Wednesday, March 30, 2011

History June 2010 - Dec 2010









Little guy healed well from the fracture and life slowly got back to a regular routine. I took him to summer school by car. In August we toilet trained. It took three week but as school started he seemed to get it. He started a 5 day a week small group special education preschool program. In Sept we saw Dr. Healy again. He took another standing x-ray. Some of the lesions seemed to improve. I asked if the limp could be cause d by the chiari. Dr didn't know so we were sent to a neurosurgeon.


We met the nuerosurgeon at the end of September. It turns out the chiari is really crowding his foramen magmen and blocking flow of spinal fluid. It will need surgery at some point. At this time the headaches had gotten a little bit better, mabey it was the indocin he was taking daily. Indocin is related to ibuprofen.


In October we had the followup with the geneticist. That morning Little Guy awoke with neck pain and would not turn his head. Blood work came back OK there was no fragile x and no major genetic things going on. We did not need to see this Dr again, but since he was being treated for an inflammatory disease (CRMO) we got a referral to a rhumatologist. We also saw Dr Healy as Sam was not moving his neck and wanted to make sure it was not a lesion in his cervical spine or something. X-rays looked OK and we left assuming it was pulled muscle. That was Monday.


Wednesday afternoon, Oct 20. Sam and daddy were playing and Sam ran down the stairs and missed the last two steps. He broke his left femur. This break was further down the bone and not as deforming so I called Gillette and we took him in by car. He was made comfortable for the night and Thursday morning he was taken into surgery by Dr Healy for an open reduction internal fixation and flexible titanium pins were put inside his broken femur. Two pins are put in just above the knee and they cross at the point of the fracture. A cut was made at the fracture site to help them cross so another biopsy was taken. He did much better after this surgery and we were able to go home Friday with just a knee immobilizer.


Things seemed to be going well. We got busing set up so he could ride the wheel chair to school. Day before Halloween we went to the Rosemount Haunted Trail for the kids and he had a good time. Sunday coming in the house after church, I was trying to let him down the stairs in his wheel chair and it slipped. Tipping over and re breaking Sam's leg. Back to the hospital, it was indeed broken and we needed to replace the hardware. Surgery was set up for late Monday afternoon. This time they were able to pull out the now bent hardware and put in new ones with out having to make the extra cut above the fracture. Sam tolerated this well and we got to go home on Tuesday. Though because he rebroke it a half spica cast was put on. This started at his hips and went down the broken leg to the toe. We had to have a special car seat vest for Sam because he could not sit with the cast.


The month of November was spent in the cast. I had to drive him to school because he could not sit. School was fantastic! I was so grateful for a teacher that was so excited to see him and give him things to do and me a break every day.


In Nov we saw the rhumatologist. This was another appointment that was pivotal and upsetting. She did not think he has CRMO. There were several reasons and the biopsy had been sent to Mayo and came back *PROBABLE* fibrous dysplasia. I was so upset by the time we got back home. I thought we were on a good course and now it was tossed out.


Dec 1st the cast came off. Xrays showed the leg healed enough he could begin to walk on it. Dr Healy and I talked at length and neither of us were happy about the recent biopsy and what should we do now. that biopsy was taken as a reassurance. Dr. Healy submitted it to Regions lab. they sent it on to Mayo lab. the first was sent right over to U of MN lab. We did stop the indocin and would see what happened to his blood work off of that. Little Guy was given PT and a walker and we went on our way. He was so excited to have the walker that night he would just walk back and forth from the kitchen to the living room!


December brought us a big snow storm with some 18 inches falling in one day. the hardware started slipping out of Sam's leg. There was a big bruise where it went in and I could see the skin budging. I took Sam in on Monday and x-rays did show one pin had slipped. We had been told to go NPO that morning but Sam found a nilla wafer while I went to get the car so out patient surgery was set up for the next morning. The nail was trimmed and advanced back into his femur and a biopsy was taken on the right leg, on a lesion not undergoing active fracture repair. that went well and we left the same day. The biopsy was sent to both labs the U of MN of the first biopsy taken in June and Mayo Clinic labs of the one taken in Oct.

History April 2010 - June 2010













This history is taking longer than expected. I am now up to April 2010. The first appointment in March with the orthopedist at Gillette was kind of devastating. He didn't know what it was for sure but suggested it could be a syndrome related to nurofibromatosis. In April we went to the neurologist. Our family Dr had already wanted a developmental assessment because of Little guy's language delay and his brothers autism. I mentioned to the neurologist that Sam was experiencing headaches about 3-4 times a month that take him out. We were sent for an MRI of the brain. I think everything else was OK. Come to think of it I should check back and make sure he was cleared far as any other delays.


