Tuesday, November 5, 2013

Epilepsy Awareness, Germs and Sickness

Any mother of multiple children will tell you that having one child sick causes a dread in the pit of your stomach because it is almost inevitable that the sick child will be healing just as the next child is coming down with what the first one had.  From there it is a marathon for Dr. Mom 24/7 until the domino effect has reached the last one standing.  For special needs parents there is an added insanity to this race.

Much like a new mom bringing home her first baby you are on high alert for foreign and added germs.  You wash your hands and everyone else's until you have to send someone to the store for more soap!  Clorox wipes, bleach, vinegar, and baking soda (whichever your weapon of choice may be) is at the ready.  When you are not checking foreheads, pushing fluids, or making soups you are cleaning sheets, carpets, "puke pans" or throwing away emesis bags.

Yesterday Aidan woke up with a fat lip.  No big deal right?  Unfortunately no.  He has had random allergic reactions, in the form of hives and wheezing, over the past two months.  There has never been a rhyme or reason to it and I have yet to figure out a culprit.  Unfortunately, the fat lip that was big enough to look like a duck bill was enough to make that gut feeling or "mom instinct" wave the flag and head to the doctor.

Going to the doctor is enough to cause a full-blown panic attack.  Fortunately, our pediatrician is someone that I am proud to call a friend.  I love to visit with her and I trust her immensely.  The problem is not her, nor her office, nor the realization that diagnoses come from doctors offices and hospitals.  The cause for alarm comes from all of the germs that we will interact with on our way to see her.  Despite their very clean office, there are always germs lurking.  And despite our best efforts we almost always bring some souvenir home with us.

Some of you may be saying "so what, it makes your immune system stronger."  And several years ago I would be saying the same thing.  In fact, when my children were very little I did not separate the ones who were sick with chicken pox because I wanted it to be done and over with while they were little and better able to handle it.  But now, sickness and germs are treated like the plague.

You see, many people are susceptible to seizures while they are sick and running a fever.  These seizures do not make you epileptic.  They are called febrile seizures and are often times non-epileptic febrile seizures.  So as you can imagine, a little girl who already has a handful to hundreds of seizures every day, sickness only makes life that much more complicated and dangerous.  Add to that the not-so-simple fact that Avagrace has trouble regulating her body temperature and we can get into serious trouble very quickly.

From the time Avagrace was born she was very finicky about her body temperature.  She was like Goldilocks and liked everything "just right."  As a baby I remember her sweating.  She would sweat in the car-seat, she would sweat if I had her in too many layers, and she would sweat for no apparent reason.  Then she would be too cold and literally shiver.  Fortunately her internal temperature has never faltered.  She has never been hypothermic and she has only had an actual fever a handful of times in her 9 years of life.  Unfortunately, a few years ago she stopped sweating everywhere except her head and even there it is a very small amount.  Still, every time she gets overheated her seizures increase.  Then after she has a seizure she is so cold all she wants to do is cuddle under a mountain of blankets.  We just have to be sure to time the removal of said blankets in enough time so that she doesn't get overheated again.

In the summer she wears a cooling vest.  It is literally a cotton vest that has pockets to hold ice packs.  And in the winter she wears several layers so that she can take off and put on as needed.  Cardigans are her favorite.

Aside from her temperature issues, germs are especially hard to fight.  Her body is already use to high doses of strong medications that are in fact to high for adults like me.  So her body does not always cooperate with antibiotics.  Just last month she had to have two rounds of antibiotics just to battle a UTI.  And every time her immune system is battling some germ, her seizures are able to break through much easier and her seizure stats multiply very quickly.  The two and a half days of her UTI Avagrace had over 300 seizures.

We currently have two kids, my husband, and I who have sore throats, headaches, and nausea.  And I am trying to sanitize everything as well as keep the kids at a reasonable distance from each other so that hopefully Avagrace will not catch whatever this is.  So today for epilepsy awareness I wanted to share that a simple cold or UTI could in fact steal my daughters life.  It isn't something that you are warned about when you first hear the diagnosis.  It isn't even anything that you will typically read on awareness websites.  Yet every parent of a child with intractable epilepsy will tell you to say no to germ sharing!

It makes me think twice before I run to the store to get that one thing that I can't live without when I am fighting 'just a cold'.  I know full well that it is not always possible to stay at home.  My husband does deploy and I have five kids.  But if you have the option to quarantine your germs I am sure that there are plenty of families who are battling rare disorders, cancers, and the like that will thank you!  And I know that those families, like myself, are also thankful for things like antibacterial wipes and hand sanitizers that I can carry with me to help fight germs when a sink and soap are unavailable.

