I haven't posted much in a while. Much in my life has changed since I was actively blogging. This blog was originally a social experiment of sorts with long time and dear friends. We used aliases for fun and anonymity and much of the writing was tongue and cheek.
My life for the last seven months has been anything but light and bantering. Cole's injury has driven us firmly into the realm of having a child with a disability. We have found ourselves floundering in the medical community with misdiagnosis, scary and horrifying experiences as we watch our son suffer, balancing stress as we've never known both trying to work full time and do right by our child. We have heard horror stories about the Pain Clinic at Boston Children's Hospital and had doctors repeatedly tell us our son's pain was all in his head.
Cole has had 60 physical therapy appointments to correct the position of his fibula. His is on nerve pain medication and has a brace so he can walk. We have tried electronic stimulation. All of this has helped to some degree but none of it has resolved his injury.
As I write this, I am in a group home for people seeking medical treatment far from home. Cole is scheduled for an allograft day after tomorrow. He will have one hole drilled into his fibula and two into his tibia. Cadaver tendon will be put through these holes and secured with stitches and small pieces of metal. This procedure should stabilize his fibula which is sublexing or coming out of joint and putting pressure on his peroneal nerve. This nerve controls the flexing of the foot. Cole has slight feeling on the top of his foot that he has regained since the injury but his foot is otherwise numb. He has foot drop which means he can't flex his foot so he can't walk without his brace which holds his foot in position for him. He also has extreme pain from ankle to hip. The pain has improved with the medications but has flared in the past month.
Cole was diagnosed by the Pain Clinic at Boston Children's Hospital with RSD or CRPS (Chronic Regional Pain Syndrome). This means his pain is inconsistent with his injury. The nerves continue to send pain messages instead of shutting off. His physical therapist and pain specialist believe he has EDS (Ehlers-Danlos Syndrome). There are seven different types as I understand it. They believe he has type three or hyperflexibility of the joints. It makes a person prone to joint dislocation. We will likely pursue testing in this area which requires a geneticist but treating Cole's current injury is our priority at the moment. What follows is our diary of Cole's injury over the past eight months.
Prior to the start of all this Cole was a very active and healthy child. He had a broken clavicle (right I believe) when he was born. It healed and was not a big deal. He had antibiotics for the first time when he had pneumonia for two weeks in the summer of 2011 at age 7. It’s the only illness of note before this. He has always been highly active. He took karate where at age 5 he shocked his instructor with his speed and strength. He’s taken swimming lessons, played baseball where he pitched and caught, and played football. He has always been an excellent student, at the top of his class.
I feel it’s important to include that when this injury occurred Cole had spent the month prior sick.
9/26/13 - Cole saw Dr. Kupperberg and was diagnosed with strep throat and he was prescribed antibiotics. He had already been sick for about a week. Cole also complained of hearing loss during this time. He never ran a temperature but he did test positive for strep and I think was on amoxicillin for a week.
10/17/13 - Appointment with ENT Dr. Tippernini. Cole never really got better after the antibiotics for strep and he continued to complain of hearing loss. Dr. Tippernini diagnosed him with a sinus/ear infection and prescribed Cefdinir 5ml/day for I think 3 weeks. Cole was feeling better but still on the Cefdinir when the injury occurred. The football practice where he sustained the injury was the first he had attended in a month.
From this time forward until November, Cole continues to complain that his hearing is impaired.
10/22/13 - Injury occurred at football practice. He was playing defense and was involved with a tackle in which there was a pile-up with many players. As a result, he was hit with helmet and shoulder pads from at least one other player in the lower left leg and ankle. The injury occurred near the end of practice. Still, he continued to play with the injury and finished the last 10 or so minutes of practice and limped off the field.
10/23/13-10/27/13 - He is limping and complains of some pain but is still active and running around outside. There is no pain when his leg is prostrate.
10/24/13 - He goes back to football practice but can’t finish the warm up lap. He stays and throws a ball around to a fellow, injured player on the sidelines while the rest of his team practices. He complains of an increased level of pain in the lower leg that evening as a result of his attempt to participate in football practice.
10/25/13- We bring him and a friend to a spook trail and although he is limping, he is able to walk of his own accord. He is in good spirits.
