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 seasonatwater@gmail.com

Friday, March 14, 2014

Cannabis Bill Passes-Will be known as Charlee's Law





It has been a crazy busy exciting couple of weeks, actually I should say months! Asia is doing so well, she took her last Topamax pill about a week ago and she is doing fantastic. You could tell she was having some good and bad days, I suspect that she had a few migraines that included throwing up. I am sure weaning from a medication that she has been taking for years would cause this effect. Her screaming tantrums have calmed down a little and now she is a "laugh-er", and boy has she gotten spunky. If you need her to do something--she will sit down laughing just to be a rebel. She has gotten so fast, she is starting to run (gallop) really quick! New words everyday and her eating has improved a thousand times! Her bus drivers and school teachers are constantly telling me about the new things she is saying and doing and they are sooo excited-it is such a relief. She has begun saying some words she hasn't said in years (including the word "purple"-yes, I am excited about that one) her teacher mentioned she has started calling two classmates by name (we didn't even know she knew their names) it just keeps getting better. Next goal (down the road) will be to wean her off of Depakote--I can not wait for this day. I can't imagine what she could be like without any of these anti-seizure meds messing with her ability to develop and communicate. This brings me to my next topic-

Yes-Yes-and a Yes! You may have seen my past posts on Cannabis, Medical Marijuana, Alepsia, Charlotte's Web, Hemp oil or HB105 and what it meant to us with a child with epilepsy. Well, several amendments later, this week the Utah senate passed unanimously House Bill 105 which will allow the families of Utah, under the supervision of a neurologist, to bring this hemp oil into the state with out fear of prosecution; to treat their children with epilepsy. This gives so many families so much hope. If Asia regresses, and begins to have these severe seizures after being weaned off of her current medications-I will not put her back on them. I will now be able to purchase Hemp oil or "Charlotte's Web" from any state that sells it and bring it back to the state of Utah.



The HB105 process was a lengthy one with hundreds of man hours put in. A process I wish I could detail but there is to much, I don't even know half of all that was done. A special thanks to the dream team: Representative Gage Froerer, Laura Warburton, Senator Steve Urquhart, Jennifer May, Annette Maughan, Emilie Campbell, April Sintz, Realm of Caring and all of the families that help spread awareness and educate others on what this plant can mean for the medical world. The change of heart that we saw in people who started off completely against it were, in a matter of months, for it- this was nothing short of a miracle. Not only is the state very supporting but, I heard several senators mention that this was a first step in this type of treatment. Wow-beginning with a "no way" and ending up with a lot of very open minds. This type of Hemp does not cover all of the medical patients looking to marijuana as a medical treatment and I sympathize with them-hopefully, others will begin to see the many uses of this plant. Different types of marijuana plants have a great potential to help those who are suffering. The bill has a two year sunset to review the progress that our children are having on this oil. I will be so interested to see how the results turn out and where Charlee's Law will take Utah when it comes to alternative medical treatment.



Charlee's Law


HB105 will be dedicated to our special friend Charlee. Charlee battles Batten Disease and is in her last couple days of life. Charlotte's web would not have cured her but, would have helped her control her severe epilepsy. She is a beautiful Angel and her parents brought her to the Senate vote. It was a very emotional time for all parents and senators in that room. I have listed her Face book page and her website below. Please take a minute to look at them. Thoughts and prayers to Charlee's family.

Her Website: http://www.charleesangels.org/
Her FaceBook Page: https://www.facebook.com/charleesangelsbenefit
Charlee's Law: http://fox13now.com/2014/03/11/senate-passes-cannabis-bill/
Charlee: http://www.sltrib.com/sltrib/news/57660495-78/charlee-oil-catrina-cannabis.html.csp

Lots of Links!
Interactive photo gallery of some of the HB105 children. Look for Asia and her friends: http://www.sltrib.com/sltrib/news/57636966-78/sltrib-com-html-http.html.csp

If you want to know more find Hope 4 Children with Epilepsy. Here is the FaceBook Link: https://www.facebook.com/Hope4Children
Website: http://hope4childrenwithepilepsy.com/

Some Recent News Articles:
http://www.sltrib.com/sltrib/opinion/57672075-82/oil-cannabis-utah-federal.html.csp
http://www.ksl.com/?sid=29057129&nid=148&title=families-encouraged-as-lawmakers-ok-hemp-extract-bill
http://kutv.com/news/top-stories/stories/senators-unanimous-favor-cannabis-oil-sick-kids-10081.shtml

Just out-Weed 2:  http://www.cnn.com/2014/03/05/health/gupta-medical-marijuana/index.html



2 comments:

  1. I am Amanda from Texas USA,my son was suffering from this devilish disease called epilepsy when i heard about how cannabis oil have been curing this disease i decided giving it a trial,i saw an article on how cancer centre London provides cannabis oil so i contacted them via email londoncancercentre@gmail.com and within 5days the cannabis oil was delivered to my address and apart from that they gave me instructions on how to use the oil. My son is now free and no longer an epileptic patient.To my greatest surprise this cannabis oil works like a magic.

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  2. When My daughter was about 19 years old, when she was diagonalize of breast cancer with metastasis to her abdomen, she was also suffering from chronic disease. After several operations on her, the cancer came back with extreme force to take my daughter life and not talking about the chronic disease that she was suffering from. My daughter had no way of a perfect health, my family backslid but God always made sure that we were back in track with Him as our daughter life was at stake. My daughter had faced many hurts emotionally and mentally I was tormented. people who my family had trusted the most broke our family trust and several times my family was in a hopeless condition because of the wrong decisions we took and wanted to give up on my precious family life but each time the devil brought this thought to my mind that my family is worthless and i should die Holy Spirit took over my family life and reminded me that we are chosen and my family is bought with a price that is JESUS. Today my daughter has been cured with Mama Alisha LuraCannabis Oil, she strong enough to encourage a hopeless soul that JESUS IS OUR HOPE and Mama Alisha LuraCannabis Oil is the remedy for all forms of cancer. Contact Mama Alisha Lura on: getyourexbacksolutionspell@gmail.com or visit her website today on http://weeblyalishaluraspell.weebly.com/available-spells.html

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