Taylor Bryan

Botox

2010-02-15T16:37:00.000-08:00

Thursday February 11, Taylor and I meet Ken and Stacey at Dr. Kelly’s office, for Taylor big Botox treatment. Back in December Dr. Kelly did preformed a test injection of Botox about the size of a quarter on upper stomach. At this appointment Dr. Kelly injected a whole vile of Botox (about 10 to 12 injections or more of Botox , I got to the point I could not watch and stopped counting). I telling you Taylor did not even move, he just laid still with his arms above his head resting them on his forehead, the only movement would be that he would just squint his eyes with each injection. Dr. Kelly would ask him if he wanted him to stop to get him a break, Taylor would say no keep on going. This Botox is stronger than the test Botox. Dr. Kelly says it takes up to 5 days to feel the results. Also, it hurts Taylor for a t-shirts to touch his stomach so you can only imagine how bad it hurts Taylor for the Doctor to touch or inject medication into Taylor’s stomach. I will update you in a few days to let you know how the new round of Botox worked.

Rita

History in the making

2010-01-19T11:41:00.000-08:00

Taylor returned to see Dr. Kelly, Thursday January 14, 2010. The visit was just a follow up to the Botox appointment back in December. The good news is that the test spot on Taylor’s stomach seems to not twitch and is not as painful. If you all remember that Dr. Kelly injected a quarter size area on Taylor’s stomach.

So the plan is that in February Taylor will receive a stronger Botox (Dr. Kelly called it Botox A) and it will be injected in a larger area on the upper stomach. The other change is that over the last month Taylor has slowly stopped taking the drug Impramine. This drug has made Taylor gain weight and has not had any real benefits for Taylor condition. Dr. Kelly wants to wean as many drugs from Taylor as he can. Dr. Kelly reminded us also, that the Botox will take time to work and Taylor will not feel the benefits right away.

I would ask every one to pray for two things this month. 1,that the treatments in February works. 2, that we can get the insurance to pay for the treatments, right now they will not because there is not case history that Botox works for Taylor condition. The funny thing is there is no case history on Taylor’s illness, because it is so rare. I guess Taylor is making medical history not quite the history he had in mind I’m sure.

Thank you,
Rita Bryan

Update on Botox appointment

2009-12-09T05:43:00.000-08:00

Taylor received he first Botox injection yesterday afternoon. Taylor was very brave while Dr Kelly inserted a 2 inch needle in the upper part of his stomach with no numbing medication or any thing. Dr. Kelly while the needle was in, fanned the needle around. I want to tell you, Taylor did not flinch, he is the toughest young man. Dr. Kelly said it could take up to 5 days to see if the Botox works, also he only gave Taylor a small amount of Botox to see if it would work. The next appointment he would inject twice as much. Taylor was in a lot of pain from the needle and Dr. Kelly pressing lightly on his stomach. We are praying that in the next few days Taylor will start to feel less pain and spasms.

Thank you for your prays yesterday.
Rita Bryan

Big Day

2009-12-08T04:13:00.000-08:00

Please keep Taylor in your thoughts and prays today. This afternoon Dr. Kelly will give Taylor is first Botox treatment. Please pray that the injections will help with the pain and spasms in Taylor's stomach.

Thank you
Rita Bryan

One Year Anniversary

2009-11-17T18:08:00.000-08:00

It is hard to believe that this next week is the one year anniversary of Taylor’s illness. It is really hard to put into words how hard of a year it has been. As a parent, there is nothing harder to live through, as to see your child suffer. I really don’t know how Taylor does it 24/7. He has done so well and Ken and I are so proud of him.

Two weeks ago Taylor went back to see Dr. Kelly (the pain doctor). Dr. Kelly doubled up on a few of Taylor’s medications. Dr. Kelly also, did a blood test to make sure Taylor’s liver is handling all the medication that he is on (we don’t have test results yet). Dr. Kelly scheduled Taylor next appointment Dec. 8, to start the Botox injections in the muscles of Taylor’s stomach.

The last few week have been particularly hard, Taylor’s pain level has came down a little. His pain fluxgates from a 6, 7 to an 8, mostly it has stayed around a 7. Although his pain decreases is good, Taylor has had times where his pain has shot up to a 9, 10 for unknown reasons. Last Friday, Taylor had a pain episode so bad during the day that I told him I was just going to take him in to the hospital. Taylor hates the hospital and said he would not go, so I said, I was calling Dr. Kelly. Dr. Kelly called Taylor in some Diazepam (Valium) to help calm his stomach muscles down. Diazepam (Valium) is a medication that Taylor has been on before that did not seem to work. But thank God this time with a higher dosage it has seems to help a little in the last few days. There has even been a short time that Taylor’s pain went down to a 5. He has not had a pain level at a 5 since he was in the hospital in March, where he was on IV pain medications. Taylor was so funny and said after he experienced some relief from the 7/8 pain level and I quote “Valium is my best friend”.

