Diagnosis Overload

Rhythm Star Adams just turned 5 years old.  It's been a tumultuous road to age 5, but thankfully the last 3 years have been more about the positives than the negatives.  Her seizures stopped in 2017 and have not returned, thanks to Haleigh's Hope Cannabis Oil.  I can't say it enough - there was no change in her seizures until we introduced CBD Oil.  All pharmaceuticals that we tried on Rhythm did not impact her seizures in the slightest. 

Rhythm's ongoing medical story began in the Philippines in 2016 and continued on here in the United States. Even before that, as she was a long-shot to survive her emergency premature birth.  As I reflect back on everything, I am still left troubled by something.  Rhythm has received 5 different medical diagnoses over the years from Doctors, Neurologists and Therapeutic Experts.  We still struggle in some cases to determine whether or not Rhythm did or still does have these varying diagnoses.

Here is a history of the diagnoses given to Rhythm:

January 2016: Diagnosed with Infantile Spasms Epilepsy after the onset of seizures
April 2017: Diagnosed with Petri-Ventricular Leukomalacia (PVL) after receiving an MRI at a hospital in New Jersey
July 2017 - Diagnosed with Cerebral Palsy by a Therapy team referred to us by our neurologists in New Jersey
October 2017 - Inferred that Rhythm had Cortical Blindness after an eye exam had her eyes declared healthy, but the associated condition of Rhythm's brain may be impacting her ability to process what she sees.
December 2019 - After a significantly long time (14 months) had passed following an EKG where there was no hyppsarhythmia, Rhythm's former neurologist in Las Vegas called us to let us know that although no seizures were present, signs of Lennox-Gastault Syndrome (LGS) were present.

Infantile Spasms, PVL, Cerebral Palsy, Cortical Blindness and LGS.  That's a lot to process over the years, and as we try to make sense of Rhythm and her behavior, mannerisms, patterns and development, we know that the answer has to be there, somewhere.  Not only what she has, but what it means for the future.

In my next 5 blog posts, I will take each of these diagnoses one by one, look at all of the causes, symptoms and developmental outlook and compare them to Rhythm's medical past, the similar symptoms she experienced and how she has developed.  I am not inferring that any of these are wrong, but there seems to be shades of gray on the surface with some of them and how they have applied to Rhythm.

I would also be very curious about the experiences of others in this regard.  I just don't know how different Rhythm's case is compared to others.

Rhythm's 5th birthday party was very low key in this time of COVID-19, but some of her friends in the neighborhood treated her to a Happy Birthday sing-along and some cute sidewalk chalk art.  Rhythm then had a pool party here at her home.  Happy Birthday, Rhythm.  Our precious little girl.

We Stop the Seizures!

"Just keep doing what you are doing."  I'll never forget that quote.  Even our neurologists were beginning to see that Rhythm was a very different Epilepsy patient.  After five pharmaceuticals failed, all we had now was Haleigh's Hope.  It was the only thing that had impacted Rhythm's seizures in a positive way.  However, we were still dealing with myoclonic seizures, which were always a reminder that Infantile Spasms, that insidious and devastating form of epilepsy, was still infecting Rhythm's body and brain.

By this time, we were giving Rhythm .3ml twice a day and .2ml once a day of Haleigh's Hope.  Our options now were to work with the dosage and potentially the strength of the CBD Oil.  The strength we were on was 20:1, which means a strain ratio of 20 CBD to 1 THC.  It is a very low THC strain, which has allowed Haleigh's Hope to be a legal supplement that can be shipped to all 50 states.  This particular ratio has been shown effective in treating anxiety, cerebral palsy, depression, and epilepsy.  We had 2 other options for strain ratios - 15:1 and 10:1.  In both cases, the CBD becomes less, so that did not seem like a viable option for us, as it was the CBD that was the effective element of the Haleigh's Hope treatment.

Then we found out something that had not occurred to us.  We started to read about TOO MUCH CBD Oil bringing on myoclonic seizures in epilepsy patients.  We were giving Rhythm a total of .8ml during the course of the day over three different intervals.  We decided to pull back on the dosage we were giving her to see if that had an effect.  Our new dosage would be .3ml in the morning and then .3ml in the evening.  We had also ordered a multi-vitamin to start giving Rhythm as well.  We did that because it was a standard need for any child, but because of Rhythm's eating patterns, we wanted to make sure she was getting the vitamins she needs.

