Anissa’s Story Post #12- “Extreme Circumstances – Tests Of Faith”

Having Anissa free of seizures for an entire year enabled her such freedom to run, play and learn. So, when seizures returned, due to the flu she contracted while at school, our faith was sorely tried. The unpredictable effects of the seizures required someone to be with her at all times, whether awake or asleep. It was during this time that several new drugs for epilepsy were approved by the Food and Drug Administration (FDA), bringing new areas for us to explore.

After the second dose of the drug, Clonopin (clonazepam), Anissa went wild, kicking, screaming and thrashing her arms to strike anything that moved. It was necessary for us to physically restrain her until such actions subsided.

When a drug alleviated one type of seizure, other types would manifest. Behavior problems, fearfulness and confusion resulted. Another example came when Mysoline (primidone) was given to her on a trial basis. One day, I heard Anissa’s terrified voice coming from the bathroom. Rushing in, I found her standing on top of the toilet seat looking around in a bizarre state of confusion.

Whether from the drugs or the seizures, only God knows for sure, but it became increasingly difficult to cope with Anissa’s behavior. She became self-destructive, pulling out her hair, picking out her toenails, etc., and in sudden bursts of rebellion and anger destroyed anything in her sight. The perverse behavior became so magnified that, in comparison, the seizures now seemed minor.

Whenever Anissa accompanied me to a store, I found myself thinking that it would be easier if her physical features pointed out to others that she was mentally handicapped. By the “dirty looks” I sometimes got, I realized that to a casual observer she must have appeared to be just a “spoiled brat.” The words that Anissa’s neurologist spoke years earlier kept coming to my mind, that she would require very strict discipline — to the point that others not understanding the situation would consider the discipline abusive.

faith stronger than fear

My faith was challenged over and over again. I had to overcome the fear of taking Anissa out in public and also stop worrying about what other people might think. I learned from experience that when I allowed fear to overpower me, it didn’t take long for Anissa to win the battle! Therefore, I made up my mind that even if she needed physical restraint to the point of my actually holding her down on the floor while in a store to keep her from destructive behavior, then I would do so. The test came while grocery shopping! I laid her on the floor, hovered over her, fervently praying in quietness, as I attempted to shut out the glare of the people. From that day on, when out in public, she listened without requiring such severe restraints.

“And Jesus answered and said to them, ‘Have faith in God.’ For assuredly, I say to you, whoever says to this mountain, ‘Be removed and be cast into the sea,’ and does not doubt in his heart, but believes that those things he says will come to pass, he will have whatever he says. Therefore I say unto you, whatever things you ask when ye pray, believe that you receive them, and you will have them.”

Mark 11:22-24 NKJV

The Lord had given me the courage I needed to face the giant of fear, reminding me of the Biblical account when David faced Goliath – he believed God for the victory. During the past ten years of Anissa’s life, I had witnessed over and over again His Excellent Grace, thus enabling me also to believe for a victory!

To contact Anissa’s mother email blawyerlogos@bellsouth.net

To take a virtual tour of the retreat center go to http://www.wellspringhealingretreat.org

Anissa’s Story – Post #23 – The Power Of A Praying Doctor…

Again and again, it appears to be an unending venture in seeking a cure for my daughter. Through the search, it is my hope that others who suffer with uncontrollable seizure activity, or are diagnosed with Lennox Gastaut Syndrome, such as Anissa, will receive helpful information.

“But in our trouble God has comforted us—and this, too, to help you: to show you from our personal experience how God will tenderly comfort you when you undergo these same sufferings. He will give you the strength to endure.”

2 Corinthians 1:7 TLB

Upon our arrival in Tulsa, Oklahoma and the City of Faith Medical Center, we thought it best to transport Anissa to and from scheduled appointments in a wheelchair because of seizures being so unpredictable. She enjoyed the rides and was especially happy to be outdoors in the beautiful weather. Sometimes God answers prayers in areas we least expect, but need the most. While many were suffering from severe allergies due to an abnormally high pollen count that season in Tulsa, Anissa showed no sensitivity to the outdoor air.

