Wednesday, September 11, 2019

An open letter to DSHS regarding tcup program.


Dear Governor Abbot and Dr. Hellerstedt,

I am a pediatric neurologist and epilepsy specialist practicing in Houston. I have experience with the TCUP for over 1 year and manage over 80 patients on cannabanoids (including Epidiolex). I am also a parent of a child with a neurogenetic disorder.

Today the DSHS will take public comment on a puzzling list of selected conditions where medical cannabis may be allowed in Texas.

While well-intentioned, the "list" appears to be far from ready to deploy. 
  •  Many illnesses are inexplicably omitted. One glaring omission in my 1 minute review is  ataxias. What is the evidentiary basis for inclusion the list?
  • Pediatric illnesses such as SMA and muscular dystrophies are listed under "Incurable Neurodegenerative Diseases with Adult Onset". Does the adult-pediatric division on the list imply that people with SMA (a pediatric illness) cannot get CBD until they are adults?  The distinction makes no biologic sense.
  • The specificity of this list is problematic. The era of genetic sequencing has opened our eyes to thousands of low denominator disorders that are progressive and incurable.  New conditions are genetically defined rapidly with daily changes. How often will DSHS update this list to keep pace? 
  • Many progressive degenerative disorders are still NOT diagnosed at a level of specificity demanded here.  For instance, people can have a leukodystrophy without a specific diagnosis.   There is no test for these conditions that, in sum, are not rare. If doctors cannot come to a genetic diagnosis, are patients not allowed to seek relief ? Do you really want to commit staff to review charts or trust the doctors?
  • The decision to treat should be one between a doctor and patient.  Conceptually, one wonders why DSHS is deciding that a person with Refsum disease is meritorious but not one with Rett Syndrome? 
Ultimately,  from a policy perspective the list will usher a blizzard of “what about me” requests and an understandable outpouring of accusations of arbitrary insensitivity.

Further, the list is an assault on the practice of medicine. Physicians can prescribe narcotics, chemotherapy and many other toxic agent. But, it seems odd that government will decide who has an incurable neurodegenerative disorder?

Perhaps the list should include a general statement allowing a physician to decide e.g. “All Other neurologic disorders of  genetic, inflammatory, oncologic, metabolic, vascular and/ or idiopathic etiology”? 

Dr. Rotenberg 

Tuesday, September 10, 2019

Texas Medical Cannabis - Does Your illness Qualify? The DSHS will decide.

What are Incurable Neurodegenerative Diseases? 


The DSHS will decide if you or your loved one's illness is important enough to qualify for medical cannabis. DSHS will decide if the condition incurable enough or degenerative enough.  Wow. 

Contact your legislator and governor. JR


Here is a link to the proposed rule 

https://www.dshs.state.tx.us/features/HB3703/proposed-rule.pdf



Notice of Public Hearing - Implementation of House Bill 3703

Proposed New Rule Relating to Designating Incurable Neurodegenerative Diseases

The Department of State Health Services (DSHS) will hold a public hearing to accept public comments on the proposed new rules to implement House Bill 3703, relating to designating incurable neurodegenerative diseases.
The public hearing will be from 1:00 p.m. to 3:00 p.m. on September 11, 2019, in the Moreton Building, Room M-100, Department of State Health Services, 1100 West 49th Street, Austin, Texas 78756. If the time allotted does not accommodate the number of persons who register to speak on or before 3:00 p.m., DSHS will extend the public hearing to accommodate those registrants, however, that extension will only be until 5:00 p.m. on that date. 
The public hearing will be structured for the receipt of oral or written comments by interested persons. Individuals may present oral statements when called upon in order of registration. There will be no open discussion during the public hearing. Comment time for each individual will be determined by the total number of persons registered to speak in the time allotted.  If time permits, comments will be limited to 3 minutes per speaker but may be further limited by DSHS if more registrants need to be accommodated.

Saturday, September 07, 2019

Trans Cranial Electric Stimulation Tdcs Literature Library

Tdcs  involves the cortex and subcortical networks 

TDCS Article Library

 Often, patients ask me for the latest literature on transcranial direct stimulation.

 Here are links to my library of abstracts from PUBMED at the National Library of Medicine

 I update the site from time to time so please check back.

Dr Josh

Basics - https://en.wikipedia.org/wiki/Transcranial_direct-current_stimulation


Ataxia - LINK to articles on TDCS and ataxia

Autism - LINK to articles on autism and TDCS TES

Brain Injury - LINK to Brain Injury

Cerebral Palsy - LINK to CP Articles

Monday, August 19, 2019

TransCranial Electrical Stimulation - tDCS tACS - What is it?

