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Hi Everyone! Please consider donating and helping Harlow and her amazing parents- Dale and Dave. You can read about their story below.
Harlow turned 8 at the end of June, it was a great celebration. Sadly, a week later Harlow experienced her first seizure which lasted over an hour. The following is Harlow's story as explained by her mom, Dale.
On Friday, July 4th, Dave was painting a room upstairs so Harlow and I had an overall chill day. She got a little extra screen time in the evening as we were going to stay up a bit later than usual to watch some fireworks in the neighborhood and set off some sparklers. She typically goes to bed between 7:30-8. This particular evening she got to bed around 10. At 10:30 I went to bed and around 11 Dave went to bed. At that time everything was all good on the baby monitor in her room. A little while before midnight I woke up because I could hear her snoring on the monitor. I chalked it up to her being overtired as it’s common for her to snore in that type of situation. After a few minutes of trying to go back to sleep her snoring was sounding odd so I woke Dave up and asked him to check the monitor screen (it’s on his side). He looked and said she was on her side as usual (our monitor is old and the picture is grainy) so I tried to go back to sleep for a few more minutes. Finally around 12 I was like ‘something isn’t right’, her snoring almost sounded wet and I thought she may have thrown up so I went in to check on her. The second I got in her room I saw her whole body shaking with her eyes WIDE open. She was gasping for air and her pillow, teddy bear and bed area around her were soaked in drool. We immediately called 911. She was unresponsive to us and wouldn’t come out of the seizure. Fire got to us first and provided oxygen then paramedics arrived and administered anti seizure meds (around 12:30am) but even after that it took her a few minutes to come out of it. She had to be ventilated on the way to the ER as she was still struggling to breathe. Harlow didn’t speak until after 3am. The ER doctor took bloodwork and sent us home at 4:30am when everything came back ‘normal’. We got home and she slept for awhile but after she woke she was complaining about her head, eyes and chest hurting as well as having a hard time getting some sentences fully formed so I called her pediatrician and she instructed we take her back in and ask for some testing due to how long the seizure lasted. Five hours after being back at the ER Harlow got an EEG which came back abnormal. She displayed discharges for both focal and generalized seizures so they admitted us (diagnosed her with focal epilepsy) and got her on a loading dose of Keppra. The next morning she had an MRI which I haven’t been able to discuss with her neurologist yet but there are some things on there that sound concerning (mild PVL, mild hypoplasia of the corpus callosum and chiari l malformation).
Harlow has always been a little different from her peers. She’s very smart but has very low muscle tone and strength and has always been behind on her milestones, gross and fine motor skills.
Another thing to note (and I know this might sound crazy) is that she got a new teddy bear for her birthday. It had lavender beads inside and you can heat it up in the microwave. She was sleeping with that during the incident and it was soaked almost like she had the bears ear in her mouth when seizing. Between that, the paint fumes in the house, the fireworks, extra screen time and staying up late it seems as if this was all the perfect storm for her condition to show itself. I also believe that she has had smaller seizures that maybe we missed (gut feeling) but this was the first time we ever witnessed anything.
Back in April Harlow had a hard fall from trying to do the monkey bars at a playground (she isn’t strong enough to do these yet so she fell immediately and hit the back of her head/neck right where the chiari I malformation would be). She came over to me crying that her forehead hurt but I didn’t see the fall itself. The ER told us she was fine, no testing was done. Then in May she fell while playing outside and landed on her chin fracturing her alveolar bone and displacing all her front lower teeth. When I saw her (again, I didn’t see the fall itself) she was just laying there in a pool of blood, not crying at all but was confused and her eyes didn’t look right. My gut is telling me these incidents are connected somehow. I believe her dental injury could have happened during a small seizure.
Harlow was delivered vaginally but she was sunny side up so she was stuck while I pushed for about 3 hours. At that point the doctor said we needed to try the vacuum and if that didn’t work we’d be brought back for a cesarean. The vacuum worked but she was very swollen from the trauma of being stuck. From what I understand about her MRI results at this point her findings could have been due to birth trauma or the way her brain formed during infancy.
This past week has been a trying time for our family as we navigate Harlow’s new normal and what she needs after this diagnosis while the world continues to turn around us. With everyone’s help thus far we have been able to purchase a seizure alert camera for her room, a safe floor bed for her as well as many of the other little items she’ll need for her day to day life and put some money aside for her upcoming medical bills.
Any donations that we don’t use directly for Harlow we will be donating to the Epilepsy Foundation.
Thank you for reading our story, we are so grateful for everyone we have supporting us.