To everyone that reads this update, would you please make special effort to pray for Taylor on December 8. Dr. Kelly has high hopes that the Botox will help, we know that the real healing will come from God.

Thank you for your thoughts and prays.
Rita Bryan

September 30, 2009

2009-09-30T11:05:00.000-07:00

It has been awhile sent I last updated Taylor’s blog and not much has changed in Taylor’s condition. Taylor has been back to see Dr. Kelly the pain doctor two times since my last post with the latest being yesterday. In the visit yesterday Dr. Kelly increased Taylor medications and in some cases doubled his dosage. Dr. Kelly is trying to get Taylor to the point that he is maxed out on the dosage medication before trying Botox injections in Taylor’s stomach. He hopes this will stop the spasms. Dr. Kelly has researched Taylor condition and confirmed that it is very, very rare.

Some good news, Dr. Kelly has Taylor taking a new muscle relaxer as a sleep medication, and it seems to allow Taylor to sleep 3 or 4 hours in a row. It takes awhile to work and he has to retake it in the middle of the night to fall back to sleep, but this is a step in the right direction. Dr. Kelly says that it is important for Taylor to sleep so that his body can heal. Also, acupuncture is helping with his headaches, he still goes once a week and only has a headache once in a while.

Taylor and his family would like to thank every one for your thoughts, prayers, and cards. Taylor, because of his condition, does not want any visitors. We try our best to keep his life stress free and quite. Hypersensitivity disorder means he is hypersensitive to everything around him and stress makes his pain worse. So, thank you for your understanding.

Rita Bryan

Pain Doctor

2009-08-26T10:17:00.000-07:00

Yesterday Ken, and I, took Taylor back to the pain management doctor. We had made many calls over the last weeks to let the doctor know that the new medication was not working, and seemed to make Taylor’s pain worse. Taylor, also is not sleeping more than a few hours a night. Dr. Kelly’s office keep telling Taylor in the calls give the medication a few more days, then Monday, Taylor was just physically and emotionally exhausted and seemed to hit a wall. I called Dr. Kelly’s office Tuesday morning and insisted that Taylor needed to be seen that day (this is no easy task, it takes months to get in to these doctors). But thank God, they called back and we had an 11:45 appointment, Taylor would not see Dr. Kelly, but, would see Dr. Walls.

We all arrived at 11:30 to a packed waiting room, Taylor checked in, and before we could sit down, the nurse called his name and escorted us right back (this is also unreal because every one waits forever, our first visit we waited an hour and then had a over 2 hour office visit) Dr. Wall was very nice but, had the same wide eyed look on his face when examining Taylor that every doctor has. Taylor said it was funny when he told the doctor all the medication that he has been on to try to get him to sleep, and the disbelief look that the doctor gave him when he told him that none of them worked. Dr. Wall said he had spoke with Dr. Kelly and they wanted to try 3 new medications and increase the dose of another that Taylor is already on.

Taylor’s medication list:

Lunesta (new sleep med) did not work last night.

Tramadol (new pain med) only seems to work about 2 hours and only takes the edge off the pain, Taylor can only take every 8 hours.

Lidocaine cream (new for pain) has not used yet, had to order this prescription.

Imipramine (old med, that the doctor is increasing to help balance the serotonin levels of the brain and calm Taylor’s nervous system)

Gabapentin (old med, for nerve spasms)

Promethazine (old med, for nausea and vomiting)

Taylor, Ken, and I want to thank the many people that have called and sent cards and well wishes for Taylor. Many have asked is there any thing that they can do. Taylor and our family would ask only for your prays at this time.

Thank you for your understanding.
Rita Bryan

(pain level today 7 to 8 out of 10 with new pain medication)

Taylors next appointment with pain doctor Dr. Kelly 9/1/09

MRI

2009-08-11T17:01:00.000-07:00

Saturday, August 8, Taylor at the request of Dr. Kelly, had an MRI on his back. Dr. Kelly wanted to check out Taylor’s spinal cord and nerves paths to see if there was any thing there to causes Taylor’s stomach spasms and pain. Dr. Kelly’s office called with the report late this afternoon, the finding was good new, there was nothing that was abnormal with the MRI. Taylor is still inching his way up on the dosage of new medication. He has not found any relief from the new meds and still is having trouble sleeping. Taylor will return to Dr. Kelly’s for another visit on the 1st of September. We are still praying that the medication will work.

