Tag Archives: health care

Exempt CBD from Canadian Excise Tax

ExciseTAxAs currently proposed, the Canadian Cannabis Excise Tax will create an excessive economic burden on many sick and disabled Canadians. In many cases, it will add an additional $1000 or year or more to the existing federal taxes. The stated rationale for this tax is that recreational users may claim to be medical users in order to avoid the excise tax on recreational marijuana. This rationale, however, cannot be appropriately applied to Cannabidiol (CBD) oil, because CBD is not psychotropic, and CBD oil has no potential for recreational use. Therefore, adding an excise tax to CBD oils that contain only small amounts of THC, serves no purpose other than to create an additional financial burden of sick and disabled Canadians.

If you agree, please e-mail the Department of Finance Canada at fin.cannabis-taxation-cannabis.fin@canada.ca and tell them:

Exempt CBD oils that contain less than 3mg/ml of THC from the Canadian Cannabis Excise Tax. Taxing Low-THC CBD oils is unfair and unnecessary.

The Department of Finance will accept comments on the proposed tax until 7 December 2017 and you can view the entire proposal here: http://www.fin.gc.ca/n17/data/17-114_1-eng.asp

Let the Canadian Department of Finance know what you think about the proposed excise tax. Feel free to quote or draw on any part of this blog post, if that is helpful. Also feel free to share this post with anyone who may be interested.

For more details on why CBD should be exempted, see below:

About me I want to be clear about the fact that I have a personal stake in this matter. Our son’s doctor has prescribed CBD oil to help manage intractable epilepsy Continue reading

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MRIs in MECP2 Duplication Syndrome

MRIThis post provides some information on MRI findings in MECP2 duplication syndrome. It is based mostly on one study by French researchers (El Chehadeh, S., Faivre, L, Mosca-Boidron , et al. 2016)

The study included findings from MRI brain scans from 30 individuals with MECP2 duplication syndrome. The sample included males and females from under one year old to 49 years old. The MECP2 duplications included short and long duplications, duplications on the X chromosome and translocations to other chromosomes. The study was designed to determine if other specific genes included in the duplicated material influenced the observed MRI findings, however, no systematic differences were found. There was some limited evidence of increased atrophy of some structures over time.

The researchers reported that 93% of the individuals studied had significant abnormal findings. Some of the most common findings included

abnormalities or underdevelopment of the corpus callosum (67% of individuals) The corpus callosum is the main connection between the right and left side of the brain. It was frequently described as poorly developed, thin, or missing.

reduced white matter volume (40% of individuals) White matter comprises the area of the brain where most connections are made.

ventricular dilatation (30% of individuals) The ventricles are hollow spaces in the brain that contain fluid

Half of the individuals studied were epileptic and almost all of those had poorly controlled seizures. There was no clear difference in brain structures  and presence or absence of seizures.

Some previous studies have reported similar findings.

One interesting finding was on head circumference. Most individuals were within normal limits, but there were some in the microcephalic range and others in the macrocephalic range.

Reference

El Chehadeh, S., Faivre, L, Mosca-Boidron , et al. (2016). A.Large national series of patients with Xq28 duplication involving MECP2: Delineation of brain MRI abnormalities in 30 affected patients. American Journal of Medical Genetics, Part A, 170A(1):116-29. doi: 10.1002/ajmg.a.37384.

Aspiration Pneumonia: Dysphagia versus Gastro-Esophageal Reflux

lightbulbLet me start by admitting that this post is partially just a theory on my part. So, let me start out by separating what we know from what I thank might be the case. Here is what we know:

• Many individuals with MECP2 duplication suffer from frequent, prolonged, and often severe bouts of pneumonia.

• Many of these same individuals have dysphagia (swallowing difficulties) including increased risk of food or fluid particles entering the airway.

• In at least some cases, food and fluid entering the lungs causes or contributes to these bouts of pneumonia.

• Many individuals with MECP2 duplication experience gastroesophageal reflux.