The faith-filled atmosphere that encompassed the City of Faith complex was so peaceful. We were especially impressed with our first appointment when the neurologist, Dr. Liphard D’Souza, asked Pastor Joel Vesaner to come into his office and pray for Anissa. Surrounding her, we all reverently joined hands in prayer.

IMG_1127[3389]Anissa & Doctors -Tulsa

The honest concern that Dr. D’Souza had toward Anissa and our situation showed his heart of compassion. For several months, her digestive tract had been upset and was making grinding noises. He recommended an enzyme tablet with everything in it. I realized, then, this doctor knew the benefits of good nutrition. After two days of enzyme therapy, the noises subsided. It was then we learned the medical name given for Anissa’s condition is Lennox Gastaut Syndrome.

After getting the results of Anissa’s blood tests, there were several drugs that Dr. D’Souza wanted to try. He handed me his 1986 Physician’s Desk Reference Manual so I could read the description of Depakote (divalproex sodium), the drug he was considering. Since that drug is equivalent to the Sodium Valporate given to Anissa in the past, we hesitated in our decision to give Depakote a try. But after learning the tablets were enteric-coated with less chance for gastrointestinal upsets, we gave our approval.

While it controlled the absence seizures, after Anissa ate any mildly spiced foods, she would vomit, so her diet was very limited. It took high dosages of a combination of the drugs, Depakote, Valium, Tegretol and Tranzene to keep her seizure-free for three months. After that time, however, reactions set in: multi-seizures returned and in addition, her hair began to fall out, sores appeared in her mouth and blood in her stools.

Upon hearing this, Dr. D’Souza was very disheartened and said, “I’ll keep praying for her and we’ll come up with something!” True to his word, he has phoned me throughout the years to check on Anissa and discuss various drugs that may be helpful. Several years ago, while on a business trip to Florida, he and his wife came to our home – not as a visiting doctor but as good friends. The following quote by Nobel Prize winner, Francois Mauriac, describes our time in Tulsa:

“No love, no friendship can cross the path of our destiny without leaving some mark on it forever.”

When taking Anissa outdoors, Dr. D’Souza prescribed a wheelchair for her protection against injury. We followed his advice and for several years were able to enjoy the sunshine blessings of living in Florida. I have learned that when God places someone special in our lives, then no one can separate what has been joined together by His Excellent Grace.

To contact Anissa’s mother email her at blawyerlogos@bellsouth.net

To take a virtual tour of the healing center go to http://www.wellspringhealingretreat.org

Anissa’s Story – Post #28 – Medicine Shift – Watching All Things Work Together…

grace bridge

After the removal of Anissa’s wisdom teeth, the following year in June of 1993, she was approved for the experimental program to begin Felbatol (felbamate) therapy. She ended up having to go the least desirable way rather than embarking on the “compassionate” program, which we had preferred.

Then began the ordeal of withdrawal from her previous medications of Phenobarbitol, Valium, Tegretol and Tagamet. However, within a short period of time, the mental alertness that Anissa exhibited encouraged us to persevere through the rough times of “addictive” withdrawal symptoms. During a two-week period, she experienced 90 multi-type seizures that could easily have ended her life if left to fend for herself.

For accurate evaluation, the neurologist had also prescribed our purchase of a camcorder to video tape all the types of seizures manifested during a two-month period. Shortly thereafter, the videos were used in helping others to recognize various types of seizures, especially for caregivers who worked with such individuals. This, of course, was before people had access to the Internet — WOW! What a blessing it is!!!

After one month of only Felbatol therapy, Anissa was seizure-free for a consecutive period of 21 days – the first time in seven years to be free for more than one or two days per month. Since Felbatol was experimental, the drug company set regulations that required frequent blood tests and a specific dosage, stronger than was best for Anissa. Her digestive system became very irritated, unable to keep food or medicine down. Seizures returned and on October 4th, the neurologist said to get her immediately to the hospital.

After a five-hour wait in the hospital emergency room, she was given an injection of Reglan (metoclopramide) to counteract her violent upchucking and nausea. A positive side effect of Reglan was that shaking-palsy symptoms of Anissa’s head and upper torso stopped! (Normally, this drug can cause a side effect of tremors and lower the threshold for seizure activity, exactly the opposite of the effect it had on her.) She was then prescribed a very small dose of Reglan which gave her an excellent appetite and due to the cessation of the shaking, Anissa was once again able to feed herself. By the time of her next checkup, she had gained seven pounds within two months. Still, seizures were manifesting daily which required additional therapy.

