June 3, 2014
Subject: Broad Spectrum Antibiotic shows promise in twins seizure patterns
Background: Joshua and Jared are twins born 4/25/84. Adopted at birth, all appears normal until their 2nd DPT injection, at which time they had a grand mall seizure 20 minutes after the injection. They have suffered from seizures since that time. Because of extremely high number of seizures they were not expected to live very long. But with the love of family and caregivers they have survived to the age of 30. It was deemed a” bad batch of Pertussis” that sent the 2 of them to I.C.U. moments after injection and 100’s of times since
To the medical community:
For quite some time I have been reluctant to put my thoughts and results on paper for others to view. The reason for this is simple; I understand to what lengths a parent, family member or caregiver will go to stop a child’s seizures. I certainly don’t want parents with a child suffering from the same, to obtain antibiotics at any cost. And because we are dealing with a lifesaving drug, and giving it to someone who is apparently healthy, we take on a future risk that the drug may not work as the patient builds resistance.
Backing up 8 or 9 years ago, my sons had a bad case of acne. A facial cream was prescribed to them which had a peroxide base and would bleach the color out of the caregiver’s shirts. The boys would hug a caregiver leaving some facial cream on their shoulder and of course “a stain.”
I asked their G.P., Dr. Bailey, if I could get something in pill form like, Tetracycline, for their acne. He agreed that it would be a good option. After a few weeks of use the caregivers noticed a positive change in their seizure patterns. Joshua who normally has a seizure every 3-5 days would go 5-7 days between seizures. And Jared, whose normal is 4-6 days would seize every 6-8 days. Also noticed, we were seeing less blood in their stool. 10 years ago, blood in their stool (in small amounts) was common, now it is rare. During the next few years we would increase the dose as their resistance built up. We started with 250mg twice a day of Tetracycline. A little more than a year later as the seizure patterns returned to normal we increased to 500mg twice a day. Two years after that, 500mg 3 times a day. Starting in January 2014, Joshua is at 2,000mg per day, which appears to be the endpoint for that antibiotic. Dr. Bailey, throughout the process, agreed not to withhold the Tetracycline if it was helping, rather bump it up as needed.
In January 2010, Jared was hospitalized 5 times. Each time he had a high fever and 50-60 seizures in a matter of just a few hours. After that many seizures, aspiration became a concern and he would remain in the hospital with Pneumonia. After his seizures were controlled by Dr. Lockfeld with a mixture of Phenobarbital and Keppra I.V., Dr. Bailey got Jared going on Levaquin for Pneumonia. The very first time Jared got Levaquin he had 60 days without seizures. After the 60 days, once again Jared had a high fever with multiple seizures and was back in the hospital. Levaquin was once again administered. After we were released, there were no seizures for several weeks. I asked Dr. Lockfeld about this record time for Jared. He thought maybe a chemical compound in the Levaquin bumped up the effects of their current seizure meds. After the 3rd visit to the hospital in 2010 (each separated by a least 60 days), I remember telling the doctors, “I will relax for 60 days,” as he would not seize for that long.
Jared’s final hospital stay was in late 2010. In I.C.U. Jared had a high fever of 104 and had as many as 80 seizures in the couple of hours it took to get him stable. And of course he got Pneumonia.
Once again, Levaquin the was drug of antibiotic choice to combat his symptoms. At Jared’s very worst time in I.C.U. Both Dr. Lockfeld and Dr. Bailey were present; they were doing everything possible to save Jared. At that time Jared was on a cooling blanket, ice bags under his armpits, and between his thighs. His temp was just under 105. The doctors explained each time Jared came into the hospital, his condition was more critical than the last, and that there is a real possibility that he may not survive. My reply to them was point blank, “If we believe he may not make it much longer, then what possible harm could I cause by giving him Levaquin at home with the first sign of a high fever?”
One of the doctors present stated, “If Jared should become resistant to Levaquin, we may watch him expire as all our best efforts may fail. It’s a real risk.” My reply was that a life of hospitals was not my desire for Jared. Quality of life is as important as length of life.
Thankfully, Jared did survive, and Dr. Bailey agreed that if I understood the consequences and the risks involved, he would prescribe Levaquin for home use at first sign of elevated fever.
After Jared returned home from Sacred Heart Hospital in late 2010, we gave him a second dose of Levaquin at day 55 (Five days short of his historical seizure day.) At day 110 we were still seizure free and started a 3rd dose (dose being 500mg a day for 10 days). Myself and Dr. Bailey, decided to stop the drug after the 3rd dose to see if Jared would have a seizure.
