Sunday, May 27, 2018

November 3rd, 2014 was a day that changed my family's life.  It started out as just an ordinary Monday, my 4 year old went to part-day preschool and I took a photo of my 2 little princesses before my big girl went off to preschool. My 11 year old was at school.  My husband was at work and wouldn't be home until 3:30 PM.  My 13 month old was home with me, playing as usual with her favorite toys.  I was still exclusively pumping every 2-3 hours.  I actually was spending some time that specific day working on graphic designs for moms with babies they exclusively pumped for, too.  The kids got home from school and we were all in the living room together, they were playing and watching some PBS kids on TV.  The baby was walking around beside me and I saw her have a strange reaction.  Her body went stiff as a board then she dropped to the floor and began to make gasping noises while her little body convulsed.  Her lips and hands were turning blue.  I immediately grabbed her and screamed at the top of my lungs, "HELP!!" as I held her and ran out my front door where I thought someone may be able to hear me.  Her body started to shake rhythmically for about 20 seconds... her eyes were glazed over and she went completely limp and I screamed again, "My baby is dying!"  I put her back on the floor and checked her throat for obstruction, then instinctively started doing chest compressions.  She was not responding.  She lied there and I thought she literally was dying in that moment. My son took my oldest daughter next door and they called grandma and grandpa to come.  I had no idea what was happening to my baby.  I thought maybe she had put something in her mouth and choked.  I remember frantically trying to think of what to do, what would bring her back... I remember my neighbor running over and taking her from my arms and trying to help.  The words she shared on what occurred in her perspective are below.

"I didn't sleep a wink last night... I experienced something that no mother/daycare provider EVER wants to experience yesterday afternoon! School had just let out for the day, so things were a bit hectic with my boys coming in & telling me about their day, getting an afternoon snack, etc... with cartoons on the t.v & a baby swing with music playing, I could hear our neighbor screaming at the top of her lungs( from inside her house )... luckily [my husband] took charge here with the daycare kiddos, while I ran next door. What I saw was something I'll never forget as long as I live! I saw my neighbor on the floor holding/rocking/thrusting her completely blue, limp & totally lifeless 13 month old baby girl... the look on that moms face is something that will haunt me forever, there was nothing more she could do... I instantly told her to give me the baby, she handed her up to me, and that poor lil` one melted in my hands like jello, completely unresponsive... I quickly ran outside with her, thinking the cold air would hopefully help me jolt her, as we hit the air I started thrusting on her chest with my fist, I screamed for our other neighbor to call 911 & together her mom & I started cpr on this poor lil` thing! Somehow, by the grace of God, after what felt like forever... we got a breath out her, and then she cried! Luckily for us, what we had done worked, the baby had started to slowly get some color back in her face.... I was in complete awe at how quickly our 1st responders showed up to the scene, it was so unreal to see them flying up so quickly in vehicles & jumping to action.. They literally were running from every direction! Several of them, working together to check this baby's oxygen levels, calm the mom down & make arrangements to have her transported by ambulance.  It's crazy, because I've been first aid/cpr certified since I was 18 years old, thankfully I've never had to use it... but I've often doubted myself thinking in the heat of the moment, would I actually be able to remember what to do in the case of an emergency?? What had originally thought to be choking on a game piece actually turned out to be a severe seizure... She spent the majority of the evening at the hospital & is following up with her pediatrician for several more tests today... as for her mother, I can only image that she'll have nightmares about this incident for years to come!!! Seriously, how terrifying!! I'm a grown woman, and I was totally traumatized... it was nearly an hour and a half later until I could feel my hands again, as my entire body was numb.... I hugged my children a little tighter than normal last night & I hope with everything I have that I'll never EVER in my life have to use those skills again!!!"

My neighbor was my angel, she was able to help and get 911 called for us. I am so grateful for her and CPR knowledge. The EMT's responded to the 911 call very quickly- in less than 5 minutes, they were there. They did vitals, she had very low oxygen saturation but everything else seemed to be stable. No one was sure what happened. We took an ambulance to the emergency department which was just over half hour drive.  My baby girl was basically in a coma the entire trip, she barely stirred.  They hooked her up to everything wire in the ambulance, prepared to do whatever was needed to keep her tiny body going.
When we arrived, they did a rectal temperature and it read 100.8.  No other signs of sickness.  They took her blood, and we sat and waited and waited.  She finally started to wake.  The doctors said everything looked fine, that it was most likely a febrile seizure.  They explained that febrile seizures are quite common and chances were 50% it'd occur again, then told me what to do if that happened.  They suggested us coming back in to check with our primary care provider the following day.  My husband was able to come straight to the hospital and the three of us left about 6 hours later.

