Thursday, December 7, 2017

A Big Test Arrives for Rhythm


We are approaching five months now that Rhythm has been seizure free.  We have grown comfortable, free from the daily nerves and trepidation of seeing those damn things.  Even the mild ones or myoclonic ones were heartbreaking.  But it's been a long time since we've seen even those.




The ravaging effects of Infantile Spasms are still present with Rhythm.  She is not crawling or sitting up yet.  Walking is still far off in the distance of a developmental milestone.  She has made some progress with her vocalizations, but her communication skill set consists mainly of sound effects with her mouth and tongue.  Strangely, she has already learned how to whistle.  But she can't say mommy or daddy yet.  She can not maintain eye contact, so we are unsure if she is really seeing or reacting to us.

Despite all of that, positive signs are there.  She is crying less and laughing more.  She is noticing parts of her own body.  Her finger has discovered her nose, mouth and ears.  She can clap.  She reacts to music in a noticeable way, and in a happy way.  She can let us know when she doesn't like something.  It's obvious when she is hungry or thirsty.  And she now loves her bath!



She has four therapy session types ongoing currently - Physical, Occupational, Speech and Vision. She has a Stander now that will help her learn to be upright. But soon, Rhythm will turn 3 years old, and we need to segue from Early Intervention to preschool.  The thought of Rhythm going to preschool is both exciting and terrifying.  Part of me thinks she will advance even more, but the other part of me thinks she will cry all day and be scared.



Rhythm has a big test coming up soon.  One that will either confirm that the hyppsarhythmia in her brain is gone, and so is the Infantile Spasms.  Or one that will still come back as abnormal still and shatter our comfort.  We have a 2 day at home EEG for her scheduled that will show her brain waves for the first time since her seizures stopped.  I don't know what to expect, and I'm nervous.  We often wonder what's going on in that little head of hers.  We will soon find out.

Sunday, November 5, 2017

Epilepsy Warriors Pt 1 - Cash and Veda

One thing that has been invaluable for us as parents of a child with Infantile Spasms and PVL is Support Groups.  It is there where you know you are not alone.  It is there where others are facing the same tough decisions, heartbreaking setbacks and trials and tribulations of doing everything in our power to make the damn seizures go away.  It takes a toll on you, in all facets of your life.

We owe a lot to Support Groups.  Starting with the Philippine Cannabis Compassion Society, then to all of the Infantile Spasms, CBD and PVL Support Groups on Facebook, we have met so many kind and wonderful people and learned their stories.  In some cases, they were very much like Rhythm's.  Everyone has a unique story to tell.

Rhythm is doing good.  She is four months seizure free, still being treated by Haleigh's Hope and Child's Life Multi-Vitamin.  She is receiving Physical, Occupational, Speech and Vision therapy.  She is beginning to sound out consonants, like Mama and Baba.  Such a small thing, but such a huge thing for us.

Every so often, I want to offer this blog as a chance for others to tell their stories.  Let us know about their little Epilepsy Warriors.  Let me introduce you to two of them: Cash and Veda


Epilepsy Warrior: Cash Hunter
Story Provided by: Savannah Chantel Hunter




A little history on my son Cash.  He began having myoclonic  seizures at 3 weeks old.   After all the testing that takes place he went home on Keppra, Phenobarbital, and B6. Had to adjust the dose a bit but eventually we had control and weaned off Pheno, then B6 as he tolerated Keppra so well and we were about to start wean that until this past March, 1 year later to the day, his seizures returned. But they were different initially clonic tonic with desaturation but then he was having seizures that where the only that would happen is he'd stop breathing,  a few times his heart stopped, but then revived himself as I prepared for CPR. The doctors started him on the ketogenic diet in early June. Still continued to struggle with seizure control. Father's day weekend he had a different type of seizure where just his head dropped and he was out of it for a few seconds then fine and resumed regular activity. Wasn't overly concerned as his other seizures were so severe. Since the seizures were continuing they started him on Vimpat. Contacted our other Neuro, that we went to for a second opinion In December, she reviewed VEEG and felt he was a candidate for hemispherectomy.  Well he wasn't and he had 40 seizures in 24 hours of 3 different types.   One being infantile spasms and they believed that the spasms actually caused the apenic seizures.

Our journey since July has been rough.  They started him on Sabril first since he was still on keto and ACTH wouldn't work well with that. That successfully stopped apenic and generalized seizures but not I.S.  Then started first round ACTH.  After 1 week, I.S.  stopped but he had high blood pressure.  Weaned off after 2 weeks and I.S. returned before wean was complete.  Had him go straight to prednisolone thinking he would tolerate better with blood pressure.   Nope, not our little medical mystery, actually made it worse.  Then tried toprimate no change not even with the generalized seizures that returned.  So tried second round ACTH with 3 weeks high dose,  4 wk wean, that we're currently on.  IS have returned. Tried Depakote caused elevated heart rate.  Now trying hh 20:1.  Was having myoclonic seizures, generalized clonic tonics,  and myoclonic. Still on Keppra, vigabatrin, ACTH wean, and reintroduced Haleighs Hope.  In the past few weeks, Haleigh's Hope has stopped the clonic tonic seizures, but unfortunately is still on clonzepam prn.  The prn is as needed, but it has stopped the myoclonics and infantile spasms.



