Here it is the week of Thanksgiving. I have neglected posting for to long. Sorry :(
In Oct, the 7th - 14th we spent the week at the U of U for more Ketamine. This time we had a infusion buddy to spend the hours with. He was a 78 yr old man with CRPS in his hand. By the end of treatment he was doing great and had no pain. So this treatment works on so many people even ones who have had it for years. Travis had a tougher time and they used a lot higher dose of ketamine this time. In the end it worked and he has been pain free since Oct 13, 2011. This date is special since it is the same day he originally got hurt in 2010. They had been working on different ways to give the treatment. The first time they gave Trav boosts but this time it was just a gradual increase. They started him a lot higher dose. One point they did get it to high and his emotions became a train wreck. All over the place from high to low. That was hard to watch and deal with. Once they turned it down things mellowed out. No hallucinations this time.
Forward to Nov. Trav has a job as a bag boy at Smiths Marketplace. It has helped with getting him to use his leg and build strength back in it. School is still a hard thing but we are working at it. He has a lot of anxiety with all he has been through and lost the past year. He feels different then his friends and has lost a lot of friends so going back to class every day has been a struggle. His Dr. has a treatment plan to work through it. The school counselor and teachers have been so understanding and great to work with.
On our last visit to check up on how things are ( Nov 15). The physical therapist did some different treatments and it flared up the CRPS for a short time. So we know its still in the back ground. The work right now is to re train his brain that being pain free is normal. The hope is to get his brain to imprint a new picture of being pain free and using his leg normally. This can take time but he works at it everyday. No running. jumping or sports yet ( we learned that lesson). He can walk and use his leg pain free and that is huge!!!! No more Dr. visits until Jan 2012!!!!
Monday, November 21, 2011
Wednesday, September 28, 2011
Sept 28
well pain is back :( . we go down on Fri to the U and meet with the Main Dr. as to what our next plan of action will be.
The link to see Trav's news clip http://www.abc4.com/mediacenter/local.aspx?videoid=2856495
The link to see Trav's news clip http://www.abc4.com/mediacenter/local.aspx?videoid=2856495
Thursday, September 8, 2011
Wow is all I can say.
Its been a crazy few weeks! So the first treatment after re injury didn't work. He had lowered pain for a few hours was all. We went back for another treatment on Sept. 2. This time they cranked the Ketamine and Trav walked out of the office carrying his crutches. So far so good its Sept 8 now and no pain has returned. I hope it stays. No more wake boarding this summer!! I think he is just so grateful to have no pain again he won't try it anytime soon. He has to get his ankle stronger before trying more sports.
Well we went to Salt Lake yesterday and told Travis's story to KTVX 4 News. They filmed Trav and his PT doing some exercises. Then Trav was interviewed and so was Tony and myself. Then one of the Dr.'s who has cared for him. We are waiting for the date it will air but should be in the next few days. I hope that it will get some attention out there for this monster disease, maybe even help others suffering with it. I will post the link to it when I get more information.
Well we went to Salt Lake yesterday and told Travis's story to KTVX 4 News. They filmed Trav and his PT doing some exercises. Then Trav was interviewed and so was Tony and myself. Then one of the Dr.'s who has cared for him. We are waiting for the date it will air but should be in the next few days. I hope that it will get some attention out there for this monster disease, maybe even help others suffering with it. I will post the link to it when I get more information.
Friday, August 26, 2011
End of Summer
The MRI came back with no breaks or messed up cartilage. The Ultrasound was good also. The MRI did show some bone mass lose. That has worried me until talking to the staff today at the pain clinic and they feel it is normal with how long he hasn't used the leg to have some bone mass lost.
So we went to Salt Lake today and got a Ketamine treatment. They only did 4 hours and 35 mg per hour. A few bolists of 10 mg at once. It was not as crazy as others but he was good a loopy. He went in with a pain level of 7 and left with it about 5. Its now down to maybe 3. So our hope is he will continue to go down in pain. he should be on crutches for the next week at least but I have a feeling that isn't going to happen. he is grounded from major activity for a few weeks. Also NO wake boarding the rest of the summer. The dr. was happy that he got out and tried some activity also that the pain came back because he hurt his leg and not on its own. That is a promising sign that he might beat this monster.
School started yesterday for Travis's senior year. It wasn't the way he wanted to go back but he did. Hoping Monday will be easier for him. Our next pain clinic visit is Sept. 14 so hope all is good until then.