Shortly after Anissa’s flare-up, Felbatol was approved by the FDA and became available through prescriptions. The neurologist was no longer required to comply with the “experimental drug” restriction and could reduce her dosage. Prior to Thanksgiving, at the onset of a family trip to West Virginia, a new regimen of drug therapy was begun, adding Valium (diazepam) to the Felbatol and Reglan.

“And we know that all things work together for good to them that love God, to them who are the called according to His purpose.”

Romans 8:28

The medication change caused Anissa to be in a more docile state that enabled some quality time with her grandparents. It had been over two years since we could visit with our family and grandchildren. A rare treat was being able to have Anissa join with us at a restaurant. We enjoyed first hand how things work together for good through the power of His Excellent Grace.

To contact Anissa’s mother email her at blawyerlogos@bellsouth.net

To take a virtual tour of the healing center go to http://www.wellspringhealingretreat.org

Anissa’s Story – Post #34 – Trials & Errors Of The Journey…

trials

Our journey could be described as a course of ruling out any medication or alternative method that would not be beneficial to Anissa’s overall health, while at the same time alleviate the violent seizure activity.

In mid-April, 2002, we noticed a very strong metallic odor in Anissa’s breath and stools, as well as an abnormal hair loss and increased seizure activity. As a trial series for better seizure control, she had been taking the antibiotic, Biaxin (clarithromycin), 250mg daily for six months. It was noted that whenever Anissa had taken that medication in past years, even during a sickness, she would be almost seizure free. Biaxin can reduce the clearance of Tegretol, raising its levels. The strange thing is that whenever Tegretol would be given in a higher dosage, Anissa would only have more seizures, including digestive upset with acid reflux. The antacid, Tagamet (cimetidine), reacts in a similar way with Valium (diazepam).

“Happy – blessed, fortunate [enviable] – is the man who finds skillful and godly Wisdom, and the man who gets understanding—drawing it forth [from God’s Word and life’s experiences]. For the gaining of it is better than the gaining of silver, and the profit of it than fine gold.”

Proverbs 3:13-14 AMP

Anissa’s blood test revealed a toxic level of Tegretol, so it was reduced from 1200mg to 800mg and the Diazepam from 20mg to 12 ½ mg daily. By mid-June her drug level was normalized and hair loss stopped but the upset seemed to cause more violent complex seizures. Her mental development was at a standstill, but her physical health remained in excellent condition. The caregiver’s challenge became greater in protecting Anissa during the violent seizures. Throughout the years, the knowledge gained from that experience has alerted me to think “research” if such “symptoms” should arise.

It was during this difficult time that a non-invasive brain surgery using “gamma knife” was being conducted for certain types of epilepsy, but being non-verbal kept Anissa from being considered as a patient. The anti-seizure drug, Keppra (levetiracetam), was approved for partial complex seizures. Also, aromatherapy had been reported as being effective for certain people with epilepsy.

One news article stated: “In Birmingham, England, jasmine was shown to dramatically reduce the effects of epilepsy in one patient. All unconscious, dysfunctional electrical discharges of the brain, which occurred every ten seconds, totally stopped after a patient was administered aromatherapy using jasmine only two times.” After showing the article to Anissa’s neurologist, he said, “Why don’t you first try the aromatherapy and then you will have a true evaluation. I will give you a sample of Keppra to try later, if you want?” Of course, we agreed!

