Tuesday, December 8, 2015

Not just for Children: Adults seeing success with CBD Oil in Alabama



A 58 year old Hoover, AL man has been living with intractable Epilepsy for almost half his life. For 25 years he has been trapped. Trapped by seizures. Not only did it affect him,  it affected his family. He tried several experimental treatments that had life altering affects. It wasn't until he was able to use CBD Oil via Carly's Law and UAB did his life change. He has gone from having four seizures per day to only one every two weeks.

Here is what his daughters posted on FB:
"For the first time in 58 years my father has a normal life"
 "I think the most amazing detail of this was waking up to see Dad crying tears of joy from being able to physically dream again and restore lost memories"  

Not much more I can add to those powerful statements.

When it is time to take another step forward, in the use of Cannabis Oil as medicine, I pray our lawmakers, state and federal, will read and remember what his daughters said about their Dad.


God Strong.



Thursday, October 22, 2015

Doctor's Agree with Parents,CBD is working





I'm often asked if I know any one else who is seeing positive results from taking CBD Oil. I always tell them I know some it's been helping and some it has not. But take it from a doctor if CBD Oil is effective at seizure control for those taking CBD.


"I am surprised at how good of a response we're seeing" - Dr. Jerzy Szaflarski, UAB


Are we still going to deny access of this medicine to more people? Are we still going to restrict doctors from looking at this treatment for more disorders? Are we going to allow lawmakers to tell parents and doctors how to treat their child or patient when everything else has failed?

The answers are up to you and me.

God Strong.


Link to full story by Fox6 News Melanie Posey here:
http://www.wbrc.com/story/30330669/girl-who-inspired-carlys-law-responding-well-to-cbd-oil-therapy

Thursday, September 24, 2015

Bye-Bye Vimpat - One Down, Two to Go!




I wanted to make a quick post regarding Carly's Anti-Epileptic Drugs. I am happy to say that she is 100% off of Vimpat. She had zero side effects from this wean.

This is great news for Carly and her fight against Epilepsy. She is still taking Topamax and Valium. Her next visit is in a week or so and I will report back then to see which drug we will begin taking her off of next. We are striving to see the day of mono therapy meaning only taking one AED which we hope will be CBD Oil.

Stay Tuned.

God Strong

Wednesday, September 9, 2015

The Wean Begins of Non-FDA Approved Medication




Carly' last visit was a significant visit because it's the visit we have been looking forward to the second most. The first being the initial visit to begin CBD Oil treatment. We have been looking forward to this visit because we started to wean her off of other AED(Anti-epileptic drugs) she has been taking. Remember, she has been taking AEDs a majority of her lifetime so this is a very big deal for her and us as parents.

We decided to start weaning the Vimpat first. Vimpat was a logical choice since her levels were low anyway and the chances of an adverse reaction were lower. Vimpat is the drug that is indicated and approved for the use of people 17 years of age or older.(source: www.vimpat.com) Carly is 4. Though Vimpat is in clinical trials for children it is still not FDA approved for children under 17. 



This was the BIG eye opener when I first read about Vimpat. How can this drug, which can lead to abuse and dependence (source: www.vimpat.com), be given to my then 3 year old daughter. She has been taking Vimpat for over a year. This lead to and continues to be my contention with those against  CBD treatment. No, it's not FDA approved, however, neither is giving Vimpat to a 4 year old. As with anything else if the doctor thinks the risk/benefit ratio is in the favor of the patient they should be able to use CBD regardless of persons condition. Dr's are using Vimpat in this same manner. This is what I call a double standard. Can someone explain why it is okay to give a 4 year old Vimpat when the company itself, UCB, says it is only approved for people 17 or older? One argument against Doctors administering CBD to patients is the dr's don't know how to do it nor do they know what might occur. Well, did they know what would happen to Carly when given Vimpat? The answer is pretty clear. No.

So far the wean has been wonderful. No side effects that we can tell.  She will be weaned completely off of in just two weeks and we will have another Dr's appointment two weeks after that. We haven't decided which AED will be next. Each decision is very tough because we never know what the result will be weaning an AED. 

If you are wondering, Carly is doing great other than her ear infections. She has had another ear infection which makes 4 since May. We believe it's time for tubes to be put in her ears. Her ENT and Pediatrician agree. That will be in the upcoming weeks. Her cognitive ability is still improved and seizure control is still in place. No "big" seizures and her myoclonic's are minimal, if any.