Thursday, August 4, 2011
Aug 2011
So we went back for therapy on the 2nd. Trav is doing awesome!!! Gaining strength everyday. It had been 2 weeks since our last visit and Elaine could see a difference with his walking and over all use. Still can't jump or do much on uneven ground. He can jump while in a pool and try running in the pool. So that and a few other exercises he was told to try things and have fun. We go back on the 16th.
So yesterday Trav got a call from Joey a nurse at the U of U. They want a good story to feature next month on the news to promote National Pain Awareness Month. There is a week they feature chronic pain. So they thought of Trav and his story. I called them back today to get the scoop and give my ok for it. They want to film him in school, home and rehab. Go through his whole story and how they found something to help. So excited for him and the hope of helping others with this nasty disease. I will keep everyone updated as I learn when this is going to be.
So yesterday Trav got a call from Joey a nurse at the U of U. They want a good story to feature next month on the news to promote National Pain Awareness Month. There is a week they feature chronic pain. So they thought of Trav and his story. I called them back today to get the scoop and give my ok for it. They want to film him in school, home and rehab. Go through his whole story and how they found something to help. So excited for him and the hope of helping others with this nasty disease. I will keep everyone updated as I learn when this is going to be.
Wednesday, July 20, 2011
Wed July 20, 2011
We went back to the U for Travis's 1st physical therapy visit since the infusions last week. Still at a very low pain level and a lot of the time he is pain free. GREAT!!! So he got some exercise to help stretch and strengthen his leg. Its so weak from no use really since injury in Oct 2010. Today was also his fellow Dr.'s last week so we got to talk for a few minutes. He is moving to Oklahoma soon, he will be very missed by Trav. Not sure we would have got the results we did if he didn't fight to get the Ketamine bumped up when he did. He also told us that the Dr.s involved would be writing some papers to publish on all that Trav has been thru. Travis was the first outpatient ketamine treatment they had done at the U of U Pain Clinic. They have done them in the hospital but not the office. So we hope that this can help others dealing with this nasty monster. I was able to get the video that they took of Trav and the first time he was able to walk. Its about 40 minutes long else I would post it here. If I can figure out how to take pieces of it I will post it. It goes from him doing stretches and talking about wanting to walk again and if he remembers how to walking and the emotion are incredible. I bawled again watching it.
Sleep has been a little of a challenge still. Getting better each night for him. Stairs are tricky since his leg is so weak. All of that will come. Tomorrow will be a week with no crutches!!!
We will be going back once a week for the next month so I will post as much as I can about all he is going thru getting back to life.
Might give the pool a try this weekend and he was finally able to walk barefoot on grass. What a great feeling!!!
Sleep has been a little of a challenge still. Getting better each night for him. Stairs are tricky since his leg is so weak. All of that will come. Tomorrow will be a week with no crutches!!!
We will be going back once a week for the next month so I will post as much as I can about all he is going thru getting back to life.
Might give the pool a try this weekend and he was finally able to walk barefoot on grass. What a great feeling!!!
Friday, July 15, 2011
Remission!!!1
It feels so good to be home. I have missed my puppies and my bed. OK I have missed Tony and Justin too.
So today Trav walked into the pain clinic carrying his crutches. So proud of him!!!! His pain flared to a 4 last night but that is do able, he also slept. They paraded him thru the clinic to see everyone. They had shown his video in the morning meeting and it made him a clinic celebrity. So they then took us too the infusion room and started the infusion. He was soon pain free 100%. we went on a few other walks around the clinic to check color change and pain. All is good with both. He finally got to thank Dr. Junkins and Elaine his physical therapist for all they have done and tried to get him to this point. It may have taken a few months to get into the UofU Pain Clinic but they are the BEST!!!
So Travis is in remission!!! We hope it will last and there won't be any need for follow up infusions. We will be going back to the clinic 1x a week for the next month to monitor him and do therapy. The comforting part is we know what works now and won't have to go thru all the treatments to get to this point again.
I will update with how things are going and the therapy he is doing so don't forget to check back. Also Travis will be posting soon with how this has been for him. Thanks again for all the love and support.
So today Trav walked into the pain clinic carrying his crutches. So proud of him!!!! His pain flared to a 4 last night but that is do able, he also slept. They paraded him thru the clinic to see everyone. They had shown his video in the morning meeting and it made him a clinic celebrity. So they then took us too the infusion room and started the infusion. He was soon pain free 100%. we went on a few other walks around the clinic to check color change and pain. All is good with both. He finally got to thank Dr. Junkins and Elaine his physical therapist for all they have done and tried to get him to this point. It may have taken a few months to get into the UofU Pain Clinic but they are the BEST!!!