Since aromatherapy was not a familiar avenue of healing, my lack of knowledge and faith required more information. Here were the research facts discovered: (1) “Essential oils illicit an immediate olfactory response and they are readily absorbed into the bloodstream. The olfactory membrane is the only place in the human body where the central nervous system is exposed and in direct contact with the environment. When an olfactory receptor cell is stimulated, an impulse travels along the olfactory nerve to the limbic portion of the brain, where memory, hunger and emotion is evoked. Before consciously knowing we are in contact with an aroma, our subconscious mind has already received and reacted to it. (2) Jasmine is considered very antiseptic and can bring balance to hormonal changes or disruptions. Its powerful aroma indicates it should be used in small doses, never taken internally unless under the care of a doctor and should be used with great caution for infants since their nervous system is still being developed. (3) Epileptics often get what is called an ‘aura,’ a strange smell or taste of something that does not exist, just before a seizure. Olfactory hallucinations are a symptom of epilepsy [especially in the brain’s temporal lobe] … often leads to bizarre behaviors. (4) Sugar uptake increases during a seizure and falls below normal between seizures. (5) A recovering brain can increase its capacity to form new memories.”

Balance is very important for Anissa’s wellbeing so the Jasmine Essential Oil was first diffused with a vaporizer and later added to her bath water. Her response was favorable in helping to control the seizure activity, but there were still over 20 days in a month’s time that she experienced one or more seizures a day.

It definitely was an accurate report concerning the validity of aromatherapy, for which I am grateful to have learned. Having physicians willing to try new methods for seizure control in Anissa was the result of prayer and

His Excellent Grace!

To contact Anissa’s mother email her at blawyerlogos@bellsouth.net

To take a virtual tour of the healing center go to http://www.wellspringhealingretreatorg

Anissa’s Story – Post #36 – Survival By Prayer – In The Eye Of The Storm…

Little did we know how the perseverance over past years would prepare our faith to face even greater challenges in the year 2004. During January, a week of prayer was set forth at our ministry’s Wellspring of Life Retreat Center. The retreat involved many intercessors from churches and ministries seeking the Lord’s favor for miracle breakthroughs concerning brain and nervous system disorders. During that week, Anissa had only one mild seizure – considered miraculous since daily seizures had been the norm for her.

Previously, her neurologist had suggested we consider a Vagus Nerve Stimulator (VNS) implant for Anissa that could maybe lessen the severity of attacks. Because of the significant change for the better following that week of prayer, we did not pursue the VNS implant until later, in June, when seizures had returned with a vengeance. After the epileptologist at Shands Neurological Center had seen Anissa and studied her charts, he said, “You better get your group and preacher to pray for her again!” He informed us that, to his knowledge, the oldest person to live with Lennox Gastaut Syndrome was 28 years. At that time, Anissa was 37.

The epileptologist’s assistant happened to be present when Anissa experienced a very hard sequence of seizure activity: jackknife into tonic-clonic into psychomotor (complex partial) and myoclonic, so the assistant ran quickly to get the epileptologist. It was the only time in Anissa’s life that a doctor was present to see first-hand how devastating such spells can be and described the hard thrusting of her arms as “fencing” motions. Afterwards, the “odds” given by the doctor regarding the VNS implant were not favorable for the type of seizures that Anissa experiences, as well as her “self-mutilation” to any strange body sensation. Also, she would have a four to five day hospital stay for video documentation of seizure activity, MRI and other testing. With my husband’s restricted breathing and need of oxygen, I would have had to stay with Anissa. Considering all things, the doctor felt it was important to best follow our “gut” feeling.

Shortly thereafter, I heard a minister share the following: “One day a hunter came across a bear in the woods. ‘I want a full stomach,’ said the bear. ‘I want a fur coat,’ said the hunter. ‘Let’s compromise,’ suggested the bear – and promptly ate the man. As a result, the bear went away with a full stomach, and the man went away wrapped in fur.” This lesson became clear that if we parents/guardians do not protect our own health, we could all be eaten alive. So rather than compromise our overall health with more stress, we decided to wait.

The decision proved right when four hurricanes hit our area during August and September – certainly a “proving ground” of our faith. “Frances” was our most challenging because of no electricity for five days – “Charley” was three days. We were most grateful that no structural damage occurred with our house and the retreat center. The main thing we learned: Preparation and Preparation! Afterwards we wasted no time in purchasing a generator! In 90 degree+ heat, cold baths were shock therapy for all of us, but seemed to affect Anissa in a positive way with less seizures – or was the good effect due to so many prayers being offered on Florida’s behalf from around the world?

