Infectious Diseases (It sounds worse than it is)

Yesterday was our 2nd appointment at Cincinnati Children’s to (hopefully) figure out what is making Zoë have these recurring fevers. I went in with a list of questions and got most of them answered without me even having to ask. Which is great because it means that they are on top of it.

So here is a basic run-down of my notes from the meeting:

She looks good when she’s healthy, which is a great sign. It means that, even though these fevers are highly annoying, they are very likely not serious. No signs of cancer (Thank God!), although we may end up checking into that more thoroughly if we don’t get any answers in the future. But as of now, we can say that it’s not.

Possible causes:

Recurrent viral infections

Recurrent fever syndroms (PFAPA, etc.)

Rheumatological diseases

Primary immuno-deficiancies

But here is the problem…she doesn’t ‘fit’ any of those molds. No swollen lymph nodes, no swollen joints, no canker/mouth sores, no swollen eyes. She just has a fever.

So in an effort to collect all data, I’m in charge of keeping a fever journal for now. Dates, times of readings, temperature, etc.. I was pretty much doing this already, so it’s not much different. I think they are hoping a pattern emerges because that leads us to a fever syndrome and those are the best-case scenarios. And they will keep in touch with us until either the fevers cease or we find out what’s going on. Which makes me really happy….I’m just so used to being brushed off by doctors that it’s nice to have them actively pursuing our issue!

Zoë did have blood drawn and was a complete trooper. She didn’t cry and barely fussed, I was completely amazed. What a strong little girl! And the major benefit we have with having a MyChart account is that I got her results an hour later. Based on what I saw (and compared it to her last panel), she’s normal. No real signs of infection. Her doctor did call me this morning, but unfortunately, called at a time where I couldn’t answer the phone. I’m sure he will call back later, but I am also pretty sure he’s not going to tell me anything surprising.

We have the option to push for a more expensive test that may not be covered by our insurance. I’m a little nervous about the cost, but may go that route if the doctor suggests that we could benefit from it. I get a little apprehensive when a doctor says something is expensive and not always covered though…you never really know what they mean by expensive. And while we have really good insurance coverage and a healthy HSA account, I don’t know that I want to attempt to justify a significant cost if it’s not really worth it. So we will see how our doctor wants us to proceed.

This is all part of the answer to a question I asked though…what if we DON’T find the cause and she keeps having these fevers and seizures? And the answer is that we go fishing for answers. That’s when we start testing for cancers that we’ve ruled out and looking for the completely obscure illness that aren’t currently on our radar. But we will cross that bridge when we come to it. I’m still hopeful that we get some answers, even if it’s just that she’s highly susceptible to illnesses.

I will say that I feel significantly better. I have anxiety issues as it is and all I could think was that something was seriously wrong and we were going to get horrible news. So for them to say right off that they really didn’t think it was cancer and for her blood work to come back normal is amazing. Now we just wait and see what her MRI results bring. Hopefully, it’s more of the same good news!

~K~

Apparently, boundaries mean nothing…

So I’m frustrated…pissed off….hurt.

I know nothing is sacred online. But I’ve had to move my blog before because of bullies. And I just found out that it may again because it was shared without precautions being taken. Certain people have found my place and decided to infiltrate, even when they’ve been told that they are to stay away. So this is to them (to everyone else reading, I apologize):

You want to complain about not being in my kids’ lives? Maybe you should take a look in the mirror and explain to the people you are complaining to that it’s YOUR fault. You are not as pure and innocent as you seem. You’ve been asked and told to stay away from MY family. My kids don’t need you to be a martyr for them because we all know that’s what it is. It’s never truly about them, it’s about you.

My kids will be far better off with you out of their lives…why do you think WE made that decision? You need to respect the boundaries put into place. As far as I’m concerned, you don’t exist anymore. They don’t know who you are and they never will. This is because of YOUR actions and the way YOU deemed to treat me (their mother!).

We don’t need you and we never will. Believe it or not, we are doing fantastic. We’ve got a GREAT life….WITHOUT you in it. In fact, we’ve been so great without you. It’s fantastic.

This blog is for people who actually CARE about my kids…you have proven time and again that all you care about is yourself. Pity you, poor you. They’re horrible people, I never did anything wrong, they treated me bad, etc., etc., etc..

You posted something about how cutting toxic people out of your life isn’t bad but self preservation. Guess what lady? You’re toxic in a VERY big way. You’re a cancer we don’t want in our lives. And I feel sorry for the people who you have fooled. It’s only a matter of time before you turn on them and treat them the way you have treated me.

So it’s done. You’re out of our lives for a reason. Don’t post anything about my kids. Don’t talk about my kids. As far as you’re concerned, they don’t exist. Go away and stay away.

I see BRRAAAIINNNNSSS

Ok, so not really. But today was Zoë’s appointment with the neurologist. To be honest, I’m an obsessive researcher, so the appointment went about as I expected. Which is a good thing. The only surprises I like any more are gifts of camera equipment or chocolate. 😛

I was immediately impressed with the doctor when he walked in. He was great with Z, and truly understanding of the situation. We are so blessed to live where we do and to have the resources we have!