Then it happened.  They stopped.  The seizures all stopped.  The day after we started giving Rhythm the multi-vitamin along with the adjusted dosage of Haleigh's Hope, the seizures just stopped.  We were stunned.  We watched her closely, and there was no trace of the myoclonic seizures.  Days and weeks passed, and no seizures.  Along with that, we started to see better eye contact, significantly better head and neck control, and more courage to get into a crawling position.  Was this combination of Haleigh's Hope and the multi-vitamin the answer?

A closer look at the multi-vitamin may give us some insight.  Please take a minute to read this article on Vitamin B6.  Although a deficiency of Vitamin B6 can be a cause of seizures, that has never been directly linked to Rhythm's case.  However, the multi-vitamin we started giving her had 286% of the recommended dosage of B6 for a child Rhythm's age.  Could it be that a lack of Vitamin B6, or depletion of that vitamin because of the seizures, be culprits in the continuation of her seizures up until this point?

We have been diligently giving her the Haleigh's Hope and the multi-vitamin every day for over the last two months, and Rhythm has been seizure free that entire time.  Was it a miracle?  Was this the right combination we needed all along?  Was this a coincidence?  Will the seizures come back?  We don't know the answers to any of these questions.  All we know is that Rhythm has not had a seizure for over two months, and we don't ever want them to come back.

You are now caught up to Rhythm's story.  Our journey to this point has been filled with devastation, hope, discovery, fear, anxiety and anguish.  But no matter what, Rhythm has and will always have two parents and many family, friends and fans that will be giving her love, support and prayers.  They will cheer every milestone in this long road ahead.  And that's where we go next in this journey.  Catching Rhythm up to all of the joy and wonder of simple things like crawling, walking and talking.

Thank you for following her story so far.  Please share this blog with anyone you feel would be touched by this story or learn something that can help them in a situation they may be in with Epilepsy.

NEXT BLOG POST: THE FIVE THERAPIES

Trials and Tribulations

Armed with the news of her diagnosis of Petriventricular Leukomalacia (PVL) on top of the still existing Infantile Spasms, we headed home from the hospital, Sabril in hand, ready to attack the remaining Infantile Spasms and annihilate them from Rhythm's body.  It was a deflating time for us, as all we wanted for Rhythm was to see her develop and do these things that most parents get the biggest joy of seeing their child do.  Crawling, walking, eye contact, talking, eating new foods and even just making you feel like your child is reacting to your love, hugs and kisses were all missing from our lives to this point with Rhythm.

Sabril was a quick failure with Rhythm.  Not only did it increase the number of Myoclonic seizures Rhythm was having, it seemed to be undoing all of the progress that Haleigh's Hope had provided.  7 to 10 myoclonic seizures per day increased to 30-40 per day, and in clusters.  It was alarming enough that we got her right back to the neurologist and they recommended an immediate wean off the drug.  Sabril works well with many epilepsy patients, but Rhythm was proving to be quite different.


On top of the Sabril effects, sleep had also become a significant issue with Rhythm, and subsequently to her mom and dad.  She would never sleep through the night and was often up for most of it.  Deep sleep never seemed to occur.  Our neurologist mentioned another pharmaceutical called Onfi.  It was an anti-seizure medication that also should help with sleep.  We weren't excited about trying that, but much like Sabril, were willing to give a try.




During this trial with the different meds and associated issues Rhythm was dealing with, we had another appointment with a team at a children's hospital who were going to do a physical assessment of Rhythm, as opposed to the neurological ones done to date.  We weren't sure what to expect, and fresh out of the hospital, didn't want any more difficult news.  This assessment consisted of a small army of doctors and observers to review Rhythm's case, her MRI scans and also do the physical assessment.  Within minutes of interacting with Rhythm, we were told by one of the doctors that Rhythm definitely had Cerebral Palsy and Spasticity and likely was experiencing Cortical Blindness.  The hits just kept on coming.  They also brought up two potential surgeries that the neurologists may consider.