So Travis is in remission!!! We hope it will last and there won't be any need for follow up infusions. We will be going back to the clinic 1x a week for the next month to monitor him and do therapy. The comforting part is we know what works now and won't have to go thru all the treatments to get to this point again.
I will update with how things are going and the therapy he is doing so don't forget to check back. Also Travis will be posting soon with how this has been for him. Thanks again for all the love and support.
Thursday, July 14, 2011
More from 7/14.
So Trav's pain has been down all day!!!! The highest it has gotten has been a 4 !!!!!!!!!!!!!!!
I have a few more videos to share.
I have a few more videos to share.
Day 4 is WONDERFUL!!!!
Went this morning to the hospital not expecting much different then yesterday. Pain was at a 9 to 10 on a scale from 1-10 being the worst. They U of U Dr.'s have a meeting everyday to discuss the patients. So in this meeting Dr. Sri discussed with the others about upping his dose even though he was at the highest they should go already. They got the ok for more meds so that they didn't run out by upping his dose. So the day started at 20 mg. After 20 min they boosted him with 10 mg over 10 minutes. Then upped it to 35 per hour. After about another 45 min they upped it to 40 per hour.
Within the next few minutes Lynn had Trav dangle his feet off the bed and feeling the carpet. Then we moved to standing and his first steps being pain free in 8 months. The whole room was in tears!!! Sri was on the phone trying to reach Dr. Junkins who is the main Dr. over Travis. His regular PT Elaine was out sick so they got a hold of her and she was able to talk to Trav. It was tears of joy from everyone that has watched all the other treatments fail and Trav's hope go down with each fail. Trav hugged and thanked everyone for all they had done to get him to this point. They got it all on video to show everyone and Trav encase he didn't remember.
So after celebrating they had him lay back in bed and rest to finish off the infusion. No one knows if the pain will return but we are all hopeful that this is the starting point of remission. So far some of the pain has come back but thew level is at a 2. His ankle is sensitive but still touchable. Most of the pain is from not being used in so many months. He will take it easy and slowly get back into using it. We still have 1 more day of infusions but hope that it just makes his brain believe even more he isn't hurt and can use this leg.
Miracles do happen and prayers can be answered as long as you believe!!!!
These are links to the video I took today. Pain free is me touching Trav's leg for the first time without pain.
pain free
This one is of his first steps. When we had started today Boone had asked him what he hopped this would do and Trav was scared that he had forgot how to walk. Just like riding a bike he didn't forget.
Walking
Wednesday, July 13, 2011
Day 3
The nurse had started him at 20 mg per hour which is as high as she can set it. The Dr. came in about 45 min later and upped it to 25 mg per hour. He got a little goofy but really didn't have any effects like the past 2 days. so with 2 hours left the Dr. raised it 1 more time to 30 mg. per hour. That is as high as he dares go in office. He did feel that boost. Still no kitties or silly things like the first day. I am ok with that since it sucks seeing your kid stoned. I didn't notice the flairs in pain that he had the first 2 days but Trav says he had a few.
The nurse flushed the remaining Ketamine from the iv tube and that gave him a boost. So he did get about 10-15 mins of "no pain"but we didn't get much exercise out of it. He needs about 4 hours of that feeling every day. To do that he will have to be hospitalized. which we might end up doing but will decide that at the end of the week. I just hope he can get something out of this that will last and give him some hope that he can beat this disease.
I think there has been a few very small improvements but convincing Trav has been hard. So fingers crossed and still hoping for some changes tomorrow and Fri.
The nurse flushed the remaining Ketamine from the iv tube and that gave him a boost. So he did get about 10-15 mins of "no pain"but we didn't get much exercise out of it. He needs about 4 hours of that feeling every day. To do that he will have to be hospitalized. which we might end up doing but will decide that at the end of the week. I just hope he can get something out of this that will last and give him some hope that he can beat this disease.
I think there has been a few very small improvements but convincing Trav has been hard. So fingers crossed and still hoping for some changes tomorrow and Fri.
Tuesday, July 12, 2011
Day 2
Ok today was not as fun as yesterday with hallucinations. I was good with it and he doesn't remember so it works .I did have 2 heads for a short time. Trav still felt like we had only been there maybe an hour when we had been at the clinic for 5 hours. The ketamine is causing his pain to flare while he is on it. Not sure the exact reason but it was brought up that its his brain fighting the drugs. That makes it hard to have him move it. But he doesn't remember some of the pain. The Dr.'s say that the pain control will be slow coming but he should be feeling something soon. He is topped out on the dose the can give him in the office and for the amount of time they want him on it. We did notice that he was able to lay with his back and hips twisted. So that was good and we took that as a first step.
