8/2/20

CBD - What Have We Learned....Here is Emma's CBD Journey and Some FAQs

Emma before Haleigh's Hope in 2017 and after in 2020
CBD has been a life saving decision for Emma. However, we have had to explore the CBD world to find exactly what was a perfect fit for Emma and along the way we have learned a lot about CBD. We get lots of questions regarding it and how it has helped Emma so I wanted to share with you some of the important things we have learned about CBD. 

A little quick seizure background on Emma....Emma started having tonic clonic seizures at 4 days old, later on before we started CBD oil she also developed Infantile Spasms and focal seizures as well. Over all in her 5 years we have seen about 5-6 different types of seizures. 

Emma's CBD journey started at 7 months old. Here in Utah a law was passed, HB105 Charlee's Law which allowed Emma to try CBD once she failed over 3 seizure meds. It helped her a ton and we were seeing great results with zero seizure activity for 1.5 years. But then at around age 2 tonic clonic (aka Grand Mal) seizures return full force and we couldn't figure out why. Come to find out the CBD company we were using changed their formula and didn't inform its costumers. This was heartbreaking for us so we asked the company for a lab report and they wouldn't supply us with one. That to us was a HUGE red flag so we switched to another "reputable" company that we had heard a lot about. Tried it for 6 months and we just didn't see any results, we also weren't supplied a lab report or help and guidance on dosing. So at this point we were frustrated. 
Emma was now on 5 seizure meds plus the ketogenic diet and she was still having 20-25 seizures a day. We felt lost and confused we were losing our baby girl to seizures, her body was shutting down she couldn't take all the seizures and medications. She lost her smile, her laugh, her ability to sit up (propped sitting on her own), her babbling, her ability to safely eat by mouth, and she even lost the ability to have the strength to breath on her own at times.
This was Emma for a year....heartbreaking

Finally in March 2018 we decided to try one last CBD oil that we had found in our research, Haleigh's Hope. They not only supply you with a lab report but you need that lab report to find the proper dose to be given. They also supply you with a dosing information video and a dosing calculator. This was heaven sent not only were we getting the proper help but we knew exactly what Emma was getting because we now had an official third party lab report with every bottle/batch number. They also have other documents to help you with dosing guidelines and medication interactions. Emma's seizures started to decrease and we started to wean medications that were really hard on her body like onfi. Over the course of the year we finally got Emma off all her seizure meds except one that we felt was helping. We even weaned the ketogenic diet. Emma now has amazing seizure control and is only on vimpat and Haleigh's Hope. Emma started to smile again late 2018 and started to laugh again in 2019. It took years to get her smile and laugh back, Even her cry took years to return. She can also start to taste by mouth again. Her cognitive ability has also increased thanks to Haleigh's Hope. Never ever did I think back in 2017 that in 2020 our little Emma would be learning how to communicate with us through an eye gaze device. Haleigh's Hope has saved her life. 



I want to clear up some misconceptions in regards to CBD and answer some common questions that I get often......

"Epidiolex is CBD why not save money and let insurance pay for it? 
First of all Epidiolex is NOT real CBD.....it is a lab created single molecule drug.
To be completely honest after doing our research we came to the decision that we would rather pay out of pocket for CBD forever, rather than to use Epidiolex. We did a lot of research and this is some of what we found....
It contains additives that can actually trigger seizures for some people; alcohol, saccharine, chemical adjuncts and preservatives. Epidiolex is a lab created, single molecule drug, where as a "Full spectrum" cannabis oil contains hundreds of individual components, and science still can not say which ones exactly are responsible for seizure blocking activity. Full spectrum has Terpenes, terpenoids, antioxidants and multiple level cannabinoids, which all feed the ECS in addition to the therapeutic seizure control. Epidiolex does not have these natural components that you will find in a "full spectrum" CBD oil. I have also seen families that have tried this and had awful side effects. So for us its just not worth it! 



Is CBD really a miracle medicine?
Absolutely CBD is a miracle, HOWEVER miracles take time and that is one thing that most people forget when trying CBD. Seizures are a powerful thing and getting control of them takes time.  Trying CBD for a month in my opinion is honestly not even trying. CBD takes time, you should only increase your dose for CBD every 2-3 weeks (I prefer 3 weeks) if you increase too much too fast you will miss your sweet spot and too much can actually make things worse. Slow and steady and less is more is the key to effectively using CBD. To find the dose that works perfect for Emma took almost 8 months so don't give up an give it time, weeks or a month is just not enough. Don't get me wrong some do see immediate results but those like Emma with a complex seizure situation it could take longer. 

How do I dose CBD with other medications?
CBD is best dosed 2 hours apart from any other medications. There are some seizure meds that it can interact with that you will want to watch closely and one of those is onfi (can be very dangerous). This was another thing we learned about from Haleigh's Hope as they also give you access to a document with known medication interactions. They really care about you and want to help you on this journey. 