1) Vagal Nerve Stimulator - designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker.

2) Corpus Callosotomy - When performing a corpus callosotomy, the surgeon cuts the corpus callosum,  which is the large fiber bundle that connects the two sides of the brain. In contrast with lobectomy, corpus callosotomy does not involve removing any brain tissue. Instead, it usually involves cutting the front two-thirds of this bundle (a procedure called a "partial callosotomy") in the hope that the operation will markedly reduce the seizure frequency. Sometimes the other one-third is cut later ("complete callosotomy").

Neither one of those surgery options, particularly the Corpus Callosotomy, sounded like anything we wanted to go near.  Rhythm was to be assigned a team for Gait and Spasticity Disorders.  They would be working with Rhythm to see what mobility she could achieve and what therapies would be most beneficial.

We had to take stock of all of this information.  It was overwhelming, but at the same time it was comforting that we really did seem to have an army of people that wanted to help our daughter.  We just needed time to organize our thoughts and get Rhythm on the right path.



On our next neurology visit, we talked about the Cerebral Palsy diagnosis and the two recommended surgeries.  It was explained that the spectrum of Cerebral Palsy was quite vast, and that while some have limited to no mobility, others could hike and mountain climb.  We just wouldn't know for awhile with Rhythm.  The two surgeries were also quickly dismissed - not the time to consider anything invasive.  We walked out of the neurology office that day with a prescription for Onfi.  We held out hopes that Onfi would be the magic bullet for both the sleep and the seizures.

Onfi was also a quick failure.  One week in, and the exact same effects occurred as what happened with Sabril.  She was weaned off of that quickly.

So there we were.  That was now 5 pharmaceuticals that failed to stop the seizures.  Only Haleigh's Hope showed any effect.  Our neurologists at this point were concurring with us.  It was time for us to start looking deeper now into the concentration and dosage of Haleigh's Hope, and try to eliminate the irregular brain waves still appearing on her latest EEG.




If Haleigh's Hope dosing had the desired effect, we would be all in on treating Rhythm only with CBD Oil going forward. That is not the path for all children with epilepsy.  But it could be Rhythm's path.




ACCOMANYING BLOG POST: RHYTHM, THE BOOK STAR


NEXT BLOG POST: WE STOP THE SEIZURES!

Puzzle Pieces

We arrived at the hospital with Rhythm, ready to have the full picture of Rhythm's condition come into focus.  We had so many questions.  Was she still having seizures?  Was the Infantile Spasms gone?  What damage had been done?  We wanted to walk out of there knowing that the Haleigh's Hope Cannabis Oil supplement had been the magic treatment that it had appeared to be.  It got rid of those awful seizures she was experiencing before.  But about those startles she was having.....what were they?

Rhythm was in a better mood arriving at the hospital than any kid had a right to be.  This picture below was us in the waiting room before being called in for her MRI.

The MRI was stressful.  Rhythm was to be sedated, and there is always a risk that someone will not react well to sedation.  The MRI was going to give us a picture of Rhythm's brain and show us what, if any, damage existed.  They started the sedation, Rhythm was out, and then the process began.  Not as stressful as the wait.  The procedure was over in about 30 minutes, and we waited for Rhythm to come to.

We would not learn anything about the MRI for another 24 hours, so it was on to the EEG.  We were moved to the room we'd be in for the 48 hours, and waited anxiously for the EEG Tech to come in and hook up the electrodes to Rhythm's head.  Personally, I couldn't wait to see her brain waves.  What I did not want to see was something called Hypsarrhythmia, which were the abnormal brain waves indicative of epilepsy and Infantile Spasms.

Initially, Rhythm didn't mind the electrodes and the head covering put on to keep them in place.  I watched in fascination as all were put in place and the brain waves began to appear on the TV monitor, and Rhythm was all smiles.

That didn't last long.  Rhythm grew to hate everything about those electrodes, the head covering, and how ITCHY it was making her head.