I tried to take his mind off of things today so we went to the zoo. He wouldn't use a wheelchair so he was on his crutches. Bad mistake his hands are so sore and so is his leg from it hanging down all day. But on the good side he is tired tonight and might sleep. Have to see what the morning brings and we may spend tomorrow resting after the hospital.
My hopes are still high that this will work and bring him some relief.
I tried to take his mind off of things today so we went to the zoo. He wouldn't use a wheelchair so he was on his crutches. Bad mistake his hands are so sore and so is his leg from it hanging down all day. But on the good side he is tired tonight and might sleep. Have to see what the morning brings and we may spend tomorrow resting after the hospital.
My hopes are still high that this will work and bring him some relief.
Monday, July 11, 2011
Monday 1st treatment
OK we had to be at the clinic by 8:30am. Didn't get started with the injection until 9:30. Had to do an exam and get the IV started. They dosed him with 10 mg and a IV drip of the same amount per hour. Within a few minutes the Ketamine started to work. He got the giggles and then would be tired then giggles again. After 45 minutes he was back to normal so they upped his dose to 15 mg per hour. Still was feeling normal and we did a few exercises. That flared his pain. So again upped his dose to 20 per hour. By 12 noon the dose was up to 25 per hour. This is when he started to see the ceiling move like he was playing "frogger". Seeing double of everything. Had a vivid dream of mini kitties pushing root beer cans up his belly. Yes he was very stoned. Not sure I liked seeing it but at the same time it was funny. He would flip his head from side to side and think he was flipping it super fast. Just glad he didn't see any scary things.
The treatment didn't do anything for his pain today and that was expected. It can take a couple doses to help reset his brain. So we should know if its going to help by Wed. He reacted just like they had hoped and no bad hallucinations. They are working on dose and how it effects him today. Tomorrow he will start at the 25 per hour dose and go from there.
He has crashed hard now and I'm just letting him sleep its rare he sleeps this hard. He had 3 doses of Atavan also to help relax him so that isn't hurting the sleeping either.
The treatment didn't do anything for his pain today and that was expected. It can take a couple doses to help reset his brain. So we should know if its going to help by Wed. He reacted just like they had hoped and no bad hallucinations. They are working on dose and how it effects him today. Tomorrow he will start at the 25 per hour dose and go from there.
He has crashed hard now and I'm just letting him sleep its rare he sleeps this hard. He had 3 doses of Atavan also to help relax him so that isn't hurting the sleeping either.
Sunday, July 10, 2011
Sunday
Well we will be heading to Salt Lake soon to live with my sisters Kels and Alli. Thanks guys for letting us crash at your place for the next week. Travis 's appointment is at 8:30am everyday until Fri.
Not sure how he is feeling about it all yet other then hoping it works. Something has got to give this kid some relief!!! I am feeling nervous but also very hopeful. I hate the thought of putting him through this but at the same time he has been through enough for a lifetime. Fingers and toes are all crossed that this does the trick.
I will update every night to let everyone who cares in on the fun.
Thanks again to everyone who helped with the yardsales so we could do this. Love you all!!!
Not sure how he is feeling about it all yet other then hoping it works. Something has got to give this kid some relief!!! I am feeling nervous but also very hopeful. I hate the thought of putting him through this but at the same time he has been through enough for a lifetime. Fingers and toes are all crossed that this does the trick.
I will update every night to let everyone who cares in on the fun.
Thanks again to everyone who helped with the yardsales so we could do this. Love you all!!!
Thursday, June 23, 2011
Next Treatment
Trav's next treatment is set for July 11-15, 2011. It will be another week long stay in Salt Lake City and the U of U Pain Clinic. This time he will be receiving a IV treatment daily of ketamine. Ketamine is a drug used to put people under for surgery. in lower doeses it can help reset CRPS patients nerves and have pain controlling effects. We will be at the clinic for 5-6 hours daily while he is monitored with the treatment. Hope this is the one to do the trick and get him some relief. I have read a lot of good things about it and very little bad. The worst I have read is he can have hallucinations while on it. Also it has a 20 % chance of doing nothing to help. So I will keep everyone updated as it gets closer.