“We can rejoice, too, when we run into problems and trials for we know that they are good for us—they help us learn to be patient. And patience develops strength of character in us and helps us trust God more each time we use it until finally our hope and faith are strong and steady. Then, when that happens, we are able to hold our heads high no matter what happens and know that all is well, for we know how dearly God loves us, and we feel this warm love everywhere within us because God has given us the Holy Spirit to fill our hearts with His love.”

Romans 5:3-5 TLB

My hope and faith needed to be strong and steady when on 12/19/04, more stress took its toll in our lives. While my husband, Anissa’s “daddy”, was attending church that Sunday morning, with his tithe and offering in hand, he suddenly died of cardiac arrest, possibly triggered by his emphysema/COPD. All in all, it was a year never to be forgotten and believe me, any survival was totally dependent upon prayer, God and

His Excellent Grace!

To contact Anissa’s mother email her at blawyerlogos@bellsouth.net

To take a virtual tour of the healing center go to http://www.wellspringhealingretreat.org

Anissa’s Story – Post #41 – Life Is Not Free Of Storms. Trusting God Through It All…

storms

While Anissa’s brother was visiting us in July, 2010, it finally happened that he was present to video tape one of her most dangerous type of seizures. Upon showing the video to her medical doctor, he commented: “If she was in a nursing home type facility, within one week she would wind up in the hospital.” Simply because they would not have the necessary means to care for her one-on-one unless she was bedridden. Also, Anissa’s communication skills are seldom verbal unless she yells and then the caregiver must decipher what her actions mean. The danger is greatest while walking or even in a wheelchair, due to her legs, arms and torso thrusting hard in opposite directions.

Another new drug, Vimpat (lacosamide), was prescribed. The first week of that medication seemed to make Anissa more alert. But after several weeks, tremors caused her head to shake so violently that food would fling out of her mouth and the seizures became more intense, so the drug was stopped immediately.

It was in 2011 that Anissa’s beloved neurologist for over thirteen years was no longer able to see her. So, to prevent the long trips to Melbourne, a neurologist in our locality seemed a wise choice; whereas, his first order was to have an EEG done.

To obtain an accurate brain wave test required that she receive no extra medication that would put her to sleep. Because of the constant head tremors, the technician had a very difficult time getting the wires glued to Anissa’s head and wanted to forego the test, which I totally understood the negative response.

It was then I mentioned how prayer can change things. I invited the technician to join with me in prayer, but she let me know very quickly, saying, “I do not believe in that stuff!” Knowing the importance of the EEG, I believed God for a miracle, so I asked if she would please proceed with the test while I would quietly sing to Anissa — she reluctantly agreed. As I was praying and softly singing in Anissa’s ear, a very deep sleep came upon her, amazing the technician, as well as myself!

“And Jesus looking at them said, ‘With men it is impossible, but not with God; for with God all things are possible.’” Mark 10:27 NKJV

The completed report read as follows: This is a diffusely slow abnormal tracing. There are multiple spike discharges seen throughout the tracing. This seemed to be fairly symmetrical. These occurred on every page of the tracing, spike and spike slow wave activity, which had the frequency of about two per second. Three minutes of hyperventilation was not performed. IMPRESSION: Severely abnormal EEG, consistent with a generalized seizure disorder. The neurologist’s interpretation: “The report shows that seizures in her brain never stop and unless medical research discovers a new medication, there is no answer!”

Several months prior to the EEG, due to the hard clenching of her jaws during violent seizures, Anissa had to have three more teeth extracted. With only front teeth remaining, that meant she must have puree or soft foods at mealtime.

As the challenges became greater, so did God’s Grace! He gave me the courage to drive to North Carolina for my granddaughter’s wedding. It was a four-day round trip and since restaurants were not an option, I had to pack enough of Anissa’s special foods to last. Also, it required taking her bath lift plus other essentials that filled up every space in the car. The good Lord made the way for a very special friend of mine who lived in that area, along with her Pastor, to stay with Anissa while I attended the wedding and a short time at the reception.

It was wonderful to see the many relatives and later that evening to visit with family at my son’s home. Except there be a change for the better concerning my daughter, it’s not a trip that I desire to repeat! The perfect weather and Anissa’s love to travel eased the stress considerably, for which I give thanks and can only attribute the blessings to His Excellent Grace!

