September 30, 2009

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

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

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

“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

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

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

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)