Monday, March 7, 2011

The Internet-A Parent's Tool For Medical Answers?

I know we all agree. It is the worst feeling in the world when your child is sick and you feel there is nothing you can do to fix it. That helpless feeling, it's heart wrenching. It makes your stomach sick. I've been there. It's a horrible. Once when Chloe was a baby, like I normally would, I put her in the car seat, I closed the van door, got in the drivers seat, and peeked at her in the rear view mirror. At that quick glance, I thought she was dying. I honestly did. Her face and lips were turning blue. Her hands were clenched in tight little fists. Her head slightly shaking while her eyes rolled back into her head. I screamed for help to my husband who was in the house. I frantically dialed 911. At the hospital they ruled it a seizure, not your common febrile seizure. They ran tests. No answers for what caused it. They sent us home and the next day she had another. She was airlifted to Children's Hospital and spent the next few days there under observation and being poked, prodded, and tested. She was only six months old. She had a swollen fontanel which was alarming to doctors. She went on to spend six months under the care of a neurologist. We never did get answers as to why. But she's fine now. Never had another seizure that we know of.

I've gone through it with Nash for years. The doctors have no clue. They all diagnose him with asthma. I know he doesn't have asthma. I even believe I know what the issue is. Sorry, I'm not completely ready to share that yet. But here's the thing...they run their tests, they push their meds, and they forget about you before you're even out the door. At least that has been my experience. I know doctors don't have it easy. But here's the other thing...sometimes we as parents know more. We know our children better than anyone. We know if something is not right even if said doctors don't listen or think we are crazy. AND the Internet has possibly given us as parents, who are seeking medical information the biggest gift ever. Perhaps to the irritation of those doctors when we come in spouting out information that we read and our probable diagnose. Granted, there is also a lot of MISINFORMATION out in cyberspace. And I think any relevant information should be discussed with doctors.

I have to thank my husband for his tireless efforts. He doesn't take no for an answer from doctors. He asks lots of questions and makes lots of requests. But in an age where decisions are made by our insurance companies, then our doctors, we are often the last to have a say. Our current doctor wouldn't so much as order blood tests for our son. In fact, he did nothing except a simple breath test before diagnosing him with asthma and putting him on three different medications! So, we simply went to a different doctor. Before our general doctor even responded to our email, my husband had already gotten a variety of tests and results for our son from the new doctor, a specialist.

I guess I just wanted to say that I'm thankful we as parents have the tools we need to do something to help our children. I want to encourage any struggling parents not to give up. I'm thankful that we don't have to put all our faith into a strangers hands and hope for the best. Like I said, it's the worst feeling to be helpless to your children. But, it's a great feeling when you figure it out, and are able to be proactive, and make it better. I'm thankful for my husband who never gives up. I'm thankful for the internet and all the stories parents share about their medical journeys with their children. But most of all I'm thankful for my wonderful children who I love more than anything.

Please understand that this is my situation and I know it doesn't apply to everyone. These are just my feelings about what I'm going through in my own life. As I get more information about our situation I will update you. If I can possibly help one person with the information I have found, it's all worth it. To be continued...


Sue said...

That must have been so scary with your daughter, and so frustrating with your son! You're right, doctors need to pay more attention to the patient, and parents of minor patients...the insights and information that they provide should be taken seriously. I actually told my doctor about what I thought my medical problem was once, and he finally ran a test(after I told him I was going to a specialist). Going over the results with me, he actually said, "I hate to admit it, but you were right."
Hang in there Lil, and I hope you have your answers soon! Parents are definitely their child's best advocate!

Megan said...

Wow...I cannot even imagine how scary that must have been for you to go through. I see pros and cons to the internet for medical advice. As a nurse, I LOVE when my patients are knowledgeable about their diseases and medicines, but there is SO much wrong information out there, too.

Branson @ Reflection of Something said...

It's bloggy award time! :)