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

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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


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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!




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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!



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Friday, July 14, 2017

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




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