The MRI was the beginning of May. It went OK. Sam had fun with this cool wall toy with all sorts of gears and springs to bounce these balls around. We met with the neurologist the next day for the results. Sam had three unknown spots in his skull bones and a chiari 1 malformation. the spots are related to the lesions found in his legs. The chiari is when the cerebellum tonsils slip down into the spinal cavity. She said the headaches were not related to the chiari but I really feel they are. Later in May we met with the geneticist. She is a real through doctor and took a detailed history of Little Guy and our family. Looked Sam over head to toe, even took a black light and looked him over for cafe-au-laught spots. She ordered gene studies and fragile X tests and a complete bone survey. that is 26 x-rays that cover head to toe. More lesions were found in his hip too.


Friday June 4 everything changed. We were trying to watch a movie but the blue-ray player was not working and most the kids went outside. Sam found a cookie left over from snack and was kind of walking in circles in the living room eating it. I was starting dinner. He tripped over a blanket on the floor the kids had used to get comfy for the movie. He broke his right femur. Right near the top of the bone, proximal I believe it is called. His leg was deformed and sticking out to the right. I didn't think I could get him in the car safely or comfortably so I called an ambulance. Richard met us at Regions Hospital. Sam was made comfortable for the night and Saturday morning he was taken in for a closed reduction and spica cast application. He under went general anesthesia the Dr and a resident moved his leg to get it back in place and casted it. A spica cast goes from the chest down to the toe of the broken leg and knee of the other leg. The Dr couldn't line it up perfectly and there was a little bit of overlap of the broken ends of the bone.


On Monday the Dr met with the orthopedist we saw in March and talked to a bone tumor specialist at the U of MN and it was decided to operate put a plate on the break and get a sample of bone for analysis. Trying to find time for the to doctors to get into the OR was a challenge and we had to wait until late Wed afternoon. I have come to the feeling that medicine at this level is as much art as it is science. The doctors were not sure how to proceed with Sam and had to take their best guesses. An adult humerus plate was put on his femur. There was another lesion further down the femur that made things a little difficult because the bone was misshapen at that point so the plate could not cover it.


He came through surgery OK and did well that night. I think he still had some epidural from the surgery to help with pain. Thursday was a rough day and he had a lot of pain. When the night shift of nurses came on they came up with a good medicine routine and gave Little Guy something every two hours through the night. When he woke up Friday morning Little Guy was in such a better place and asked for a toy to play with. We got to go home that afternoon. It was so sweet to see all the kids together and loving on each other. Sam 's mood improved so much coming home. I think after seven days in the hospital he felt like he wasn't coming home and was so glad to get home. The biopsy came back showing inflammation so we assumed it was Chronic recurring Multifocal Osteomyletis and started indocin for it.

Tuesday, March 29, 2011

History up to March 2010



When I get a computer back I will post his birth story since that is really the start of his Big Story. for now I would like to give some history of his current struggles. Last day of July 2009, Little Guy came down a large twisty slide and used his arms to catch him as he fell. He earned a buckle fracture on his right radius and ulna right where they join the wrist. He was in a cast for a month and seemed to heal well and go on with life. Doctors tell me now that this is likely unrelated to the lesions he has now.

In the Fall of 2009, he was in a 3 yo special ed program three days a week in our school district. He started limping off and on. they noticed it at school and I saw it at home. I was going to ask our family doctor about it at his next well child visit, when I scheduled it in December. He also started to have headaches that would take him out. He would just go to the couch and fall asleep. December 2009 was a rough month with lots of other things happening. I never got that well child appointment made.

On Christmas Eve he was upstairs watching his brother and sister playing video games in my room. Apparently one kid pushed another kid who fell on Little Guy while he was on my bed, a mattress on the floor. His leg hurt, but no swelling or deformity so I gave him ibuprofen and carried him to Christmas Eve service at church. The next morning he would not walk downstairs to open presents. So after the present were opened I took him to urgent care and the first fracture was found. A tibea fracture. Little guy was put in a splint and we were given a referral to an orthopedic clinic.

At that clinic on the 28, we were seen by a doctor that had no bedside manner and no time for us. He did right away recognize that the fracture was a bone cyst that broke. Those usually fill in once broken. He was put in a walking cast and we were sent on our way. We came back some 4 or 5 weeks later. Little guy was x-rayed through the cast. The fracture was deemed healed enough. The cast was removed and we were sent on our way with not much instruction. Little guy never walked on the cast and after it was removed had great difficulty walking again. I went to our family doctor and asked for a referral to a pediatric orthopedist. She sent us to Gillette Children's Specialty Healthcare.

Our fist appointment with the pediatic orthopedist was St. Patrick's Day 2010. One of the things the doctor did was get an x-ray from the hips down of Little Guy standing to check for leg length differences. Lengths were OK. What wasn't was the number of lesions in all the long bones of his legs. These lesions have had many names, now we just call them lesions. We were told to start a full evaluation. I set up appointments with genetics, and nuerology.

Thursday, March 24, 2011

Intro

I want to make a blog to help me make sense of what is going on with my son's life. Little Guy has had so much happen to him the last year and a couple of months. when he was born in the car on the way to the hospital 5 years ago, I always said he was a little guy with a big story. I didn't realize then how big the story would get.