Every family is likely to run into medical issues at some point in their lives. Sometimes you need more information than what you can get at your doctors office. Data shared by others on the internet; in blogs, newsgroups, forums and official medical pages can be extremely valuable in finding solutions. Here at Colladata we are striving to collect data from people that are experiencing a medical condition via a detailed survey so that we can collate that data and present it back in the form of charts and graphs to the user community. We believe in people sharing information to help people.
In several instances in our family we ran into medical issues where we needed more information than what we received at the doctor’s office and we ended up using data from various sources to help family members. See our stories below.
When our son was about three years old he started having frequent fevers. We’d bring him to the doctors they wouldn’t find anything and we would go home and wait out the fever. He would be very sick. He would have dark circles around his eyes and sit on the couch watching TV. After several fevers that occurred like this without explanation, we started noticing that there was a pattern to his fevers and we began tracking them. They were happening about every 4 to 6 weeks. One time our son wouldn’t move his head or neck at all and complained of headache. We became concerned that he might have meningitis. Luckily, he didn’t. However, the fevers kept coming. I started researching what could be causing them online. I found a forum for a condition called PFAPA which stands for, Periodic fever, aphthous stomatitis, pharyngitis and adenitis. Wow! Our doctor never mentioned anything like that.
After reading information in the various blogs from other parents whose children were experiencing the same thing, we had his blood tested, and it was consistent with what we’d read about the condition. After hours and hours of reading blog data I began to see a trend. Many children experiencing PFAPA would improve after their tonsils were removed. It didn’t always improve but it did in a good number of the cases. I had trouble with my tonsils as a teenager and had them removed at the age of 19. I wondered if there was any genetic component involved in his sickness. We went to an ENT, described the situation and asked if they would remove his tonsils. The ENT agreed. Our son was five at the time, it was 2004 and he has not had another issue since. The data that we found online had helped us save more illness and time off from school. He’s now 6’ 2” and a thriving student athlete.
In the mid 2000s, my brother, who lived in New England started displaying erratic behavior over a period of a few months. He became obsessed with certain ideas, wasn’t sleeping much and eventually started having paranoid delusional episodes. So much so that he left his partner, stopped working and went away on his own because he no longer trusted anyone including friends, siblings and our parents. Over the previous few years I had chatted with him frequently enough to know that he had some other symptoms. Including swollen joints and pain in his joints. One time he had gone to the emergency room because he had extremely bad pain in his toe. They told him he had gout but he didn’t fit the profile for gout. I began researching because I was very concerned for him. He was becoming angry and I was worried about what he might do. I ran across some posts from people who indicated that they experienced brain related changes from Lyme disease. That’s right…late stage Lyme disease. This was a post buried in some newsgroup somewhere. It wasn’t on the medical sites. At the time, there was a lot of skepticism about Lyme and it's potential effects, so medical sites were only describing what the "approved" and accepted side effects were. My brother was not receptive to any of this. At the time, he didn’t trust anyone and wasn’t open minded about what was going on. Luckily, at some point, when he was able to logically think it through more clearly he started wondering if there might be something to it and finally went to a doctor and was tested. It was late stage Lyme disease that was affecting him. He took antibiotics for over a year and still continues to get tested periodically. Sometimes he needs to go back on antibiotics if his blood tests indicates that it’s coming back. There is a lot more research to be done surrounding Lyme disease but it’s a very scary disease and I’m very grateful for those people who posted their stories. After that, I posted a note on a psychology forum for paranoid delusional behavior indicating what we found. A few years later I received a note from a woman who’s husband seemed to be experiencing similar symptoms. He was a hunter and she was very concerned. Another story of people helping people and sharing information to help each other.
Our daughter was diagnosed with PCOS as a teenager. She uses websites to educate herself about the syndrome and has been trying alternative methods of helping herself for years. Educating herself about lifestyle changes helps her more than the different medicines that she's tried. She's very interested in what has worked for other people and what other people have tried and when they’ve had success or not. Healthcare is expensive and finding ways to help yourself seems critical these days.
My husband had spine surgery to remove a cyst and a laminectomy in 2010, as the cyst was pressing on his nerves causing severe nerve pain. Several weeks after having the surgery, he started having increased pain which escalated over the next few weeks and became excruciating and incapacitating. He collapsed while I was on a business trip in Ireland and I had to fly home to help him. We went to the neurosurgeon who performed the surgery and he said he thought he was experiencing muscle spasms and sent us to a chiropractor. It was so painful for my husband that he could barely walk into the chiropractor's office. The chiropractor was unable to adjust him and we ended up in the ER a day or so later. By the time we went to the ER, I had done some research regarding the symptoms we was experiencing that were gradually getting worse since the surgery and I was convinced that he had a spinal infection even though he only had a low grade fever. I had spent hours and hours researching data online, looking at case studies and reading symptoms from different people in different blogs and websites. I told the ER what I thought and they indicated they couldn't do an MRI, shot him with Morphine and sent us home. I kept a timeline and camped out at the neural surgeons office until I found a nurse to give my detailed notes to the doctor. At the bottom of the timeline, I had written "possible osteomyelitis". I didn’t really even know anything about "osteomyelitis" but I was able to take his symptoms and read enough to guess that this might be what he had. He was in excruciating pain. When the doctor finally read it, he called back and ordered an MRI. The MRI showed fluid on the spine. He was expecting a spinal fluid leak. I asked if it could be puss and he was skeptical. When they finally performed surgery it was discovered that it was in fact an infection and the disc between his L4 and L5 was completely eaten away. The doctor apologized to me after the surgery. I won't go into the rest of the details but there was a lot of hospital time involved and multiple surgeries after this. Again, the data that I gathered helped me draw conclusions about what might be happening. I believe that data is crucial to providing appropriate care to individuals.
I am certain that other families have run into similar situations and have found the more data that they have the better they are able to help themselves or help family members or friends. I'm very interested in alternative methods of helping ourselves and think there is sometimes too much time spent masking the symptoms rather than getting to the root cause of the issue or disease.