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

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.


  1. Thanks for sharing the info- I have been very curious! I can't even imagine having to give my child a handful of pills each day. I hope that you receive positive response from the community! We love Asia and hope that you can find a better answer.

  2. I live in CA and use medical marijuana - the more powerful type - to treat my fibromyalgia. For the first time in 11 years, I am pain-free, my migraines have almost entirely stopped, my depression has been alleviated, my IBS is under control, and I'm getting the best sleep I've had in years. I pray that UT will wake up to the truth about the medicinal benefits of a God-created plant and your sweet daughter will benefit from that treatment. Best, Jessica Bradshaw

  3. Your story is very touching and I wish your journey to be complete with legalization and without fear of prosecution. I am 50 year old Republican and for years was against marijuana. I have changed my mind and believe the Republican party should do the same. How can you say no to a mother and father trying to save their child? Legalize, regulate, tax, and stop the prohibition. "Florida for Medicinal Marijuana" - Facebook

  4. Amazing story! Thank you for sharing!! We have also shared this on our FB page.

  5. I enjoyed your article and wish you the best of luck. On the other hand if you are going to tell of the benefits of marijuana you have to explain that THC and CBD both exhibit medicinal properties not just a high. Also don't condemn other use because you found the one that works. Marijuana, or as I prefer to call it Cannabis because Marijuana is a term given to the plant to fool people back when they started prohibition, was medicinal and then they called it marijuana, showed Blacks, and Mexicans smoking it and started a smear campaign to outlaw a medicine for commercial profits,plastics, tree harvesting for pulp at paper mills. You see I also use it medicinally but CBD does not work for neurologic pain as well as THC. To legalize, tax, regulate, everyone could benefit no matter what pain you are suffering from. So please don't throw out the other 60+ cannabinoids in the plant for the one you know works, this is a truly remarkable plant that needs more scientific studies. It won't until the DEA changes it's schedule no Federal testing will be allowed, because they control the weed given for those studies.

    1. Thank you for your comment. I agree with you 100% that THC and CBD both have medicinal properties. It is beneficial to so many different health conditions. I don't condemn anyone who uses it in any form and I don't want to make anyone feel like I am disregarding their own health issues with this post. This is a post only about the battle I am personally in right now. Until everyone is educated and changes their "opinion" of cannabis we have to take baby steps in trying to change laws-which we are trying to do right now. In this case I am advocating only for the children that desperately need it in a state that claims "will NEVER allow it" because I am a mom, and I want to do all that I can do for my child. I am sure that there are others across the country and in my state that could benefit from this plant-. It most definitely needs more study.

  6. I have seen so MANY children who were treated with cannabis oil who have just seemed to blossom after being weaned off of the pharmaceutical poisons that their Dr.'s prescribe. I follow all of their stories and I am truly amazed at the progress they have made. I honestly cannot understand how anyone could even THINK of prosecuting their parents as criminals of all things. These are people who have only one goal and that is to save the lives of their children. How on earth could this be a crime? At least they are doing something POSITIVE. (as opposed to those who are allowed to do nothing but PRAY!) The parent who makes every effort to help their child is to be commended, not persecuted. Any parent who truly cares about their child WILL try anything to save their life. That's a no-brainer. How dare ANYONE try to stop them. Especially when it is obviously helping! Shame on ANYONE who intervenes!