Botox

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

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

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

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

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

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