Sunday, June 12, 2011
The first post from Travis
So I'm sure it's nice to hear from my mom, but I figured I would share what it's like to actually be the 17 year old that's going through this. Luckily I've had an amazing support group! Without my girlfriend, family and friends who knows where I would truly be right now. Although things could be going worse I'm sure I speak for everybody with CRPS that this isn't exactly a walk in the park. Over the last eight months I've gone from a kid who would try to play sports and be outside as much as I possibly kid to somebody who isn't even half that active. Since it's summer some of that is starting to change but I'm not sure if I'll have all of that drive back again.
So first I'll try to explain the pain that I feel every second of every day. I've found that it's kind of impossible to find one way that explains how the pain acts all the time. My leg is so sensitive that even when somebody brushes up against the hairs on my leg it feels like I was slapped on a really bad sun burn. The inside of my leg is a totally different feeling I have the most intense aching feeling all the way to the bone and it never stops. My foot and leg always feel ice cold while it's burning inside. My average pain on a normal day is a 9/10. I can't wear pants and even wearing shorts is uncomfortable. Stress adds to this pain. And the frustration I've been going through from none of the treatments working at all so far has really increased it too.
My sleeping pattern has gone crazy since I was diagnosed with CRPS I'm usually awake until about three or until my body decides to shut itself off and force me to fall asleep. My attention span is so short that it's often hard to sit through a normal movie, I get so wound up and stressed out over the smallest things too.
The hardest part about living with chronic pain is having to grow up so fast. While most of my friends are living their high school lives I'm going to the hospital or I'm in too much pain to do what they are doing. I can't go to the gym and play basketball or go boating and wakeboard like I used to do. So I've been forced to find other things to consume my time. Most of these things don't stick around for too long because my attention span doesn't last long enough to enjoy them. I sit here and think to myself why did this happen to me?
But while most people will call me crazy to say that something that has put me in the hospital, taken my life away from me and put me in constant pain has had some good things come from it too. I've grown closer too some very special people in my life (you know who you are), I've figured out how lucky I used to be and my whole outlook on life has changed!
If I could take one lesson from all the frustration, grief and anger is don't take what you have for granted because at any given moment it can be taken away and I think everybody learns this at some point in their life. Unfortunately some learn sooner than later.
So first I'll try to explain the pain that I feel every second of every day. I've found that it's kind of impossible to find one way that explains how the pain acts all the time. My leg is so sensitive that even when somebody brushes up against the hairs on my leg it feels like I was slapped on a really bad sun burn. The inside of my leg is a totally different feeling I have the most intense aching feeling all the way to the bone and it never stops. My foot and leg always feel ice cold while it's burning inside. My average pain on a normal day is a 9/10. I can't wear pants and even wearing shorts is uncomfortable. Stress adds to this pain. And the frustration I've been going through from none of the treatments working at all so far has really increased it too.
My sleeping pattern has gone crazy since I was diagnosed with CRPS I'm usually awake until about three or until my body decides to shut itself off and force me to fall asleep. My attention span is so short that it's often hard to sit through a normal movie, I get so wound up and stressed out over the smallest things too.
The hardest part about living with chronic pain is having to grow up so fast. While most of my friends are living their high school lives I'm going to the hospital or I'm in too much pain to do what they are doing. I can't go to the gym and play basketball or go boating and wakeboard like I used to do. So I've been forced to find other things to consume my time. Most of these things don't stick around for too long because my attention span doesn't last long enough to enjoy them. I sit here and think to myself why did this happen to me?
But while most people will call me crazy to say that something that has put me in the hospital, taken my life away from me and put me in constant pain has had some good things come from it too. I've grown closer too some very special people in my life (you know who you are), I've figured out how lucky I used to be and my whole outlook on life has changed!
If I could take one lesson from all the frustration, grief and anger is don't take what you have for granted because at any given moment it can be taken away and I think everybody learns this at some point in their life. Unfortunately some learn sooner than later.
Saturday, June 11, 2011
June 2011
Here we are to June 2011. We have gone in for the week long treatments.
The 1st day was great! They were able to get it numb but still able to work it. So he had a small PT session. Now all we are looking for is some not total pain relief and each time they dose it to get longer relief. We go home for the weekend and then start the week long on Monday. when they dose it Mon it doesn't do half of what it did Fri. Thinking the catheter could have moved some they try on Tues. and get the same effect. Play with it and redo it on Wed they get nothing. Not any part goes numb. Same story on Thurs. look at it again under xray and its in the perfect place. Give him a different drug and it knocks him out. Asleep and snoring!!! No pain relief just sound asleep. So after sleeping a little off we head back to my sisters where we have been staying and he sleeps 4 more hours. Fri comes and they dose it with half a dose and the same thing he is so tired can't keep his eyes open. So this tells them that the drugs have been going straight into his system and not to the desired nerve root. dr. says "Its lucky he isn't a girl as having a baby epidural wouldn't work". He got a little tingling in his hands one day and that is why. So with treatment plan 3 not working where does that leave us?