Sunday, November 3, 2013

Legalizing Marijuana, Meeting A Senator, CNN, The Realm Of Caring, and Sweet Avacake!

Yesterday was a pretty big day around here.  As you all know (or if you are new around here, you are about to know) our oldest daughter Avagrace, or affectionately known as "Avacake" has a rare and catastrophic form on intractable epilepsy.  She battles seizures EVERY. SINGLE. DAY!  And she has for many YEARS.  We have failed to gain control with over 17 different medications.  She is 9 years old and has had five epilepsy-related surgeries.  And until recently, there has been no hope for control.

Two things to make this an easier read.  If you are a resident of Oklahoma, the very last paragraph gives you specific instructions on what YOU CAN DO!  And If you know the ground-breaking life-altering science that is happening in Colorado with the Realm of Caring than feel free to skip ahead to paragraph 6.
Sisters by diagnosis our friend Zoey!

But in Colorado, there are people who are fighting for my daughter, and the thousands of other children that they do not even know.  You see it all started with a mom, who much like myself, would not give up on her child.  She and her husband would travel to different states and research different doctors just to find someone who was willing to fight along side of her.  Their names are Matt and Paige Figi.  They also were a military family when all of this started, but as many of us know, being a special needs family in the military is not all that the Department of Defense claims it to be.  You can read more about their story here.

In their journey to fight for their daughter Charlotte they heard of families around the world that were having success in using Marijuana to treat neurological conditions like epilepsy.  And from there, they teamed up with an amazing family, the Stanley's, that was willing to spend countless hours perfecting a strain of marijuana that would have high CBD and very low THC.  THC is the part of "weed" that causes the "high."  That means, that the strain that they are growing legally in Colorado does not have the property that the Federal Government has deemed illegal.   The Stanley's named this strain "Charlottes Web," after their first patient Charlotte Figi, who after just one dose had SEVEN DAYS SEIZURE FREE!

So, you might be asking yourself, why in our country of "freedom" is this natural plant not available to all children who need it?  Well, it starts with what we teach our children and our society through drug education, "D.A.R.E" "Red Ribbon Week" and the like.  Marijuana in any form is taught to us as causing a plethora of side effects and conditions.  The Dare Website says that Marijuana is "addictive, makes it hard to concentrate and learn, makes it hard to sleep, causes colds, coughs, infections, etc."  But those statements are simply not true.  Yet, all of the medications that are FDA approved for children with intractable epilepsy cause anything from liver damage, breathing difficulties, kidney stones, a likely "fatal rash" known as "Steven Johnson's Syndrome" which Avagrace was very lucky to survive, and psychotic behaviors.  One medication that Avagrace was on (and not the one that caused the rash) caused our very happy calm daughter to rip her hair out in fits of rage, confusion, frustration, and feelings that she could not cope with at the tender age of 4.

If you don't believe me, I urge you to watch Dr. Sanjay Gupta,  a well-known doctor who has long been revered in this nation, discuss how he was mislead and has since changed his mind on the topic of Marijuana. I have created a playlist on YouTube that has videos about everything that I have mentioned, along with our own videos, a full version of Dr. Sanjay Gupta's "Weed" documentary, the Stanley's Realm of Caring, Charlottes story, and a few other Vlogs that I think are amazing in the education of Epilepsy Awareness!

So, back to our story and our day yesterday....  :-)

If you know me in person or on Facebook, you know that I like to talk and share and advocate.  But when I first meet you, when I am in serious situations, I am not a talker.  I am also an empathetic person and along with that comes tears.  When I went to the capitol yesterday I had no intention nor desire to talk.  I absolutely did not want to be in front of CNN cameras, senators, and the leading advocates for Charlottes Web, and start crying.  I was very lucky to be at this meeting with some of my most dear friends who are very good at advocating with their spoken words.  Near the end of the Q&A/sharing your story session I felt very moved to share our story.  Many people had shared why it was absurd for our country to require people who are fighting illnesses that are death sentences, to leave their families, their businesses, their jobs, their animals to travel to another state just so that they could have a chance of survival.  But our story is unique and has an added complication (not to say that anything that someone else is going through is any less important or challenging, but you will know what I mean in a moment.)