**On a side note, there are children&adults not seeing improvement with CBD. Results will vary patient to patient. I believe drug interactions have played a major role in adverse reactions to CBD, not the CBD itself. 

Wednesday, August 5, 2015

CBD Update - 98 Days



I wanted to give a quick update on Carly. Last doctors visit Carly's dose of CBD was raised to 20mg per kg. At this dose she started having very bad Diarrhea. Not only was the diarrhea bad her myoclonic jerks seemed to get worse. As I have talked about before, her myoclonic jerks have been decreasing ever since she has started taking CBD. However, the past two weeks we saw a rise in these type of seizures. Not an increase back to the 200-300 mark, but an increase from 2-3 jerks per day to 10-12 per day. This may not seem like a huge increase but the closer we are to zero the better.

Since the diarrhea was becoming an issue and the jerks raised in number, the decision was made to lower her dose back down to 15mg per kg. Her diarrhea has ceased AND her myoclonic jerks have gone back down in number. Strange indeed, but that is how AED's sometimes work. The lower the dose the more control.

I've heard from more than one person how engaged Carly seems to be, not only in pictures and video but in person. I contribute this to the lessening of seizure activity and the cognitive ability improvement she has experienced. It is amazing seeing the improvements in this arena.

Like I have stated before and I want to state again, CBD Oil is not working for every child or adult. I have heard of other success stories and some with no success. From what I have heard in the Carly's Law study, 1/3 has seen improvement, 1/3 has seen no change and 1/3 has seen symptoms get worse.

We are very fortunate that Carly has seen improvement and we know it can change in an instant and we pray daily others will see positive results as well.

God Strong.

Saturday, July 18, 2015

The Struggle - Feelings from a Parent with a Rare Disorder Child




I came across an aricle last night which broke my heart however I found myself relating to the struggle. The struggle is inwardly as well as externally, one that tests your Faith and Strength. Why does it test your Faith? Because surely God did not intend to give your child a disease/disorder that has no cure OR treatment. Strength? Strength, both physical and mental, is what carries you from day to day. It keeps you from falling to your knees and giving up. 
This quote is one from a mom which embodies the feeling of helplessness sometimes found in rare disorder parents. Full article here: http://bit.ly/1HXr19P

"Sometimes I wish she would have gotten Cancer; at least there would've been a protocol we could've follow," Nicole said. "There is absolutely nothing I can do to help my daughter, and as a mother, there is a lot of guilt."

When your child has a rare disorder(or a diagnosis of anything) all you pray for is help for your child and when you find out there isn't any...it rips your heart out. There is no "map" on how to wage war on what has attacked your child. It is a very bitter pill to swallow. I encourage all parents who are on this arduous journey to remember what God tells us in Proverbs and commit it to memory...
"Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths."-Proverbs 3:5-6
As a parent, you know the struggle exists. Respect the struggle. Keep fighting and keep advocating. This is the life God has truly blessed you with and best of all.....
There are cures in Heaven.
God Strong.

Wednesday, July 8, 2015

CBD Update - First EEG Since Taking CBD Oil



Today was a big visit for Carly. She had her first EEG since being put on CBD Oil. To be in the study Carly had to have a recent EEG submitted and that was done a few months ago. They compared that EEG to the one she had today and the Dr. Bebin said there was "definite improvement"!!  That's very big news. Not only are we seeing it in person, her EEG is now proof that CBD Oil works and, in my opinion it's documented. I am not saying Carly now has a "normal" EEG but that there is improvement.

Since being on CBD Carly has seen a reduction of seizures (Myoclonic Jerks from 200-300 per day to 2-10 per day), No Tonic Clonic's and cognitive ability improvement which has been documented with video I have posted on this blog.

While this is a blessing for Carly, I know of many families with children and adults that are not seeing improvement and a few that have been taken out of the study. As we all know this is medicine and like any other medicine, what works for some may not work for others. I pray continually for those children and adults that haven't seen positive results. Though it may not work for everybody I am a firm believer that everyone deserves the right to use CBD Oil regardless of disorder. People have the right to see if this improves their condition and quality of life.

I think it's important to remember the Carly's Law study is paving the way for more doctors to be able to stand behind proof they are now seeing to get this to the masses. Though they may turn painfully slow, I think the wheels are starting to move.

God Strong

Friday, July 3, 2015

CBD Update - After the Rash





I wanted to give a post-rash update. There was no determination on what caused the rash. I believe it had to do with her strep throat. Carly had to go through two rounds of Antibiotics to shake the strep. It wasn't until the second round of antibiotics did it seem to start tapering off. Of course, it could have been some other skin condition too. A Dermatologist prescribed a topical ointment that we have been applying so maybe that had something to do with its disappearance.

Regardless of what caused the rash Carly has been steady. No major seizures since being on the CBD Oil and that continues to be the case. Her myoclonic jerks did seem to worsen when she was briefly taken off the oil, but since being back on they have they have subsided again.

Since we have decent control over her seizures, she is not on the highest dose nor do I believe she needs to be. There is no reason to keep upping the dose of CBD if we have control at a lower dose. A defining moment will come in a week or so when she has her first EEG since being on the CBD. We hope to see a change for the better in her EEG to show concrete evidence CBD is having a positive affect on her brain. Sure, the control of seizures is proof, but it would sure be nice to see a side-by-side comparison of the EEG's which we will see soon.

**Carly's results may not be typical.

God Strong

Thursday, June 18, 2015

Onward - Carly is back on CBD




After many tests from Allergist, Immunologist and Dermatologists and praying daily, Carly is back on CBD tonight! There is no clear reason why she has a rash but the doctors have all determined it is safe for her to continue taking CBD.(especially since the test for Sesame Seed allergy came back negative)

She is starting over at her original dose which is a slight set back since we are back to square one, but we will take it. We are very thankful of the doctors care and concern of Carly's safety. We hope we will continue to see improvement though we know it is not promised.

Thank you for all the thoughts and prayers. Now praying for no more set-backs.

God Strong.

Thursday, June 11, 2015

Carly's CBD Treatment Placed on Hold



Cell phone rings today, I answer. Amy is on the line and tells me Carly has been taken off of CBD completely until further notice. It is hard to describe the emotion that rushed through me, but I can tell you it wasn't a good feeling. All the progress she has made is now in jeopardy all due to a rash. I wanted to cry but couldn't because all I could think about is that this couldn't be happening, but it is.

The doctors are taking Carly's safety and health into consideration by taking her off CBD since the rash was slightly worse this morning. Removing her may or may not be permanent. We wont know until we find out what the source of her rash is. At this point, it is anyone's guess. We've had countless opinions on what it might be and we are looking into every suggestion that has been given to us. There is still the chance this is a fluke or a strep rash and she is placed back on CBD in the future. 

Not much more I can say. Praying better news is coming our way. 

God Strong.

Wednesday, June 10, 2015

CBD Update - Six Week Visit and Possible Set Back



It was our 6 week CBD visit today and Dr. Bebin checked the rash Carly has developed since her last CBD visit and is very concerned. (Rash developed last Thursday, June 4th)

The concern is Carly might be having an allergic reaction to the CBD Oil since the rash showed up just after her last visit when her dose of CBD was "upped". Having this concern, she immediately got us in to see the allergy specialist at Children's. Not one but two doctors walk in the room. One immediately looks at her rash and says "Yes, that's a drug interaction rash" I quickly said, "No, you mean that is not a drug interaction rash". The other doctor then said it did indeed appear to be a drug interaction rash and they started talking about how to treat the rash.

As they spoke among themselves in the exam room, I piped in and said, "Don't forget she tested positive for strep throat on Monday(June 8th)". Obviously, that changes the story because it adds to the difficulty investigating the cause of the rash, which is a good thing. Although strep rash doesn't typically start on the forehead, they could not rule it out.

Suffering from a rash is very rare with CBD Oil usage though it has been reported in a few patients across the United States. If she is allergic to the CBD Oil, she is more than likely allergic to the Sesame Seed Oil. The product, Epidiolex, suspends the CBD in Sesame Seed Oil as a vehicle to take the medicine, whereas some other products use other suspensions like Olive Oil etc.

If the rash is from Strep, it should clear up in the next week. If it's not, it will either stay the same or progressively get worse. As of today, the rash is not harmful, however, I was told if it affects any mucous membranes it can be very harmful or possible fatal. Needless to say, there will be a very close eye kept on the areas to which this could occur. The point was etched in my brain when the doctors told me if it affects her mucous membrane anywhere on her body, call us while you are driving to the ER, not before you take her. It's that serious(as with any rash I am told).

We have an appointment set for one week from today to see if the rash has gone away. If so, we still won't know 100% if its CBD. We will only know that if we go back up on her dose and it returns. There is no pressing need to up the dose since Carly is seeing good results thus far in the study. If it is from the CBD Oil, it will be up to the Doctors to determine whether or not she pushes through rash or is taken off completely. Many factors will come into play to make that determination.

So here we are six weeks into Carly taking CBD. Seizures have become pretty much non-existent and she has seen awesome cognitive ability improvements. It sickens me to know we might have to come off the CBD. No way to tell tonight and all we can do is pray she can keep taking CBD. We have a chance there is no correlation to the oil. I personally think this is a fluke and she will continue down the path of progress.

As Amy has said, maybe the rash was God telling us to take her in to see the Pediatrician on Monday only to discover the Strep Throat. He was being her voice. Otherwise, we would have never known.

Praying Amy is right.

God Strong.



Thursday, June 4, 2015

Keep the Faith and Don't Sink




I stood in the driveway throwing a ball back and forth to Colton. I kept reminding him when he didn't catch one, he was taking his eye off the ball. After about four more catches, he dropped one. He quickly ran to retrieve the ball and said while he was running, "I took my eye off the ball like Peter." Not hearing him clearly the first time I asked him what he said. He looked at me and said "like Peter." Honestly it took me a minute and before I could figure out what he was telling me he said "you know, when Peter took his eyes off of Jesus". He was referring to Matthew 14:22-33 when Peter let his faith wane and started to sink in the water. I strongly feel God was talking to me. I haven't lost Faith but maybe God was reminding me to keep it.

I tell this story to try and remind all of the special needs fathers and/or parents out there, including myself, to have Faith. Our children are suffering and it sucks, no doubt about it. It's hard to find anyone able to relate to the heartache you feel at any given point during the day. However, don't give up. Do not under any circumstance fail the small and big tests of Faith. Faith is the gasoline for your daily fire. Faith is knowing God's got this, we just have to find a way to keep our inner struggles to a minimum while living life to His maximum.

Don't sink in the deep rough waters of Special Needs Parenthood. Keep the Faith.

God Strong.


**Full Disclosure: I had to go re-read Matthew to get the full context on what Jesus was telling Peter. Yes, I forgot. Pastor isn't in front of my last name. :)

Sunday, May 31, 2015

Proof is in the Video.




There is no better proof CBD Oil is helping Carly than watching a video.  As I have mentioned many times before the seizure control is paramount. It is so important because so many lives are lost every year to SUDEP(Sudden Unexpected Death in Epilepsy). However, I've also mentioned how awesome it would be if there was any cognitive ability or processing improvements with Carly. Well. Watch the video.

What you will see is Carly listening and doing. Something we have never witnessed before until today. No way anyone can tell me CBD Oil has not helped her brain make new connections to be able to process a simple task and complete it. And by the way, she loved doing it and expressed those feelings by smiling each time.

Smiling is what her mother and I were doing today. Everyday is a gift and tomorrow anything can change, but thank God for giving us this moment.

God Strong.















Thursday, May 28, 2015

CBD Update - Four Week Visit




Four Week Visit to Children's Hospital 

Levels and Side Effects: Current blood and urine levels looked great. There have been zero drug interactions at this point which can be seen in the analysis of the blood and urine. They are also looking for any other adverse things she might be experiencing.  The doctors said the most prevalent side effect thus far in patients has been diarrhea. Luckily Carly has not had any adverse reactions, knock on wood.

Dose: This visit Carly's dose was stepped up again. They are slowly raising the dose until she reaches her max level. At that point we will start looking into slowly taking away an AED depending if CBD seems to be working as it is now.

Myoclonic Jerks: When Carly started CBD Oil, the Myoclonic jerks went away totally. Currently they seem to creep back up when she is getting to the end of a two week visit. They upped her does and close to the two week mark before upping the dose again, the seizures tend to show back up. However, we are talking in the teens not the 200-300 range she was suffering pre-CBD. This is no real concern because we have days in which we see zero myoclonic jerks. So far, she hasn't suffered any Tonic Clonic seizures which are the nasty ones!

Alertness: Carly is still more alert and focusing on things better. She is tracking items easier as we move them in front of her face and with smoother pursuit.

Doctors have mentioned during discussion CBD Oil is not working for all patients in the study. This should come as no surprise. We all know it's not going to, nor is it promised, to continue to work even if it works early on in treatment. I've also heard from parents their child's seizures got worse before they got better.

Until next time...

God Strong.

Dustin

Sunday, May 17, 2015

Siblings are Watching





My first born will be 6 today and I couldn't be more proud of him and honored to be his daddy. I pray I can teach him from the mistakes I have made so he won't fall into the pitfalls. I seek the wisdom of our God so I will be able to teach him to live his life for the Lord, and if he strays, he will use the light of Christ to find his way back onto the path.