What is Transcranial Direct Current Stimulation (tDCS)?

Transcranial direct current stimulation (tDCS), is a non-invasive, painless brain stimulation treatment that uses direct electrical currents to stimulate specific parts of the brain.

The therapy works by delivering a low intensity electrical current to part of the brain responsible for abnormal pain sensation. This constant, low intensity current is passed through two electrodes placed over the head which modulates neuronal activity.
The treatment is not surgical and drug free. 
There are two types of stimulation with tDCS: anodal and cathodal stimulation. Anodal stimulation acts to excite neuronal activity while cathodal stimulation inhibits or reduces neuronal activity.

Is Transcranial Direct Current Stimulation (tDCS) Effective?

Recent studies support a therapeutic potential of tDCS in patients with:
  • Ataxia
  • Fibomyalgia
  • Dysautonomia
  • Brain injury
  • Disorders of Consciousness
  • Migraine
  • Dyslexia
  • Spasticity
  • Cerebral Palsy

Chronic neuropathic pain, Parkinson, stroke recovery, tinnitus (ringing in the ears), traumatic spinal cord injury, depression and other illnesses.
TES treatments are complementary - that is they are used after standard therapies have failed.
 tDCS devices have not been approved by the FDA for this application.
Although tDCS is still an evolving form of brain stimulation, it potentially has several advantages over other brain stimulation techniques. It is cheap, non-invasive, painless and safe. It is also easy to administer and the equipment is easily portable.


Thursday, August 15, 2019

Low THC CBD now available in Texas for more conditions.

Low-THC CBD has arrived for more conditions. 

Important news for people and families living with: 
  • Autism
  • Spasticity
  • Epilepsy
  • ALS
  • MS 
The Texas Legislature recently enacted HB 3703  providing additional medical conditions for which low-THC cannabis may be prescribed and increasing the respective specialties in which prescribing physicians may practice.

The Compassionate Use Registry of Texas (CURT) has undergone the modifications necessary to allow prescriptions for the additional medical conditions. 

Autism and spasticity are among these indications.  ANY patient with epilepsy or seizures may be considered.

Dr. Rotenberg is registered with TCUP and I have extensive experience with these agents in children with epilepsy.

If you are interested in learning more. Please speak to Kara Schmidt PA or to me at the next visit.

Dr. Rotenberg

Board Certified in Epilepsy, Brain Injury and Sleep Medicine

Tuesday, May 07, 2019

Medical Cannabis - CBD in Texas goes to the Senate After HB 1365 Passes House

Might Low THC cannabis help someone you love with  medical conditions like cancer, autism, PTSD, Alzheimer’s, Parkinson’s, Huntington’s, Tourettes, Crohn’s, multiple sclerosis and muscular dystrophy? 

Call your Texas senator, LtGovernor, Governor to express your opinion. - JR


By Natalie Hee, FOX 26 News
Posted May 07 2019 11:17AM CDTVideo Posted May 06 2019 10:23PM CDT Updated May 07 2019 11:28AM CDT

HOUSTON (FOX 26) - A rare type of epilepsy is the only way medical cannabis is prescribed in the state. One Houston family says it saved their daughter’s life and now they’re pushing for a bill to help people with other types of conditions.

Lora Taylor says her 37-year-old daughter, Julie, has intractable epilepsy and used to have an average of up to 95 seizures a month. Julie has tried 26 of the 28 medications suitable for her condition. Her options seemed to be running thin until she was prescribed CBD oil by her pediatric neurologist in September.

“I had never seen anything work that well, that effectively in really in 36 years. Most of her seizures were anywhere from 3 to 25 minutes. But after the first 30 days using the CBD oil, that was reduced to two 10-second seizures,” Taylor said.

Over the last eight months, Taylor said there's been dramatic improvement in the frequency and severity of Julie's seizures. She says not only has her mobility improved, Julie’s now able to sleep through the night.

“She used to not be able to move her arms or put her arms down at all,” Taylor said.

Julie's rare form of epilepsy is currently one of the only qualifying types of debilitating medical conditions eligible for medical cannabis under state law.

House Bill 1365, authored by Representative Eddie Lucio, would expand eligibility to include patients with other debilitating medical conditions like cancer, autism, PTSD, Alzheimer’s, Parkinson’s, Huntington’s, Tourettes, Crohn’s, multiple sclerosis and muscular dystrophy. The bill would also establish a Cannabis research program and review board.

Dr Joshua Rotenberg, a pediatric neurologist who specializes in epilepsy, said the low-THC cannabis isn't a one-size-fits-all answer for these conditions. He said the success rate can vary from patient to patient but rather, it's having the option available for families like the Taylors who feel like they're running out of time.

