 Lantz at 2 days
|
 Lantz at 2 years
|
 Lantz at 4 years
|
 Lantz at 6 years
|
 With Layne
|
 At Schumpert
|
The year was 1995, Lantz was the typical seven years old boy, in some ways, in other ways he was more special than most - to me, that is. I am Lantz's mother, and I am telling Lantz's story. I always had a certain fear of losing him. He had this certain angelic, 'God's little soldier' way about him. I guess something only a mother could see and feel.
Lantz basically had been a healthy child, with only a few sinus/allergy infections from time to time. He had bronchial pneumonia a couple of times as an infant, and was classed as borderline asthmatic. And he did have an acute case of chicken pox at age four. Yet, never anything so serious. In September 1995, Lantz was stricken suddenly by an unknown viral syndrome accompanied by multi-organ failure.
He first began running a temperature of 102 degrees, and had a thick, stuffy nose. The first opinion of his pediatrician was that he had an acute sinusitis. She, at this time, prescribed antibiotics, and we left the doctors office. By the time we arrived at the pharmacy, and got his prescriptions filled, he broke out in a red lacy rash from his head to his toe. I immediately took him back to the doctor's office. She then thought he had Fifth's disease, (which is the fifth of the measles family). So, she sent us on home with the antibiotics she had prescribed, and acetominophen every four hours and ibuprophen every six hours.
The following day, the rash was much worse, and his fever had not broken at all. We went back to the doctor's office. Since his chicken pox had been so bad, we assumed that he must have been having a severe case of the Fifth's. We went back home.
By the next afternoon, Lantz was completely unable to walk back and forth to the bathroom, and was beginning to dehydrate from the fever and lack of fluid intake. His legs and fingers were hurting in the joints, and his feet and legs were swelling up through his knees. So, we went into the hospital where he then started IV fluids. His fever still never broke. By the next evening, his urine had turned coffee color. The nurse tried to say that it was because he had been dehydrated, and that sometimes this would happen. I (being his mother), insisted that the pediatrician be called immediately. She, in turn, came directly to the hospital and telephoned and intensive care specialist in the next large town.
Lantz was immediately transferred by ambulance to his hospital. At this time, we were told that he would be under observation throughout the night, and probably released the following day. That day turned into 33 long days and nights in the Pediatric Intensive Care Unit, with another 10 days on the regular pediatric floor.
Lantz's body began a course of multi-organ failure. Of course, the coffee colored urine was the first sign, being that his kidneys were failing. From there, it seemed every couple of days, the infection moved to another organ of his body. His heart, lungs, liver, pancreas, and even his bone marrow were at some point affected by the horrifying illness.
During this lengthy stay in the hospital, Lantz underwent several surgeries. He had to have peritoneal dialysis, tracheotomy, as well as having two abscesses removed, which were caused from IV's, and he was on a ventilator after the first two weeks. Lantz lost his entire muscle mass while this unidentified 'syndrome' ripped through his little body. Eventually, as mysteriously as it has began, it started to disappear. Gradually, Lantz regained consciousness, and began his recovery process, only to bring forth another mystery....
Lantz was released from the hospital November 2, 1995. He was at home for 17 days when he started these episodes of vomiting. The first group of doctors, which included the Pediatric Care Specialist, a neurologist, a psychiatrist, and whoever else may have been a part of the picture at the time, believed that Lantz was suffering from depression or a process of denial about his illness. He had psychiatric evaluations, CAT scans, MRI's, you name it... he had it! Nothing was apparently wrong with him, so it was thought that he was becoming mentally challenged.
I had absolutely no way to describe these episodes and they had no idea what was really going on. I do know that they were not seeing what I was seeing, the reality of this ordeal. At this point Lantz had lost a lot of weight, going from 64 pounds, before his illness, to 52 pounds at discharge. On the 19th day of November, after the first episode began, on the 16th or 17th, he weighed into the hospital at a mere 43 pounds. It was a pitiful sight, to see this little boy, who had been so stocky and muscular from birth just dwindled away. He had been so healthy, that at 8 months, you could hold his knees and he would do sit-ups, so very cute.
So, the doctors met and made the decision that Lantz needed to be put in a psychiatric rehabilitation center for some time, indefinitely... Lantz's biological father, my husband, and myself met with the doctors and after quite a few misleading, and misgiving details on his father's part, the psychiatrist tried to say that it was my husband and my fault that Lantz was having this problem. We had him so upset, because we were so against his father. NOT SO! I mean, the fact that his father had never played an important role in the children's lives except at his own convenience hardly ever stopped me from encouraging them to have a relationship with him when they could. I mean, what better way for them to know who he really is than through their own eyes. Nothing I could tell them would ever be convincing enough. I guess none of that is important in this though.