10/26/13 - In the morning Brandon and Cole do the bag dropoff for Scouting for Food. Cole has to quit after about 45 minutes because the pain in his left leg increased to the point where he could no longer walk without considerable pain. After a +/- 3hr rest, he plays with friend outside, on and off, for several hours. Outside activity included running and playing whiffleball. They traded off between (mostly) playing whiffleball in the side yard and playing video games inside. Cole says that they did this because it allowed him to rest his leg enough to be able to go back outside and play. That evening Cole complained that the pain in his left leg was significantly worse than it was before playing outside that afternoon.
10/27/13- He goes to his football game but does not play. He is relatively inactive for the rest of the day. It was obvious at this point that the pain and ability to maneuver his left leg is not getting better but if anything was getting worse.
10/28/13 - After realizing that the problem was not subsiding, but getting worse, we bring him to a walk-in clinic in Warwick, RI. The Bald Hill Walk In Clinic x-rayed his left tibia and fibula, determining there were no obvious signs of stress on the bone, performed without the assistance of a radiologist. Dr. Meinke of the Walk-In Clinic then diagnosed Cole with Chronic Compartment Syndrome of the lower left leg. The Walk-In Clinic made a referral on Cole’s behalf to University Orthopedics in East Greenwich, RI. After this visit to the Walk In Clinic we put him on crutches of our own accord because up until this point he had been limping but getting around okay, but the pain was getting worse and it was becoming increasingly difficult for him to maneuver on his own. Still, he experienced no pain when his leg was prostrate.
10/29/13 - University Orthopedics referred us to Hasbro Children’s Hospital in Providence, saying that the compartment syndrome he was diagnosed with was something better dealt with by Hasbro. We wait but receive no response from Hasbro scheduling dept. We then contact the walk in clinic and ask them instead to refer us to Boston Children’s Hospital. At this time no pain when leg was prostrate.
10/30/13- We were able to schedule a visit to their Waltham, MA office for 10/31/13. At this time no pain when leg was prostrate. He is fairly inactive that day, getting around school on crutches.
10/31/13 - Dr. Glotzbecker of Boston Children’s Hospital says Cole does not have compartment syndrome, but is instead diagnosed with peroneal nerve stretching/damage. He said it was an unusual injury. No further xrays or other imaging/tests were ordered at that time. Cole had extreme pain in his lower left leg and foot by the time of this appointment but said the upper leg was okay. Appt. time was 9:45am.
10/31/13 - Karen Morrone, DPt, DAc performed acupuncture and manual therapy for one hour on Cole at her office in East Providence, RI. We brought him there of our own accord. Appt. time was from 1 to 2pm. At the time of his visit with Dr. Morrone, Cole complained of pain in the upper and lower parts of his left leg. By that time he could not bear weight on his left leg at all. Dr. Morrone determines, however, that he has reflex response in both knees. He can wiggle his toes slightly but with pain, and can barely lift his left leg. His quadricep is barely responding when he tries to move it. It was at this time that it was determined that it wasn’t just pain that was preventing him from moving his leg, but that he was having difficulty gaining control to move his leg, period. He is now noticeably dragging his left leg while using his crutches.
10/31/13- At home and in response to questioning, Cole says his toes are tingling; specifically the top of his toes. After performing an eyes closed ‘touch test,’ we determine that he does not have sensation in his left large toe. He can barely move his left leg whatsoever and only with considerable pain. He is now experiencing pain when his leg is prostrate and experiences considerable pain when he attempts to move it or is even touched lightly. He has difficulty falling asleep due to pain.
11/2/13 - Cole loses his hearing completely around 6pm.
11/3/13 - On Dr. Glotzbecker’s recommendation, we take him to the ER. His hearing gradually improves throughout the day. He is in extreme pain after being examined by multiple doctors. By the time we see the neurologist he has completely shut down, is uncooperative and refuses to speak.
11/5/13 - MRI of the left leg. They are able to do the pelvis and upper leg but Cole is in too much pain to do the lower leg. He is uncooperative and stops speaking. It takes an hour to get him to leave the prep room and we have to be visited by the social worker.
11/6/13 - Examined by Dr. Kupperberg. Treated by Karen Marrone
The rest of this is written May 22, 2014
After this very strange, scary, complete and immediate hearing loss which is slowly restored over the next 24 hours, Cole never complains of impaired hearing again. His hearing is now back to normal.
11/7/13 - Neurology appointment. Dr. Fayad prescribes gabapentin 3ml/3 times a day (we gradually increased to this dose over the course of a week). By this time Cole is in extreme pain. We had been alternating every two hours with Tylenol and Ibuprofen but it is barely touching the pain.
