So Much For Being Cleared For Seizures

Jewell has had very short duration staring spells since she was pretty young. The earliest I remember her having them was at 3 1/2 years old. Initially I blew them off as her daydreaming, but they did concern me since it was impossible to get her attention during one. It wasn't that she didn't respond to her name, because she never really did that, but it was that she wouldn't even respond to my touching her shoulder or waving my hand in front of her face. Eventually I decided to make a mental note when they happened but not to be overly concerned, because how many different "issues" could she possibly have?

At one of Jewell's visits with her Developmental Pediatrician last year, I was asked if she had staring spells or episodes where she stopped in the middle of doing something, then went right back to doing whatever she was doing after the pause. My heart sunk. At that point, I had kind of gotten used to thinking of them as "just daydreaming" and had never thought to bring them up to one of her physicians. I described them to her doctor and admitted that I was pretty vague on the details, but that she had them on occasion and not very often. They were always really short. We decided to add a visit to a Pediatric Neurologist to get their opinion.

Jewell has had an EEG and a MRI (with sedation), both of which came back normal and gave me that bit of hope that we didn't have to worry about seizure activity. Her neurologist even said that we didn't have to come back to see her, unless something else happened to require further evaluation. I was super excited to knock a specialist off our list!

Then yesterday morning it happened. Jewell woke up happy and singing. She proceeded about her morning as usual. She started drawing pictures, still singing and chatting to herself. After she threw one of her art mishaps into the recycle box, she paused and just stared at the wall. I was several feet away from her and being puzzled at her behavior I went over to see what she was looking at. When I was about 3 feet away from her, she snapped out of it and proceeded to grab a sheet of paper out of her art drawer. When she turned around I noticed her pupils were huge. Several minutes later, it happened again. This time she was retrieving a new piece of paper and had sat it down on the table. She then sat on the arm of the kitchen chair and just stared off into space. I noticed that her pupils were dilated and her expression was blank. I waved my hand in front of her face and said her name, and there was no response. My next thought was to grab the iPod and try to get video (later I realized I should have touched her shoulder or nose to see if she responded). Normally when she sees me preparing to video her she will say "no iPod" or "no video". She said nothing, but made a small noise and snapped out of it before I could start the video. This time she seemed confused and grabbed the clean sheet of paper, balled it up, and threw it in the recycle box. She was very subdued and quiet afterwards, and it seemed like she was tired.

I sent her to school, like normal, and let them know what I observed. They reported that she had a good day and they didn't see any other "episodes". I also spoke with her neurologist and we are back to monitoring her for more episodes like this. The next time she wants me to touch either her shoulder or nose and see if there is a response. She will also be speaking with her Attending to see if we should pursue more testing or just continue observation for now. She did admit that they sound a lot like absence seizures but that they could just be daydreaming, and that absence seizures can take awhile to diagnose or rule out.

I just hope we can figure it out soon. I might need to contact 4 Paws for Ability and inquire about adding seizure detection to Jewell's service dog's duties. It's always something!

Schnoodleware Dog Toys Fundraising Campaign

We have teamed up with Schnoodleware Dog Toys to run a campaign to raise funds for Jewell's Autism Assistance Dog. "Schnoodleware makes a fabulous line of dog toys to do just that. We invite you to browse our selection of colorful unique fleece dog toys and choose one that is just right for your dog. In doing so 10% of your total purchase will be donated directly to Jewell's fundraising campaign. Schnoodleware fleece tug toys are durable, washable and assembled in the U.S.A."

Just enter "4jewell10" at checkout to have 10% of your purchase donated directly to 4 Paws for Ability in honor of Jewell. By using "4jewell10" you will also get 10% off your purchase price.

Mother's Day and Sprained Ankles

Jewell and Mommy

My Mother's Day ended with a visit to Patient First with Jewell. She had slipped on an area rug at my parents' house and sprained her right ankle. Thank goodness it wasn't a break!

