Wow. I can't believe it's been a year since all this began. What a long strange year it's been..
In September of 2012, our normal, healthy, active six-year old son Daniel started acting very strangely. He would cry when I took him to Kindergarten saying, "I just want to be with you. I just want to snuggle you." We'd never experienced this kind of separation anxiety before, and kept reassuring him that he was fine. He also started complaining his side hurt, although there was nothing to see, and I again reassured him he was fine.
In September of 2012, our normal, healthy, active six-year old son Daniel started acting very strangely. He would cry when I took him to Kindergarten saying, "I just want to be with you. I just want to snuggle you." We'd never experienced this kind of separation anxiety before, and kept reassuring him that he was fine. He also started complaining his side hurt, although there was nothing to see, and I again reassured him he was fine.
After a few weeks of this, we noticed a strange rock-hard lump on his left rib cage. The lump didn't really hurt him that much, but it baffled me why it was there. I showed it to my physical therapist friends who said it was probably just a swelling from playing too hard and should probably just get it looked at. The pediatrician didn't know what to make of it and ordered an x-ray that came back normal. He said just to watch it, and if it changed to take him to an orthopedic doctor. The lump actually went away one day, and I remember thinking, "Well that was weird, but at least it's gone."
A week later it showed up again higher in his shoulder and much larger. This is where I have to sound my 'woo woo' alarm. For those that know me, I've been speaking to both of my deceased parents (mom and step-dad) for years though a medium. In early September, before any of this happened, my dad started a reading saying he wanted to talk about Daniel as he was having a major auto-immune reaction. At the time, I didn't know what questions to ask as he had no symptoms, but now all my efforts where in looking at this as an auto-immune response. I tried to explain the source of my information without sounding crazy, and my pediatrician ordered lab work that all came back normal. The orthopedic doctor took more x-rays that didn't show anything. By now the swelling was huge covering most of his upper left back, wrapping around his chest and swelling up his abdomen. We had an ultrasound and it showed the swelling as "dramatic edema." I was in total panic, but not having a clue what to do for him. Daniel was miserable, staying home from school and we were trying to reassure him that he was ok.
I scoured the internet for clues, but everything was coming up as tumors. I insisted we look at his immune system, and the only way to get in front of the pediatric rheumatologist was to take him through the ER at Texas Children's Hospital. My pediatrician agreed and ordered an MRI, and on Friday October 26th, 2012 I got up at 4:00am to get ready to take him in. I Googled to see what we'd be looking for in an MRI, and looked at all the symptoms one more time.
A week later it showed up again higher in his shoulder and much larger. This is where I have to sound my 'woo woo' alarm. For those that know me, I've been speaking to both of my deceased parents (mom and step-dad) for years though a medium. In early September, before any of this happened, my dad started a reading saying he wanted to talk about Daniel as he was having a major auto-immune reaction. At the time, I didn't know what questions to ask as he had no symptoms, but now all my efforts where in looking at this as an auto-immune response. I tried to explain the source of my information without sounding crazy, and my pediatrician ordered lab work that all came back normal. The orthopedic doctor took more x-rays that didn't show anything. By now the swelling was huge covering most of his upper left back, wrapping around his chest and swelling up his abdomen. We had an ultrasound and it showed the swelling as "dramatic edema." I was in total panic, but not having a clue what to do for him. Daniel was miserable, staying home from school and we were trying to reassure him that he was ok.
I scoured the internet for clues, but everything was coming up as tumors. I insisted we look at his immune system, and the only way to get in front of the pediatric rheumatologist was to take him through the ER at Texas Children's Hospital. My pediatrician agreed and ordered an MRI, and on Friday October 26th, 2012 I got up at 4:00am to get ready to take him in. I Googled to see what we'd be looking for in an MRI, and looked at all the symptoms one more time.
God somehow put me on a webpage (I still don't know what I clicked to land on it), and the banner image totally took my breath away. It was the picture of the crooked big toes that are the telltale sign of FOP...Daniel's toes. I knew in an instant this was it. It was much bigger than anything I could have ever possibly imagined. I woke up my husband and in disbelief we read the webpage. It's a great website full of fact and pictures of the progression of FOP. But for terrified parents just finding this on our own, it was like a horrific nightmare. Dr. Kaplan (the brightest angel on Earth!) has his HOME number on the website. I called and woke him up, crying, babbling, going on about being a mom in Houston and I think my child has this and I'm about to take him to the ER right now but I think he's got this thing on your website and his big toes are crooked and he has hearing loss and all the things you say about FOP but I don't know what to do and you have to help us...
Dr. Kaplan graciously listened, asked a lot of questions, and requested some photographs and x-rays. I happened to have all of the information, and within 2 hours he emailed me back saying he had no doubt of this diagnosis. He said to stay home, don't go to the ER as they won't know what to do with him, and he contacted my pediatrician. We told Daniel, and he was very confused not to be going to the hospital. But we told him we'd found a doctor that knew what was going on with his back, and that we just needed to rest and stay home.
I have never cried so hard as I did that day. My sweet husband Jeff was so strong and said, "Well at least he's here with us. It's not like he got hit by a bus. It's going to be ok." My friend Kira came over and we got on our knees and prayed. We prayed for him to be healed, for us to have the strength to go through this with him, for our family to endure this with grace and love.
Dr. Kaplan graciously listened, asked a lot of questions, and requested some photographs and x-rays. I happened to have all of the information, and within 2 hours he emailed me back saying he had no doubt of this diagnosis. He said to stay home, don't go to the ER as they won't know what to do with him, and he contacted my pediatrician. We told Daniel, and he was very confused not to be going to the hospital. But we told him we'd found a doctor that knew what was going on with his back, and that we just needed to rest and stay home.
I have never cried so hard as I did that day. My sweet husband Jeff was so strong and said, "Well at least he's here with us. It's not like he got hit by a bus. It's going to be ok." My friend Kira came over and we got on our knees and prayed. We prayed for him to be healed, for us to have the strength to go through this with him, for our family to endure this with grace and love.
On 12-12-12, Daniel and I flew to meet Dr. Kaplan in Philadelphia. He was so warm, compassionate, and dedicated to helping us and all the others with FOP. The genetic testing has confirmed Daniel has the classic FOP mutation.
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