Epilepsy Warrior: Veda Salazar
Story Provided By: Sarah Salazar














I have a beautiful daughter named Veda. She was diagnosed with atypical absence seizures right after her 12 month vaccines. She had every test imaginable done to find the root cause of the issue without success. We have tried two pharmaceuticals (ethosuximide and topamax) without any success. She had all the nasty side effects and no seizure control with them. We then tried CBD, a combo of CBD, THC, AND THCA. A couple brands with no success. Finally we got her into a clinical trial in a different state  using castor bean oil to mimic the ketogenic diet. Unfortunately this didn't work either. We were running out of options.... Being a naturally minded person I wanted to not go down the pharmaceutical route again unless it was absolutely necessary. My husband and I  pushed for the ketogenic diet. This was a daunting option but felt it was the best. My daughter at one point also was thought to have Glut1 Deficiency Syndrome. The best and basically only treatment option for Glut1 is the ketogenic diet because with glut1, glucose isn't able to get to the brain. This causes impairment of motor function, seizures, developmental delays etc...

Fast forward 4 months we started her on the ketogenic diet at a 4:1 ratio and the seizures went away! This was the miracle we needed. Prior to the diet she was having up to 2,000  Petit Mal seizures a day and also atonic seizures. At this time I also saw a link between Fiji water and a decrease in seizure activity. Fiji water has naturally forming silica and also other trace minerals. The idea behind the water is it is supposed to detox aluminum from the brain, whatever the cause of her seizures I am so grateful to have her on a regimen that works and that is natural. Her body is fighting inflammation and 'healing' and I feel hopeful this will continue to work for her. She also takes cod liver oil daily and forms of magnesium.


A special Thank You to Savannah and Sarah for sharing their story so far.  My wish for them and for every parent that reads this and is going through a similar situation, is for complete and total healing of their little warriors and a life free of epilepsy.


NEXT BLOG POST: THERAPY TOYS

Tuesday, October 3, 2017

The Five Therapies and Early Intervention


An invaluable service for us has been the New Jersey Early Intervention (EI) program.  It was introduced to us by another couple whose daughter had also dealt with Infantile Spasms.  It was described to us as a service that would allow for Rhythm to receive the kind of therapy she needs to help re-teach her brain all of those things that were set behind as a result of her type of Epilepsy and associated developmental delays.


As we met with the coordinators of the EI program and learned what they would be able to do, I felt confident that Rhythm would have a great support structure going forward.  It wasn't just physical therapy to help her learn how to use her limbs and eventually crawl and walk.  It was everything else that a child does that we take for granted, like playing and eating.


Rhythm has qualified for Physical Therapy, Occupational Therapy, Vision Therapy, Speech Therapy and Feeding Therapy.  It's overwhelming, especially for Rhythm, but every day, kind and caring people are helping our daughter learn and meet milestones for development that still lay in front of her.  She has at least one therapy session a day.


Rhythm has now been nearly three months seizure free.  This has really allowed us to focus on her therapy, on teaching her things and watch as she slowly learns things on her own.  Our speech therapist has described the many sounds that Rhythm makes (raspberries, etc) as her own language.  If we notice trends and when she uses these sounds, we may begin to understand sometimes what she wants until she learns to form words.

With a lively, but non-verbal child, I often find myself wondering: What's going on inside that little head of yours, Rhythm?  It's a world I think she is trying to share with us.  We just have to be patient.


Each state has an Early Intervention Program.  If you have a child under 3 years of age, and have not heard of Early Intervention or had a chance to reach out to them yet, below is the contact information for each state in the US, along with US Territories, and a link to a website that summarizes the program.


State Coordinators for Early Intervention


List as of 9/14/2017

Alabama


Alaska


American Samoa

  • Ruth Te'o, Acting Part C Coordinator
  • Department of Health
  • Helping Hands Early Intervention Program
  • Early Hearing Detection and Intervention
  • PO Box 7477
  • Pago Pago, AS 96799
  • Phone: (684) 699-4987
  • Fax: (684) 699-4985
  • Email: rteo@doh.as
  • Website: http://www.helpinghands-as.org/index.html

Arizona


Arkansas


Bureau of Indian Education

  • Sue Bement, Acting Supervisory Ed Specialist, Early Childhood
  • Division of Performance and Accountability
  • Bureau of Indian Education/Albuquerque Service Center
  • 1011 Indian School Road, NW, Suite 332
  • Albuquerque, NM 87104
  • Phone: (505) 563-5274
  • Fax: (505) 563-5281
  • Email: sue.bement@bie.edu
  • Website: http://www.bie.edu/
  • ReferPhone: See regional phone numbers at the Referral Website
  • ReferWebsite: http://www.ectacenter.org/topics/bie/biecontacts.asp