Jewell normally has very little reaction when she gets hurt. She might fuss over having a "Boo-Boo" and want some "medicine spray" on the injury, but there are never any tears or dramatics. She shocked and worried us when she let out a loud yell when she slipped. I kept waiting for her to jump up and continue on her way to the playroom with her cousin, Shakira. I waited for 30-45 minutes before deciding that she definitely needed to have it checked out, just to be certain. The deciding factor was when she started crawling around and refusing to walk.

Jewell in wheelchair at Patient First

As you can see in the picture on the right, she was fine once we got to Patient First and especially when they offered her a wheelchair ride. The x-rays didn't show a break, so after wrapping her ankle with an Ace bandage and fitting her with a boot we were done.

As of today, she is wearing her regular shoe on her right foot. She still says the area near her little toe is sore and she is walking on the heel of that foot, but it appears to be getting better. She didn't have any bad bruising or swelling, so that is also a plus!

I hope everyone else had a less exciting Mother's Day!

We are now also on Causes.com!

I just finished setting up a campaign on Causes.com to help our fundraising efforts for 4 Paws for Ability. The upside is getting the information out there. The downside is that I could only set the campaign to run until May 22, 2014 due to Causes.com changing providers.

https://www.causes.com/campaigns/77421-raise-money-for-4-paws-for-ability

Press Release

 

Contact: Christa Staples

 4PawsforJewell@gmail.com  

Contact: 4 Paws for Ability

253 Dayton Avenue

Xenia, Ohio 45385

(937) 374-0385

www.4pawsforability.org                           

---

FOR IMMEDIATE RELEASE

Service Dogs Help to Gain Independence and Confidence for Children and Give “Piece of Mind” to Parents

Conowingo, Maryland, April, 27, 2014 -- Like most 7 year old children, Jewell Staples is a perfectionist and is curious about the world around her. She loves art and music, is energetic, and thrives on having a routine. She goes to school and is in the 1st grade, but unlike most of her peers, Jewell requires modifications and a paraprofessional aide to get through her day. Her parents have never had a back-and-forth conversation with her even though she speaks very clearly, and has a large vocabulary.

Jewell has received a myriad of diagnoses including Autism Spectrum Disorder and Severe Mixed Receptive-Expressive Language Disorder. She exhibits decreased processing in sensory integration and cognition, hypermobile joints, and low muscle tone. She also has trouble staying on task and difficulty with socialization. Jewell has to be under constant supervision and is prone to wandering. In addition to services she receives at school, she also attends several different therapies throughout the week including occupational therapy, speech therapy, and music therapy.

Jewell and her mother were introduced to a service dog several years ago when Jewell attended dance therapy. Jewell was immediately drawn to the dog, and her mother discovered that the family received the dog from 4 Paws for Ability. While researching the benefits of service dogs specifically for Autism, she learned that they can help with wandering behaviors, soothing meltdowns, and that they can be a bridge for socialization, all of which Jewell struggles with on a daily basis. At the time, Jewell’s family decided to hold off of trying to acquire a service dog until a later date. That later date has finally come, as the need for assistance to keep Jewell safe is becoming more necessary with each passing day.

After completing the application process, Jewell has been approved for an Autism Assistance Dog. Her dog will be trained in behavior disruption, tethering, and tracking. The 4 Paws for Ability website states, “At 4 Paws we have discovered a magic that exists between children and dogs, a magic that can become a life-saving miracle for a child paired with one of our Autism Assistance Dogs.” Jewell’s family is also hoping that the dog will provide her with the companionship and independence that she is currently lacking, as well as to help increase her confidence.

The cost to train one of these service dogs is $22,000. Jewell’s family has committed to helping to raise $14,000 for 4 Paws for Ability in support of their mission and can achieve that goal with your help. Please visit www.4pawsforability.org/donate-now/ to donate, and make sure you note that your donation is made in honor of Jewell Staples. You can also donate at http://www.razoo.com/story/4-Paws-For-Jewell or find more information at https://www.facebook.com/4PawsforJewell.

