Three Years Seizure-Free + Disney Love

Every time it happened, I can remember the way my heart raced out of my body. Instead of panic though, mother’s instinct overpowered the fear, and somehow, I remained calm every single time. 

Three years ago was no different; Josh was sitting in his Svan high chair in the kitchen with his Developmental Therapist when he had his last major seizure. Mid-session as they played, he lost control of his own body and a seizure writhed and zapped him, for what seemed like an eternity. I remember doing something they tell you not to do: I carried my two year old to the couch and hugged him until the seizure ended. Josh’s seizures were never longer than 3 or 4 minutes, but they were long enough.

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Although I knew what they’d say, this time around, I called the paramedics to be safe. They arrived at the postictal state, the part where Josh is physically drained by the events. He sleeps for a good hour and is out of sorts for several hours beyond that.

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When these episodes happen, it’s hard to forget the emotions and details of the day. That day he wore a gray Puma sweatsuit that my brother and sister-in-law gave him for Christmas. I remember scooping him up after the first responders and paramedics examined him and hugged him some more. I declined the ambulance since he wasn’t in danger anymore, and sadly, because I remembered how much it would cost. This is a reality of habitual hospitalization and the state of insurance/medical care.

Josh ended up being admitted to the hospital that day so that the doctors could examine his levels and detect any other seizure activity. Since it was right before a snow storm, we knew things would get tricky and unbelievably complicated. For the first time, Josh and I were separated from Jack and Jeff for two days as we stayed in the hospital during the snow storm.

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Thankfully, Josh remained stable and was well cared for while we were in the pediatric wing. I’ll always remember the nurses who were exhausted, but remained incredibly patient with my boy. I’d always ask if they got in to work ok, and if their families were faring ok in the storm. When you have a chronically ill kid, your respect for those who work in the medical field magnifies.

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In these past three years, thankfully, medicine and close monitoring has permitted my boy to flourish developmentally. I’ve put life on hold at times to be present physically to be a taxi to therapy two times a week, be present for mid-day school pick up and specialists’ appointments multiple times a year.

Josh has grown leaps and bounds, with the help of his educators and therapists. His vocabulary continues to grow as big as his personality and as vibrant as his imagination. He’s so social and makes friends wherever he goes. Language is definitely difficult for him to interact with his peers at times, but he tries so hard. Big bro is always his biggest champion and helps whenever he’s around.

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In the fall, he’s about to embark on a new adventure in Kindergarten. He’ll most likely remain in the special education program for now, but with the (possible?) changes in education, I have fears or the unknown.

Nevertheless, I’m so proud of this hardworking boy who goes to school year-round and endures 8-10 various therapies a week in school and privately.

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When we reunited at the hospital after several days apart, Jack and Jeff gifted Josh a giant Mickey Mouse balloon that they found in the hospital gift shop. Like for so many, Disney and Mickey have always been our happy place. After what our guy has had to endure at such a young age, we always promised a Disney Cruise, or a trip to see Mickey Mouse once he was stable. Disney is our escape from reality and a reason to reunite when life gets full of distractions and complications.

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I may have been invited to the Disney Social Media Moms Celebration, but our family was celebrating so much more. On this past trip to Disney World and Disney Cruise, we celebrated Josh being seizure-free for THREE YEARS!! This is huge because we get to discuss weaning him off of meds again! Go Josh, go!

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Whether it’s with a giant balloon or a chance set sail with Mickey, I’m grateful we have something to celebrate. Thank goodness for three years.

 

#PurpleDay is Every Day

Every day is #PurpleDay around here.  As much as I loved seeing beautiful purple blouses and cool posters all in the name of epilepsy awareness, I didn’t see too much of the awareness being backed up.  With that in mind, I spent yesterday researching and putting together some information that I felt was missing on my Newsfeed.

In true Jen fashion, I researched and created my own epilepsy awareness info graphic that highlights some stats, different kinds of seizures and most importantly, seizure first aid.

As many of you already know, my younger guy was diagnosed with epilepsy at just four months old.  Since then, epilepsy has turned our world upside down.  With much thanks to excellent resources, support and the best medical care, this isn’t anything we can’t handle.

This is the face of epilepsy.

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J has frontal lobe epilepsy that is controlled by a cocktail of anti-seizure meds.  Epilepsy is an evil, but silent condition that, for us, can be maintained with medication and frequent medical care. Like many people who have epilepsy, my guy’s seizures are kept at bay when medicine levels are managed and triggers are monitored.

Unfortunately, breakthrough seizures can happen at any time.  So, it’s my hope to share seizure first aid with any and everyone, not just for my guy, but for the kid down the street, the student in school or even the stranger on the train platform.

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My most important recommendation, should you come in contact with anyone who has a seizure:  remain calm.  I can’t stress this enough.  As terrifying as a tonic-clonic seizure may look, time is of the essence.  Make sure the person is safe, their airway is clear and bystanders are gawking from a distance.  1-3 minutes for a seizure is typical, and trust me, it feels like a lifetime.