“Instead of being hung up about the diagnoses, it opens it up for discussion and application,” Dr. Rotenberg said.

HB 1365 was voted and approved by the House Monday. The bill will head to the Senate next for consideration.



VIDEO HERE

Saturday, April 06, 2019

Treatment for Ataxia - TDCS

A treatment where there are none. JR


Cerebello-spinal tDCS in ataxia

A randomized, double-blind, sham-controlled, crossover trial

https://n.neurology.org/content/91/12/e1090

Conclusions A 2-week treatment with cerebello-spinal tDCS reduces symptoms in patients with ataxia and restores motor cortex inhibition exerted by cerebellar structures. Cerebello-spinal tDCS might represent a promising future therapeutic and rehabilitative approach in patients with neurodegenerative ataxia, still an orphan disorder of any pharmacologic intervention.

https://n.neurology.org/content/91/12/e1090

Friday, March 29, 2019

Cannabinoids and Sleep. What is the data?

A working list of  published TRIALS in peer reviewed publications related to cannabinoids /  CBD and insomnia

There are no FDA approved medications for insomnia in children. 

1 trial in clonidine  for autism and one for ADHD.

While I am not advocating CBD for every child with ADHD, I am linking   ONE relevant clinical article supporting the widespread use of CLONIDINE. its hardly a rich database of clinical data. 

Dr Josh 



Cannabidiol and Sleep



Barchel D, Stolar O, De-Haan T, Ziv-Baran T, Saban N, Fuchs DO, Koren G, Berkovitch M.
Front Pharmacol. 2019 Jan 9;9:1521. doi: 10.3389/fphar.2018.01521. eCollection 2018.
PMID:
 
30687090
 
Free PMC Article
2. 



Shannon S, Lewis N, Lee H, Hughes S.
Perm J. 2019;23:18-041. doi: 10.7812/TPP/18-041.
PMID:
 
30624194
 



4.  2018 Aug;33(9):565-571. doi: 10.1177/0883073818773028. Epub 2018 May 16.

Medical Cannabis for Pediatric Moderate to Severe Complex Motor Disorders.

Abstract

A complex motor disorder is a combination of various types of abnormal movements that are associated with impaired quality of life (QOL). Current therapeutic options are limited. We studied the efficacy, safety, and tolerability of medical cannabis in children with complex motor disorder. This pilot study was approved by the institutional ethics committee. Two products of cannabidiol (CBD) enriched 5% oil formulation of cannabis were compared: one with 0.25% δ-9-tetrahydrocannabinol (THC) 20:1 group, the other with 0.83% THC 6:1 group. Patients aged 1 to 17 years (n = 25) with complex motor disorder were enrolled. The assigned medication was administered for 5 months. Significant improvement in spasticity and dystonia, sleep difficulties, pain severity, and QOL was observed in the total study cohort, regardless of treatment assignment. Adverse effects were rare and included worsening of seizures in 2 patients, behavioral changes in 2 and somnolence in 1.

KEYWORDS:

CBD; THC; cannabis; cerebral palsy; dystonia; movement disorders; spasticity
PMID:
 
29766748
 
DOI:
 
10.1177/0883073818773028
6.
Autism and Sleep


Mazzone L, Postorino V, Siracusano M, Riccioni A, Curatolo P.
J Clin Med. 2018 May 3;7(5). pii: E102. doi: 10.3390/jcm7050102. Review.
PMID:
 
29751511
 
Free PMC Article
7.
Johnson CR, Smith T, DeMand A, Lecavalier L, Evans V, Gurka M, Swiezy N, Bearss K, Scahill L.
Sleep Med. 2018 Apr;44:61-66. doi: 10.1016/j.sleep.2018.01.008. Epub 2018 Feb 1.
PMID:
 
29530371
8.
Köse S, Yılmaz H, Ocakoğlu FT, Özbaran NB.
Sleep Med. 2017 Dec;40:69-77. doi: 10.1016/j.sleep.2017.09.021. Epub 2017 Oct 13.
PMID:
 
29221782
9.
Moore M, Evans V, Hanvey G, Johnson C.
Children (Basel). 2017 Aug 8;4(8). pii: E72. doi: 10.3390/children4080072. Review.
PMID:
 
28786962
 
Free PMC Article
10.
Souders MC, Zavodny S, Eriksen W, Sinko R, Connell J, Kerns C, Schaaf R, Pinto-Martin J.
Curr Psychiatry Rep. 2017 Jun;19(6):34. doi: 10.1007/s11920-017-0782-x. Review.
PMID:
 