Rita Bryan

(pain level 8 out of 10)

Encouraged

2009-07-29T18:56:00.000-07:00

“In opening our hearts, we hope this might promote greater awareness of this condition. Perhaps it will encourage a clearer understanding of the individuals and families who are affected by it”.
~Ronald Reagan

Today July 29, Taylor, Ken and I went to the appointment with the pain management doctor Dr. John Kelly. The 2 ½ hour appointment was very Encouraging. Dr Kelly took the time to listen to all of Taylor’s history. Finally, we met with a doctor that feels that all the symptoms are related. One of the first symptoms he wanted to address is the lack of sleep. Dr. Kelly added that 80% of healing happens when a person is asleep and since Taylor only gets little to no sleep each night, he felt that it was important to address this first. Dr. Kelly agreed with the diagnosis of hypersensitivity pain disorder, and believes that Taylor, because of this disorder, is very sensitive to medicating and side of effects of the medications. So, like the Gabapentin, all the medications will be started at a very low dose and be increased over time.

Taylor’s condition is rare and it is so amazing to watch the look on a doctor’s face when they examine Taylor and see his stomach spasm the way it does. It looks like a wave that ripples over the upper part of his stomach. Taylor says it feels like a Charlie horse, but the pain does not go away. Dr. Kelly wants Taylor to take a video of the spasms and send it to him because Taylor’s condition is so rare.

In the visit with Dr. Kelly, he said, he wanted to do one more MRI on Taylor, this time it will be on his back to see if there is something wrong with the nerves in Taylor’s spinal cord that are connected to Taylor’s stomach. He wants to rule out any pinched nerves or inflammation or anything else.

Dr. Kelly added two new medications to Taylor’s daily routine he will still take the Gabapentin (for nerve spasms) and, Promethazine (for nausea and vomiting). Taylor will add a dose of Imipramine (this will help balance the serotonin levels of the brain and calm Taylor’s nervous system), and the other is Diazepam (to help relax the muscles, and to help Taylor sleep).

We came away from the visit encouraged. Dr. Kelly addressed every symptom, had a plan, and explained medically what was going on with Taylor condition. We look forward to Taylor starting his new medications and getting on the road to recovery.

Please keep Taylor in your thoughts and prays, we pray that this new medication will work quickly.

Rita Bryan

(Pain level 8 at of 10)

Quick Update

2009-07-28T09:43:00.000-07:00

I just wanted to give every one a quick update. Late last week when speaking to Taylor's gasto doctor at University Of Cincinnati, Jennifer Garrett, I was telling her how Taylor was really having a rough couple of weeks. I told her that Taylor's pain management appointment was not until Aug 27, she found this to be unreasonable for Taylor and wanted to talk to
Dr. Schmulewitz (the professor at UC that is in charge of Taylor case).
Dr. Schmulewitz personal called and spoke to Dr. John Kelly (pain management doctor) about getting Taylor in sooner. And Thanks to God and Dr. Schmulewitz Taylor will now be seen by Dr. Kelly tomorrow July 29!

I will up date this blog after Taylor appointment with Dr. Kelly.

Rita Bryan

(pain level today 8 out of 10)

Thank you

2009-07-15T04:09:00.000-07:00

To every one that is reading this blog, Taylor, Ken, Evan, Blake and I would like to say Thank You. Knowing friends and family are praying and thinking of us helps Taylor and his family get through each day. We know in God's time, Taylor will be relieved from this pain.

This morning, I'm reminded of a time after Taylor accident in 2001, that I was upset and told Taylor, I didn't know why God let the accident happen to you, in return Taylor said;

"God let this happen to me, not my brothers, because God knows with him I can handle it"

I know with God, friends, and family's thoughts and prays, Taylor will get through this too.

Thank you
Rita Bryan

Neurologist Visit

2009-07-14T06:32:00.000-07:00

Thursday Taylor. Ken, and I went to see the Neurologist, Dr. Ty Brown. Our short visit consisted of a Neurological exam (that was normal) and a switch of Taylor's medication. Taylor is now on a low dose of Toiramate; another anti-seizure medication which seems funny to me because the Gabapentin is also an anti-seizure medication that Taylor already takes for the hypersensitive visceral pain. Dr. Brown said you could take both at the same time.

