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 #29 – Watching For The Next Open Door…

god closes 2

On August 1, 1994, the FDA recommended suspending use of the anti-seizure drug, Febatol (felbamate), since it had been linked to ten cases of aplastic anemia – a rare and often fatal condition. In many ways, Anissa appeared to be better on the drug but her neurologist did not feel it was worth the risk, so it was discontinued. Several new drugs had been released that looked promising for controlling seizures.

Neurontin (gabapentin) was added to Anissa’s medications, but after two weeks of the drug combination, it became evident that Neurontin was certainly not promising for her, so it was deleted. Her severe adverse reaction had created a series of seizures during which bloody saliva drained from her mouth. We thought she bit her tongue only to later discover that two left, lower molars had fractured and crumbled, breaking at the surface gum line.

Because of so many drugs taken to alleviate the seizures, one destructive side effect was the pitting of her teeth, which caused them to be fractured during a hard seizure. Not visible to the naked eye, decay had developed within the teeth. Because of Anissa’s need to be anesthetized, this required another trip to Shands Hospital. Praise God, we were blessed to have the same sweet dental surgeon and team as in 1992, when Anissa’s wisdom teeth were removed.

This time, she had four left molars extracted, along with five restorations. Her EEG showed none of the seizure activity that had previously been seen while she was deeply sedated. Therefore, we concluded that Felbatol must have had a positive effect in helping to control seizures. Anissa’s gums and mouth healed quickly, but evidently the chemical balance of the neurotransmitters in her brain was jolted from the anesthesia, as nothing seemed to work the same thereafter in controlling the seizures.

We have learned that when one door closes, God opens another door. Our hopes were next on a promising new drug, Lamictal (lamotrigine), that Anissa was scheduled to receive through the University Hospital at Gainesville, until we discovered it would require a lot of testing. We knew her frail condition could not tolerate such an ordeal, so we decided to wait until it was readily available.

IMG_1153[3461] Anissa - Frail '96

The following year, in May of 1995, an exam revealed that Anissa had an erosion of the opening into her stomach from the esophagus, causing many digestive upsets. Prilosec (omeprazole), corrected the condition but to our dismay, it caused a sequence of much harder and more dangerous seizures.

The drug, Lamictal, became readily available in October, of which Anissa was able to tolerate small doses without digestive upset. She reacted very similar to that of Felbatol concerning alertness. Her sleep became at least 90% better, as well as less seizure activity. However, when the dosage was increased, Lamictal caused greater tension in her muscles, she was unable to relax and suffered from nausea and reflux. In order to give Anissa the adequate dosage required for better seizure control, her anxiety level increased considerably, thus defeating the purpose. As with Felbatol, the ill side effects reduced the benefits.

During an appointment with the neurologist in Melbourne, Florida, he indicated that Anissa suffers from the “worst-case” type of seizure disorder. My response: “I sure would like to know more about the brain!” His quick reply: “So would I!”

Much of our learning has been by trial and error. Of course, we will not allow any drug with like components contained in Phenergan, such as the phenothiazines, to be used for Anissa. The adverse reaction she suffered from Neurontin and Gabitril (tiagabine), gives us cause to question drugs affecting the GABA receptor in her brain.

“Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”

Philippians 4:6-7 NKJV

Patients such as Anissa are dependent upon decisions made by others. As legal guardian for the well-being of my daughter, prayer and a healthy diet is a necessity! Searching the Internet for any new therapy can also be helpful. But to persevere, it takes the guidance of the Holy Spirit and His Excellent Grace!

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

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

Anissa’s Story – Post #30 – Considering It All Joy…Even In Tribulation.

persevereing

On Anissa’s 29th birthday (1996), there was still no reprieve of seizures – frail in appearance, yet a strength that would always confound our human reasoning. Our desperate prayers for relief of the severe hyperventilation and hyperactivity that Anissa was experiencing day in and day out, caused us to search for a solution.

Research led us to a medical specialist in Miami who had considerable success in his practice using auriculotherapy, an electrical stimulation of the ear. An appointment was scheduled for Anissa. When the doctor performed this therapy on her, the hyper afflictions came to an immediate halt. Because the calming effect was so noticeable, the doctor recommended that we continue the therapy at home with a compact, state-of-the-art version of the machine. This unique instrument has a special probe to effectively detect and stimulate important nerve junctions in the body. Clinical studies reveal that it is capable of improving blood flow, thereby improving vitality, reducing pain and accelerating tissue healing.

In order to purchase the Stimplus instrument, I first had to learn the technique. That required my attending a two-day seminar near the Miami airport, where Anissa and her dad could enjoy a perfect view of air flight activity from our hotel room. After the hotel security guard was notified of loud voices coming from our room, he showed up at our door that night to check on things. Once he understood our predicament, we were told to try and keep the volume low. Oh, how many times we prayed for that very thing! Not wanting to disturb others, we knew that in the future there would have to either be a change with Anissa, stay at home or have a sound proof room.