From then on, I watched her like a hawk.  I did not think febrile seizures would occur with such a low grade fever & without any signs.  I jumped into researching febrile seizures...  I wanted to be able to understand why & how it happened, as well as ease my anxiety so I'd be informed, prepared and her best advocate.  This child already had enough medical concerns, while pregnant the ultrasound detected several abnormalities and the doctor believed she had Down Syndrome.  She was born an emergency c-section because of serious heart decels during my 41 week induction. ASD- a heart defect was detected right after birth.  She was unable to transfer milk while nursing due to craniofacial dysmorphic disorder, laryngomalacia and severe tongue and lip ties.  She had clubbed feet.  She was considerably behind on milestones- especially oral motor/communication. Seizures were another set-back.  I hoped that it'd be a one time occurrence, but it wasn't.
The next seizure took place in March 2015.  She was 18 months old. I remember that day she seemed to show some minor stomach discomfort but no fever.  Not until after the seizure- it was 101 degrees when taken rectally at the hospital.  At this point, we were referred to an epileptologist at the University of Iowa Children's Hospitals and Clinics.  We were not able to get in until June.  The epileptologist said that these spells were unusual, however a febrile seizure can occur at any threshold- it's specific to the individual and all it requires is a quick change in temperature: up or down.  He instructed us to attempt to get videos of anything that seems like seizure activity and an MRI and EEG were scheduled.  Both were inconclusive.  The next visit with him he said that we would label this as a seizure disorder.
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Adding to the ones I described above, they kept happening.  A total of 8 seizures in 3 years time.
June 2015 was similar to the ones I described without "fever." The rest of them occurred with temperatures of 103 or above. February 2016, December 2016 (the first one I was able to video tape- see the video on YouTube) which was one she came out of and then went back into another one en route to hospital,  February 2017 and April 2017.  The Winter/Spring of 16/17 seemed to be the worst.  She had a total of 5 fevers and 2 different rashes in this time frame.
The epileptologist said we could try Keppra, an anticonvulsant drug commonly prescribed to prevent seizures. However the list of side effects included major behavioral changes and the potential to even cause more seizures.  With my daughter's delays, behavioral changes could make her regress significantly... I was looking for more answers, trying to find triggers, my instincts were telling me to keep digging.  I had joined Facebook support groups, talking to other parents with children that had seizures, discovering there were many things that worked- and many had found success with CBD oil.
For months, I had also realized my daughter had an unusual texture/consistency of her bowels- in came out gritty- like sand. She would hold in her poop and then get backed up and scream for hours until she'd let loose.  It was never very firm, it was the texture that bothered her.  I immediately found online that this was a huge flag for gluten sensitivity and decided we'd test this theory out by removing gluten for a couple weeks, as well as using high quality, organic children's probiotics.  It was ASTONISHING how quickly everything turned around from just this simple change.  Her bowel issues disappeared quickly, she started having a sparkle in her eye, it seemed she was healing cognitively as well.  I found that gut health is strongly tied to immunity.  Repairing her gut improved so much. We also started using CBD oil when we saw signs she could possibly have a seizure- for us one sign is her getting into a dreamy like state, muttering under her breath and pretend playing in the air with her hands.  The last seizure she had was the third time we used it.
The last seizure she had was  April 29th, 2017.
A year without seizures was approaching.  This was HUGE!  I held my breath, scared I'd jinx it.  The week before we reached 365 days seizure free, I scrammed to prepare for a celebration.   I wanted to commemorate this incredible milestone and put together a few things for her ONE YEAR SEIZURE FREE CELEBRATION.
I bought a purple dress then sent it to El & Em Boutique, in Lisbon, Iowa to place the design I had created onto the bodice.
I purchased some glittery jelly wedge princess shoes.
And a gorgeous bow made by Cherie at The Pink Barrette in Marion, Iowa!  Cherie is also the owner of the Cedar Rapids Marketplace- which is a great connection we have in our community to find & purchase local handmade products!
And here is my special 4 year old girl that's gone an entire year without seizures!💜 
She was so excited!  She knew this was her day and strutted her stuff all day.  We went to the park and played, then enjoyed some Gluten-Free Cupcakes I made using this recipe- but coconut oil instead of butter. My sister made some marshmallow fondant purple ribbons to top them.
We all enjoyed celebrating this day!  I'm crossing my fingers for another year without any seizures!!!
All opinions are my own, written by me. This post may contain affiliate links. This disclosure is done in accordance with the Federal Trade Commission 10 CFR, Part 255 Guides Concerning the use of Endorsements and Testimonials in Advertising. If you have any questions or have a product you'd like for me to review, please email


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