Our life dealing with Epilepsy.

Our journey started in July of 2002 our car had broken down and we went to go get it.We left all the boys at home.We got home and were told our almost 11 yr old son Daniel had a seizure and was at the E.R. at Mary Bridge.We raced over there and were totally freaked out.We knew nothing about seizures and Epilepsy.We saw the doctor who assured us he probably would never have another that it was probably a fluke.I later found out he was watching his brother play a car racing game on the computer,so I asked if I should keep him away from the computer and was told it probably wasn't related.We were given the basic instructions and sent home.

He was Supposed to stay up all night later that week for a sleep deprived EEG.He asked if he could use the computer and I told him to go ahead after all the doctor said it was okay.Five minutes later he had another Generalized Tonic Clonic (Grand Mal) we were so freaked out.We were told it was a fluke it probably wouldn't happen again.They were wrong and it happened over and over and over.

It's continued happening for 17 very long years.We met the Neurologist who I didn't care for at all and did the whole myriad of medications.A lot of them had horrific side effects.We tried the Ketogenic Diet,The VNS and even looked into brain surgery.Our son was having seizures so often more than I could even count.He also was having a lot of injuries and countless ambulance rides and hospital visits. 

People we were once close to didn't want to come around anymore including relatives,because they couldn't "deal" with it. It was so disheartening and lonely.

We also started noticing cognitive changes in Daniel.His sister Ariel started having issues as well in her case it started with cognitive decline at 9 it was very significant and seizures started at 12.

 His brother Michael started having cognitive issues as well and also started having seizures.His started at age 14.

 

Our lives since then have been filled with doctors,hospitals,ambulance rides,surgeries,medications,EEG's and a whole lot of injuries.More than I could ever share in a brief post.

 Epilepsy to me is so misunderstood and under reported People don't understand the significant danger seizures can cause.Both Daniel and Ariel were given Make A Wish trips meaning the doctor had to write that their seizures are life threatening.

It has been a very rough road that I wouldn't wish on anyone.There have also been rainbows following the storm clouds.One is seeing how my kids (now all adult age,but impaired) rally around each other when one is fallen and grab the rescue meds,the oxygen, the pulse ox, a pillow or a wet rag to wipe a bloody mouth from a bit tongue.I see the empathy and compassion they have for others,especially those with disabilities.

I see their eagerness to lend a helping hand if needed.I'm so proud of the people they've become despite all their difficulties.

Julie Hutchison and The Chelsea Hutchison Foundation

 

As far as amazing things people do with animals my friend Julie's Foundation is inspirational.

The Chelsea Hutchison Foundation helps to provide those that are Epileptic service dogs that can be life changing for them.

 

The Chelsea Hutchison Foundation (CHF) is a Colorado non-profit corporation formed by Julie and Doug Hutchison to provide help and support to individuals, particularly children and young adults, who have epilepsy. When you support CHF, you make a big difference in the lives of those who struggle with seizures and epilepsy. We are a very grass roots, volunteer-based Foundation that is committed to getting relief right into the hands of those who need it. We aren't big, but we are mighty and determined.

                            Jeremy & Balto

                  

The main focus is to raise funds to provide grants for seizure-response dogs. These trained companion dogs may be able to detect an oncoming seizure and provide warnings and/or respond after the onset of a seizure.

The Foundation also provides Emfit, SmartWatch and SAMiAlert movement monitors for those in need.

They provided all three of my kids with these monitors.What a blessing peace of mind is.

 

The Chelsea Hutchison Foundation
is named for Julie and Doug's beloved daughter, Chelsea, who died in her sleep during a seizure in April of 2009. SUDEP (Sudden Unexpected Death in Epilepsy) was the cause of her death. During the 6 years that Chelsea had seizures, no one ever told the Hutchisons a seizure could take her life, other than through an accidental fall or drowning. As a result of that omission, the Chelsea Hutchison Foundation informs those living with epilepsy of the risks and raises awareness of SUDEP so that no other families are blind-sided. For more information, please visit our website.


FB https://www.facebook.com/groups/201503483233598/
http://www.chelseahutchisonfoundation.org

Intractable Epilepsy and life in a bubble

Recently this statement has come to my attention.Do children  that are on seizure precautions live life in a bubble?

Having kids with a devastating seizure disorder is such a balancing act.You often feel like you're walking a tightrope ready to tumble over at any minute.

On the one hand you want them to have a full rich life,but on the other hand you don't want their lives to be shortened while allowing them to have that full rich life.

In 2009 when Ariel had,had a really bad Staus Epilepticus event and was in the hospital,they had required a CNA or nurse sitting by her side the entire time,we had this one gal come, she was telling me about her brother who was Epileptic.

She was telling me how her mom thought it was stupid to put Epileptic kids on seizure precautions.I'm thinking "really you're telling me this right now with my daughter so ill from having over 15 convulsive seizures in a row and in PICU."


Anyway she went on to inform me that her mom had never put her brother on seizure precautions and that her brother is in a bit of trouble right now.It seems that even though he is Epileptic he insisted on driving and had a seizure and killed a woman and severely disabled her daughter.

Talk about burying your head in the sand.She actually seemed to blame the victims in this case.
I could be like that ostrich and pretend that my kids don't have limitations and allow them to do whatever they want,but for one thing, I am their parent and it is my job to help guide and protect them.
Allow them to do anything at what cost?