We sat and watched the EEG monitor.  I knew what normal brain waves looked like.  Rhythm's brain waves did not look like them.  They had their calm readings, but a larger percentage of the brain waves showed signs of Hypsarrhythmia.  Dammit.  We sat and watched, hoping to see it calm down.  They got worse when she slept.  A definite sign of Infantile Spasms still being present.  We knew somebody was monitoring the readings, and anxiously awaited some sort of update.

We finally had our visit by the Neurologist on staff there at the hospital.  The moment of truth had arrived.  She confirmed what we were looking at was still Infantile Spasms, and those "startles" were actually Myoclonic Seizures.  The way we were made to understand it is that the Haleigh's Hope had gotten rid of most of the Infantile Spasms, but not all of it.  The Neurologist was anxious to get her on Sabril, a pharmaceutical, to attack the rest of the spasms.

Side effects of Sabril: Peripheral vision loss.  That's the only one that stuck.  There were others.  I couldn't get past this one.  Here we were again with the damn pharmaceuticals.  They had failed miserably in the Philippines.  But, getting rid of the spasms was of paramount importance.  We really had no choice but to give it a try and hope for the best.  With me personally, the leash on this medication would be short.

We asked about the MRI, but no results to report as of yet.  It turned out we would have a few extra days in the hospital so they could monitor Rhythm's progress on both the Haleigh's Hope and Sabril.

We got settled into a routine of nurse visits, watching her EEG, watching Rhythm rip the electrodes out of her head and then Rhythm screaming as the Tech put the electrodes back on.  On our third day there, the neurologist gave us an answer to a question that changed everything.  It was stated in such an offhanded way, we were taken aback.

"What can you tell us about the MRI results?"

"Oh, she has PVL.  That would explain why she can't walk and her motor skills are affected."

Wait, what??  What is PVL???  Shouldn't this have been explained a little more clearly?  She left without much clarification, as we were too stunned to know what to ask.  This was a HUGE piece to our puzzle of Rhythm's development.

PVL stands for Petriventricular Leukomalacia.  It occurs when brain cells around the lateral ventricles of the brain die, usually due to a traumatic brain injury.  Lack of oxygen to the brain at birth can cause this.  Having this diagnosis is a very strong indicator that motor skills will be affected and that Cerebral Palsy will also be a condition.

We were not taking that exchange well at all.  We spent hours researching PVL.  The spectrum was wide as to the impact of the PVL injury.  Rhythm fell right in the middle based on her current development.  While not the worst case, certainly not the best case either.  We asked a lot of clarifying questions the next day, and started to understand a little more than we did the day before in terms of detail.  It was frustrating.  Infantile Spasms was still present, she was back on a pharmaceutical and now the PVL diagnosis.

Our initial excitement of getting the whole picture about Rhythm was replaced by the reality of her uphill climb.  PVL is an injury that never heals.  The brain can rewire around it if you are young enough, but it can be catastrophic in adults.  In many cases, Rhythm's body was going to have to teach Rhythm's brain how to do things, instead of the other way around.

After 5 days in the hospital, we headed home.  Unsure of what impact Sabril may have on Rhythm and whether it was going to negate the positive effects of Haleigh's Hope.  We made new medical appointments with our neurologist and another appointment with a team that would assess Rhythm for physical issues.

The puzzle pieces had been put together.  Rhythm's traumatic premature birth had caused a brain injury called Petriventricular Leukomalacia, which directly led to her epilepsy and Infantile Spasms.  The delayed development in addition to the delayed crawling and walking all could now be explained medically.  While the diagnosis was certain, the path forward was not.  It was going to be a long road ahead.


NEXT BLOG TOPIC: TRIALS AND TRIBULATIONS

• 
  

Assessing the Damage

The initial joy of seeing those terrible seizures vanish now made way for something that was almost equally as worrisome.  How far had that year worth of Infantile Spasm related seizures set Rhythm back in terms of development and what impact had it had on her brain.  We began lining up medical appointments with neurologists, an eye doctor and with a special organization called New Jersey Early Intervention (EI).  EI would be able to provide various therapies for Rhythm such as Physical Therapy, Occupational Therapy, Feeding Therapy, Speech Therapy and a few others.