About 4 Paws for Ability:

The organization was founded in 1998 by Karen Shirk, after having difficulty obtaining a service dog for herself from traditional service dog agencies. 4 Paws for Ability is a nonprofit, 501(c)(3) organization whose mission is to place quality service dogs with children with disabilities and veterans who have lost use of limbs or hearing; help with animal rescue, and educate the public regarding use of service dogs in public places.

Media Contact:

Whitney Hitt

253 Dayton Avenue

Xenia, Ohio 45385

(937) 768-9096

whitney4paws@aol.com

Media@4PawsForAbility.org

www.4pawsforability.org

Jewell's Story

Jewell's 1st visit with the Easter Bunny (2014). 

Jewell is a happy and energetic 7 year old girl. She is a perfectionist, curious about the world around her, has an infectious smile and a contagious laugh.  She loves animals, nature, drawing, singing and Legos. Jewell enjoys going to the playground and swimming.

Like most kids her age, Jewell loves to play and wants to make friends. The difference between her and her peers is that social situations are really difficult for her. She has many sensory issues that make every day a challenge. While she is very verbal, not much of her speech is used for communicating socially. She uses mostly repetitive speech (echolalia) and scripted speech. Luckily for Jewell, her peers at school are excellent helpers and try to include her, in addition to trying to help her stay on task with her schoolwork. She also has a dedicated paraprofessional aide to help her get through her day at school.

We noticed that Jewell’s language wasn’t developing normally when she was around a year old. She seemed to get frustrated and agitated easily. Her pediatrician recommended contacting our local Infants and Toddlers program, and we got her started in early intervention services. After her 3rd birthday, we had her evaluated at Kennedy Krieger Institute’s Center for Autism and Related Disorders when it became apparent that her social skills weren’t developing and she continued to become more withdrawn. Jewell received a diagnosis of Autism Spectrum Disorder, as well as severe mixed receptive-expressive language disorder, developmental delays, neuromotor abnormalities and oral motor apraxia. Later she was also diagnosed with sensory processing disorder, hypotonia, joint hypermobility, Charcot-Marie-Tooth disease (X-linked) and hyperkinetic syndrome. She is currently being monitored for possible Ehlers-Danlos syndrome, seizure disorder and pica.

Our first experience with a service dog was at a dance therapy class that Jewell was enrolled in from 2011-2012. A family that attended with their children had acquired a service dog through 4 Paws for Ability. Jewell was immediately attracted to the dog, and his presence in the room was calming to her. When she felt stressed she would go over and lay with him (with permission). I was amazed and researched the organization, along with the possibility of a service dog for a child like Jewell. At the time we decided to hold off on starting the process of getting her a service dog.

Now we have decided that it is time to get the ball rolling, as the need to keep Jewell safe is becoming more necessary with each passing day. Her wandering behaviors are increasing, as is her desire for independence. She no longer is satisfied with having to hold Mommy or Daddy’s hand when out in public. Having a service dog will enable us to have the ability to track her if she does happen to wander, on top of giving us the ability to tether her to the dog when out so that she can have more independence from us and feel more like a 7 year old girl. The dog will also be trained to disrupt behaviors, which will make it less obvious to others that she is doing them in the first place. Our hope is that she will also gain a companion and friend that will love her unconditionally.

We have completed the application and interview process, and Jewell was approved for an Autism Assistance Dog. It will cost 4 Paws $22,000 to place a dog with Jewell. We are committed to raising $14,000 in support of the 4 Paws Mission and can reach our goal with your help. Any help that can be provided would be greatly appreciated. If you can help us with a tax-deductible donation, please click the green "Donate" button on the right or visit the 4 Paws Donation Page (http://www.4pawsforability.org/donate-now). You can also mail a check with Jewell’s name on the memo line to: 4 Paws for Ability, In Honor of Jewell Staples, 253 Dayton Ave., Xenia, Ohio 45385.