What is Emma's dose we want to try CBD?
Every person is different so this is one question I do not answer because Emma's dose will not help you or your child. Your child needs a dose based on his/her own weight and needs.

Why does Emma use CBD oil?
At first it was for seizure control, but we started to see cognitive skills improve as well as muscle tone (not so stiff)

In regards to Haleigh's Hope, what is the difference between the oil with safflower and the one with coconut oil?
It's honestly just preference. We use the one with safflower because you don't have to shake it, it doesn't separate and in my opinion not as sticky. This means it doesn't stick to her gtube extension as much as the coconut oil does. We had an issue with the coconut oil one sticking in the line so we switched and no issues. However, if taking by mouth I hear with coconut oil tastes better. 

Do you give by mouth or gtube? If gtube how do you make it not stick to the extension?
Yes, we give through gtube; first we use with safflower (as mentioned above) which helps a ton. But we also flush with warm water at least 24-36mls of water. Sometimes we even flush with food and that helps too. Some people choose to also give it directly into the button but we choose to use the extension as we had too many issues the other way. On a side note we did give the oil by mouth at one point when her dose was super small, its still small but she drools it out before it could be absorbed into her body so we lost a lot of it. Started to give through gtube and results improved for her. 

How often do you give CBD?
For best results CBD should be given 3 times a day. So Emma's daily dose is split up into 3 doses. This can get tricky and we had to change her whole med and feeding schedule around but it was so worth it. We tried giving it twice a day but it just wasn't the same result for us. Emma's schedule is prescription meds at 8:30 am and 8:00 pm. Her oil is given at 11, 5, and 10:30- 11pm (just before I go to bed). This works as it is spread far enough apart from other meds and gives great coverage for the day. 

What advice do you have for someone wanting to try CBD?
-Give it time don't rush to increase until its time
-Sometimes it can get worse before it gets better (like with any medication)
-Never use an oil unless the company will give you a lab report
-I also wouldn't use an oil unless the company gave guidelines and suggestions/support with dosing
-Do your research! 

Here a link to a great FAQ page provided by the Haleigh's Hope website: 



DON'T FORGET TO FOLLOW US ON SOCIAL MEDIA


EMBRACE LIFE 

7/22/20

Preschool Chapter

When Emma turned 3 years old we graduated Early Intervention and it was her time to move forward. However we were not ready for this next step...preschool?!?!? Emma was only 3 years old, still having seizures, and couldn't communicate. I felt like we were sending a newborn off to preschool. At the beginning of all this my answer was NO! No way were we going to be sending her off to preschool. Well as you know if you follow us on social media she did go to school and it was the best thing ever for her! Her teachers were fabulous, her nurses were amazing, and the kids in the classroom melted my heart as I seen the love they had for Emma. It was so hard to let go and let this happen but I wouldn't change a thing it was absolutely worth it!
Art Time
 Emma loved music and story time the best! She loved ringing the bells during music!
playing at recess
dress up center 

Preschool Graduation 


She's off to Kindergarten!!!!!


7/21/20

UTI Journey

A UTI that landed her in the hospital with her stomach shut down
Emma's chronic battle with UTI's started in April 2017 and it has been incredibly hard especially since at his point July 2020 we still don't have any answers. When Emma gets a UTI we have to do a lot of "reading" Emma, for example Emma doesn't get fevers. So we have to watch for the following, increased heart rate, seizures, stiffness, vomiting or the start of it with lots of gurgling, holding urine or going a ton on her own like constantly, and occasionally the smell/look of her urine. We have tried so hard to help her with these from her pediatrician to 3 different urologists and infectious disease. The last urologist also took it to an online group of Drs that he works with from all over. We have just exhausted all measures and tried so many things to help Emma overcome these chronic re-occuring UTI's (list below of our treatments). One of the biggest struggles for Drs is that Emma keeps growing rare bacteria and she can move from one UTI to another; while on antibiotics for one she grows another bacteria that is resistant to that antibiotic forcing us to start a second antibiotic. Some bacterias have been so resistant that they have required adult antibiotics that are super hard on kiddos. These UTI's are obviously painful but for Emma they also trigger a load of things that are a making this battle even harder and more scary....
     * Seizures (Emma is seizure free without a UTI)
     * Vomiting to the point of her stomach shuts down (stomach ileus)
     * Dehydration due to the vomiting requiring hospitalization for IV fluids
     * Her body gets so stiff she can't bend in half to get in her chairs/or be held
     * Her heart rate skyrockets 
     *Holding her urine and making caths extra hard to get it all out


VCUG (2nd time) in 2020





Here is a full list of tests and treatments that we have tried over the last few years....meanwhile multiple UTI's (over 30) are still happening between all these tests and treatments.....







