It is way past my bedtime. Â The clock is running towards 2 a.m. and, here I am, wide awake. Â I had a rough bedtime with the frog princess today. Â Although she asked to be taken to her crib to sleep, once there, she began to cry. Â So hard that, when I went to pick her up, I found a little present in her diaper (she’s very thoughtful like that). Â I cleaned her up, put her in the bed and, a few minutes later she was fast asleep. Â I waited a few more minutes and then attempted to set her in her crib once again. Â I was determined to just let her cry it out this time but, the wails tugged at my heart. Â A few minutes later, when I walked into her room once again, I found she’d cried so hard in those few minutes that she’d thrown up. Â Enter extreme mami guilt here. Â I picked her up, cleaned her off and, rocked her to sleep. Â This time, I put her in my bed where she stayed for the rest of the night without waking (thank God!).
The frog princess is due for her CT scan in the morning. Â As I went to crawl into bed with her, it seemed that my heart had other thoughts. Â I rose from the comfort of my bed to begin a discussion with The Man. Â The opening line was: I don’t think I want to get this test done tomorrow. Â We talked. Â I tell you what, The Man and I have many differences of opinion. Â We don’t always see eye to eye. Â Our breakup is teaching me a lot about what I say and don’t say (and how I should get better at opening up though, if you read my blog it might surprise you that I have a problem with that). Â The one thing that I can say without question and without reserve is that when it comes to our baby girl, we make an awesome team because our focus is her and her best interest.
1. The frog princess was diagnosed with Simple Febrile Seizures
2. There’s no necessary/consistent treatment plan other than ensuring that when the child is sick, a fever is kept under control
3. There are no promises that it won’t happen again
4. Research tells us that the febrile seizures do not cause brain damage
5. Research tells us that the occurrence of epilepsy due to febrile seizures is very small
6. Research tells us that febrile seizures are hereditary and I, suffered from one around 18 months (due to what my mom realized was roseola when Elena was diagnosed with it on her birthday)
7. Research also tells us that though there are some medications out there in the market, the side effects are long lasting and possibly damaging to a child. Â More so than whatever effects the seizure might cause. Â One site actually said that diazepam could be prescribed to children whose parents suffered from a high level of anxiety due to the child’s seizures. Â Are you serious?! How about you take a Xanax and call it a day?The appointment with the neurologist on Monday did nothing to ease my heart. Â She never even bothered to introduce herself when she stepped into the room. Â Because I was busy dealing with the cranky pants, I didn’t think much of it (you know how sometimes you get mami vision and all you think of/concern yourself with is the baby). Â Thinking about it and talking about it, however, I realized that I hadn’t been given an explanation for why we needed all these tests. Â Why the EEG? Why the bloodwork and why the CT scan? Â My main concern was that we’d tried the EEG once and the CT scan would be a lot more difficult to perform. Â How was I going to ask this child to sit still while being restrained. Â Also, exactly how was I supposed to keep her from eating for 8 hours before the test.Hours later, after reading, praying and being thankful that things weren’t as complicated as they could be, we came to a mutual conclusion. Â No tests were going to be performed at this time. Â It wasn’t easy. Â As a parent, you have to make sure that you do everything possible to keep your child safe and healthy. Â You also struggle with not wanting to question your decisions later, should something go terribly wrong. Â Our research told us that, while many doctors choose to do those tests, we couldn’t find a clinical explanation as to why it needed to be performed in our case.
Although I’ve been thinking about it since climbing back into bed, I think we’ve made the right decision. Â First off, I want to try one of the other pediatric neurologists that I researched. Â There’s no reason I can’t shop around, especially if I am not getting the answers that I believe I deserve. Â We will keep a close eye on the frog princess and make everyone aware of the measures that need to be taken should a fever present itself. Â Most importantly, we wanted our baby girl to not be put through unnecessary tests, discomfort and possible trauma without concrete and objective explanations. Â Decisions will always have to be made as we parent but, ultimately, WE are the ones that need to empower ourselves in the treatment of our children and ourselves. Â Doctors know a lot but, only YOU know your child.
My frog princess, tired and spent after a urine culture, bloodwork and an IV. I can't imagine putting her through something like this unnecessarily!
After writing this, I found these two links that might be helpful if you’re looking for more information on this topic:
AAP’s Clinical Practice Guidelines for Simple Febrile Seizures
The Neurodiagnostic Evaluation of the Child with a First Simple Febrile Seizure
You made a great choice. You were thorough, reasonable, well informed and you explored your options. The kind of patient that doctors hate! Hah. And, if things change in the future, you can always choose a different path.
Thanks, mama! I appreciate that. I think sometimes we forget that we can always change our minds later on, you know! Thanks for stopping by!
You’re an educated mom! Good job on doing the research and figuring out what’s best for the frog princess. Those tests equal dollar signs for those doctors. And find a new pediatric neurosurgeon!! Educated moms don’t have to take that crap! What a jerk!!!!
Hallelujah!! I am so proud of you. Many times and days in my practice patients will go to the doctor sit there in his /her office and just take everything they (the doctors) say as Gospel. They asked no questions! Then when I see them they have tons of questions! Keep doing what you are doing and always ask God for advice, discernment and wisdom. There are some great neurologists out there. If anyone of them is threatened by your questions or concerns, keep looking! Remember they are HUMAN just like you and I! If they can’t give you a probable reason for testing or anything else they want to do, let them know you are not satisfied. They also need to be honest and forthright and just admit that they just don’t know!
Again I’m proud of you Mami! God Bless you, The Man and your Frog Princess!
Thank you, Soror! I just heard that voice in my heart. I’ve known for a long time about making sure that you can advocate for yourself (I had to with mom) but I think every once in a while, we forget. I will keep you posted on how the next appointments go.
The articles that I postes, especially the one from 2008 support my decision. I will take it in to the next appointment I go to ;-).
Soror Sili, trust that God will lead you in the right direction in every area of your life…even concerning your beautiful Frog Princess. You did the right thing. You have to trust that the soft voice you hear can be trusted. I pray healing over Elena. God will protect her and heal her. I believe that!
Thanks! I really do feel as if He was the one that moved my heart. It is sometimes difficult to decipher but I pray constantly that I’ll be able to hear His voice and know, without a doubt, that it’s Him.
I’ve always known God’s got her. I just need to remember He’s got me too 😉
God bless you babes, as long as you let God be your guide, you cannot go wrong. You are such an inspiration to me in how you research things in depth before making any decision and I hope you are at peace with your decision. Trust your gut and His voice. Praying for you both!
xoxo