California


Colorado


Connecticut


Delaware


Department of Defense


District of Columbia


Florida


Georgia


Guam


Hawaii

  • Charlene Robles, EIS Supervisor/Part C Coordinator
  • Department of Health
  • Early Intervention Section
  • 1350 South King Street, Suite 200
  • Honolulu, HI 96814
  • Phone: (808) 594-0007
  • Fax: (808) 594-0015
  • Email: charlene.robles@doh.hawaii.gov
  • Website: http://health.hawaii.gov/eis/
  • ReferPhone: (808) 594-0066 (for Oahu or 1-800-235-5477 for Neighbor Islands)

Idaho

  • Christy Cronheim, Program Manager
  • Children's Developmental Services
  • State Department of Health and Welfare
  • 450 West State Street, 5th Floor
  • PO Box 83720
  • Boise, ID 83720-0036
  • Phone: (208) 334-5590
  • AltPhone1: (800) 926-2588
  • AltPhone2: (208) 332-7205 (TTY)
  • Fax: (208) 332-7330
  • Email: cronheic@dhw.idaho.gov
  • Website: http://healthandwelfare.idaho.gov/default.aspx?TabId=78
  • ReferPhone: (208) 334-6530

Illinois


Indiana


Iowa


Kansas


Kentucky


Louisiana


Maine


Maryland


Massachusetts


Michigan


Minnesota


Mississippi


Missouri


Montana


Nebraska

  • Julie Docter, Part C Co-Coordinator
  • School Based Services/Early Development Network
  • DHHS - Medicaid & Long-Term Care
  • 301 Centennial Mall South, 5
  • P.O. Box 95026
  • Lincoln, NE 68509-5026
  • Phone: (402) 471-1733
  • Fax: (402) 471-9092
  • Email: Julie.Docter@nebraska.gov
  • Website: http://edn.ne.gov/cms/

Nevada


New Hampshire


New Jersey


New Mexico


New York


North Carolina


North Dakota


Northern Mariana Islands


Ohio


Oklahoma


Oregon


Pennsylvania


Puerto Rico


Rhode Island


South Carolina


South Dakota


Tennessee


Texas


Utah


Vermont


Virgin Islands


Virginia


Washington


West Virginia


Wisconsin


Wyoming

Tuesday, September 5, 2017

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


Monday, August 14, 2017

Rhythm, the Book Star


I am a Children's book author, with 5 books now available on Amazon.  The stars of my books are my children, and I can't think of any other thing that would inspire me more than them.

On August 15th, 2017, my second book starring Rhythm will be released called Rhythm's Fantastic Friends! and it is dedicated to people that have and are making a difference in Rhythm's life.




I wrote my first book starring Rhythm back in 2016 prior to her Infantile Spasms diagnosis.  The book, The World of Rhythm, imagined her as a 4 year old little girl who knew how to play a lot of musical instruments.  It was a simple book to teach children about the different types of instruments and the sounds they made, which they could hear on my website.






We had none of that stress of Epilepsy concerning us as we thought of Rhythm's development as she grew up.  We expected her to be like any other little kid and do all the things that kids her age do. Not long after the book's release, she received her diagnosis, and my blog posts now are telling that true to life story, which stood to contradict those things we imagined for her in The World of Rhythm.

As I approached writing Rhythm's Fantastic Friends!, the book became influenced in certain ways by her Epilepsy.  I had to make that choice of continuing to think positively and imagine her as a normal child and doing things that normal children do, or do I make it all about her Epilepsy?

I decided to blend it.  Rhythm's Fantastic Friends! spotlights people in various occupations that are a part of a child's life, sometimes big, sometimes small.  Examples I included were School Bus Drivers, Librarians, Optometrists, Policemen, Firemen and Teachers.  However, there were a few occupations I chose that relate to Rhythm's condition.

Therapist - an important part of Rhythm's life in particular, as she is receiving Physical and Occupational Therapy to help her learn to crawl, sit, walk and play.



Doctor - illustrated to show Dr Orrin Devinsky, her real life neurologist.



Pastor - an occupation in both the Philippines and The United States that have been very active in praying for Rhythm's healing from Epilepsy.

















I want Rhythm to be an inspiration to children and parents who face difficulties in early life and face unfair obstacles to a happy and healthy childhood.  I will always imagine Rhythm doing the things that she does in her books.  However, maybe in her next book, I will deal with her Epilepsy head on, and create something that children all over the world with Epilepsy and their parents can have something that deals with it in realistic terms, but provides unwavering hope.

Rhythm's books are available on Amazon sites worldwide, and all of the links to those Amazon sites are available on my website - www.patrickadamsbooks.com.

Thank you for following Rhythm's story.

NEXT BLOG POST: WE STOP THE SEIZURES!




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 Stimulatordesigned 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 CallosotomyWhen 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!