I know what you're thinking...Why is she writing a post about her summer vacation when summer has barely started?
Well, because my summer vacation is basically over and now the work begins. For the last few weeks I've been sitting in emergency rooms and hospital rooms with my son. We were hoping to get answers during our last visit, but we still have so many questions.
You can read a bit about my son Eric to the right. His summer vacation ended one day when his legs suddenly gave out from under him while he was at work. He said they simply felt like they just weren't there.
The doctors ran tests and found everything was fine, his blood, his EKG, no abnormalities were found. So they gave him an IV and sent him home stating he was simply dehydrated. What?
Well, he seemed a bit better so we were hoping it was over, but it started again not loo long after that. Except this time he had discomfort in his chest and neck that was so bad he thought he was having a heart attack. So off to the ER again. They ran another EKG, same results...everything is fine. "Go home, take it easy and relax, you're not going to die" was what we were told. They thought he just had a panic attack, so they shooed him out the door again. Well, of course he was having a panic attack, he felt like an elephant was standing on his chest! Grrr!
The third time we went to a different hospital. This time we demanded to hear more then just "we don't know". We had two doctors consulting with us and going over the previous tests from the first hospital. And although they weren't certain they thought he had Lyme Disease even though the lav had said the results were negative. The reasoning was the symptoms and the fact that his blood platelets were low. So we left with a prescription for doxycycline and some hope. At least they were trying to do something!
The next couple of weeks were touch and go. He'd steadily improve, only to suddenly slip backwards. He started sleeping all the time, and again couldn't walk, so we had to go back to the ER. He should have been better but he could hardly walk. I had to use a wheel chair to get him in to the hospital.
The scary point for me was when the doctor made Eric walk as far as he could. He made it about 8 feet and had to stop. He was walking hunched over like he was 110 years old. It was so sad to see. But worse then that was when he sat down he started to twitch. Every thing was twitching, his feet, his fingers, his head. It was the hardest thing to see. I thought for sure he had something horrible. MS, neurological issues, I didn't know, but I was scared.
The cat scan came back normal and they came in to release him again. But we refused to take that as a solution. We argued, stood our ground. If he left the hospital it would take him 6 months to get tested and see a neurologist. We couldn't afford to wait that long! He'd already missed two weeks of work and was going to lose his job if he couldn't go back.
Luckily Eric's doctor agreed to put him in the hospital. They ran more blood tests and this time they included a full head/body MRI, much to our relief. FINALLY!!
The results were bitter sweet. They found nothing wrong, which was great. But that meant that they didn't find any answers either. My son was angry, I was happy yet disappointed. Then the doctor proceeded to tell us that this was my son's way of dealing with his anxiety so they prescribed more pills.
Okay, so just the previous day my son was sitting curled up and twitching and this is supposed to be all in his head? Are you serious? Now what are we supposed to do? We were told to take comfort in the fact that there were no physical issues and take the pills and see how he does. Luckily my son had another week off from work so we'd give the pills a shot and see how it goes.
I bought him cases of bottled water so he wouldn't have to drink the tap water where he lived. He came home with me a lot and ate good home cooked meals. He built up his strength and was able to come out with his daughter. In stead of sleeping 23 hours a day like he had been, he was awake, alert and able to get around slowly, but steadily, his legs held him and he walked around a lot. Whew, finally, he's getting better. Or is he?
When he went home I gave him a notebook so he could journal everything he did, ate, and felt. We needed to keep track of everything so we could find out what was triggering these episodes.
Just the other day he had a bad night. He was pouring sweat and twitching again. My heart sank when I heard this. Two steps forward, one step back. This is NOT normal, this isn't depression or anxiety or anything normal. Modern medicine wants to see test results that show what's wrong, but it's obvious that's not always going to be possible. They need to think outside the box!
Yesterday at work, someone mentioned a documentary they heard about, Under Our Skin. It's about Lyme Disease and she said the symptoms many of the people had were exactly like Eric's. I went home and watched it. It was amazing, scary, disheartening, and hopeful all at the same time. I was angry and cried, but I was hopeful now that I had more information and immediately did research on the Internet.
Tomorrow we go to the doctor for a follow up. This time I'm going to be armed with information on Chronic Lyme Disease. I'm going to demand a new test just for this condition since early stage Lyme tests don't catch this. I won't wait until my son is laying on the floor in a twitching pile unable to move or breath like one of the people in the documentary.
I recommend everyone watch this. It's scary but eye opening. And there's a lot of information that could be valuable to everyone!
I hope no one else has to see their child go through this, but I'm sure that's an impossible wish. Don't be afraid to take a stand and do what you need to do.
More to come! Thanks for reading this, I know it was long and probably boring. But if this information helps just one person!
Resources found during research: