Chips, Cheese and Sometimes Marshmallows

Life with 2q23.1 microdeletion syndrome (chromosome 2)

Chips, Cheese & Sometimes Marshmallows? What? Let me explain, if anyone knows my daughter Asia this completely makes sense:) Not only do we have many medical issues but, food issues are one of our major daily obstacles. You'll see...

Asia's List of Symptoms (2q23.1)

Whether or not all of Asia's Symptoms are related to the 2q23.1 microdeletion is unknown at this time:

At this time her symptoms are: Seizures, Hypotonia (muscle weakness), Development delay, Motor Delay, Language impairment, Non-verbal, Ataxia, Behavioral problems, Sleep disturbances, Short attention span, Repetitive behavior, Aggression, Autistic-like Symptoms, Sensory Processing Disorder (hypo-sensitive), Tongue-tied, Sacral Dimple, Possible Macroglossia (large tongue), Sandal Gap on foot, Constipation, Blepharitis, Hearing loss & Microcephaly.

~This list may be edited with new information~
There are additional symptoms with this rare syndrome that Asia does not have.

Many people contact me to ask what type of testing Asia had to get her diagnoses. Asia had a simple blood test performed which is called a "Cytogenic Microarray". There is a post in the blog that goes over this a little more.

Conact Info and Support Group

2q23.1 Microdeletion Syndrome has a great support group on Facebook. It is a closed group where parents can discuss their questions/concerns about their children with 2q. When logged into FB just search 2q23.1 Microdeletion Syndrome and find the closed group and "join". Also, please feel free to email me with any questions at

Thursday, October 24, 2013

Epilepsy Awareness Day at Disneyland 2013

November will be Epilepsy Awareness Month-this event is coming up quick!
I have always wanted to bring Asia to Disneyland...First, because she loves rides:) She loves a ride that will take her really fast and high into the air. She smiles and giggles the whole time. I think she would absolutely love Disneyland. She loves watching Disney on TV and when she says she wants to go to the "mall" she really means she wants to go to the "Disney Store" in the mall. She gets mad when we go into a different store for shopping because she only has 1 place she wants to go! It is very difficult to go anywhere with her and my other kids. She requires so much attention and I have a toddler-which also requires a lot of attention. I often considered going because Disney had a great policy for people with Disabilities- being able to avoid the long lines. Asia would definitely not be able to handle those long lines, she tires so easily. This privilege was being abused by so many that Disney had to change the policy. They now have a "new" policy. They will still be accommodating but plan ahead. Click this link below for all of the details.
Links for Disney Parks Disability Access Service Card Fact Sheet

I don't think we will be able to go this year but, if there was ever a good time to go it would be this day! Disneyland sponsored-Epilepsy day at Disney-November 7,2013 We want Disneyland to be covered in purple to bring awareness to this disorder that affects 1:26 people.

About The Event

Where: Disneyland Resort Anaheim California
When: November 7th, 2013
Who: people of all ages with epilepsy, their families and friends, and those whose lives are touched by epilepsy or want to raise awareness for epilepsy
What’s included: entrance to Disneyland, official Disney character purple event shirt and limited edition event tote bag with information and gifts
Season Passport Holders can obtain a “participant pack” which includes event gift bag and shirt
Benefits: Each ticket or participant pack purchase will include a $5 donation to one of the participating non-profit epilepsy related groups

A couple of FAQ's

What do I get with my ticket purchase?
The purchase of your ticket includes a full day entrance to Disneyland’s Magic Kingdom park (that’s the main park. Entrance to California Adventures is not included, sorry!), as well as a Participant Pack which contains a limited edition purple event shirt featuring a Disney character, and an event bag!

What is this about a Participant Pack? Do I need to have one? Can I just come to Disneyland that day without purchasing a Participant Pack?
The Participant Pack is a really neat SWAG Bag (Stuff We Always Get) of goodies prepared just for Epilepsy Awareness Day at Disneyland Resort 2013! It contains a limited edition Epilepsy Awareness Day purple T-shirt and tote bag which can only be obtained by purchasing the participant pack. They will not be sold anywhere else! In addition, the Participant Pack will be full of all sorts of helpful information about Epilepsy. Do you need one to participate? Absolutely not. However, by purchasing the pack, you will be helping to increase our funds which will go to support epilepsy research and awareness. Plus, you’ll look super fly in that purple shirt ;)
This all sounds great! How much does it cost to attend Epilepsy Awareness Day at Disneyland, and where can I get my ticket?
Entrance to the park on Epilepsy Awareness Day will cost the same as a regular adult single-day, single-park ticket: $92. Tickets can be purchased from our Store page.
Link for EADDL2013 Site purchase tickets and Participant Packs here. Remember to get participant packs for everyone-so you can all be wearing the official purple shirt:) For more questions please visit site!

