Just a normal Summer with PCDH19
Why do we have weeks without seizures than BAM, every week with seizures?
That is the grey hairs on my fucking head. I can swear this is my own blog.
Weeks in summer without seizures due to this epileptologist Dr. Walleigh pronounced like the Disney movie Wall E. Denver Childrens Hospital. She said "I will put Allie on a birth control pill before I put her on another anti seizure drug".
Yep. Birth control! Holy fucking shit. Really?? It worked the entire summer without seizures because of that one little pill. She was spotting in August. So the doctor said take a break from the pill let her menstruate. BAM fucking seizures. Weekly now. How do we get back to no seizures? Try another pill. Ok. Nope that did not work. Ok put her back on the pill that did work. Ok. Poor Allie had terrible mood swings. Had to pick he up from school twice in a two week period because she was running out of the fucking middle school. OMG. Can I get her any relief?
Back to square one. Calm her down. She is on medical marijuana called drum roll please - Haleigh's Hope. I will provide the link here. https://haleighshope.com/ https://haleighshope.com/

So we do give her a medical marijuana (yes the State of Colorado gives us permission with a valid RED CARD) with a little supplement of THC to help her not fucking crawl out of her skin. It works. 

Side story, because that's what I do. One night after school she was jacked up. Not listening being totally irrational crawling out of her skin. I literally saw her climbing over our backyard fence wanting to visit and walk over to Nana's house. NANA lives in fucking MN. We live in Colorado.  Ok not happening Allie. I am alone with a four year old t-rex and Allie climbing over the fucking fence. Eric (hubby) love him to death, is at his guys night out playing board games. Whatever. Soooo success story here, I give her a little extra HH and extra drop of THC. Calms her down. YES. Thank you whole cannibus plant. I did not have Eric come home from his guys night out. I handled it myself. Allie was calm. Peaceful on our bed. Talking via FaceTime with her beloved Nana in MN and Uncle Aaron. OMG. Thank the universe for living in CO and having access to this plant. 


Peace out Summer 2017. 

PCDH19 Diagnosis

After 12 years we have an answer to a few things. A seizure gene panel was done after I requested it. Children's of Colorado Melissa Gibbons the genetic counselor called me (October 2015) and said, "Joni, you were right. She has a mutation on the PCDH19 gene."

I cried.

It was 12 long years of "fishing" in several hundred ponds.

Now we have one pond to focus on.

Does treatment change? Nope. Not right now. 

Not until we can find out more about this genetic mutation.

Here is more about PCDH19 from the alliance we are committed to

https://www.pcdh19info.org/

Neighbors - the good and the bad

The past 10 years neighbors have always been there. Four houses, four different cities. Some neighbors are nice, others not. Why are women, mothers against each other almost like turf wars? Shouldn't mothers be all on the same team? I have two stories to "vent about".
In 2007 our Allie was age 4. She was finding out how to be friends. The little girl down the street was a year younger. Allie as she always does, told the little girl she didn't like her brown skirt. The mother came up to me and said, "I do not want our girls playing together from here on out". I am not kidding! I told the mom how sorry I was.  I explained she has a neurological disorder and she says what is on her mind. This was before an asperger's diagnosis. The mother did not want to hear of what I was saying.

The years go by. And we get really great neighbors here and there. The latest story puzzles me. Allie now is 10 and at school. I offered to watch a neighbors baby at 3:00 pm while she takes her other two children somewhere. I have a baby at home myself. No problem. The babies can stare at each other!  That morning around 10:30 the phone rang and it was Allies school teacher. "Allie had a big seizure just now, she is sleeping". I called E to tell him please go get Allie, (generally more seizures follow). I phoned the neighbor and explained that Allie has seizures, she is at school and E went to pick her up. I am sorry I cannot watch your baby today".  This crazy women, got so flustered she could barely speak. I don't know if she really understood what a seizure was. I call her crazy because she actually hung up on me. HUNG UP!! How old are we? I sobbed after that. I don't know why. I guess I felt like shit.

So moving forward I will not allow myself "out there" anymore. I will not push our selves on anyone because I do not know how they will do with special needs kids. No more!

Seizures from RAW Cookie Dough

Allie and I made chocolate chip cookies. We even got our chef's hats on too! I was getting the pans out and she was stirring and I saw that she snuck some cookie dough. Then she said can I lick the spoon and the bowl? I said yes. I should have said no. Allie had shooting stomach pains an hour after eating it. Then at 1:00 in the morning she threw up all over her bed about three times. Then the entire night every hour she had severe explosive diarrhea for the next 24 hours. Her seizures came the next day. They were every hour. The worst seizure episode in her entire life. We had to give her Diazapam 4 times in 48 hours. The side effect is stumbling,  dizzy, slurred words and sleepy. Terrible 48 hours. It took a toll on all of us.

Moving to Colorado

Better seizure treatment for Allie. After 10 years with epilepsy and 10 failed seizure drugs. Our discussion with her neurologist in 2012 was talks of VNS implant. Surgery.
So when we saw an amazing documentary from Dr. Gupta https://www.youtube.com/watch?v=tAFu-Ihwyzg - we were set for the west!
Let us try a plant before surgery! Medical marijuana is helping kids with seizures. Low on THC high on CBD this strain will cut seizures and not get her high. The thought of less seizures is the only goal in sight as of today and we are hoping to find that this June!
We are pulling up deep roots and moving to Colorado June 2014. We Sold our house in 33 hours after listing it! New baby, new school, new lifestyle...whew! More to come!

Medical Marijuana for Seizure Control

I am so overwhelmed with joy when I found out about the use of medical marijuana for seizure control. Here is the link for the documentary that Dr. Sanjay Gupta's CNN Special on "Weed". And Weed 2.

Weed - August 2013
http://youtu.be/Z3IMfIQ_K6U


Weed 2 - March 2014
http://youtu.be/tAFu-Ihwyzg

Peanut Allergy Gone!

Allie was one year old, 2004, when I gave her a taste of peanut butter. Within one second she was scrapping her tongue trying to get it off. She was crying. We saw some hives around her face and neck. Three hours at the St. Cloud Hospital ER she was discharged with a peanut allergy as a diagnosis.

We followed a pediatric allergist, Dr. Mary Keating every year. The doctor would take one blood sample to see how sensitive she was to the peanut. Fast forward to age 9 and the blood test showed that she had grown out of her peanut allergy.

Next step, was called the peanut challenge. What a dramatic title. On June 20, 2013 we drove to St. Cloud to Dr. Keating's office. Allie was given a 1/2 of a peanut, then the doctor took her vitals, looked for skin irritations, and looked down her throat for any type of reaction. Every 15 min for the next hour this would continue. The final was a larger dose of peanut then wait one hour to see if there was a reaction. Her throat felt funny, but other than that irritation nothing else. The doctor said she can now officially have peanuts! She passed. This makes our lives a little easier.