Proverbs 22:6
Train up a child in the way he should go; even when he is old he will not depart from it.

As a father with a special needs child it's very hard to make certain the typical children in the household are getting attention. I try my best to make sure Colton gets the due attention he needs and deserves. For most of his short life, it has been all about Carly for obvious reasons. Even when we are around friends and family everyone always asks about Carly. This doesn't matter if he is present or not. I fully understand it. I don't blame or want anyone to stop asking about her. As a dad, it's my job to make sure he understands that he is just as important than any of our children. I often times refer to us all as Team Chandler. I want him to feel apart of the team. There is always challenges. Every time our family leaves the house, we have to prepare around Carly. Food, diapers medicine etc. When we are out in public, we have to make frequent stops along the way to care for her, thus taking away from him and his other sister. In their eyes, it starts to appear its all about her, not the team. If you have other children in your family, don't forget to be there for them. It is very easy to let time slip by and lose that opportunity. Explain that being in your family is a "team" and everyone is created equal. The team needs to understand the life plan and guess who the Life Coach is, you. Tell them and show them you LOVE THEM and do it OFTEN....They are watching.


God Strong.



Thursday, May 14, 2015

CBD Update - Two Week Visit





Two Week Checkup:
Dr. Bebin said "since the first time I examined Carly, she seems more alert" at this visit.  This confirms what I've thought for the last two weeks. Her eyes are a lot calmer,under control and she is more alert, no question. The best way to describe about her eyes is that I see more of the brown in her eyes than white. Previously I would see more white than brown. This has been consistent for two weeks. She is looking more straight ahead than from the side. I think Carly is seeing more of the life in front of her than she ever has. I can't tell you how seeing more of her eye color makes such an emotional impact on me personally. It seems I can "connect" with her as daddy. Very powerful.

I asked her school today if they could tell any difference in Carly. Two assistants said they thought the same thing about her eyes and they mentioned her arms were not as active while feeding.

Seizures:
Carly has had minimal, if any, myoclonic jerks since taking CBD. Prior to taking CBD she was having upwards of 100-200 per day. Prior to CBD, I would see at least 4-5 jerks while feeding Carly at any given sitting. The last several times? Zero. CBD is controlling her seizures at this point. As we all know, this could change at any second.

Sleep:
Carly still has good nights and bad nights. Although she seems to have had more good nights falling asleep than bad ones. Again, her sleep patterns have never been consistent. I do not think CBD has had a positive or negative impact on her sleep at this time.

Overall Mood:
Carly has been very happy. She is not sluggish or "zonked out" during the day.

Drug Interactions:
None

Current AEDs:
Vimpat
Topamax
Valium
CBD

Monday, May 11, 2015

Drawing Carly to Stand




As Mother's Day got closer and closer I found myself trying to figure out what to do for Amy's card. The kids and I got her a little gift, nothing major, but we didn't have a card. If anyone knows Amy, she loves cards from the kids. Sometimes I think she would rather have a card then a gift. Well, I still had no card on Saturday. Colton and I had to go to the store so I figured I would grab one there. No dice. The Saturday before Mothers Day? Who was I kidding? So, plan B.

I told Colton he was going to make his mommy's card. He loved the idea and couldn't wait to do it. We stealthily walked to the basement and got out his crayons and construction paper. We folded the paper in the shape of a card and he began to write. Happy Mother's Day on the front and We Love You on the inside along with all three names listed in his writing. Colton wanted to draw a picture of him the two girls and his mommy.

In a kindergarten artistry kind of way, off he went. Mommy was drawn first, of course. Then he drew himself. As he drew the stick-type figures with round bodies, he explained every line he drew and why. He drew his younger sisters and finished the picture. Complete with green grass, flowers, and a big yellow sun.

After staring at his work in pride, he handed me the card, looked up and said, "Daddy, I drew Carly standing up."

I kissed him on the forehead and told him "One day, son, one day"

God Strong.


Wednesday, May 6, 2015

Phases of Maturity: A Special Needs Dad



Three Phases of a being a Special Needs Dad(Or Parent)...As I see it.