Never ever put anything into a person’s mouth during a seizure.  Move any harmful objects, cushion their head if they’re on the ground and don’t restrain them.

I wanted to spread more awareness, so I created this. I know I can’t be with my kid 24-7, so it’s my hope that with awareness, he’d receive proper attention. With that, please share and spread this info!

P.s. not sure why #9 got cut off, but it appears just fine in the original version. Just click here.

Got Boo Boos? Topricin Junior is a Medicine Cabinet Staple

On any given summer day, like many families, we can be found outside running around, riding bikes, playing pirates or whatever the kid’s imagination may conjure up.  The occasional injury is all a part of growing up, and with all of this summer fun, bumps, bruises, bug bites and boo boos are often the residual effects.

When I was a kid, if it wasn’t my older brother breaking bones, it was clumsy me falling off my bike and getting bloody knees or black eyes.  It wasn’t the injury itself that was painful, but the aftercare that subjected the trauma and excruciating pain.  I have no idea if my mom used salt spray laced with battery acid to clean our wounds, but whatever it was, it hurt like crazy.

As a family that leans toward more homeopathic remedies, I was so glad to be introduced to Topricin Junior.  A Healthy Child Healthy World parent ambassador and a green mama, in general, I do my best to steer clear of harsh chemicals in the conventional medical aisle. (Tea tree oil is my go-to antiseptic) Even if products are geared to kids, I can’t help but question, are they really safe?

Topricin Junior from Topical Biomedics is a pain relief and healing cream that’s intended for injuries such as bumps, bruises, bug, bites and burns.  It is said to relieve muscle spasms, leg cramps, sprains and strains—minor injuries that are sustained from horseplay or sports activities.  Aside from the pain relief it provides to the younger set, Topricin Junior seems to do it without the use of harsh chemicals.

Topricin Junior is fragrance and paraben free, contains no mineral oil, lanolin, menthol, petroleum or other chemicals that may be too overpowering for our little daredevils’ skin.

And like most preschoolers in that “I Can Do it Myself” phase, my kid, of course, wanted to apply the cream himself.  Because of the safe composition of Topricin Junior, I had no worries about the chemicals, or that it would be harmful if he applied it himself.

Now, after the spill he took on his scooter the other day, I didn’t use the cream on the open wound.  I did, however, use the cream after his wound closed up a bit.  From what he described, the cream wasn’t painful when he applied it, and from what I saw, it seemed to do the trick.

I love that Topricin Jr. is fragrance free and doesn’t leave stains.  The cream uses some ingredients that are plant and vegetable derived, unlike most products that line the first aid aisles.  Topricin Jr. is easy to use, seemed to help with the healing process and most importantly, doesn’t contain all the harsh chemicals that, in my opinion, hurt a little more before and after they actually help.  Not only do I give Topricin Jr. a seal of approval, but so does Healthy Child Healthy World and PTPA.

While nothing can heal as “effectively” than mama’s kiss, a safer pain relief cream such as Topricin Jr. is a staple in our medicine cabinet.  Now, if only this cream could curb any unnecessary stunts or spills that make my heart beat out of my chest!

Find it

Topical Biomedics also offers Topricin and Topricin Foot Therapy Cream.  The creams can be found at many health and organic stores, as well as online.  Additionally, Topricin products are now available at Vitamin Shoppe, Vitamin World, Whole Foods, and Wegman’s.

Full disclosure: I received product samples to facilitate this review.  As always, all opinions on NKT are my own.

Off Your Desk: New Service Helps Families Save Time and Money

From babies to big kids, for most of us, it seems one thing’s certain: at one point or another, we’ll end up at the doctor’s office with our kids. Kids get sick, adults get sick—we all get sick. And if you don’t? Well, lucky you :)

Insurance and health care is a hot button topic these days, but beyond the political firestorm, there’s a service that can help us navigate through the insurance paperwork that doctor visits often bring with them.

Did you know that 40 percent of health claims are mishandled or not fully reimbursed to the extent they should be by insurance companies? Also, consumers are paying out-of-pocket for an increasing proportion of their health care expenses. Off Your Desk is a new service helps individuals submit their insurance claims and makes sure that they get paid to the full extent that they deserve.

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Holly Robinson Peete to Host Webinar on Food Allergies

Because allergies run rampant in our family, this topic has been on my radar well before I became a parent.  Once I became a mom, introducing food to the kid with the possibility of food allergies became an even bigger reality.  Aside from real-life experience by helping my younger brother cope with being “allergic to the world,” my husband and I researched to educate ourselves for the uncertainty of having a child with food sensitivities.

Amidst all the gatherings this time of year, it’s the parties and family events that can be a cause of concern for allergic reactions.  After being so cautious with anything new that the three year old has eaten, over Christmas, he had an allergic reaction after having some cashews.  Of course, the reaction happened the evening of the post-Christmas blizzard and weather conditions would have complicated everything.  Thankfully, the kid is at an age where he can verbally communicate with us now, and immediately told us that his tongue was itchy—a telltale sign of an allergic reaction, and something that I always remember my brother describing after eating various things he was allergic to, when we were kids.