This picture was taken the other day.It was a beautiful day and so we went for a walk down around the marina.Ariel and I went to the restroom and when I came out Daniel was down on this dock standing by the water.I had to explain to Daniel the risks of him being by the water unsupervised.He could very easily have had a seizure and fallen into that water and drowned.I will gladly take him down by the water if I or his older brother or father are there,so that if he had a seizure we could keep him from falling in.

As it was he had two very bad seizures that night.Daniel has had so many injuries from falling and getting hurt during one of his Generalized Tonic Clonics or (Grand Mals.) In this picture he had almost broken his nose.We have so many slings,shoulder immobilizers,neck braces,boots you name it in our closet from all the many injuries he's sustained through his seizures over the years.

        " I have Epilepsy it doesn't have me."
One of the reasons I have always despised this statement is because of the down playing the damage that seizures and Epilepsy do.They wonder why they barely get funding.
It's because of the misconception most people have.Most people think you take a pill and your seizures are controlled.





I understand this statement is sort of a state of mind thing, not letting your Epilepsy define you and all of that,but tell that to the parents of the kids that have died from S.U.D.E.P.(Sudden,Unexplained,Death in Epilepsy Patients) 

That's why people like The Hutchison's have worked so hard to educate the public on the risks of seizures.Because they were never told of the risk of SUDEP and unfortunately lost their precious daughter Chelsea in 2009.

They blessed us recently with EMFIT monitors that go under the kids beds to alert us in case they have a seizure in their sleep.

We try and let our kids have a full rich life to the best of their ability.I'll admit it does hurt when people seem to imply that having your kids on seizure precautions means you don't let them have a life or you are making them live their lives in a bubble.We want them to have a full life,but also a long life.

SUDEP (Sudden Unexplained Death in Epilepsy Patients) and life threatening seizures.

                                             
Hello friends,This is going to be a very tough post for me to write,but I feel there is so much mis-information out there about Intractable Epilepsy and seizures,I wanted to offer some clarity.

                                           
First let me clarify, Epilepsy is defined as:
Epilepsy (from the Ancient Greek ἐπιληψία (epilēpsía) — "seizure") is a common chronic neurological disorder characterized by seizures.These seizures are transient signs and/or symptoms of abnormal, excessive or hypersynchronous neuronal activity in the brain. About 50 million people worldwide have epilepsy, and nearly two out of every three new cases are discovered in developing countries.Epilepsy becomes more common as people age. Onset of new cases occur most frequently in infants and the elderly. As a consequence of brain surgery, epileptic seizures may occur in recovering patients.
Epilepsy is usually controlled, but not cured, with medication. However, over 30% of people with epilepsy do not have seizure control even with the best available medications. Surgery may be considered in difficult cases.Not all epilepsy syndromes are lifelong – some forms are confined to particular stages of childhood. Epilepsy should not be understood as a single disorder, but rather as syndromic with vastly divergent symptoms but all involving episodic abnormal electrical activity in the brain.


The Epilepsy Foundation itself constantly promotes this " I have Epilepsy it doesn't have me stuff."

I understand what they are trying to say about not letting seizures and Epilepsy control your life,but for those of us who have children and family members that are not controlled,it does take over a big part of your life and can even end your life.

Unfortunately a lot of people are under the impression that people that are Epileptic just take a pill and are fine.
That's just not always the case.

There are those that have had brain surgery.

Have had a VNS implant.

Take a mountain of medication and the seizures still continue.

An EEG showing seizure activity.

                             Michael having his VEEG.

                       Daniel having his VEEG.           

   Ariel having her VEEG.If you click on the picture to enlarge it,you can actually see by her eyes,that she is in a seizure.                              

My children are some of those people,that despite lots of different forms of treatment,they continue to have seizures and are quite debilitated because of them,especially Daniel and Ariel that are Intractable (Uncontrolled despite treatment.)  

We try to live life to the fullest despite the seizures,but you never lose thought of the fact that SUDEP or a life threatening seizure can always happen.

I did YOUTUBE  videos of both Daniel and Ariel and the changes and difficulties they've both endured from their seizures.

             

There are so many families that have been affected by uncontrolled Epilepsy.It's not a mild disorder for these families.Their lives have been tremendously impacted by it.

                                               Emily & Ariel
                                                                       

                              Jimmie

           Sara being read to by her big sister Amy.

                       

     
                         Heather

                                                             

Michael

Daniel

Sarah Jane

                                                                    

Finnian

    As hard as it has been for these families that have been affected by uncontrolled seizures,even worse are those precious families that have lost a child or loved one due to SUDEP or uncontrolled seizures.             

Julie and Chelsea

          
 Like the Hutchison Family who lost their precious daughter Chelsea due to her having SUDEP by having a seizure in her sleep.

They started the Chelsea Hutchison Foundation http://www.chelseahutchisonfoundation.org/

This family lost their precious daughter Kimberly Anne from SUDEP.
http://youtu.be/gnfyj1xdafk



This precious little girl was also lost just last week due to uncontrolled seizures.

  You see Epilepsy is not just a mild disorder that is easily controlled,for some it is life or death.                                   

I hope this post can shed a little light on this touchy and painful subject.


Please support The Chelsea Hutchison Foundation in trying to get the word out about SUDEP,they also help to get families Seizure Alert Dogs and EMFIT monitors.