Phase One - Sorrow

Whether we want to admit it or not, we all have a little sadness when our child is diagnosed with a disorder or born "non-typical". During the time I was a cop, I considered myself to be pretty tough. I'm not the strongest guy on the planet, but I could hold my own. I had to for survival, literally. I've been in more struggles with suspects than I care to count and have been called just about every name in the book. Some of those names aren't even in the book they're so bad. On a side note, I wasn't very good at foot chases. I think I was only 50% successful when someone ran from me. God didn't bless me with speed, just saying.
Even as tough as I thought I was as a cop, nothing I've been trained to do or any of my experience on the street prepared me for when Carly was diagnosed. We knew she had problems at 8 weeks old because that was her first seizure. Even after her seizures began, I thought it would be something I can control. I'm a dad. A cop(at the time).  I can handle any situation. After all, that's what I've been trained to do for years. Of course I can fix it, that's what daddy's do. They fix things.
When Carly was diagnosed with CDKL5 on Feb. 22nd 2012 it was devastating. Crushing in fact. I already had a older son and everything was perfect. No way something is wrong with my daughter. Well, it was true. There is no cure for CDKL5. No treatments. Nothing. Heck, there are only approx. 1000 in the world.
The following weeks after getting the news and it sinking in I did what all real men do...I cried. In fact, I cried several different times. Listening to a song would make me cry. Just seeing things I thought Carly would never be able to do made me cry. I don't really know how long I grieved. But I did and it was necessary. It was almost cleansing to a point.
Grieving, I believe, is part of maturity of being a special needs father. None of us are too tough to cry. It's okay. Let it go. Your mind and soul will tell you when this phase is over and all dads are different.  I'm sure there are some dads that read this and say they didn't have a sad phase they went through. If so, they are way tougher than me.

Psalm 34:18
The Lord is near to the brokenhearted and saves the crushed in spirit.

**Important to note: If you are depressed please seek professional help.**

Phase Two - Acceptance

Acceptance is the hardest phase. Accepting is understanding the reality of a situation and knowing there is nothing you can do about it. As mentioned above, to us dad's, that's not a pill easily swallowed. For me, it was a little easier accepting my families situation. Why? Because I believe in Jesus Christ. I believe we have all of our children for a reason, typical or non-typical. I thought it was for the reason I had planned, but with Carly its obviously not the case. God tells us that our lives are not our own plan, it's His plan. If you don't know Jesus, introduce yourself.

Just remember every child on this planet has a purpose and contributes to our society no matter capabilities. Keep in mind, God doesn't create disabled souls. Once you accept this fact, you can begin to live your life.... once again.

Proverbs 19:21 - Many are the plans in a person's heart, but it is the LORD's purpose that prevails"


Phase Three - Life

After you have taken time to cry and accept what you have been given, only then can you start living again. Take this opportunity to look at yourself differently. Look at others in a different way. Look at life with love in your heart because Love is the only thing that will prevail. You have a purpose. You're the lucky father of a special needs child! That child is teaching you things you would have never learned and giving you knowledge you would have never sought after if it wasn't for them. What an honor!

For the record, I still cry, I still pray for God to give me the strength to accept what He has placed before me. I also pray God shows me the Love for all people no matter what walk of life they may have come from. Just because we complete a phase of maturity doesn't mean it won't be revisited many times throughout our lives. And don't think I haven't thought about losing Carly at a young age. Happens all the time. What comforts me? Carly has a free pass into Heaven to touch the face of God. To lay in the lap of the Lord and wait on her parents and siblings. Just like all children. How awesome is that?

There is HOPE and LIFE right around the corner waiting on you.

Jeremiah 29:11- "For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and hope."


God Strong.

Saturday, May 2, 2015

6 doses

It's been 6 low doses of CBD Oil for Carly since Wednesday. So far everything is steady. She seems to be having less Myoclonic jerks. "Jerks" occur when her entire brain is "shocked" at one time causing her to jump.  We are keeping track in a journal so it will be easier to tell in a couple of weeks or more if I am dreaming this or it's true.

Her teacher said she seemed more calm during her day at school(after three doses). Carly has a tendency to shake both hands really, really fast at the same time near her head. So for her teacher to mention this is kind of a big deal.

Sleep pattern is about the same though she seems to be falling to sleep better.

I wanted to get an update out quickly. I think we will begin to see changes in seizure pattern, if any, after two to four weeks. I hope to see cognitive improvement at some point too.

God Strong.





Wednesday, April 29, 2015

Time to Blog

This is my attempt at a Blog. Many have asked for me to start one so I thought this would be the perfect time. Time to chronicle a walk with Carly. What you can expect to see in this blog are things such as Carly taking CBD Oil and positives or negatives I see as she take it. You will also see other thoughts I have as a special needs father as I "Walk with Carly". Family stuff too. 
Let the blogging begin....

God Strong.