Well they sent us home yesterday with a plan to get moving no matter the pain. Try the best he can to work through it. So far they have all wanted him to stop if the pain flared. Still on crutches and not walking full weight but to try small amounts of walking motion and light touches. Don't over do but try hard. This is the step we are on and hoping its the last. We know there are more medical treatments but if we can avoid them we will.
The next medical step is a ketamine infusion. Yes it scares me but it has been around a long time. Its not a new drug. He will be monitored with the whole process. It has the chance of making him pain free and that is a chance we have to take. We hope for just a reduced amount of pain so he can move more. I can't stand by and watch my healthy active athlete turn into a home bound with no life any longer. Everything I read claims keeping physical is the best for it. If this treatment will allow him enough pain relief to get back to light activity then more he will be on his way to remission.
The 1st day was great! They were able to get it numb but still able to work it. So he had a small PT session. Now all we are looking for is some not total pain relief and each time they dose it to get longer relief. We go home for the weekend and then start the week long on Monday. when they dose it Mon it doesn't do half of what it did Fri. Thinking the catheter could have moved some they try on Tues. and get the same effect. Play with it and redo it on Wed they get nothing. Not any part goes numb. Same story on Thurs. look at it again under xray and its in the perfect place. Give him a different drug and it knocks him out. Asleep and snoring!!! No pain relief just sound asleep. So after sleeping a little off we head back to my sisters where we have been staying and he sleeps 4 more hours. Fri comes and they dose it with half a dose and the same thing he is so tired can't keep his eyes open. So this tells them that the drugs have been going straight into his system and not to the desired nerve root. dr. says "Its lucky he isn't a girl as having a baby epidural wouldn't work". He got a little tingling in his hands one day and that is why. So with treatment plan 3 not working where does that leave us?
Well they sent us home yesterday with a plan to get moving no matter the pain. Try the best he can to work through it. So far they have all wanted him to stop if the pain flared. Still on crutches and not walking full weight but to try small amounts of walking motion and light touches. Don't over do but try hard. This is the step we are on and hoping its the last. We know there are more medical treatments but if we can avoid them we will.
The next medical step is a ketamine infusion. Yes it scares me but it has been around a long time. Its not a new drug. He will be monitored with the whole process. It has the chance of making him pain free and that is a chance we have to take. We hope for just a reduced amount of pain so he can move more. I can't stand by and watch my healthy active athlete turn into a home bound with no life any longer. Everything I read claims keeping physical is the best for it. If this treatment will allow him enough pain relief to get back to light activity then more he will be on his way to remission.
May 2011
Well we have our first visit at the U of U Pain Center. They take a different approach to pain treatment then other clinics. They treat the whole body and mind. So the first visit he see's a psychologist, physical therapist and a group of dr.'s. The have 3 main MDs in the clinic and then each MD has a few fellows under him. The usual plan is you visit with all and then come back a week later and get the plan of treatment. They felt Travis's case was severe enough to start treatment same day. So he gets put into a therapy program and meds changed. The add a new one that will help boost his bones and up his other nerve drugs.
Everything goes great until the" bone booster" drug has a rare side effect and sits in his esophagus and rubs it raw. He starts with acid reflux issues and within 24 hours is having full spasms in his esophagus. He ends up dehydrated and 2 trips to the ER. Tells me that our small town hospital has NO idea what CRPS is. I almost had to deck the ER dr. after I tell him to not touch Trav's right leg due to hypersensitivity from CRPS and he grabs it 2 times.After no improvement we have a scope done in Davis Hospital which is where our primary care dr. is at. Its about 50 miles from home. They have a more of a clue down there. Yes he has road rash for a esophagus. They give him some more meds but the next day he is still in so much pain he can't even swallow his own spit without spasms. So we go back to Davis Hospital and check him in for a 2 night stay.
That problem solved we go back to the U of U pain clinic for a full epidural. This gives him a few hours of pain relief. The pain came back but he was able to do a little PT while it was numb. So they decide to try a different type of epidural where they leave the catheter in a week and dose it everyday.