Saturday, October 19, 2013

CBD, Cannabis, Alepsia, Medicinal Marijuana

So, here is a topic that is controversial and highly misunderstood. But, who am I not to bring up a controversial topic:) I have to mention how this came about. One of my sweet, little elderly neighbors called me and my husband early one morning. She said "You have to watch this CNN documentary that I saw last night on CNN it is called W-E-E-D", as she spelled out weed for us:) She thought of our sweet daughter and really felt inspired to tell us to watch this show. My husband took the phone call and I think his jaw fell to the floor-"Um, you know that is illegal... right? We can't even get it." He felt like he was "dreaming", there is no way she just called me to talk about weed! We kind of chuckled and even told some friends she had called. Our first reaction was-what? We would never give our child marijuana! My initial reaction was to think of giving my child a "joint" and how wrong that idea is. I would never. She wasn't the only one to tell us to watch this documentary. So my hubs, the researcher that he is-went to town:)

A couple of things, before we even have this conversation you have to watch the video-Dr. Sanjay Gupta's WEED documentary. The same one everyone was telling us to watch. Dr. Sanjay Gupta is the Emmy®-award winning chief medical correspondent for the Health, Medical & Wellness unit at CNN. If you haven't seen it, I am sorry it's almost 45minutes long and you may be thinking you don't have that much time! If you want to understand this post and become a little more educated on the subject, make some time available:) If you have a child with serious medical conditions you may want know what this is. It may even affect your life or the life of other's you know someday. This is going to be talked about a lot in the medical field. As we understand it, it is already becoming a large study in medical schools.  Second, I want you to know that I would NEVER advocate anything for my child that I thought would send her down a destructive lifestyle. I have seen first hand the negative effects that "pot" can have on teenagers and families. What I am bringing up is not getting my daughter "high". Please watch.   (So the cable news network removed this video from youtube-due to copyright:) Here is a link to a different source.

This video is actually hard for me to watch. It reminds me of what Asia has gone through, the look on Charlotte's face when she has a seizure is the same as Asia's-especially in the early stages. It brings up so many emotions. You watch them, just waiting for it to all stop. I keep wanting to write about ages 2-4yrs for her but, it brings up to many painful memories. Those were some of the hardest times in our lives. Asia at one point went a full week with non-stop seizures. Every few seconds she would seize-an entire week! How many is that a day? She stopped eating and drinking I think in fear of choking. I could barely feed her because she would seize in the middle of a bite-it's a horrible thing.

A couple of summaries: The Cannabis plant has hundreds of ingredients. The two we are most interested in are the THC and the CBD ingredients. THC is the one that causes a "high". CBD is the one that is proving to be more "medicinal" and a anticonvulsant. There are hundreds of strains of Cannabis. What Realm of Caring has done is create a hybrid plant that is a very low dose THC plant (Charlotte's Web or Alepsia in Utah). Recent testing has shown a .3% THC ratio-seriously, there is more THC in the Hemp oil you buy at the grocery stores. What if? What if this stuff really works. This is a medicine that is derived from a plant vs. synthetically manufactured. This is a medicine that as far as we know, has virtually no side effects, or at least harmful ones. This is a medicine that you can not over dose on. This is a medicine that could stop my child's seizures and allow her to have a life. Given to her as a simple capsule or liquid drops. They mention "Dravet Syndrome", this wouldn't be a medicine just for Dravet.

This is what I give my baby everyday. Some of them are vitamins-one's we have found to be beneficial for her seizures. There has been another prescription that we took her off of and I don't even know how many times her dosages with that and these have changed. She still has seizures. We are on a good streak right now, I haven't noticed them for a couple months-probably a record. It doesn't mean she isn't having them, I just haven't noticed them.

There are questions about side-effects of cannabis and long term use. Have you really ever researched the medication your on? This is a description of what she takes right now.