Around day 165, Jared did have a grand mall seizure. Dr. Bailey felt we were on a good track and agreed with me to continue, but this time with a 4th dose. We started him once again on a 55 day schedule. Day 1 he received 500mg of Levaquin, once a day for 10 days, and the same for day 55, 110, and 165. At day 220, seizure watch was on. Day 230-40-50-and 60 came without a seizure. His last seizure was in May2012. He did have one seizure after his hip replacement surgery in August of 2013, but I think we all agree that it was a withdrawal seizure. He was several hours late on one or more of his normal seizure medications.
All of this is remarkable, but it still did not motivate me to write this brief. In the back of my mind I wondered if maybe he happened to outgrow his seizures during this time. But I had heard this was more common with people in their early 20’s, and Jared was 28 at the time. Maybe it is a chemical compound in Tetracycline or Levaquin. Maybe it was something specific to the “bad batch” of Pertussis that festered in his system for all those years. To this day I still don’t understand what a “bad batch of Pertussis” means.
What convinced me to put this to paper was his twin brother, Joshua, who fell ill April 1, 2014. Joshua ran a high fever of 102, and had 3 grand mall seizures in just a couple of hours. We gave him Levaquin once his fever exceeded 101, within 24 hours his fever dropped. Within 3-4 days he was baseline. He then finished the 10 day supply of Levaquin (500mg one a day).
Joshua suffers all the same symptoms as his brother Jared, but twice before Joshua has received Levaquin for a high fever. Both times he seized 25 days after the start of Levaquin. Those 2 cases showed nowhere near the great results as his brother. I weighed out the quality of life vs. the length of life and could not and could not bring myself to use it as we did with Jared. Why does Joshua get 25 days seizure free and Jared get 60 days?
April 1, 2014 was an important date in our lives. If we add approximately 25 days to the start of Levaquin, we come to April 25, 2014, Joshua and Jared’s 30th birthday. By God, I was not going to let a seizure be the focus of April 25th. So on April 20th we started the second dose. By May 11th, we still had experienced no seizures (that was the 20th day mark). So we started the 3rd dose. I then called Dr. Bailey to get advice and refills for Levaquin. I asked if we should withhold the Levaquin after the 3rd dose or give him one more dose on or about June 2nd. I reminded him, his brother received 3 doses, we stopped, and he seized. It was after the 4 consecutive dose that Jared no longer seized when Levaquin was withheld. Dr. Bailey said to use 4 doses, and then see where he is. So this is where we are today, June 3rd, and the start of his 4th dose and is 61 days seizure free. This is a lifetime record for Joshua. I will hold my breath waiting to see what will happen around June 28th as we withhold the Levaquin. IF he should seize, I will argue for at least 3 more doses, as his brother used 7 doses to achieve his results.
I feel so strongly that G.P.’s and neurologists should look closely at records of patients who were hospitalized and used a broad spectrum antibiotic, and if there was a marked improvement in seizure activity shortly after release. Or a patient said after they were hospitalized and took an antibiotic at home, and went several days longer than normal without a seizure. Then we need to think about the possibilities.
With both Joshua and Jared a seizure could occur in the first few days of the initial dose. Don’t lose heart, it’s common.
For Jared he would get 60 days seizure free after initial dose. The difficult decision for a doctor is giving an apparently healthy person a second, third and fourth dose of Levaquin. The Key word is apparently healthy.
My wife and I raise llamas, when they have certain parasites; we treat the animal once to kill adults, and then weeks later treat again to kill the larva that will be hatching. Why do Jared’s problems replicate every 60 days and Joshua’s every 25 days? Is Jared more resistant to whatever it is?
Both young men gave me a history of when they would seize after the initial dose of Levaquin. That’s why I subtracted 5 days, and then started the next dose.
I am a happy dad right now. We have a quality of life. No hospital visits for seizures in more than 2 years. I have an incredible staff who can testify to all the facts enclosed.
Thank you Dr. Bailey and Dr. Lockfeld for all of your support and encouragement, we’ll update the two of you around days 85-90 on Joshua’s progress.
If this information helps even one person, it will have been worth the time required to write it down. I apologize for this format as I have no experience in this area.
Steve E. Messer
23845 Hwy 36
Cheshire, OR 97419
CC: Dr. Douglas Bailey
Junction City Medical Clinic, Junction City, Oregon
Dr. Alexandre J. Lockfeld
Oregon Neurology Associates, Eugene, Oregon
|Kitty Heaven by Kwang Lee|
|Hugging Trees by Kimberly Gerry Tucker|
|Tree by the Sea by Michael Toftum|
Peer Support Group in Cottage Grove|
April 3, 2017
KindTree-Bridgeway Family Swim|
April 9, 2017
Autism Peer Support Group |
April 10, 2017
|More Upcoming Events|
The Spring Newsletter is here|
What is 20th on the 20th?
Mary-Minn on Video|
Interested in learning more about advocacy|
Autism Iterrest Group
|More News Headlines|