Our neurologist was a famous one here in the northeast named Doctor Orrin Devinsky.  He came highly recommended by multiple people.  We were also lucky to have met a couple named Rhiannon and Mike who were part of one of our Infantile Spasms Facebook groups.  Their daughter, Daisy, also had Infantile Spasms.  She had been through the neurology visits and worked with EI already.  They introduced us to this program that would hopefully make a huge impact to Rhythm leading a normal life.

One of the effects of Haleigh's Hope had to do with impacted sleep.  Rhythm's sleep pattern was extremely erratic, and she was still at a point where we felt like she needed to be in the bed with us.  Most nights, she wouldn't get to her deep sleep until 3:00 to 4:00 AM, sometimes later.  This began to play havoc on our nights and actually forced me onto the couch so that I could get enough sleep to be ready for work.  But if this was the price for no seizures, it was an acceptable price.

We had our assessment appointment with EI, and they confirmed that Rhythm was significantly behind in all aspects of development and would qualify for all services.  This was what we expected and we couldn't wait to get it started.  EI would also be experimenting with some adaptive equipment to help Rhythm with standing.  She didn't much like her first few sessions, but it was the best thing for her.

We began to notice a new development with Rhythm.  It was kind of like a muscle spasm one may experience if they are near sleep and then are jolted awake.  They lasted for about a second and often Rhythm would smile afterwards.  We didn't think much of them, but they happened 3-5 times a day.  We had grown so in love with the fact that her seizures were gone, that we didn't consider these to be seizures.  They looked nothing like what she had experienced before.  We were a few weeks out from her neurology appointment, so we monitored and would be prepared to discuss it.

Our first medical visit was to the eye doctor.  We had a fear that Rhythm may have had significant damage to her eyesight.  She still rarely maintained eye contact and the only stimulus she responded to was light.  The visit went well and the eye doctor confirmed her eyes were healthy.  However, he could not confirm or deny Cortical Blindness, which was neurological.  That would have to wait.

The day finally arrived where we visited the neurologist.  We not only met with the Epileptic Neurologist, Dr Devinsky, but a Pediatric Neurologist named Dr Joshi.  The visit was a fact finding affair where they got Rhythm's history, learned about the effects of Haleigh's Hope and started to determine the best way to assess the damage and her prognosis.  The method they would do this is a hospital stay with an MRI to get an image of her brain and a 48 hour monitored EEG to see her brainwave patterns.  The whole picture would finally come in to focus.

What we found out at the hospital shook us up.  It turns out Infantile Spasms and Epilepsy wasn't the only thing Rhythm was dealing with.

NEXT BLOG TOPIC: PUZZLE PIECES

A New Hope

CANNABIS OIL SAVED MY DAUGHTER'S LIFE.

I say that with conviction.  I was skeptical it was going to have an impact, but I was seriously wrong.  The changes that manifested in Rhythm were stunning.  Here is the story of Rhythm's New Hope.  It's called Haleigh's Hope, and we are grateful to the awesome people at the Flowering Hope Foundation for their guidance in it's use.

BEFORE HALEIGH'S HOPE

We were winding down our time in the Philippines.  Rhythm was off all of the prior meds until we arrived in the US.  We were extremely concerned about making the long trip from Manila to the United States.  We didn't know how Rhythm would react being on an airplane, or what we would do if a real emergency arose.  We'd be on pins and needles the whole trip.  But we knew we'd have Haleigh's Hope waiting for us.

During the time leading up to our trip, Rhythm was generally cranky a lot and we had a hard time making her smile.  She was still having 10-20 seizure clusters a day, sometimes really bad ones. The pictures below are some of the best we could get.

The flights to the US thankfully came and went without an emergency.  We arrived in Los Angeles and then made our way to Las Vegas, where we would pick up our bottle of Haleigh's Hope from our friend.  On January 5th, 2017, we gave Rhythm her first dose of Haleigh's Hope cannabis oil.

AFTER HALEIGH'S HOPE

The seizures persisted as we made our way by car and train from Las Vegas to Illinois to visit family.  On January 10th, 2017, however, an entire day passed without a seizure.  Jen and I were stunned.  It was the first day that had happened in a year.  Her mood was starting to vary a lot more as well.  She was very happy on our train ride and as we visited family.  Sadly, on January 11th, 2017, a series of horrible seizures hit three times that day.  We held out hope and persisted with the Haleigh's Hope, but I was getting worried the Haleigh's Hope was not having the desired effect. 