Everything goes great until the" bone booster" drug has a rare side effect and sits in his esophagus and rubs it raw. He starts with acid reflux issues and within 24 hours is having full spasms in his esophagus. He ends up dehydrated and 2 trips to the ER. Tells me that our small town hospital has NO idea what CRPS is. I almost had to deck the ER dr. after I tell him to not touch Trav's right leg due to hypersensitivity from CRPS and he grabs it 2 times.After no improvement we have a scope done in Davis Hospital which is where our primary care dr. is at. Its about 50 miles from home. They have a more of a clue down there. Yes he has road rash for a esophagus. They give him some more meds but the next day he is still in so much pain he can't even swallow his own spit without spasms. So we go back to Davis Hospital and check him in for a 2 night stay.
That problem solved we go back to the U of U pain clinic for a full epidural. This gives him a few hours of pain relief. The pain came back but he was able to do a little PT while it was numb. So they decide to try a different type of epidural where they leave the catheter in a week and dose it everyday.
Few pics
These are of his foot back in March 2011. It has now moved up his leg and he gets the purple black/blue color up to almost his knee. his ankle swells up huge.
Feb 2011
So we have a diagnoses but what does that mean? The first treatment that is tried are sympathetic nerve blocks and lumbar nerve injections. This is suppose to help block the nerve and ease the pain so he can do physical therapy. Therapy being the best treatment. Keep the affected part moving and functioning. Easy to say when you are not in burning pain and the slightest touch, breeze or temperature change puts you in even more pain. So over the next 3 weeks Trav goes through 3 different nerve blocks. None have helped at all. He gets put on more and more drugs that are not helping either. We have been realizing that not many people in our small town know or have even heard of CRPS. The pain dr. has treated some but never treated anyone with it like Travis has.
Its March 2011 and no relief. So we get referred to the U of U Pain Clinic in Salt Lake City, UT. 3 month wait to get in, so what to do until then? Trav has been out of school since Jan. and has had his classes cut down to 2 a day home schooled. we search everything online and find another pain clinic in Salt Lake. The Dr. had trained at the U of U. So we set up a visit with them. Before our first visit there we end up at the Uof U ER to see if they can get him into the pain center any faster. They help us to understand that pain meds really don't work on CRPS as its a neurological issue and it some how blocks what makes the drugs work. They give Trav a IV of dilaudid which is stronger the morphine and he got minor relief for about 30 min. No help with getting into the pain clinic any sooner.
On to Summit Pain Center. They tried another nerve block so that totaled 4 blocks that didn't work. They suggested a nerve stimulator be implanted in his back as the next and final step. But also said they were not sure that would even help. Only other suggestion was to change up his meds to a different nerve medication.
Its March 2011 and no relief. So we get referred to the U of U Pain Clinic in Salt Lake City, UT. 3 month wait to get in, so what to do until then? Trav has been out of school since Jan. and has had his classes cut down to 2 a day home schooled. we search everything online and find another pain clinic in Salt Lake. The Dr. had trained at the U of U. So we set up a visit with them. Before our first visit there we end up at the Uof U ER to see if they can get him into the pain center any faster. They help us to understand that pain meds really don't work on CRPS as its a neurological issue and it some how blocks what makes the drugs work. They give Trav a IV of dilaudid which is stronger the morphine and he got minor relief for about 30 min. No help with getting into the pain clinic any sooner.
On to Summit Pain Center. They tried another nerve block so that totaled 4 blocks that didn't work. They suggested a nerve stimulator be implanted in his back as the next and final step. But also said they were not sure that would even help. Only other suggestion was to change up his meds to a different nerve medication.
A little about CRPS/RSD
For many years the condition has been known as RSD or Reflex Sympathetic Dystrophy. The new name is CRPS or Complex Regional Pain Syndrome. Its a chronic neurological syndrome characterized by:
This is a great link to find out more info on CRPS.
Now its rare but at the same time its not. A lot of people have a mild case or are just not diagnosed correctly. Its different on everyone and treated different too. That to me is the hardest thing to deal with is its not just 1 form of treatment and you get relief.
- severe burning pain
- pathological changes in bone and skin
- excessive sweating
- tissue swelling
- extreme sensitivity to touch
- color change in the effected area
This is a great link to find out more info on CRPS.
Now its rare but at the same time its not. A lot of people have a mild case or are just not diagnosed correctly. Its different on everyone and treated different too. That to me is the hardest thing to deal with is its not just 1 form of treatment and you get relief.
How it began...
This is told from my point of view (I'm Mom). I hope to get Trav to write here but we will see.