At this visit I tried to address the vitamins deficiency that Taylor was tested for in his teen years. Dr. Brown really did not want to do any tests, instead he said if you want to take vitamins that would be fine. I think the most frustrating thing with doctors today, is every doctor is a specialist and do not treat the whole body, but just their specific part. I really believe that all these symptoms started at the same time and some how are connected. I wish there was one doctor that would treat and connect all the symptoms, so that we don't have to go to so many different doctors that don't communicate. When Taylor was being treated at Children’s Hospital when he was a teen, we saw one doctor that looked every aspect of his life, from symptoms, to eating habits, to pain.

Pain is Taylor’s biggest battle, he is in pain 24/7 and after 8 months and five doctors later the Gastro doctors are going to send Taylor to a pain management specialist, but like all specialist there is a six week wait, his appointment is not until August 27. But I am just thankful that a doctor is going to address the pain. Taylor's pain level stays around 7 out of 10.

Taylor is trying to stay positive and wants every one around him to be positive too! Please feel free to send your positive thoughts and well wishes his way.

Thank you for your prays,
Rita Bryan

(pain level today 7 out of 10)

July 7, 2009 Doctor Visit

2009-07-07T17:32:00.000-07:00

Today Taylor, Ken, Stacey and I went to see Taylor's doctors at UC. Going in the car is very hard on Taylor, the bumps and just sitting up putting pressure on his stomach makes him nauseated and hurts his stomach. We saw Dr. Garrett today, she has increased his dosage of Gabapentin in hopes that it will continue to help. Taylor is on about 1/3 of the dosage that the Doctors believe will help him. Gabapentin has many side effects so we have to slowly increase the dosage over time. The Doctors are still hopeful that this will be the medication that will relieve Taylor of the nerve pain and spasms. Taylor is still having trouble sleeping, one of the side effects of Gabapentin is that it can make you very sleepy, so we pray that it will help Taylor get some rest at night too.

Dr. Schmlewitz and Dr Garrett are also going to refer Taylor to a pain management doctor tomorrow, Taylor also has an appointment with Dr Brown (nerologist) this Thursday.

Thank you for your prays,
Rita Bryan

(pain level today 7, 8 out of 10)

Getting To Know Taylor

2009-07-02T18:09:00.001-07:00

Taylor has always been a very strong, very athletic, but quiet young man, that loves to laugh, with a deep love for animals. He is passionate about God and his Country and would without a doubt be severing in the military if physically able.

Character If you want to know Taylor, you have to know his character. An author Malcolm Stevenson Forbes once said; "Our character is what we do when we think no one is looking." A story that his 5th grade teacher told me will give in a little insight into Taylor's character.

Growing up Taylor had a friend named Adam. Now Adam was an over weight, red headed kid that well, you could say he was different. Taylor really liked Adam and said he was one of the funniest kids he knew. As you could guess Adam was made fun of, but not for long.

The story starts in the first days of middle school. Mrs Burnside, Taylor's 5th grade teacher was on recess duty and saw in the distance a group of boys pushing and yelling. She walk towards the group and stop just short of the commotion. Meanwhile, Taylor, after eating his lunch, walked out to recess to find his friend Adam in the middle of a group of boys. The group of boys were pushing around and making fun of his friend Adam. Mrs. Burnside said, "Taylor ran and got between Adam and the group of boys that were bulling him.

"Taylor said, "If you mess with him (Adam), you are messing with me, and I don't think you want to do that".

You see, the boys knew Taylor from sports and when Taylor hit the field or court he was like another kid. His football and basketball teams went 4 years undefeated. He was one of the top swimmers on his swim team in his age group and in baseball he was named MVP by the high school coach and high school players, for his class. In track and field he took to the high jump like he was born for it and broke the Enon school track record at his very first meet. When it came to sports Taylor did not hold anything back. He once told his little brother," it does not matter what the score board says. If the other team is not crying after the game you did not win". This love for sports makes the next part of Taylor's life so devastating.

Accident a specific, identifiable, unexpected, unusual, and unintended external action which occurs in a particular time and place, without apparent or deliberate cause but with marked effects.