As it turns out, the seizures she had that day were her last.

On January 12th, 2017, we drove 17 hours from Illinois to Virginia.  Rhythm did not have a single seizure.  The next day, none.  The next few days, none.  I didn't want to outwardly say it, but it looked like something special was happening.  Weeks passed, and Rhythm not only had stopped having seizures, but was starting to re-develop with things like rolling over, eye contact and smiles and laughs.

Haleigh's Hope was the only thing we were treating her with.  This, without a doubt, was having a significant effect on Rhythm's Infantile Spasms.  Cannabis Oil was working.  Medical Marijuana was working.  The first treatment we had given her that demonstrated any impact.  But we did have a lingering question.......

IS IT LEGAL?

Let's get to the elephant in the room.  Is this legal?  Haleigh's Hope is derived from cannabis, or the marijuana plant.  Everyone is well aware of the battle in many states for legalizing medical cannabis, and it's truly an uphill battle.  26 out of the 50 states, plus Washington DC currently have some form of legalized medical cannabis.  However, it varies by state, and in some cases, it's only approved for the most catastrophic of illnesses or epilepsies.  So is what we are giving Rhythm actually legal?

Haleigh's Hope is currently available to be shipped to all 50 states.  I talked with Portia Scovern, a representative of The Flowering Hope Foundation (http://www.floweringhope.co), who provides information and support for patients using Haleigh's Hope.

Here are some excerpts from that interview:

What are the factors that allow HH to be available in all 50 states for shipping?

When the cannabis content is below .3% THC, it is then called a Hemp oil. Hemp oil is available in health food stores, Walmart, Walgreens, etc.  The difference being those local products will be from hemp seeds or industrial paste. Industrial hemp is for rope, paper, or clothing. Hemp seeds are great for shampoo, or lotion but not reproducing healthy bloodcells. True cannabis is what is needed to help your endocannabinoid system. Our cannabis is grown and watered by hand, (no automatic machinery) here in Colorado. 

What was the inception of Haleigh's Hope and some success stories?

  

Haleigh’s Hope is a high-CBD strain from Colorado named after a 4-year old with cerebral palsy and epilepsy. Her conditions were treated with an oil derived from this strain, which exhibits a CBD:THC ratio of 24:1. This low-THC, high-CBD cannabinoid profile was finally achieved after four years of crossing and selecting from hundreds of different phenotypes.  www.floweringhope.co has a long list of testimonies. We can also be seen on Vice-Weediquette, National Geographic, Fox, CNN, MSNBC, and YouTube.

What are the best contacts for people with questions or inquiries or who are scared to give this a try?

Floweringhopefoundation@gmail.com, Flowering Hope Foundation or Haleigh's Hope on facebook, 719-368-7963

Do you have any personal testimonies or messages you or any Flowering Hope team member would like to give.

I am a pain and anxiety patient. I can certainly understand the torment of social anxiety and panic attacks. I have three bulging disks in my degenerative spine but thanks to Haleigh's Hope I have been pharma free for almost 2 years. I am able to hike Colorado mountains with little to zero pain. HH prevents anxiety and stops the rare panic attacks that break through. 

ONE MONTH ON HALEIGH'S HOPE

Fast forward to one month after starting on Haleigh's Hope cannabis oil, there had been no seizures, and we were always getting pictures like these:

At the beginning of this blog, I stated that Cannabis Oil saved my daughters life.  I meant that in more ways than one.  There's the obvious horrific toll that the pharmaceuticals were taking on her body, destroying her liver and doing damage we probably weren't aware of.  We saw messages all too common of other Infantile Spasms or Epilepsy children in our support groups that had passed away,  occasionally due to reactions to the medication.  The other ways are seen above.  Happy.  Smiling.  Active.  Laughing.  It's no life to always be sedated and sad. We started to get our daughter back.

If you are interested in trying Haleigh's Hope, visit their website at https://haleighshope.com/

NEXT BLOG TOPIC: ASSESSING THE DAMAGE