  • Used with other drugs to treat partial or generalized tonic-clonic seizures
  • Side effects include sleepiness, dizziness, speech problems, nervousness, memory problems, visions problems, weight loss. (This is all she needs is additional problems with speech, memory and weight)
Depakote (here we go)

This medication has rarely caused serious (sometimes fatal) liver problems. Children less than 2 years old are more likely to develop severe liver problems, especially if they have metabolic problems, severe seizures with mental retardation, brain disease (organic) or if they take more than one drug for seizures. If divalproex sodium is being used in patients with these conditions, then it should not be taken with additional anti-seizure medications. Liver function tests should be performed before and during treatment.
Early signs of serious liver problems include vomiting, unusual tiredness, swelling of the face or loss of seizure control in patients with seizure disorder. Tell your doctor immediately if you develop any of these symptoms.This medication has rarely caused severe (sometimes fatal) disease of the pancreas (pancreatitis). This problem may occur at any time during therapy and may worsen quickly. Tell your doctor immediately if you experience stomach/abdominal pain, nausea, vomiting, and loss of appetite while taking this medication.Taking this medication during pregnancy can cause birth defects and may lower your child's IQ. Women of childbearing age should discuss the risks and benefits of this medication, other treatment options, and use of reliable forms of birth control with their doctor. If you are planning pregnancy, become pregnant, or think you may be pregnant, immediately talk to your doctor. If you are taking divalproex sodium only to prevent migraine headaches, this medication must not be used during pregnancy. If you are taking divalproex sodium to treat seizures or mental/mood disorders, do not stop taking this medication unless directed by your doctor. Untreated seizures and mental/mood disorders are serious conditions that can harm both a pregnant woman and her unborn baby.
Diarrhea, dizziness, drowsiness, hair loss, blurred/double vision, change in menstrual periods, ringing in the ears, shakiness (tremor), unsteadiness, weight changes may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly.You may rarely see partial tablets in your stool. This may occur if you have certain intestinal disorders (such as ileostomy, colostomy). Tell your doctor right away if you see partial tablets in your stool.Tell your doctor immediately if any of these serious side effects occur: signs of infection (e.g., fever, persistent sore throat).Tell your doctor immediately if any of these unlikely but serious side effects occur: chest pain, easy bruising/unexplained bleeding, fast/slow/irregular heartbeat, swelling of hands/feet, uncontrolled eye movement (nystagmus), feeling cold/shivering, rapid breathing, loss of consciousness.A small number of people who take anticonvulsants for any condition (such as seizure, bipolar disorder, pain) may experience depression, suicidal thoughts/attempts, or other mental/mood problems, behavior including signs of depression, suicidal thoughts/attempts, thoughts about harming yourself. dark urine, persistent nausea/vomiting, severe stomach/abdominal pain, yellowing eyes or skin. Severe (sometimes fatal) brain disorder (encephalopathy) has rarely occurred, particularly in patients with certain metabolic disorders (urea cycle disorders). Tell your doctor immediately if you develop unexplained weakness, vomiting, or sudden mental/mood changes (such as confusion).A serious allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction include: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist. Symptoms of overdose may include: excessive drowsiness, coma, irregular/slowed/skipped heart beats (heart block).

Seriously-this vs. virtually no side effects, what would you want? This is only two of the many medications prescribed for epilepsy. Some of them have worse possible side effects than these. Some can actually cause brain damage. I would love to list them but this post is already getting lengthy.

I wont even get into ingredients-There are concerns about how the CBD is extracted from the plant. What solvents are used and are they harmful. Have you looked at the ingredients in some of the medications that are prescribed for children? I doubt it could be any worse.

I am not concerned about my child becoming addicted to CBD. What is the difference between that and the meds she is already on? If I ever wanted to take her off of the prescriptions she is on, she would go through a weaning process, her body is "addicted" to her prescriptions. Fear of Abuse? If it is not giving a "high" I cant see the abuse. Prescription medications are abused everyday.

People are also bringing up the argument that hybrids can also be created to be even higher in THC, you know what? I have no concern with that, those plants are not my focus here.