In July of 2001, between Taylor's 8th and 9th grade years of school Taylor had a tragic accident that would have marked effects on his life forever. It started as a wet cool summer morning with Taylor getting up and catching a ride to and from football weight training at the high school. When returning home he was met by a large delivery truck in our drive. The driver, being alone, asked Taylor if he could help move the metal roofing off his truck. Taylor said sure, and the two pick up the long stack of metal at each end. When they both cleared the truck the man let his end slip and fall to the ground leaving Taylor there to hold his end until he could no longer hold it by himself. What we would later find out was that the load of metal weighted over 350 lbs. When the bundle fell out of Taylor's hand it scraped down his leg cutting and severing all the tendons and cutting the muscle in his right foot. Thank God just 2mm to one side or the other he would have cut the artery and most likely lost his foot or his life.

For the next four years after many operations, Taylor bravely fought to regain the use of his leg and return to sports that he loved. But at the same time he had another battle to fight, the day after the accident, in the hospital, he started vomiting and having headaches. We took him to countless Doctors to try to find out what was wrong, but we could not find any doctor that knew the answer to his condition. Most Doctor's chalked it up to the accident and diagnosed him with, "Post Traumatic Stress Disorder". There was many mornings where Taylor went to school with a bag and he would vomit 4 or 5 times on the way to school, this went on all most everyday for 3 1/2 years.

In the spring of his Junior year of high school a new family doctor joined in on Taylor's case. She sent him to the Head ache clinic at Children's Medical Center, Cincinnati ,Ohio. At Children's, the doctor did some tests and believed he was suffering from, "migraines and silent migraines" (a silent migraine is when you would have vomiting and stomach pain with out the head pain). The doctor took Taylor off all medications and he was to only drink Gatorade and take vitamin B2. After months, he improved and for the next 4 years he seemed to be fine with just a few headaches now and then and no vomiting.

Courage is not one of the virtues, but the form of every virtue at it's testing point.
~ unknown

In November of 2008 Taylor's health began to be tested again. Taylor started to have stomach pain and severe nausea and vomiting. He went to see his family doctor and she put him on medication and said give this a few weeks to work and call me if you don't get better. In January of 2009 he returned to the doctor without relief, she in turn referred him to a Gastroenterologist for testing. At the first of February he went to see Dr. Szabo who performed an upper endoscope on him. His diagnosis was GERDS and reflux.

In the months to come Taylor did not respond to the medications and they continued to test him.

To date he has had 2 upper endoscopy with biopsies, ct scan of the abdomen, blood test, EKG, MRI of the brain, H. Polori Bacteria test, ultrasound of the gallbladder, HIDA scan of the gallbladder, stomach emptying test, Barium x ray, and countless test for other diseases. The only test to come back with a diagnosis was the upper endoscope finding the inflammation in his stomach (GERDS). At the end of March Taylor was vomiting so bad one Saturday morning that we took him to the back to the family doctor. He vomited about 10 times in the office before seeing the doctor with a pain level of 10, (10 being the highest pain). The doctor gave he some medication and said if he is not better in two hours take him in to the ER. Taylor did not get any relief in the two hours and we took him in the the hospital where he spent the next 5 days being tested.

For the next month Taylor went back and forth to Dr. Szabo, the Gastro doctor. And at the end of March Dr. Szabo sent Taylor the see Dr. Moon to remove his gallbladder. At the beginning of April Taylor had his gallbladder removed with no relief from his pain. A week later we returned to Dr Szbo office and at this time said she was out of ideas and sent him to University of Cincinnati and Dr.Schmulewitz, Professor of Medicine Digestive Diseases, Dr Schmulewitz and his physician Assistant Jennifer Garrett have seen Taylor on a weekly bases and are working with a diagnosis of hypersensitivity pain disorder.
(see link http://www.wellcome.ac.uk/en/pain/microsite/science4.html), with non ulcer dyspepsia and poor gastric relaxation. There are times that Taylor can not even stand a t-shirt to touch is stomach. They are looking for the right medication and one that Taylor can withstand the side effects. We are currently on medication #3 and as of last Sunday 6/24 increased dosage once (this is good). Taylor also takes medication for his nausea and vomiting and for his headaches. Other doctors seeing Taylor are: Dr. Brown a neurologist, and he has acupuncture once a week with Dr. Shilpa Dias, acupuncture seems to be helping with the headaches.

Taylor had to take off his Spring semester at NKU and is on disability from his job at Citi Bank. He hopes to return to both as soon as he can.

Thank you for reading about Taylor, please keep him in your prays. This blog will be updated, please check back and feel free to leave your positive comments and well wishes for Taylor.

Rita Bryan