He thinks she is having focal onset seizures, which pretty much means that it’s localized in the brain…at least at the start. It’s not normal in febrile seizures (because we can’t have a simple diagnosis, oh no! She has to have complex febrile seizures), but it’s also not something we really need to be concerned with. The paralysis is slightly more concerning, but again….not majorly. We are being sent for an MRI (as I expected) just to ensure that there isn’t something going on that we aren’t aware of. Unfortunately, it’s not set up until October 28th. Another norm, I guess. I hate the waiting game, but I get it. So we won’t have those answers until Halloween time.

Dr. Arthur also set us up with a prescription for a medicine to give her when she has her next seizure (hopefully, never). Pretty much just to help her come out of it quickly. Seizures will still last 10-15 minutes most likely, but he’s hopeful they won’t go beyond that. And if they do, we need to get her checked out. We also have protocol in place to check her temperature every time a seizure happens, just to make sure they stay febrile and don’t deviate into something more.

Most children who have febrile seizures (usually occurring between 6 months and 6 years) apparently only have 5. We’re up to 3 (that we know of). So I have a feeling we’re going to be one of those unlucky ones that has more than the average bear. He also said something about kids only usually having fevers 1 or 2 times a year and I laughed. To be fair, Paige and Kira only get 1 or 2 a year…poor Z! The seizures won’t (shouldn’t?) cause any sort of brain damage and her chances of developing epilepsy is only at 2% (normal kids have a 1% chance).

Something I didn’t think about until I was filling out paperwork is that this child has always had issues with breathing/temperature control. She was the only one of my kids to be put back on a monitor right after birth. So it may just be that the part of her brain that’s supposed to keep her level isn’t as developed as it needs to be. And that would be just a waiting game for that to mature.

So as I said, I expected this. Right down to the order of an MRI. And I really felt comfortable with Doctor Arthur, I feel like Zoë is in good hands with him.

Now we wait again. Next week’s appointment will tell us more of what’s going on and what they are going to test for. Her blood work came back with a few high numbers and a few low numbers, so I’m interested in what direction that is going to take us. My mommy-gut says we’re looking at something autoimmune, especially since I have vitiligo. Apparently, that’s an autoimmune disease and it’s very likely that I’ve passed something down genetically. No, for the record, I’m not blaming myself. It is what it is, not like I ever asked for that! And I didn’t realize that it was considered an autoimmune disease until I started researching possibilities. But we still could be looking at a reoccurring infection and there’s still a tiny, tiny, TINY chance that it’s the “c” word. I’m preparing myself for any possible scenario.

I did sit Paige and Kira down today at lunch and kind of (in the simplest, least scary way) explained what was going on. More because I’ve been incredibly on edge with my anxiety running so high and they need to know that it’s not them. Although picking up their toys or doing their chore the FIRST TIME I ASKED FOR CRYING OUT LOUD would help out tremendously. But I think Paige at least understands that Zoë is sick and we’re going to try to find out why. Kira doesn’t get it….she’s 4, I don’t expect her to.

So that’s where we stand. Still praying and crossing my fingers that we find out what’s going on and that it’s something easily treated.

~Kelley

When the poop hits the fan

I’m resurrecting my blog due to needing to keep people updated. Our youngest daughter (Zoë) is 18 months old. Since January, she’s had recurring high fevers. This past weekend put us up to 9. They hit quickly and they hit HARD. One minute, she’s fine and the next minute she’s almost 105.

In May, she had a febrile seizure. As far as we know, it was the first….but we don’t know for sure. She had another one this past weekend, quite possibly 2. Her seizures are absent, so it’s difficult sometimes to tell if she’s just tired or if she’s actually seizing. Saturday morning’s seizure was terrifying. When she started coming out of it, her entire left side was limp and unresponsive. We took her to the ER where they tentatively diagnosed her with Todd’s Paralysis and a febrile seizure. Thankfully, it was short lived (a few hours) and she was walking before we left the hospital. We also left with instructions to set up an appointment with the neurologist.

Monday morning, I called and set up our neurology appointment and called our family doctor to get her in. Until Monday, I never felt like I was being taken seriously when I brought her in. I was always told to give her meds, so her fevers were never high in office. Our appointment was at 230. At 1030, I dosed her with Motrin because she was over 102 and gave her a bath. Once I got her out of the bath and dressed, she was visibly shaking and her extremities were bluish. Took her temp and it had fallen all the way to 96..this child! Don’t worry, an hour later she was back to 102. And then we went to the doctor….they got us back right at the time of our appointment and took her temp. It had climbed to 104.3. FINALLY. I HATE that my baby was feeling so terribly, but they took me seriously! We discussed our options and then got sent to Cincinnati Children’s to have her blood drawn.

Her results have finally come back and because of them, we are now referred to an Infectious Disease Specialist. We see her a week from tomorrow. Unfortunately, the results really don’t tell us anything right now. It could be a virus, an infection, autoimmune, or even cancer. Or it could be nothing and is something she will outgrow in time. We really don’t know at this point.

Not going to lie and say I’m not freaking out. My gut does say that it’s not cancer, but I’m trying really hard to not think about the what ifs. And right now, I don’t really know where to even start to look for answers. We’re in a holding pattern until we talk to the neurologist and the specialist. I’m praying it’s nothing, but preparing for the worst.

~kelley