So, we all decided to put him in the facility they were telling us about. Supposedly, he would have full time, around the clock nursing, (keep in mind, he has no muscle tone, which meant he was in a wheelchair, and could not walk, at all), bedside assistance, around the clock meals, as he wanted. This was due to the malnutrition from his 8 weeks illness/hospitalization.
Well, when we (my husband & myself) got him to the hospital to drop him off, boy, were we enlightened. Lantz's roommate was a truly out of this world child. Not that we thought it was his fault, but he had clothes scattered all over the bedroom, water all over the bathroom. And he was running up and down the hall acting extremely silly. WILD!
Shortly after showing us to his room, I had to fill out a pile of paperwork. Lantz stayed in his room. By the time I finished filling out all the papers and got back to him, he had to use the bathroom so bad, he nearly wet his pants. Where were the nurses? They did not even realize that he would need a urinal, because he could not get out of bed. At 10:00 p.m., the door was to be shut, and the lights were turned out. What was he to do if he needed someone during the night? Got me!
Then, Lantz was also hungry, and he wanted chicken nuggets. They had the nerve to tell me they had some cold cereal they could fix him, but that he had came in after 5:oo p.m., and he had missed dinner. So, for the next 2 hours, I argued with the 'psychiatrist' about getting him out of there, and I did. When we left there, we went straight to McDonald's and got chicken nuggets. When we got home, he was fine. Except for the fact that he was still so weak, but hey!
It is hard to remember just how frequently Lantz's episodes occurred at first, because I never really realized myself how pertinent this information would be. But, they have never had any definite pattern as far as clockwise or calenderwise. Sometimes he has episodes every other day, and then he may get up to three months episode free, but that's rare. In fact, I only remember it happening once.
His episodes usually start off with itchy, achey eyes, and fatigue. They are no definite triggers that we have found for him. Occasionally we have directed it strictly to fatigue. One reason it was so hard to keep up with his episodes when they first started is that he has hypertension believed to be a result of the kidney failure during his organ failure. Yet, his blood pressure is usually fine between episodes, and spikes during an episode. At first, we were unable to distinguish which came first, the vomiting or the blood pressure.
Over the next year, all we could do was pray, clean up after him, and take him in for an IV when he needed it. Which was usually the second day into an episode. With the IV is in place, he begins to feel better, almost immediately. Absolutely nobody had any explanation whatsoever about what was going on. Finally, January 8, 1997, Lantz was in the pediatrician's office for an IV, and just happened to have thrown up on the way to the office. Aha, we had the evidence with us, his 'puke pan', as we call it.
When the doctor looked at the stuff in the pan, she thought it looked to have blood in it so she referred him to a different doctor, a GastroIntestinal specialist this time. We were transferred by ambulance to a different hospital for a second opinion, and am I grateful (kind of). The GI did not find a thing except for a little irritation in the esophagus, but nothing major. Yeah, right! But, during this stay, the GI did encourage me to let a whole team of his specialist look into Lantz's complex case. I was glad to consent, anything to help my poor son get on with his life.
After battling this thing for one and a half years, we found a doctor who said, "Your son has Cyclic Vomiting." So, what does this mean? We were given no real explanation, except that it is relative to the migraine headache, but occurs in the stomach. It usually runs in family's that have migraines on the maternal side, which ours does. We were told basically that we would just have to learn to deal with it as anything else. Learn to recognize the triggers, and go from there. Boy, was that WRONG!
Another year went by, Lantz just kept having these episodes of vomiting and stomach cramps, etc. Finally, he was episode free for three months, and we thought we were home free. Wrong again, here comes another episode. I guess because he had actually started to feel semi-normal again and think that maybe he did still have reason to exist here on Earth, this episode really hit hard. I was totally devastated myself. With no clue as to where to turn, I just started dialing numbers on the telephone, and eventually found a GI specialist in Houston, who truly does not believe that Cyclic Vomiting exists, or just does not lean heavily on it. I don't know, but he did not believe Lantz had it at any rate.
So, he put Lantz through the ringer one more time, the endoscopy, the barium x-ray (for lack of the technical term), and so forth. All he found was that Lantz had an acute esophageal irritation from a Hiatal hernia and reflux to a certain degree, (acid indigestion/heartburn). Lantz's stomach was described to be like a rotten sewer. The doctor said that there was a clump of bacteria building in his stomach. (This explained the horrible odor when he would belch.) So, the plan was to repair the hernia, and to correct the reflux with a half wrap fundoplication. (My question had been, "What if you are mistaken and Lantz does in fact need to throw up in the future? What will happen if the 'bacteria' builds in his stomach and he has no release?