* May 2017 - VCUG to check for urine reflux - NORMAL
* May 2017 - Kidney Ultrasound - NORMAL
* Jan 2019 - Urologist suggest she has
      neurogenic bladder and to cath her twice
      a day AM/PM
 * Jan 2019 - Added cranberry, vitamin C and D-Mannose  
 * Jan 2019 - Start prophylactic antibiotic
 * April 2019 - Start bladder irrigations to clean out
      anything that might be hanging out in the bladder
  *May 2019 - Started Morning Celery Juice - we found some
      research proving celery juice could help reduce the bacteria causing
      UTI's (however with all her different bacteria that she grows it didn't help
      but it did help with keeping things moving in her bowels (great for
       constipation)
  *June 2019 - Video CMG - to test how effectively the     
       bladder empties itself when full (Emma's bladder is very spastic and
       stretches, she can hold as much urine in her bladder as a grown adult) The
       amount she could hold shocked Drs., she did eventually empty her
       bladder during the test. But it did confirm her neurogenic bladder.
  *July 2019 - Directed to start cathing 2-4 times a day if she's not
       emptying within 4 hours.
  *Nov. 2019 - Started Gentamicin flushes - Putting antibiotics directly into
       her bladder nightly and emptying in the morning. This worked and gave
       her two months with no UTI's we thought we found her solution......
       but then 4 more after that so we proceeded....
  * April 2020 - Repeat VCUG - NORMAL still no reflux found
  * May 2020 - Started Methenamine - another prophylactic antibiotic
5 More UTI's led us to
  * July 2020 - MRI to check for tethered cord - MRI Normal
         No tethered cord
  * July 2020 - Appointment with infectious disease
  * UPCOMING Aug 2020 - Vesicostomy surgery


     
       Poor Girl when she got diagnosed with her first UTI (April 2017)

Some Questions we have been asked......

Why 3 urologists???? 
Another hospital for UTI caused stomach issue
     Well the first one was set on all that we could do was Cath her 4 times a day and take the prophylactic antibiotic. She wouldn't give us any other treatment options. So if you know us you know that wasn't going to fly with us. So we requested a new urologist. The second Urologist gave us the chance to try gentamicin flushes and irrigations which was great but then when they didn't work he said, and I quote...."Well maybe we just need to pick which ones we treat and not treat them all" WAIT WHAT?!?!?!? UMMMM no we will treat all my daughters UTI's they cause her so much pain, vomiting, seizures and not to mention possible sepsis. No thank you! One word of that info passed along to our pediatrician and he decided to look around and hand pick our latest Urologist. He listened and he let us get the MRI, try a new prophylactic antibiotic, and now gave us the vesicostomy plan. He even took her to a board of other urologists to help find new suggestions on how to treat Emma. 


Being a champ at yet another Dr appointment for UTIS 
What is a vesicostomy?
A vesicostomy is a procedure in which a small opening is made in the lower abdomen (usually just below the belly button) to allow urine to drain out from a child's bladder. This usually is done when an infant or young child has problems emptying his or her bladder 

Why does her stomach stop working when she has a UTI?
This is a tricky question as no one can be 100% sure why but this is what they are thinking is happening. When Emma gets a UTI her bladder gets inflamed and irritated which then puts pressure on her stomach and bowels. This can trigger constipation (which she already struggles with) and it can also apply pressure to the stomach causing her to vomit and make a "blockage" in her system. They call it a stomach ileus meaning a mechanical blockage not a physical one. Her stomach basically gets paralyzed and cant move things along so she chronically vomits and requires us to go to pedialyte for sometimes 10 days. Other times it lands us in the hospital for days of IV fluids and meds until her stomach can even handle pedialyte.

Does Cathing bother her? 
No cathing doesn't seem to bother her. Sadly I think she is just use to it and sometimes she actually looks relieved when we do it. Can you imagine that much urine and not being able to get it out.

Do you clean cath or sterile cath?
We have done both. We started with a clean cath meaning we didn't use the betadine sticks for cathing but recently we went to sterile caths in hopes that it would help and sadly it didn't.

Will the vesicostomy stop the UTI's?
Sadly nothing is a guarantee but we feel it's worth a try even if it just decreases the frequency of the UTI's we feel that it is worth it.

Can she still swim with a vesicostomy?
YES!

THANK YOU!
To end I just want to say thank you to our social media and special needs community as some suggestions of things to try came from all of you. Also a huge thank you to Emma's Pediatrician and her 3rd urologist for listening to us and exploring options outside of the box to treat Emma. I will update this post after her vesicostomy and praying its a positive update.

I wrote all this out in hopes that it can help another family if they run across this horrible chronic UTI situation. Some of these treatments are "typical" treatments that a Dr would suggest and some aren't; some are things our Drs. have never even tried before. Sending love to those who are reading this for tips because my heart hurts for you as this is not an easy battle to add to an already hard battle of lissencephaly (or other diagnosis).

LOVE YOU ALL!