28502070
 
Free PMC Article
11.
Malow BA, Katz T, Reynolds AM, Shui A, Carno M, Connolly HV, Coury D, Bennett AE.
Pediatrics. 2016 Feb;137 Suppl 2:S98-S104. doi: 10.1542/peds.2015-2851H.
PMID:
 
26908483
 
Free Article
12.
Yang Z, Matsumoto A, Nakayama K, Jimbo EF, Kojima K, Nagata K, Iwamoto S, Yamagata T.
Brain Dev. 2016 Jan;38(1):91-9. doi: 10.1016/j.braindev.2015.04.006. Epub 2015 May 6.
PMID:
 
25957987
 2014 Apr;15(4):472-5. doi: 10.1016/j.sleep.2013.10.018. Epub 2014 Feb 7.

Use of sleep medication in children with ADHD.

Abstract

OBJECTIVE:

Sleep problems are common in children with attention-deficit/hyperactivity disorder (ADHD), yet little is known about sleep medication use in this population. The aim of this study was to describe sleep medication use, as well as associated child and family characteristics in school-aged children with ADHD.

METHOD:

Sleep medication use was ascertained using a prospective parent-completed seven-night sleep and medication log. Exposure variables included socio-demographic characteristics, total sleep problem severity (Children's Sleep Habits Questionnaire), ADHD severity and subtype (ADHD Rating Scale IV), ADHD medication use, internalising and externalising co-morbidities (Anxiety Disorders Interview Schedule for Children/Parent version IV) and parent mental health (Depression Anxiety Stress Scale).

RESULTS:

Two hundred and fifty-seven children with ADHD participated and of these 57 (22%) were taking sleep medication (melatonin 14% and clonidine 9%). Sleep medication use was associated with combined-type ADHD and ADHD medication use. The presence of co-occurring internalising and externalising co-morbidities was also associated with sleep medication use in ad hoc analyses.

CONCLUSION:

Sleep medication use is common in children with ADHD and is associated with combined-type ADHD and use of ADHD medication. Further research is needed on the broad functional benefits and long-term safety of sleep medication in this population.

KEYWORDS:

Attention deficit hyperactivity disorder; Child; Medication therapy management; Melatonin; SleepSleep initiation and maintenance disorders

Sunday, March 17, 2019

Vayarin, Vayarin Plus, Vayacog - Vaya ConDios! No More Medical Food for ADHD !


Vayarin Vayacog and VayaPlus are not available in the USA anymore. 

I have emailed my unhappiness with this sudden news. I find it beyond callous to drop people (especially children) without alternatives.

I have no idea what can replace these products! I will start looking. 

Dr. Josh


IFF (@iff) owns Frutarom that owns Enzymotec that owns Vayarin.

Mr. Yehudai owns Frutarom.Vayarin Frutarom owner link

https://ir.iff.com/corporate-governance/management

https://www.iff.com/en/taste/frutarom

Dr. Josh



https://vayadirect.com/

Friday, March 08, 2019

Autism & Cannabidiol Treatment Trial - What is the evidence?

Interesting - 53 kids & 68% improved in self-injury !

Oral Cannabidiol Use in Children With Autism Spectrum Disorder to Treat Related Symptoms and Co-morbidities.

Barchel D, et al. Front Pharmacol. 2018.

Abstract

OBJECTIVE: Children with autism spectrum disorder (ASD) commonly exhibit comorbid symptoms such as aggression, hyperactivity and anxiety. Several studies are being conducted worldwide on cannabidiol use in ASD; however, these studies are still ongoing, and data on the effects of its use is very limited. In this study we aimed to report the experience of parents who administer, under supervision, oral cannabinoids to their children with ASD.

METHODSAfter obtaining a license from the Israeli Ministry of Health, parents of children with ASD were instructed by a nurse practitioner how to administer oral drops of cannabidiol oil. Information on co-morbid symptoms and safety was prospectively recorded biweekly during follow-up interviews. An independent group of specialists analyzed these data for changes in ASD symptoms and drug safety.

RESULTS: 53 children at a median age of 11 (4-22) year received cannabidiol for a median duration of 66 days
 (30-588). 

Self-injury and rage attacks (n = 34) improved in 67.6% and worsened in 8.8%. 
Hyperactivity symptoms (n = 38) improved in 68.4%, did not change in 28.9% and worsened in 2.6%. Sleep problems (n = 21) improved in 71.4% and worsened in 4.7%. 
Anxiety (n = 17) improved in 47.1% and worsened in 23.5%. 
Adverse effects, mostly somnolence and change in appetite were mild
.
CONCLUSION: Parents' reports suggest that cannabidiol may improve ASD comorbidity symptoms;

 however, the long-term effects should be evaluated in large scale studies.

