Thursday, May 8, 2014

The Story of Tommy's Illness, Part 2

Part 1 can be found here,

It was November 2013, and we had just been called into our doctor's office for some news.  First of all, he said, new test results had shown that Tommy never had mono. (We still don't understand or know what happened there, but at this point it doesn't really matter.)  The doctor then gave us his official diagnosis: Amplified Musculoskeletal Pain Syndrome.

At the time, we had never heard of it, and probably neither have you, but the doctor explained that it's very similar to fibromyalgia.  It's actually not, but fibromyalgia is a disease people already know about and so it's kind of an easy way to almost explain it.  I still don't know how to really explain it. I like to say to people that it's a horrible thing and that it's hard to understand and even harder to explain. Basically it just means that my kid is in terrible pain.

Back to the doctor visit; he told us that he had talked to the folks at Children's Mercy about a treatment regimen, and that they recommended that Tommy start physical therapy. He was to meet with PT for 3 hours a week and do workouts for an hour a day on his own. He also needed to do desensitization exercises, which are a way of retraining the brain on how pain is interpreted, and is, coincidentally, extremely painful and uncomfortable.

The doctor explained that we were to try the PT regimen for a while to see if there would be any improvement, but if he didn't get better, we would be put on a list to be evaluated for the RAPS program at Children's Mercy, which is an intensive treatment program, involving 8 hours a day of PT, OT, and pain management counseling, for 4-6 weeks in Kansas City.  They only accept 3 kids at a time. We knew it was a long shot, so we held out hope that the at-home treatment regimen would work.

Right after Thanksgiving, we started attempting to keep up with this regimen, and it was absolute torture for everyone involved.  Tommy just wanted to sleep. It hurt too much to move. He would beg and scream and cry to get out of PT because it just hurt. too. much.  Once he got to PT, he would cooperate with everything she asked, just like an angel, but for Greg and me he just refused.  It was so frustrating.

By the end of December, we all agreed that it was not working, and we requested an appointment at Children's Mercy. The first one available was March 13.  So we waited. We kept pushing Tommy, and Tommy kept hurting. It was a devastating wait. It was such a difficult time. I watched my child plunge into a terrible place of sadness and pain. It affected all of us. We just had to wait and rely on God for strength every single day. I could write pages and pages about what God has done with my faith through this time. He has drawn near to me and orchestrated events in a way that I could have never foreseen. It has been so hard to watch my child suffer, but I am holding on to the promises of Scripture closer than I ever have.  I pray all of the time that this experience will strengthen Tommy's faith. It's hard to see right now, but I hope he will look back on this and realize how God was at work.

March 13 finally arrived, and we spent an entire day with the wonderful rheumatology and pain management specialists at the hospital.  The doctor took one look at Tommy and confirmed that his was a classic case of AMPS, and that they were going to admit him to the treatment program.  Dr. Hoffart knelt down at Tommy's eye level, looked right at him and said, "You are going to come here for treatment, and you are going to get completely well."  I ran out of Kleenexes shortly after that moment.

Tommy started the RAPS program on April 21.  He is currently in his 3rd week, and has shown a lot of improvement. They are focusing on rebuilding his strength, increasing his stamina, and are doing about an hour a day of (still painful) desensitizations in order to help him have normal sensation again.  The doctors have told us that his prognosis is very good, so we are very hopeful. He still has a long way to go, and will remain on a treatment regimen of exercise, desensitization, and pain management counseling (plus full-time school) even after he returns home.

We've been staying at the Ronald McDonald house (which has been WONDERFUL) and I was able to take off of work for the first two weeks to accompany him. Greg has gone up for the final two or three weeks that Tommy is up there.

Tommy's day consists of an hour of pool therapy, several hours of PT and OT, intense and extremely painful desensitization, art therapy, music therapy, group therapy, and one-on-one counseling.  We pick him up at the end of the day and he is hurting and swollen and pretty miserable, but as the days have gone by, he is starting to realize he is strong and he is getting stronger.  He called me yesterday to say that he and the physical therapist had gone on a two mile walk. TWO MILES.  For a kid who has had trouble just standing up in the shower for the past six months, that's pretty awesome.  His feet were swollen and I'm pretty sure he was in agony for the rest of the night, but for that moment, he was just so proud.

All of the parents whose kids are in the program have a meeting with the psychologist twice a week, which has been absolutely soul-refreshing, even though I have cried in every single meeting I've attended so far. It has been so encouraging to hear that we are not alone in this struggle, and that other families have had similar experiences, sometimes worse ones at that.

I hope that I will come back to this blog and report on how wonderfully normal everything is with Tommy soon.  It's not, yet, but hopefully soon. Meanwhile, I am just still praying for my little guy as he perseveres through this awful awful time.

To be continued...very soon I hope.