The stimulator proved valuable to the wellness of our family – except for Anissa. The high-pitch beeping, (generated “automatically” by the portable version of the device), on the edge of her ear, created in her a sensitivity to the noise which she violently resisted. The large machine used by the physician in his office did not generate a noticeable noise, as it had a connecting line from the point of contact to the actual equipment located across the room. We were grateful of being able to experience first-hand the validity of auriculotherapy therapy. With Anissa, it is not mind over matter – it either does or does not work! Scientific research has proven that cranial electrical stimulation can be a safe, alternative method of healing. Since seizure activity is a type of electrical discharge in the brain, such stimulation must be regulated to avert negative results. At this present time, much research is being done with Deep Brain Stimulation which delivers controlled electrical pulses to a specific target in the brain.

“Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, through whom also we have access by faith into this grace in which we stand, and rejoice in hope of the glory of God. And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. And hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.”

Romans 5:1-5 NKJV

With so many disappointments throughout the years, the main thing that keeps my hope alive is the Word of God and memories 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 #38 – The Silver Lining In God’s Plans…

silver lining

The beginning of 2006 was off to a very bumpy start for Anissa. After taking the prescribed medication, Lyrica (pregabalin), she could only tolerate a 50mg dosage due to stomach distress. The higher doses caused her greater mental confusion besides having a very negative effect in controlling seizures.

Upon hearing a speaker say, “A survivor is one who finds meaning in the suffering,” the following scripture describes a meaning for Anissa’s survival . . .

“We are always confident, knowing that while we are at home in the body we are absent from the Lord. For we walk by faith not by sight. We are confident, I say, and well-pleased rather to be absent from the body and to be present with the Lord. Therefore we make it our aim, whether present or absent, to be well-pleasing to Him.”

2 Corinthians 5:6-9 NKJV

Since Anissa enjoyed and prospered during many sleepless nights from special scenic videos with calming music, our ministry began a project to create a one-hour video geared for the profound, mentally challenged person. The acoustics at the retreat center was great for recording a Messianic Psalmist, whose gifted voice can soothe a troubled soul. And with the Lord’s provision of a multi-talented engineer supplying his computer knowledge, as well as audio equipment, the video was completed and has been a blessing to many.

DVD bev

CD bev

At the same time music therapy became recognized by the medical profession as a therapeutic treatment for dementia and other types of mentally challenged patients. The doctor prescribed such therapy for Anissa, so I video-taped each session. There were some very positive signs but the unpredictable seizures would divert her focus, besides creating an interference of schedules. As in years past, a positive program had to be suspended due to Lennox Gastaut Syndrome – the multiple seizure saga.

In May, one of Anissa’s teeth abscessed. Remembering those past grueling experiences in setting up visits with a pediatric dentist, anesthesiologist, neurologist and orthodontist at the University of Florida Hospital, as well as the tremendous expense of such, my prayers were fervent for a reprieve. After several appointments ended with negative results, finally, a brave and compassionate dental surgeon came to the rescue! He and his staff were so efficient and commendable in giving the IV sedation and extracting two of Anissa’s teeth that took less than one hour. Also, the fee was very favorable, saving us at least $7,000, which was the cost at UFH ten years earlier each time she was admitted.

Another miracle was how a couple, who worked with disabled persons, just happened to have a day off at their jobs and were going to be in our area. They were most willing to help and what a blessing it was!! Anissa healed rapidly and maintained excellent health for the remainder of that year – except for seizures.

Several months later, a vision came before me of a picture of Anissa’s face on the cover of her Book of Life – Revelations: 20:12 – with these words written:

ANISSA

CHILD OF DESTINY

CALLED BY GOD AS HER MOTHER’S HELPER

TO BUILD HIM A HEALING CENTER WITHOUT DRUGS

“For you see your calling, brethren that not many wise according to the flesh, not many mighty, not many noble, are called. But God has chosen the foolish things of the world to put to shame the wise, and God has chosen the weak things of the world to put to shame the things which are mighty; and the base things of the world and the things which are despised God has chosen, and the things which are not, to bring to nothing the things that are, that no flesh should glory in His presence. But of Him you are in Christ Jesus, who was made to us wisdom from God … that, as it is written, ‘He who glories, let him glory in the Lord.’”

1 Corinthians 1:26-31 NKJV

I have seen just how much God can achieve in using such weak things, according to His Word and by His Excellent Grace, so that He alone receives the Glory!

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 #42 – Times May Change – But God’s Word Remains…

The victories seen in 2012 had more to do with the ministry rather than Anissa, but both are intertwined. Having experienced over 821 seizures that year, with 407 being the worse destructive kind, each lasting four to ten minutes, the stress factor hit a record high. The amazing thing is how well she always looked and stayed physically strong — yet my hope for a miraculous change remained!