Senator Connie Johnson, Virginia and Avagrace Spencer
You see, our family is owned by the military.  And that was our choice and we are glad to serve.  But we cannot choose to sell our life here and move there.  We cannot choose to give our animals and our land away or leave our family.  We already have left our family in Pennsylvania and Maryland.  We are Pennsylvania residents who are stationed in Oklahoma.  We pay taxes in both states and are legal residents of PA with a special military status of being a resident of Oklahoma too.  For us to move to Colorado we will be splitting our children up because my husband cannot leave the state of Oklahoma unless he is on temporary leave or on military orders.  Moreover, he is in a critically manned position and therefore he cannot simply change jobs and request a transfer.  This is his base and this is where he will stay for the duration of his career.

In order for our daughter to have a chance at this miracle drug I will have to move to Colorado and stay there without my husband and some of my children.  I will not be able to leave with Avagrace because every other state that borders Colorado deems this medicine illegal.  If we left Colorado and were apprehended Avagrace would be taken from me and I would go to jail and face charges that could include life imprisonment.  Which means that I will only see my extended family if they can travel more than half-way across the country.  I will only see my children when my husband was approved for military leave, so that he may bring them to visit us.  And I will need to be prepared to deal with the feelings that some of those children will have in regards to me leaving them behind.  (Thinking about this more also means no road trips, vacations, or ever leaving the state of Colorado.  It is a good thing Colorado is so beautiful!)  On top of that we will need to figure out a way to split my husband's enlisted military pay between two households in two states because my days are spent taking care of Avagrace, her therapies, her doctors appointments, her education, and her dozens of daily seizures.  I would also be a single mom taking care of the other two or so children that I would be taking with me.  And the cherry on top of this amazing sundae of goodness is that I would be considered legally separated from my husband in the military's eyes and would have sacrificed my own life insurance and eventually all of my health insurance as well because I am changing my state of residence and my children's to a state other than the one that is our permanent state of residence and our current state of residence according to his orders.  And after being legally separated for X amount of time you are considered divorced.  (I realize that this is rather confusing so I will sum it up in one sentence now).

The military will recognize me leaving my husband as a legal separation of our family.

To be honest, I do not remember exactly what I said and I know that it was much more fluid than what is written above.  I am also proud to say that I did it without more than a very few un-noticeable tears!  Before I shared our story Avagrace had already had a cluster of 15 seizures requiring me to get up, maneuver her chair out of the room in which CNN was filing the speakers, and administer two rounds of rescue meds in the Capitol building's bathroom.  Before we left yesterday she had used up the oxygen tank that I had with us (which has never happened before) and she had in total 17 seizures, including 2 GTC's (aka grand mal) and some complex partial-partial seizures among others.

When I raised my hand to share, I was blessed by several individuals that not only had helped me to get Avagrace in and out of the room, find a chair, share their sweater to warm her after her medication was administered, but they then stood by me and called out to Senator Connie Johnson so that I would be heard when dozens of persons from various backgrounds and platforms were vying for her attention.

Senator Connie Johnson
 talks with Avacake
By the Grace and Prompting of God I shared, it was heard, and I was Blessed.  I had several people come up to give both Avagrace and I words of encouragement and their commitments to helping us save our little girl.  I was able to speak to Paige Figi and Josh Stanley from Colorado.  Along with some leaders from Oklahoma.  Mike McGee, a gentleman who is retired law enforcement and is now the man behind "Oklahoma Weed" on Facebook (which is the Oklahoma Cannabis Activists Organization), and Senator Connie Johnson who sat down to talk with Avagrace and I, while CNN was waiting to speak with her!  She also assured me that she would not stop fighting for my daughter, I think that I can believe her considering she made CNN wait to speak to her so that she could take the time to talk to my sweet girl!  I was enormously blessed to meet some other parents and grandparents that are also fighting for their child's chance to beat this horrendous condition and catch up with some whom I have known for years but was never able to speak to in person.

NOW the most important part!!!  If you are in Oklahoma you need to call your state senators right now!  If you do not know which senator is yours go to this website and put your zip code in to find out.  This is what you need to request.  You need to request that Bill 1845 (which has advanced unanimously) to be heard in the senate.  Despite its overwhelming support this bill has been refused "floor time" and will not be heard.  ALSO, talk to them about Bill 914 which would leave the decision of medical marijuana up to the doctor.  In a country that reveres doctors as knowledgeable, amiable, and intelligent; why can doctors not prescribe the medication that their patients need?  Finally, Senator Johnson cited House Bill 1441 saying that this is one that needed to be repealed!  The senate reconvenes in February.  They have the power to pass emergency bills that would allow our children the medication that they need.  But none of this will happen without you!  Oklahoma residents I urge you to consider this.  With over 71% of Oklahoma residents being on board for the use of medical marijuana, why do we have the strictest marijuana laws in the country?