Its Oct 2010 and Trav has been playing in a rec basketball league with his friends. Sky View team tryouts are about 3 weeks away. Not sure the exact details of the play but he went for the ball and a big kid from the other team came down on his ankle. My heart sank as I watched him on the floor. I was hoping it was nothing but a simple sprain but in my heart I knew it was more. Went to the ER that night, nothing was broke so that was a good sign. The next week still no improvement so I got an appointment with a local foot Dr. Trav got to wear a boot and crutches for a while.
November rolls around things still are not improving so I schedule an appointment in Salt lake with a orthopedic Dr. Few days before that Trav is in physical Therapy and has a new pain which turns out to be blood clots. We get scans done to diagnose that and find out how deep they are. Also get a MRI to check on the ankle. Travis's main dr. starts him on blood thinners. what a treat for anyone but a kid this sucked!!! Shots every 12 hours and then basically feeding my son rat poison pills. Not a good feeling. :(
We get into the new dr. and he says everything looks great. Basically Trav has a 3rd degree high ankle sprain. Should have blown his ankle out but he has very loose ligaments and that saved him. No reason as to why he got blood clots but it can happen. he should be good within a month to go back to basketball. So for the next few weeks he does all he can to strengthen and get back. He has a late tryout for the school basketball team and on the 2nd day he rolls the same ankle off another guys foot.
So we are back to the Dr. and in the boot. Looks like no basketball for his junior year. Its Christmas and its the worst we have ever had. The one thing about Travis is all he has wanted since he was maybe 5 was to play ball in high school. He has worked daily at the gym and in the front yard on his game. He played other sports but basketball is and always has been his first love. he feels like it has all been taken away and what could get worse.
Well it does get worse. He develops more blood clots. So back on blood thinners for 3 months minimum. So even if the ankle gets better no sports. We go back to the ankle Dr. after a few weeks of no improvement, if anything its worse. Its swollen and sore. Why isn't this getting better? he mentions a rare condition called RSD or CRPS. But doesn't want to do anything yet for it. So I am not one to just wait and I research it on the internet and talk to his primary care Dr. about it. He has seen it and says it sounds like it could be that. we get into the local pain clinic the first of Feb. to have it looked at.
The local pain clinic has seen this and he is positive that its RSD/ CRPS. Our next step is nerve blocks. The faster you can treat this condition the better your chances of remission are.
Its Oct 2010 and Trav has been playing in a rec basketball league with his friends. Sky View team tryouts are about 3 weeks away. Not sure the exact details of the play but he went for the ball and a big kid from the other team came down on his ankle. My heart sank as I watched him on the floor. I was hoping it was nothing but a simple sprain but in my heart I knew it was more. Went to the ER that night, nothing was broke so that was a good sign. The next week still no improvement so I got an appointment with a local foot Dr. Trav got to wear a boot and crutches for a while.
November rolls around things still are not improving so I schedule an appointment in Salt lake with a orthopedic Dr. Few days before that Trav is in physical Therapy and has a new pain which turns out to be blood clots. We get scans done to diagnose that and find out how deep they are. Also get a MRI to check on the ankle. Travis's main dr. starts him on blood thinners. what a treat for anyone but a kid this sucked!!! Shots every 12 hours and then basically feeding my son rat poison pills. Not a good feeling. :(
We get into the new dr. and he says everything looks great. Basically Trav has a 3rd degree high ankle sprain. Should have blown his ankle out but he has very loose ligaments and that saved him. No reason as to why he got blood clots but it can happen. he should be good within a month to go back to basketball. So for the next few weeks he does all he can to strengthen and get back. He has a late tryout for the school basketball team and on the 2nd day he rolls the same ankle off another guys foot.
So we are back to the Dr. and in the boot. Looks like no basketball for his junior year. Its Christmas and its the worst we have ever had. The one thing about Travis is all he has wanted since he was maybe 5 was to play ball in high school. He has worked daily at the gym and in the front yard on his game. He played other sports but basketball is and always has been his first love. he feels like it has all been taken away and what could get worse.
Well it does get worse. He develops more blood clots. So back on blood thinners for 3 months minimum. So even if the ankle gets better no sports. We go back to the ankle Dr. after a few weeks of no improvement, if anything its worse. Its swollen and sore. Why isn't this getting better? he mentions a rare condition called RSD or CRPS. But doesn't want to do anything yet for it. So I am not one to just wait and I research it on the internet and talk to his primary care Dr. about it. He has seen it and says it sounds like it could be that. we get into the local pain clinic the first of Feb. to have it looked at.
The local pain clinic has seen this and he is positive that its RSD/ CRPS. Our next step is nerve blocks. The faster you can treat this condition the better your chances of remission are.
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