HPIM0340 (2)

Hopes for a change in 2013 concerning Anissa were high. It began in January when I first learned about Fuel For Thought (MCT-Coconut Oil), which was proven to raise Ketones. Anissa began two ounces daily but in order to keep a 24-hour balance, the dosage needed to be increased to four times daily. In doing this, she developed a severe digestive disturbance and the dose had to be lowered to once a day. Even so, there remained a change in her alertness and recognition, as well as less allergies. The autism characteristics were also miraculously altered, but no change in the seizure activity.

With the greater challenge in caring for Anissa 24/7, the Prayer Clinic open four days a week, and searching for a couple to oversee our retreat center, I was ready for the joyous breakthrough that came forth in June. It was a definite answer to our fervent prayers when contact was made with Tom Winslow, an ordained minister for over 20 years, and wife Barbara, a Registered Nurse. Since they were Directors of Pensacola Healing Rooms for seven years and Regional Directors of the International Association Southeastern Healing Rooms, we thought they might know of a responsible couple to oversee our healing center. When they could not recall anyone who might be interested, I said, “What about you two?” Tom sort of laughed as he mentioned about their plate being already full. But God had other plans! After a time of fasting, with prayer and a commitment to know and do the Lord’s will, it became evident the Lord was calling them to be our new Directors.

“You have not chosen Me, but I have chosen you and appointed you that you should go and bear fruit, and that your fruit should remain, that whatever you ask the Father in My name He may give you.”

John 15:16 NKJV

Within a month’s time, I heard a news report concerning magnetoencephalography or MEG Scan — an imaging technique that identifies brain activity and measures small magnetic fields produced in the brain to pinpoint the source of seizures. After receiving word that Florida Hospital for Children in Orlando had the MEG Scan and was opening its doors to adults suffering with seizures, Anissa at age 46, was accepted and evaluated. Without hesitating, the neurologist said: “She needs a corpus colostomy! It may not alleviate all seizures, but it could lessen the severity of them.” I was very disappointed when he said the scan would only be used during the surgery and not prior to an operation. When I responded that a corpus colostomy [also called “split brain”] operation was not considered in the past due to her combatant behavior, the doctor looked at Anissa and said: “Well, she’s no more than a zombie now!” Shocked to hear such words, I asked if he had looked at the video previously sent to him. When he answered in the negative, the nurse presented the video to him. He became more irritated when his computer refused to work properly. I offered my camcorder that was already set to view, just in case there was a mishap during the consultation. He said that it wasn’t necessary and instructed the nurse to answer any questions concerning an operation, then he quickly exited the room. The nurse suggested more prayer before making a decision. The following week, Anissa experienced some very combative episodes, plus an entire day of tonic seizures – the type referred to by the neurologist that may not be alleviated by the surgery. I wondered if it was God’s way of showing how difficult it could be after such a surgical procedure?

“Do not be deceived, my beloved brethren. Every good gift and every perfect gift is from above, and comes down from the Father of lights, with whom there is no variation or shadow of turning. Of His own will He brought us forth by the word of truth, that we might be a kind of first fruits of His creatures.” James 1:16-18 NKJV

It was during that time period when CNN had a special report regarding Charlotte’s Web, a constituent of marijuana/hemp with less THC and higher CBD, being used to control seizures in children with LGS. Chief Medical Correspondent, Dr. Sanjay Gupta, hosted the program with special guest, Dr. Alan Shackelford, a Harvard trained physician and one of the nation’s foremost experts on medical marijuana. After seeing a video of Anissa’s seizures and viewing her medical records, as well as reading her story, Dr. Shackelford wanted to personally meet her. As I prayed to know God’s will concerning the request, the Holy Spirit led me to Isaiah 43:21 “This people have I formed for myself; they shall show forth my praise.” That Word gave me great peace of mind that I was going in the right direction.

The visitation was set up by Consumer Law Services. Their firm worked in collaboration with expert physicians and to assist patients in determining whether they are complying with the Doctrine of Medical Necessity. It was important to have a valid legal defense before using medical marijuana, also known as cannabis/CBD. On Sunday, December 15, 2013, Dr. Shackelford made a “house call”, along with the legal team, to see Anissa. The doctor’s attitude greatly impressed me as to how he listened very carefully to every detail in my answering of his questions. Before the visit ended, I was privileged to pray with them and give each one a copy of Isaiah 43:21. Since that day, it is my understanding that this doctor spends much of his time in Israel, working with a pharmaceutical company concerning the production of cannabis/CBD. Their visit greatly encouraged me to pursue that open door to try the CBD with Anissa. In my heart, the faith I had was in the Lord’s pathway of healing for Anissa and not the CBD, so any success would depend upon 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