To contact Anissa’s mother email her at blawyerlogos@bellsouth.net

To take a virtual tour of the healing center go to http://www.wellspringhealing retreat.org.

Anissa’s Story – Post #44 – A Steady Diet Of Keeping The Balance…

Gods invitation

While experiencing various trials and errors for control of seizure activity in Anissa during the past year, it also brought more researching on my part. As occurred in earlier years when the doctor prescribed a higher dose of the anti-seizure drug, Keppra, it happened again. There were more seizures, along with profuse urination, confusion and panic attacks. Also, I discovered that Tegretol, which Anissa had taken since her teen years, and Banzel for seven years, are reported to cause atrophy of the cerebellum.

At the beginning of January, 2018, my hopes arose when Anissa had no seizures for six days, then wham-o, they returned with a vengeance! At the end of the month, she was attacked with a viral flu that settled in her sinuses and bronchial area. On the first day of the attack, she experienced 16 hard seizures, but for the next 10 days Anissa had no sign of any – her longest period to be free in the past 25 years.

No matter how much coughing, sneezing, congestion, lack of sleep, off schedule eating, etc., she never had even a symptom of a seizure. To my way of thinking, I believed a miracle was taking place and she could be free for a lifetime – until the violent seizures returned. Upon discussing the situation with several doctors, there could be a scientific explanation. When a virus invades a system, the brain is not exempt from an alteration of the chemical balance. In Anissa’s case the effect was positive. But, like the doctors said, who wants a viral flu to in turn get only a temporary reprieve of seizures! While I agree, it certainly was a great help to have her free of seizures during that time of sickness. My faith seems to be stronger as a result of that experience.

“For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.” Ephesians 2:10 NIV

The latter part of March, I began supplementing Anissa’s diet with Beta Hydroxybutyrate (BHB), a Ketone Powder that could hopefully get her body into a state of ketosis. Since she was never able to tolerate the high fat, low-carbohydrate Ketogenic Diet, nor withstand long periods of fasting which could induce ketosis, this supplement seemed ideal. BHB salts has 12,000mg in one scoop, composed of Sodium beta-hydroxybutyrate 1190mg, Calcium beta-hydroxybutyrate 690mg and Magnesium beta-hydroxybutyrate 315mg. All of the ingredients seemed perfect for Anissa’s optimum health. It has been noted that Beta Hydroxybutyrate can cross different important barriers to be able to be turned into energy at all times. One of those barriers is the brain, which seems to know to let it in, creating a heightened mental acuity. Whether ketosis is taking place can be checked by using special urine test strips such as Ketostix. Also, the breath may have an acetone odor.

Just two weeks after Anissa began taking the supplement, a news bulletin was published by the Citizens United for Research in Epilepsy. It stated: “Thomas Sutula, M.D., Ph.D., and his team found that the administration of 2-Deoxy-D-Glucose (2DG), following a traumatic brain injury can significantly reduce the subsequent development of post-traumatic epilepsy in a rodent model.” Since Anissa has experienced so many blows to the head due to seizures, I researched the composition of 2DG to compare it with the BHB supplement.

Basically, they seemed identical in performance. It let me know that I was on the right track in the time of experimentation with my daughter. After being on the BHB for one week, she had LAB Testing done. It was perfect – first time ever since she was born. Seizure activity remained but the duration of the worse kind that lasted 9 to 12 minutes was shortened, lasting 2 to 3 minutes. I kept her on the BHB supplement for just two months. Hopefully, the positive change will remain stable until God fully perfects Anissa’s brain from ALL seizure activity by His Excellent Grace!

Note: Now that I am in a waiting period with Anissa, it’s a perfect time to share your personal testimony of His Excellent Grace on our Guest Post for others to see. Glorify God!

Submit your story to blawyerlogos@bellsouth.net or mail to Logos Life & Light Foundation, Inc., P.O. Box 1732, Ormond Beach, FL 32175

To contact Anissa’s mother email her at blawyerlogos@bellsouth.net

To take a virtual tour of the healing center go to http://www.wellspringhealingretreat.org