May 4, 2016

An update on Evan

Last week was a rough one. We had a big scare with Evan. We are not out of the woods yet but this part of the forest is a lot better than the part we were in last week. Here's what happened and an update:

Tuesday, April 19th - At bedtime, Evan mentioned that his left foot was hurting. He said he had twisted it at recess that day. He didn't say anything after school and then he had basketball practice that night and went on a 3 mile hike with his scout troop after that. I thought he probably just pulled something and told him to go to bed.

Wednesday, April 20th - He woke up saying that his foot was still hurting. I thought he would be fine and sent him to school. After school, he was limping a lot on it. It was really bothering him. We put him to bed that night a little concerned about it.

Thursday, April 21st - He got up and didn't want to walk on it. He said it hurt too bad so he hopped around on the right foot. Uh oh. Maybe we should have listened to him sooner. We decided to keep him home from school and take him to Med 7 to have it x-rayed. Here he is at Med 7:

They didn't see anything on the x-rays so they decided it was probably sprained. They gave him a brace and told him to stay off of it. He spent most of the weekend on the couch with it elevated.

Sunday, April 24th - that night he was crying it was hurting so bad. We thought that maybe it wasn't a sprain because that should have felt better by now, not worse. 

Monday, April 25th - I dropped T off at preschool at 8:30 and went straight to the pediatrician's office and asked if they could get him in. They were able to see him at 9:15 - perfect. Kurt met us there. I knew the pediatrician wouldn't really be able to do anything for him except refer him to a specialist, which is what I wanted and what he did. He referred us to the podiatrist that did Evan's foot surgeries a few years ago. I called them when we left the doctor's office at 9:40. I explained what was going on and they said they could see him at 10 am! That day! As in like 20 minutes! What?! It takes forever to get in to see specialist. We were so grateful! We went straight there.

Evan was still hopping around on his right foot. The parking lot at the podiatrist's office is much bigger and we had to park WAY out there. I decided to give Evan a piggy-back ride so he didn't have to hop that far. He is getting to be a big kid now but not so big that I couldn't handle it. 

Kurt met us at the podiatrist's office. The podiatrist came in and examined Evan's foot. He noticed a few things - there was an extreme temperature difference between Evan's left and right feet, his left foot had blotchy skin and it was extremely painful to the touch - he couldn't even stand for a sock to be on it. The doctor said he thought Evan had a condition called Complex Regional Pain Syndrome. Click (here) for the Mayo Clinic's page on it or (here) for the WebMD page about it. You can't test for this syndrome but Evan had the symptoms. He wasn't totally sure Evan had it but if he did, we had to act fast. We had never heard of that syndrome before but the doctor seemed quite concerned about it but it sounded like it was treatable. We really weren't too sure what we were dealing with. The doctor said early treatment is key to helping this syndrome and said that Evan needed to start physical therapy immediately. He called the physical therapist and they said bring him right over. We were in shock a little bit. Everything was happening so fast. We think our moms were in heaven pulling some serious strings to get Evan into 3 appointments all within a few hours of each other. I'm pretty sure that's unheard of!

At the podiatrists office

We took Evan right over to the physical therapy place. It was 11:30 when we got there and they said they could see him at 1 pm so we went for some lunch and to try to catch our breath a little bit. We tried to research this syndrome at lunch but still didn't understand exactly what we were dealing with.

 Evan at physical therapy.

After the physical therapist had examined and worked with Evan, I asked if she thought Evan did have that syndrome and she said yes and that it was in the early stages, which was a good thing. Evan had already lost some mobility in his ankle and in the flexibility of his toes. The physical therapist said he needed to use crutches so that he could use the foot when he walked but not put all his weight on it. Since we had donated the crutches he had after his foot surgeries last year, we stopped at a medical supplies store on the way home and bought some more. Evan thought one of these looked like more fun than crutches:

Back on crutches - lesson learned: don't get rid of crutches with boys in the house. 

Monday night, Kurt and I spent a lot of time on the internet trying to understand this syndrome. We knew that we had to take what we read and step back a little bit. The internet is a really good place to get overwhelmed and scared and we tried really hard not to overreact to what we were reading. That is easier said than done when you read things like: not curable, lots of pain, pain management, life long, spreading to other nerves, etc. We went to bed very concerned about the future of our sweet, little, active 10 year old. 

The very rough explanation of this syndrome is that the nerves get stuck in panic mode. They overreact to something (like a sprain) and are constantly sending pain signals to the brain. It is a very painful condition and requires a team of doctors to treat.

Tuesday, April 26th - Evan woke up and got ready for school. When he came downstairs I noticed that his feet were different colors.

The nerves can effect the circulation and I was really worried when I saw this. I emailed the picture to his podiatrist. I kept Evan home from school because he was in a lot of pain. Tylenol and Motrin don't work on the nerves so I didn't have anything to relieve the pain for him. 

The doctor called a little later that morning and we talked about what the next steps were. He said Evan needed a team of doctors, just like we had read on the internet. He needed: a physical therapist (which he had seen the day before), he needed a neurologist, he needed a pain management specialist (the doctor had called one but they don't treat children so we needed to find one that specialized in treating children in chronic pain) and he needed a cognitive therapist (this would be for the whole family to learn how to deal with a family member in chronic pain). He talked about getting him into Shriner's in Sacramento because they have all the pediatric doctors down there. He also spoke about a hospital in Seattle that helps with this condition. 

We were in shock! Tuesday was a rough day. Kurt and I were both upset most of the day. Those are just not words you want associated with your child. We were so scared as to what Evan's future would be. He is such an active, healthy boy and to have all that taken away was really upsetting.