Even though the Houston doctor seemed very intelligent and confident, I had CVS bouncing in the back of my mind. My questions are the reason they went with only a half wrap on the fundo.) This all took place in November 1997. Lantz was prescribed an antibiotic (one I had never heard of, very strong), Propulsid, and Prilosec to take for the next two months. Then, January 30, 1998, we returned to Houston for the surgery itself.
By the time Lantz began to recover enough to know how he was feeling, he told me he felt like he was in an episode, only without the vomiting. That did not even sound good to me, but we would soon see. By the time we reached home, he was feeling a little better, not so much like he was in an episode, (but this was 3 - 4 days later). About a week or so later, he got to where he was throwing up small amounts of clearer liquid, not the rotten green or brown stuff, like before. So, we thought maybe this was somewhat better, but still, time would tell. (A thought, he was still on the Propulsid and Prilosec for one month after he had the surgery. Just to help the healing process.)
Within a month or so, (which is when he would have stopped the medications), Lantz was back to the same old funky stuff he had been doing originally, and we both were wondering if we had wasted our time. Who knows? Not us, that's for sure!
Briefly, (I hope), I would just like to describe the most of Lantz's episode so that those of you who know nothing of CVS, can possibly get a clearer picture. And of course, I know those of you who deal with CVS on a regular basis, well, you already know where we are coming from. You all know this disease is 'real', and it may not be deadly, (though I am sure it could be), and definitely it will sometimes make you wish you were.
Lantz's general episode, as I had said earlier, begins with his eyes. Sometimes he has a terrible headache, of the migraine type. His stomach is usually hurting around the navel area, and he has sharp pains around the mastoid area (behind his ears). He will start to gag, and then BOOM!, like a rocket, here it comes as if someone in there has flipped a relief valve.
He will then vomit consistently for hours on end, sometimes two - six hours, other times for days. When the episode lasts for days, the vomiting comes intermittently, as he will get comfortable enough to rest for a while, then it cranks up again, off and on. At the onset of an episode, Lantz loses his appetite completely. In the beginning, he didn't realize how important it is to keep drinking. He has since learned that if he can keep drinking during his episodes, sometimes he can throw them before he actually dehydrates. Occasionally, he can recognize that an episode is coming, and take a good long restful nap, and stop it. This is a rare occasion.
Usually the first time he vomits there is quite a bit of substance to it, as whatever he may have eaten over the past day, or two. After that one time, it gets to be this phlegm, and slime stuff. This is usually kind of clear, with a green or golden tinge to it. When his esophagus has been irritated, it may have some bright red blood or dark brown (old) blood in it. I know this is gross sounding, but you really can't even begin to imagine, unless you live it.
The first time he vomited the harsh green and brown stuff after he had surgery on his esophagus, I went frantic, like before… But this time, my daughter had gotten a computer for Christmas, and we had just signed on to the 'net' and such. One night, during one of these episodes, Lantz and I were truly depressed because his surgery was supposed to have fixed the problem, but it did nothing at all. (Well, I am sure it did something, but what? Not what it was meant to!)
So anyway, I start searching the 'net', and for some wicked odd reason I chose to look up Cyclic Vomiting Syndrome. Wah - Lah! I found the Cyclic Vomiting Syndrome Association, and life, though still tough, had been ever the more interesting. We actually know that there are others out there sharing the torment of this dreaded disease. Finally, we have found people who know this is not just in our minds, and there is no other place to lay the blame, except that, Lantz does have CYCLIC VOMITING SYNDROME! Quite possibly, if we continue to band together and spread the word about CVS, others will also realize this is 'REAL'.
Thank you so much for your time and interest, in Lantz's story, and in learning more about Cyclic Vomiting Syndrome.
I have been blessed in finding the Cyclic Vomiting Syndrome Association. I am afraid to speak to freely, but since we have found the C.V.S.A. listserve, Lantz's episodes have improved. Possibly the idea that there are others out there that know this disease is real. I don't know, but quite possibly with the help of everyone who reads this webpage, we may find the answers that we so sincerely pray for each and everyday.
A very special thanks to a very dear friend to Lantz and I, one whom we have never even had the pleasure to meet, Joyce Leeper, (mother of Jeremy, another CVS patient), for putting together this page for my son. Also, a very sincere thanks to everyone on the listserve, who so willingly listen, read and respond to every word, and are always there with words of comfort when things are not going so well. May God bless us all! Thank you from the bottom of my heart.
DeAnn Elkins (Mother of Lantz, 10 years old CVS sufferer)
Lantz and DeAnn. Want to join the Ring? |
|---|
| [Skip Prev] [Prev] [Next] [Skip Next] [Random] [Next 5] [List Sites] |
