! tee hee


Share |