The first formal report of cannabis as a medicine appeared in China nearly 5000 years ago. Queen Victoria's personal physician wrote (Reynolds, 1890), on the basis of more than 30 years' experience, that “Indian hemp, when pure and administered carefully, is one of the most valuable medicines we possess. He found it impressive in clonic spasms and certain epileptiform convulsions related to brain damage." Families are actually packing up and moving to Colorado just for the chance to get on a waiting list to take part in something that may change their child's life. They are all worth it and you would do anything as a parent. It is sad that something like this has been taken away from us for decades. Charlotte has given so many parent's hope-it is a beautiful story. To watch your baby live such a hard life, not to play and be a child but tortured every day-you would do anything to make it stop, and I am not seeing a problem with this type of alternative medicine. This is a miracle for parents, a answer to prayers. I do fully believe that more studies should be allowed. I want the medical field to learn more about this plant. There is a lot more that can be researched. Another problem I see is going to be availability and price. If I was able to start it, I would need to make sure I could keep it going. I don't know about you but I don't have the funds to pay thousands of dollars a month to get it. We need to have the option though, it shouldn't be kept from us- that is a first step.

What can be done?

Alepsia is not a cure, but it is a legitimate treatment.  It's frustrating and sad that we cannot help our children with it because it is not legal for us to do so. Utah has the opportunity to be innovative in its approach to this legislation. Hopefully this year!:) Because it has such low traces of THC we may not need a bill. We just need a green light to administer it without the fear of prosecution. I hope for a positive response from the community, as well as the assistance of experts and our bill sponsor. Please educate others and spread the word, share my link. We need the support and awareness of what this really is and who it benefits. We just want to help the children who need this medicine.

I am adding a couple more links.

Link for debate with Dr. Sanjay/Piers Morgan
Link for the Realm of Caring Foundation
Link: Charlotte and Zaki's Journey
Link for Jason and Jaydens Journey FB
Link for The Drs TV show: watch all segments
Drs segment 2
Link for a history of medicinal use.

Tuesday, October 8, 2013


I want to share this event that will be happening at the U of U Clinical Neurosciences Center. It involves so many that are effected by epilepsy. I am just hearing about this and don't know if I will have time to create anything of my own, have Asia or anyone else in my family-but maybe next year.  Maybe you will want to enter, it doesn't mention it in the info but I believe there will be judging and winner's announced!


The Epilepsy Association of Utah and the University of Utah Clinical Neurosciences Center present Artilepsy, an exhibition of original artwork, photography and home crafts by people of all ages living with Epilepsy. This evening illustrates the profound effect that epilepsy can have on human life and the courage, humor and imagination many show in facing it.

How to enter: Link for entry information
Like it on FB: Link for Artilepsy on Face Book

All 2012 Entries Due by Friday, Oct 26

View the Exhibit

Nov. 2nd - Nov. 30, 8:00 AM - 5:00 PM

The gallery is free of charge and open to the public.  
Location & Parking

Clinical Neurosciences Center
University of Utah
175 N Medical Drive East
Salt Lake City, UT 84132

Free parking is available in the parking terrace across the street.
Custom Map & Directions

Epilepsy Association of Utah

Provides education and support services for individuals and families dealing with the many challenges of epilepsy. Visit for more information.

Clinical Neurosciences Center

The Clinical Neurosciences Center is the tertiary referral center for the Intermountain West, spanning five states and beyond.  Our multi-disciplinary care team–compiled of sub-specialists in neurosurgery, neurology and neuroradiology–work seamlessly to provide the most up-to-date care for patients with diseases and disorders of the brain, spine and nervous system.  Visit to learn more about our services.

Wednesday, October 2, 2013

Upper Cervical Chiropractic/Guest Post!

Last year I had members of my extended family going in for treatments to a Upper Cervical Chiropractor. I kept hearing about the amazing results they were seeing in their physical well-being. I am not a huge fan of going into a typical "Chiropractor" who pops and cracks your spine so I never really had a desire. I kept hearing that I should go in and I should bring Asia in with me because she (the Dr.) loves helping children. Well needless to say I finally did and brought Asia as well. My husband brought Asia in the first time. She has been in for appointments about 4 times now over the last several months. It may be that Asia has had a good few months or...that this has really been doing something for her health. I haven't been noticing Seizures, fairly good mood and she has been eating really well. So what is it, right? This is a specialty within the Chiropractic profession. It has it's own special and very gentle techniques. It's purpose is to reposition the weight of the head over the center of the neck to remove brain stem compression and restore body balance. This re-positioning reactivates the transmission of healing messages from the brain to the affected part of the body so the body's natural healing process can begin. The imbalance can cause stress, tension and pressure around the brain stem. With Asia's seizures I thought that this could really help. The Dr. analyzes how far the atlas bone has shifted, tilted or rotated from it's normal position. Then with a very gentle adjustment behind the ear the Dr. corrects this imbalance. You would never even guess that she was doing anything at all!