Always reluctant to let the kid have nuts in anything, for some reason, I thought he would have been ok trying cashews for the first time that night.  I thought he was in the clear with any nut allergies, but I was wrong.

The kid’s hives, swollen lips and an itchy tongue was enough to remind us that not all foods are safe for our allergy-prone kid.  Thankfully, we had Children’s Benadryl onhand to remedy the situation and that it didn’t require a trip to the ER.  We learned from this terrifying situation and are grateful it didn’t transpire differently.

Because of our family’s allergies and my interest in sharing this sort of information to other parents, I will be logging into a video webinar on the topic tomorrow.

Super Bowl Sunday is the second biggest eating day of the year after Thanksgiving. Since severe allergic reactions to food send 90,000 people to the emergency room annually, TV personality Holly Robinson Peete of CBS’s The Talk (who is married to former NFL quarterback Rodney Peete) will be hosting an online video webinar about handling food allergy dangers at gatherings like Super Bowl parties. Nine out of 10 people say they will be attending one this year, according to a recent Nielsen survey.  Since Holly’s four children all have some kind of food allergy, she has plenty of expertise in this topic.

After the webinar, I’ll be one of a few bloggers who will ask Holly questions pertaining to allergies and her experience.  It’s always interesting to hear other parents shed light on issues that hit so close to home.  I’ll of course share Holly’s insight after the interview, but I’d also like to invite you to watch the online webinar.

Allergy Friendly Superbowl Webinar with Holly Robinson Peete

When: Tuesday, Feb. 1, at 5 p.m. ET (2 p.m. PT)

Where: Click this link
to get to the webinar, where you will be able to watch Holly via live video feed: http://agencyroad.na4.acrobat.com/allergyfriendlysuperbowl/

Full disclosure: I am being compensated for my participation in this webinar and Q&A via TheMotherhood. The webinar is being sponsored by Dey Pharma L.P.  As always all opinions on NKT are my own.

TempleTouch: Convenient and Non-Invasive Thermometer

We all probably have an arsenal of medicine, homeopathic remedies and gadgets in our medicine cabinet to help ease our little ones’ illnesses.  One gadget, however, I’ve found that’s always either hit or miss: the thermometer.

Because my husband works in the health and beauty sector, as I’ve mentioned, I often get a chance to sample some of the latest products, and that includes a slew of lackluster thermometers.  They either take too long, are inaccurate or inconvenient to use for a small child.  Sadly, I have yet to find a thermometer that’s affordable and also works well.


While visiting the MomSelect Swag Suite, I visited the Temple Touch table, and like the cynic I am, I was reluctant to try it.  Afterall, after trying at least 15 or so mediocre thermometers, how could this one be different?

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McNeil Recalls OTC Children’s Products; Helpful Links

If you keep up with the news, then I’m sure you’ve heard by now about the McNeil Recalls involving OTC children’s medication such as Tylenol and Motrin.  There’s no need for me to rehash what’s been already said, but as a quick synopsis:

McNeil Consumer Healthcare, the makers of OTC medication such as Tylenol, Motrin, Benadryl and Zyrtec, have issued a voluntary recall on a number of products because they fail to reach quality standards.

Don’t want to wade through the long list of recalled products?  Head over to Tylenol’s site and enter your bottle’s product numbers here.

WAIT! Before you throw out your bottles of Tylenol and Motrin that are included in the recall, save them so you can get a refund and/or coupon.  According to the NY Times Bucks Blog, you have to call or email the company to get your coupon for new product.  It’s advised it might be best to reach a representative directly 1-888-222-6036.

Honestly, at this point, with various recalls lingering, I’m leaning toward the generic route if I need to administer any meds for the kid, which is truly, really rare.  (Note: I have no idea who makes it, but I like Target’s generic products) And back to McNeil, I’m one to try and push to get my money back in lieu of a coupon.  If you do get through to the company, let me know how it goes!

US News and World Report listed some helpful suggestions for alternatives to medicine for kids.

Humidity. Humidifying the air is useful for cold symptoms because it helps the cilia, tiny hairs in the lining of the nose and sinuses, move mucus out of the nose.

Nasal irrigation and saline sprays or drops. Both saline sprays and nasal irrigation work by the same premise—decreasing the amount of mucus and crusting in the nose, which reduces congestion and obstruction. Nasal irrigation kits, including the neti pot and squeeze bottles, are sold over the counter along with packets of ingredients that can be mixed with water to create a saltwater solution to flush out the nose. Saline sprays and drops are also sold over the counter and can be sprayed into the nose safely, without irritating the nasal passages in children, according to the Mayo Clinic.

Nasal suctioning. Using a bulb syringe to suck secretions out of the nose can help clear nasal passages in babies, Tunkel says. Parents should gently push the bulb into the nose no more than a half-inch deep. For best results, put several drops of saline solution into the nose before suctioning, the Mayo Clinic suggests.