11/8/13 - Seen by ENT at Boston Children’s. Hearing test is normal.
11/21/13 - Cole has his first PT appointment with David Sirota. Cole is told that he cannot drag his leg behind him on the crutches as he has been doing. He can’t move his leg but he can prop his left leg on his right and swing them forward. He will stop using crutches for the most part after this and will just sort of hop around on one leg most of the time.
11/23/13 - Cole begins home tutoring. His elementary school is not handicap accessible. He is terrified of being in a room of other kids, that they will bump him and touch his leg.
12/11/13 - Cole has his first PT appointment with Mike Healy. Cole sees David Sirota several more times but then sees only Mike Healy. He continues in PT mostly 3 times/ week which is still ongoing as of 5/27/14.
12/19/13 - First appointment with Dr. Chopra. There is an 18 degree temperature difference between Cole's legs. Dr. Chopra increases gabapentin to 4ml/3 times a day (gradual increase). He also prescribes Low Dose Naltrexone 2mg/day to improve circulation and ketamine 5mg tablets to be taken as needed for pain.
12/31/13 - Ketamine is taken for first time in office with Dr. Chopra. It is determined that 20mg is the dosage for Cole’s pain.
1/24/14 - 4/5/14 - Cole has first appointment with Gershon and Associates for counseling for his anger and depression. He sees Dr. Johnstone for about half a dozen sessions. The only help they provide is that telling Cole he doesn’t have to see her anymore if he stops yelling, kicking and punching people is an incentive.
1/27/14 - Follow up with Dr. Chopra. Cole’s pain is better but only slightly. The ketamine makes him irritable and violent. His LDN is increased to 4mg/day and he is prescribed 5mg of diazepam to take with the ketamine.
1/27/14 - 2/24/14 - Cole’s pain becomes more manageable. It is apparent he is very angry and depressed. We push to have him returned to school feeling socialization and some normalcy is the best thing for him if he can handle it.
2/11/14 - Cole has second MRI at RI Hospital under sedation.
2/24/14 - Cole returns to school part time and within a few weeks, full time. He had been seeing a tutor once or twice a week and out of school since the end of October. He had started refusing to work with the tutor and would hide under the bed or in the closet when she came. We stop using the ketamine by the end of February. He does use crutches in school but only for a couple of weeks until he gets his brace.
2/28/14 - Cole is fitted for his leg brace at PTI Pedorthic Technologies. It is here that electronic stimulation is attempted for the first time. It is the first complete pain relief he has experienced. We do manage to attain an electronic stimulation device a week or so later. It is miraculous in the beginning. He does 3-4 treatments a day with it for fifteen minutes. He can walk and is pain free during these sessions. This result only lasts for a few weeks and then the treatments become painful and we eventually stop forcing him to do them.
April is a really good month. We are actually thinking about reducing his pain meds. He is still in PT 3 times/week. He has started to regain some feeling on the top of his foot. He can walk and even run with his brace but his activity level remains pretty low. PT starts to include exercises instead of just putting his bones back in alignment.
5/1/14-5/2/14 - Cole has terrible coughing fits. We are unsure if this is allergies or a cold or virus. We put him on a nebulizer with saline which we have for his brother’s asthma. He is out of school for these two days.
5/3/14-5/4/14 - He is feeling better. Sunday is a beautiful day. We play catch outside. He plays wall ball with his friends. Cole is trying to convince me he is well enough to play baseball in the town league. By Sunday night he is in agony and we are back to where we were in January and early February.
5/4/14 - We put him back on the ketamine and diazepam. We give him Ibuprofen PM but he still has trouble getting to sleep at night. He wakes up crying and winces in pain all day. His fibula is continually 80-100% out of place when he goes in for PT. Tape seems to help keep it in place to some degree.
5/12/14 - Appointment with Dr. Chopra. It’s a very different appointment than what we were expecting when we scheduled the appointment. Dr. Chopra prescribes a week of steroids which appear to have no effect.
5/19/14 - We attempt to have Cole return to school. He only makes it through half a day and it becomes very apparent that he is not going to have a quick recovery from this relapse.
5/21/14 - Brandon tells Mike Healy that we cannot keep going on like this and we are referred to Dr. Cummings.
5/27/14 - He has not had ketamine or diazepam for about a week. His pain is slightly improved and he hates taking it. We are keeping him as immobile as possible in an attempt to avoid sublexing of the fibula which increases his pain.