The doctor also asked if we could bring Evan in on Wednesday morning so he could do an ankle block on him. The thought is that if you put the nerves to sleep, it gives relief from the pain and also, hopefully, when they wake up, they might "forget" what they were freaking out about and be normal again. It is kind of like resetting them. We said absolutely we would bring him in.

Tuesday afternoon we talked to the nurse at the podiatrist's office. She calmed us down a lot. She said she had seen several cases of this syndrome and that when it is caught early, like Evan's was, that treatment is very successful at getting this syndrome into a remission-like state. She said he could live the rest of his life normally and never have another out-break again. We were so relieved. There was hope that he would be a normal little kid again. We just had to get him through this. 

Tuesday was a rough day for Evan too. He had a lot of pain. The podiatrist talked to Evan's pediatrician and they talked about putting Evan on a medicine that would help with nerve pain. The pediatrician had to figure out the right dosage for Evan because they don't normally have to give it to kids. I waited all day for the pediatrician to call and let me know I could get it for Evan. He never called. I finally called his exchange (after hours) and asked for him to call me. He called me back and said that he was not comfortable putting Evan on that medicine. It is obviously not a medicine that he usually prescribes and just didn't feel right prescribing it. I asked him what I was suppose to do for Evan and his pain. He said to try to make it through the night and do the ankle block in the morning. I was not a happy momma. Usually I love our pediatrician because he is very conservative and doesn't just prescribe medicine but this time it was biting me in the butt! 

We called our home teacher (from church) and he came over and helped Kurt give Evan a blessing. A blessing is to help someone who is sick or needs help. They said a prayer for Evan and asked for guidance as to what we needed to do to help him. They also asked for a blessing of healing.

Wednesday, April 27th - we took Evan to the podiatrist to do the ankle block. We talked to the doctor while the nurse took Evan into the room. He said he had called Shriners that morning and was going to fax down Evan's info after the appt. He then examined Evan's foot again. We noticed that Evan was not reacting when the doctor touched his foot. Before, Evan would react very quickly to any touch. He was now letting the doctor touch his foot, not near his big toe, but most of his foot. The doctor was a little confused and so were we. His foot had improved. After further examining and discussion, it was decided that he would just block the toe since all the pain seemed to be coming from there.

The block did not go well. The medicine can have a slight burning sensation as it goes in. They said it is not bad but Evan thought it was really bad. He was screaming and, let's just say, really upset. The doctor said he didn't even get any medicine in but Evan said he could feel it and then a few minutes later said his toe was numb. He even started playing with his toe. The doctor was confident that he didn't get any meds in. We have no idea who was right; Evan said his toe was numb, the doctor said it wasn't possible. Man, how I wish I could plug into Evan and understand what he is feeling. It would make this a little easier! (I just read this blog post to Evan to make sure he is okay with everything I have said and he said that I needed to add more about the block - that "it was REALLY, REALLY BAD!!!!! LIKE EXTREMELY, EXTREMELY BAD!!!")

We were all dumbfounded. It doesn't make any sense. The doctor said he would order an MRI to try to see what is going on inside the foot. Evan was able to walk around the office. He hadn't walked in about a week! Kurt carried the crutches while Evan WALKED all the way out to the car. It still hurt but not nearly as bad as it had been. We put Evan in the car and then just stood there staring at each other. We couldn't understand what we had just been through. It made no sense.

I kept Evan home from school the rest of the day so I could watch him. He continued to do good. We even went on 2 small walks around the neighborhood. We thought this was just too good to be true and that he would relapse into pain again. 

 On one of our walks - notice a shoe on that foot!

That afternoon he had physical therapy again. He walked into the office and I said "you won't even believe this is the same kid!" But by the time physical therapist was done with him, he was sore again. I was so worried that the pain would come back. I just kept praying that it didn't. 

Thursday, April 28th - Evan was still doing good that morning. It hurt but not anything like it had been. I sent him to school without his crutches. The school office called about 1:30 saying he was hurting. He said a kid had stepped on his foot that morning and that he had tried to be tough all day but it was hurting too bad. I brought him home and had him rest it.

That night he had a pack meeting with his cub scout group. We went and he tried to keep up with his friends running around. He would run and then pick up the foot and hop a few steps and then run again and then hop again. He wanted to be normal and play but it was hurting him.

Friday, April 29th - He did really good. He went to school and after school even walked to the parking lot that I pick him and Hailey up in (it is off campus because the traffic on campus is so crazy). I was going to drive in and pick him up on campus but he said he could walk. He was then running around with his friends. He had a little limp, but nothing bad. That night he had a basketball game. We debated as to what we should do with him. We were worried that if he did too much it would trigger the pain to come back but in the end, we decided to let him play. Usually he plays 3 to 4 of the 5 periods but this time the coach had him play 2 periods and then the last 2 minutes of the game. He did really good. If you knew his foot bothered him, you could tell he was favoring it a little bit but if you didn't know, I don't think you would have picked up on it. He is the black #11. It is truly, truly amazing to me to see him running on that left foot!

He continued to improve over the weekend and into this week. The foot still bothers him but he is walking, running and being active on it.

We just don't know what to think. We are so grateful that he is doing better and that it looks like he does not have CRPS.  His MRI is schedule for today so we will see what that shows. I just can't express enough gratitude to our Heavenly Father for helping Evan. I just keep praying and saying thank you, thank you, thank you! And we will keep praying that we figure out what is going on in his foot and hopefully fix it. And hopefully we never visit CRPS again!

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