• Gastroesophageal reflux can also cause or contribute to aspiration pneumonia.

Now, here is my theory: While the issue of dysphagia (swallowing problems) has been the focus of managing aspiration pneumonia in individuals with MECP2 duplication syndrome, gastroesophageal  reflux may be responsible for as much or more of this problem. Continue reading

Drooling: Pros & Cons of Treatment

CAUTION2Many children and adults with MECP2 duplication syndrome experience excessive drooling. Some are treated medically to reduce this problem. This post discusses some of the pros and cons of medical treatment for drooling. Ptyalism and sialorrhea are medical terms that are medical terms that are sometimes used as synonyms for drooling although their precise definitions may differ slightly.

What causes drooling? There are two major Continue reading

Some thoughts on preventing pneumonia

pneumonia1I need to start with two disclaimers on this post. (1) This is not intended as medical advice. (2) Every individual with MECP2 Duplication Syndrome is different. Taken together this means these considerations are intended to suggest topics that families may discuss with their health care providers in order to determine IF and HOW they may apply to their child.

Children and adults with MECP2 Duplication Syndrome are always at increased risk for respiratory infections, but lately it has been particularly troubling to hear how many have been experiencing severe illnesses. It is important for parents to understand that some of this is beyond our control, no matter what we do to try to prevent it. But here are some things that might help at least a little.

Immunizations: Unless Continue reading

Skin Condition Survey 1: Results

checkboxThis is a summary of the results of part 1 of the Skin Conditions Survey.This survey was based previous statements and concerns raised by family members. It is not intended as scientific research but may be helpful to researchers and clinicians in helping to identify areas to explore.

Surveys were completed for 47 individuals with MECP2 Duplication Syndrome from 10 different countries (2 of the 47 were from unidentified countries). Continue reading

Sepsis, Septicemia, SIRS, and Septic Shock

This possepsist is not intended as medical advice, but it may suggest a topic to discuss with your child’s or loved one’s doctor. Sepsis is a difficult topic and the content may be disturbing to some readers. It is potentially life-threatening and there are no guaranteed ways of preventing or treating it, but the more that families know about sepsis, the better they can protect their family members, particularly those with MECP2 Duplication Syndrome.

September 13, 2015 is World Sepsis Day, but protecting individuals with MECP2 Duplication Syndrome from sepsis is something we need to think about every day.

What is Sepsis?

Sepsis is a condition caused by the body’s inflammatory response to an infection. Continue reading

MECP2 Duplication Syndrome, Pain, and the Least Dangerous Assumption

trap-33819_640New research from China suggests that MECP2 duplication syndrome may result in reduced pain responses. This will not come as a surprise to parents, health care professionals, or others with considerable experience with children and adults with MECP2 duplication syndrome. Many individuals with MECP2 duplication appear quite stoical when experiencing things that would cause considerable pain to other people.

This study by Zhang and colleagues came out a couple of weeks ago. It is an important topic and a good study. Since it is published in an open access journal anyone with access to the internet can read the study. Nevertheless, it is important to interpret and read this study with caution. Continue reading

New Research on the Immune System in MECP2 Duplication Syndrome

clinImmBauer, M. et al. (2015). Infectious and Immunologic Phenotype of MECP2  Duplication Syndrome, Journal of Clinical Immunology, DOI 10.1007/s10875-015-0129-5

Back in July 2012, a previous post on this blog discussed  a German research project on pneumonia in MECP2 Duplication Syndrome ed by Michael Bauer. Some of your children may have participated in the study. Now, the results of this study have been published and they are quite interesting.  Continue reading

Swallowing & Aspiration 101

CAUTION2Many of the individuals, especially infants and young children, with MECP2 Duplication Syndrome have problems with eating and drinking. These problems most frequently stem from low muscle tone and weak reflexes. One serious problem that can result from these issues is the aspiration of food particles of liquids into the lungs. Continue reading