Tuesday, May 6, 2014

The Story of Tommy's Illness

I was corrected last week during an appointment at the Children's Mercy Pain Management Clinic in Kansas City when I referenced a time before Tommy was 'sick'.  "Tommy's not sick, he has pain. We don't say he is sick." So I am learning a new language, to say he has pain, not that he has an illness. I can't say I like one phrase better than the other.

I wanted to write the story of it, so I would remember, but also I wanted to put something out there on the web, maybe for someone else who is endlessly googling symptoms like I did for so many nights.

It started in November 2012, not long after my last post on this blog, when my 10 year old son Tommy came down with a cold. He didn't get better, so I took him to the doctor for antibiotics. He still didn't get better, so by mid-December we were running blood tests and he tested positive for mononucleosis.  We had a trip to Georgia planned for New Year's. The doctor said he would probably be fine by then.

Christmas came and went; Tom stayed in the bed, we cancelled the trip. Some days he would get up and play, and then the next day he could not function.  He would get better and I would send him back to school, and then for four days he would lay in the bed, crying. His joints ached, his skin hurt, he didn't want to move, he didn't want to eat, he just wanted to sleep.

We went back to our pediatrician, she advised that he needed more rest. She ran more tests and took a chest x-ray, just to make sure.  Nothing definitive. So he rested.  And he didn't get better.

Our next move, according to our doctor, was to see a rheumatologist at Children's Mercy Hospital in Kansas City, two hours away from the small town in which we live. We took the first available appointment, which was in April, and we waited.  We googled his symptoms. We feared. We prayed.  People suggested that maybe it was arthritis, Lyme disease, cancer, chronic fatigue syndrome. People suggested new doctors, new vitamins, new herbs, new diets. We waited, we prayed, we worried. Tommy continued to hurt.

By the time the appointment arrived, Tommy had shown some signs of improvement.  The weather was getting warmer, and he had started going back to school for part of the day.  He was having less pain, and he was starting to get up and play again, returning to his old self.  We debated cancelling the appointment, but we went anyway. The rheumatologist gave him a 2-hour exam. She felt that he was probably just taking some time to recover from mono, and that we didn't really need to worry.  She did mention something that would come back to my memory much later: she said he was a candidate for Amplified Musculoskeletal Pain Syndrome.  His joints are hypermobile and he is very intelligent, she said, and sometimes kids like him can develop amplified pain.  She told us that she was glad he was on the upswing, and that we should return if he ever had any more problems, but in the meantime just continue sending him to school and on with his life. So we did.

Summer arrived, and Tommy seemed, if not 100%, at least well enough to function and play and go on vacation.  We were happy to have him back.  School started again and Tommy celebrated his 11th birthday. He was doing well.

In late September, Tommy got a stomach virus. He didn't bounce back. He stayed in the bed, he cried, he said his whole body hurt.  We took him back to the pediatrician. She ran more blood tests and found nothing. She said he had just gotten used to sleeping all the time, and she insisted that I send him back to school. I took him that day, and left him trembling and trying not to cry as he trudged up the stairs.  I cried as I put my car in drive to leave him there, with my intuition shouting at me that it was all wrong, that something else was wrong.

He cried every day and every night, begging us to let him stay home, let him stay in the bed, he was too tired and everything hurt.  He screamed when we made him take a shower. He flinched when I went to rub his back or stroke his arm. He hated the feeling of certain clothes, of scratchy pillowcases, of socks. He wanted to sleep, day and night. He was perpetually tired, unbearably cranky, and heartbreakingly sad.

We took him for a second opinion to another doctor in town, who told us that kids just don't like middle school, and that we just need to make him go. Tommy continued to get worse.  Our whole family was ragged from grief and exhaustion.

Friends and coworkers hinted helpfully that maybe he was faking. Greg and I repeatedly asked him if anyone was bullying him.  I asked him if any kids at school were mean to him, to which he responded, "No way! Everyone loves me, Mom."  So confidence clearly wasn't the problem, either, I supposed.

We knew already that he needed to go back to school, we'd been told that by two different doctors, but it didn't solve the problem of why this outgoing, smart, straight-A student suddenly just wanted to sleep, and not just on school days, but on sunny Saturdays, on snow days when neighborhood kids were knocking on the door with sleds tucked under their arms, on days when we had fun things planned. Why were all the symptoms coming back from when he was first diagnosed with mono? Why was he so tired? And why was he in so much pain?

 We finally found a doctor who was willing to try to find out the answers.  He ran more tests, new tests that hadn't been run, which still showed nothing. I plopped a giant file of medical records on his desk, and he actually studied it. He looked at the notes from the rheumatologist from Children's Mercy, and he picked up on the tiny forgotten sentence at the end: "Tommy certainly is a candidate for Amplified Musculoskeletal Pain Syndrome, but at this time, it is not indicated."  He called and consulted with the rheumatologist, and then called us and asked us to come in to the office.

It was November 2013, and a year had gone by since Tommy's first signs of illness.
(to be continued)

The kiddos

The kiddos

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