Tuesday, March 05, 2019

PANDAS PANS Strep and REM Sleep Disorder


Fascinating. REM sleep disorder seen in 87% of patients with PANS. PSG may be helpful in PANDAS / PANS. Note this is a case series. -JR


" RBD has been reported to occur only rarely in children. However, in this consecutive case series of 15 children with PANS, we observed 4 children (27%) met RBD criteria and noted evidence of REM sleep motor disinhibition in 8 others (53%). Only two patients (13%) had a normal PSG, and PANS symptoms had remitted for one of those children."

Rapid Eye Movement Sleep Abnormalities in Children with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS)

BRIEF SUMMARY

Current Knowledge/Study Rationale: REM sleep behavior disorder (RBD) has been demonstrated across all ages, but has been reported to occur only rarely in childhood. Among adults, RBD is associated with neurodegenerative conditions; its significance in pediatric patient populations is unknown. Demonstrating abnormalities of sleep architecture in children with PANS may provide additional insights into the etiopathogenesis of the neuropsychiatric syndrome.
Study Impact: This case series reports on sleep-related motor disturbances among children with PANS, particularly in the REM state. Pediatric RBD is likely not generated by the same mechanisms that often predict the onset of a neurodegenerative disorder among adults, and may instead be a useful marker of transient central nervous system disturbance in select cohorts.

ARTICLE Here

Monday, March 04, 2019

Indica vs. Sativa - Are they different? Not consistently.

I often hear claims that there is a consistent CHEMICAL difference between indica vs sativa. That is, there are terpenes that have different psychoactive effects.

While particular products in certain areas, may be different in CHEMOTYPE (terpenes, essential oils etc.) . It appears that there i NO consistent chemical difference.




Webinar from U of Vt.

Monique McHenry, PhD is a botanist with a background in plant diversity and evolution. She is the co-director of the cannabis pharmacology course at the University of Vermont Medical School. She is also Co-Founder of the Phytoscience Institute, a plant-based pharmaceutical research center. Dr. McHenry completed her BA and MSc at the University of Colorado, and her PhD at the University of Vermont.

Sunday, March 03, 2019

Autism & Sleep and ADD Anxiety Behavior Elopement Social Skills


There is #NoZZZinAutism ! 

 2018 May 3;7(5). pii: E102. doi: 10.3390/jcm7050102.

An external file that holds a picture, illustration, etc.
Object name is jcm-07-00102-g001.jpgThe Relationship between Sleep Problems, Neurobiological Alterations, Core Symptoms of Autism Spectrum Disorder, and Psychiatric Comorbidities.

Abstract

Children with Autism Spectrum Disorder (ASD) are at an increased risk for sleep disturbances, and studies indicate that between 50 and 80% of children with ASD experience sleep problems. These problems increase parental stress and adversely affect family quality of life. Studies have also suggested that sleep disturbances may increase behavioral problems in this clinical population. Although understanding the causes of sleep disorders in ASD is a clinical priority, the causal relationship between these two conditions remains unclear. Given the complex nature of ASD, the etiology of sleep problems in this clinical population is probably multi-factorial. In this overview, we discuss in detail three possible etiological explanations of sleep problems in ASD that can all contribute to the high rate of these symptoms in ASD. Specifically, we examine how neurobiological alterations, genetic mutations, and disrupted sleep architecture can cause sleep problems in individuals with ASD. We also discuss how sleep problems may be a direct result of core symptoms of ASD. Finally, a detailed examination of the relationship between sleep problems and associated clinical features and psychiatric comorbidities in individuals with ASD is described.

Insomnia and Autism How and Why ?

Why is the assessment of sleep important in children with autism?

Assessment of Sleep in Children with Autism Spectrum Disorder

Paul R. Carney, Academic Editor and James D. Geyer, Academic Editor
....
The importance of properly assessing children with ASD for sleep disorders cannot be overstated, as inadequate sleep can have detrimental effects on memory, attention, cognition, daytime behavior, and even language acquisition [,,,,].

 Additional reports suggest that chronic sleep disturbance increases the risk of physical health problems, including changes in cardiovascular, immune, endocrine, nervous system function, and, for children with ASD in particular, increased weight status and poorer overall health-related quality of life [,,,]. 

Furthermore, chronic sleep disturbances experienced by children with ASD are less likely to remit with age, and continue even into adulthood [,,]. T

herefore, early identification and intervention may help to offset some of the potentially detrimental effects that may occur secondary to prolonged sleep inadequacy.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5575594/