When we first went in, the Dr. had us stand on a some scales to see if our body was imbalanced. When the atlas is misaligned it can cause a imbalance in your body, a raised hip, a short leg and one side of your body weighing more then the other. This was true with Asia and myself. I don't remember the exact amounts on Asia but for myself, one side of my body weighed 10 pounds more then the other! My husband had a 27 pound difference. As of my appointment Monday I am "balanced":) I can tell you also that I can really tell, I feel balanced.

When working with Asia, on her first Visit the Dr. massaged one side of her head, the next visit was the opposite side and then on the 3rd visit she worked both sides a little. This was not to overload Asia.


Body imbalance can cause such conditions as Seizures, development problems, digestive problems, migraines, allergies, ear infections, acid reflux, ADD, fevers and more.

About The Doctor and Her Post:

Hello to every child, brother, sister, mom and dad out there.  Yes, I do take care of the whole family and love it.  Since my mission is to help as many people as possible in my lifetime...especially children that would include the whole family.  I want to be real here and tell you how awesome it is to help the children in our lives.  They are the ones that are making a change in the next generation and I would love the idea of those babies and children being effected by me and my passion to help their bodies prevent problems in their lives.

If you ever see me in the store, church or out and about please don't hesitate to talk to me.  I am human just like you and want to answer any questions you may have.

I have two beautiful naturally birthed, unvaccinated, curious, intelligent teenage boys with the trials and tribulations as your teens do.  They are the light of my life and support me in everything I do and vice versa.

I have been married for 13 years to my soul mate Jeff and love riding with him on the Harley! (Yes, a Harley girl).

Thank you for reading about me and please don't hesitate to call.

My Mission is to help as many people in my lifetime as I can – especially children

Being an Upper Cervical Chiropractor my main focus is what is that brain stem going through.  What kind of pressure is being put on it, how is it functioning being surrounded by the first bone in the neck called Atlas or C1.
With all the traumas and injuries that we sustain in life, those injuries will break loose the connective tissue that holds us very strong and upright.  When we receive those traumas the first area to break down is the Atlas area, just because it is unlike any other bone in the body, and it is protecting that brain stem.
All babies, and children have spines just like adults, and as we are all coming through the birth canal  as well as being delivered, it is very traumatic and can disrupt the alignment of that first bone (Atlas).  
Any pressure upon that brain stem will disrupt the communication from the brain to the body.  It is like a computer central command center.  Symptoms that might evolve due to this disruption is: Seizures, Torticollis, Ear Infections, Sinus Infections, Colic, Acid Reflux, Trouble Latching during Breastfeeding, constipation, Diarrhea and many others.

I use a gentle adjustment with no popping, twisting or pulling on the neck.  Moms can be worry free when their child is getting their spine in alignment!

Dr. Ashleigh Stockwell Street
239 W. 520 N. 
Orem, UT 84057

For more information here are a couple of links. Thanks Ashleigh!

Tuesday, October 1, 2013

October is Down Syndrome Awareness Month

I'm spreading the awareness that October is Down Syndrome Awareness Month. It is said that 6,000 babies are born every year in the US with Down Syndrome or (Trisomy 21). This is about 1 of every 691 babies born in the United States each year. Down Syndrome is caused by a extra copy of the 21st chromosome. A lot of people have heard of Down Syndrome and chances are they know someone with Down Syndrome but, often they don't really know what it is or really what it means for a family affected. There is a lot of great info on the NDSS (National Down Syndrome Society) website.
This link gives a lot of resources to learn more about how to support those with Down Syndrome.
NDSS-link for the National Down Syndrome Society Even though October is the official month for the Awareness, there is always local events, activities, and support being offered year round. The NDSS is also very active when it comes to social media-check out the info below...

NDSS is active on several social media outlets year-round, and Down Syndrome Awareness Month is an especially good time to follow and share! In addition to our regular social media activity, here are some bright spots to keep an eye on this month:
- See more at:

And now I have to share a photo of my bff's little girl and her cousin-I've shared it before but they are so cute and it may become a tradition this time of year. Spread the awareness!