Monday, February 17, 2014

Ryder's Battle with Fevers (Part 8)

Need to catch up? Part 1 - Part 2 - Part 3 - Part 4 - Part 5 - Part 6 - Part 7

So all of this story happened across the time span of a few months. (A lot less time than it has taken me to write it out!)

All of the horrible times we endured and conflicting messages we were given were like pressure building in a geyser. This momma was ready to blow.

Then we get another call from the specialist's office. Nurse K tells us that now Dr. F wants us to do genetic testing.

Here is why that was frustrating and led to the severing of our relationship with Dr. F....

The genetic category is almost all of the time for people of middle eastern/Mediterranean descent. (Michael and I are the palest of pale people and are from Germany, England and Native American - I only got the cheekbones from this one, not the beautiful skin - descent.) In our first appointment, Dr. K told us that this was the most unlikely category for Ryder not only because of his ancestry, but also because of what symptoms he has.

There had been no change in what we knew about Ryder's fevers. There was not a new reason to put him through genetic testing that wouldn't have been present at the original appointment.

This is what bugged me the most. Why should we put Ryder through another test and pay out another $2,000 (insurance doesn't cover this test) when they can't explain that it is necessary?

We needed to talk to a medical professional we trusted. So I called up Dr. D's office and set up an appointment with him. Dr. D spent an hour discussing all of the results we had at that point from Ryder's blood tests, the letter Dr. F had sent him summarizing her thoughts about his illness, what his thoughts were after looking everything over and what our options were going forward. In the letter from Dr. F, she stated that the genetic category was highly unlikely and that he most likely had PFAPA.

Dr. D (oh how we love thee!) stopped all the double talk. He didn't talk in circles. He was very straight forward with us.

There were enough test results for him to feel comfortable in saying that it wasn't the second category of periodic fever syndromes (the one where it was dangerous for him to even try the steroids once). He also stated that from Ryder's symptoms, ancestry, etc, that the third category (genetic) could also be ruled out.

That left PFAPA. There is not a test for PFAPA. It is a diagnosis of exclusion. However, if when a fever starts, a small dose of steroids (not the bad kind) takes the fever away, that is a good indication that it is PFAPA.

Even though they weren't the bad kind, it really freaked me out to give him steroids....

Thursday, February 13, 2014

What's Cookin'

I've been busy cooking up a storm! There are recipes that cRock, warm you up and satisfy your sweet tooth. There is truly something for everyone!

Over at Recipes That Crock, you can check out this yummy Crock Pot Lemon Pepper Chicken.

Or how about some Crock Pot Bacon Potato Soup to help you get through this winter that will never end!

Maybe you are looking for a dip to serve at your next party. This Bacon Cheeseburger Crock Pot Dip is always a huge hit! (Can you tell I like my crock pot and bacon?)

Valentine's Day is literally just around the corner! Want to make a sweet for your sweetie that is seriously easy to make and yet looks like some kind of fancy, took all afternoon to create dessert? Check out this Ice Cream Sandwich Cake for Valentine's Day.

Maybe you have a chocolate lover in your life. This Chocolate Almond Cake is sure to please! It was devoured when I took it to our Small Group dinner.

That's just a taste of what all I have been up to! Enjoy!

Saturday, February 8, 2014

Ryder's Battle with Fevers (Part 7)

It's been a while...and I apologize. I could rattle off a long list of whys and excuses, but everyone is busy these days. So all I have to say for myself is, I'm sorry.

If you need to catch up (or refresh your memory!), here are the links: Part 1 - Part 2 - Part 3 - Part 4 - Part 5 - Part 6.

While all the blood draws and the trauma it brought on our family was going on, we were still dealing with fevers and still going back and forth with the specialist's office.

One of the three categories of periodic fever syndrome uses steroids to fight the fevers. However, if your child has the second category of periodic fever syndrome, it is highly detrimental to their health to take the steroid. Nurse K had told me this scary piece of information herself. She had also told me that the reason they wanted all the blood tests was to rule out that it was the second category. 

During a phone conversation with Nurse K a couple of weeks into the blood draw torture, she tells me to just go ahead and try the steroids. His fevers were too close together for them to get some readings they wanted (they needed at least one to be 3 weeks out from the end of a fever, but his fevers were closer together than that). I asked her if they had been able to rule out the second category already. She said they didn't have enough data yet, but she again told me to give him the steroid. 

At this point, I don't know if I was more confused, angry or scared to death of what kind of person this was that I was supposed to trust as the expert's right hand. I believe anger won in the end because when I reminded her that SHE was the one who had informed that it was highly dangerous to give him the steroid without knowing the results, she acted like the risk was no big deal.

This is my son we are talking about, and she acts like it is no big deal? I was ready right then and there to say good bye to this office, but was afraid I was overreacting. So I took a deep breath and did what my gut said. We endured the fevers and did not give him the steroid. 

More of the same conversations went on with Nurse K. She would call, I would get hysterical when she would contradict herself yet again. I was almost in a panic every time she called. She was telling me to do this or not do that to help Ryder and then she would tell me to do the exact opposite. Yet even when I pointed out to her what she had just said, she couldn't understand why I was so upset.

Then there was the straw that broke the camels back...(continue reading here for part eight)
Google Analytics Alternative