Category Archives: health

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

Advertisements

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.

Drop Seizure or Drop Seizure???

SeizureDrop seizures are extremely common among individuals with MECP2 duplication syndrome. There is a sudden loss of muscle tone, and if the individual is not supported, he or she drops suddenly to floor, sometimes resulting in injury. Usually these are brief and it is over in a second, but sometimes they come in clusters.

While these drops are certainly one of the most, if not the absolute most, common seizures in MECP2 duplication syndrome, there are actually two kinds of “drops” that look pretty much the same, but are fundamentally very different. It is hard to tell them apart, and at least some individuals with MECP2 duplication syndrome, have both kinds. It may be helpful to figure out which kind is occurring, but it can be really hard to figure out, and it appears that at least some individuals experience both atonic and myoclonic drops.

So what’s the difference?  ATONIC VS MYOCLONIC-ATONIC Continue reading

Vitamin D & Respiratory Infections

DI’ll try to make this short. Here are eight facts:

  1. Although we do not have actual statistics, a significant number of children and adults with MECP2 Duplication Syndrome have been tested and found to have abnormally low levels of vitamin D.
  2. The reason or reasons for this are not well understood. Limited exposure to sunlight, some medications (e.g., anticonvulsants) can lower levels of Vitamin D), dietary issues may play a role.
  3. Low bone density (including osteopenia and osteoporosis) low-energy fractures, and skeletal deformities have been reported frequently among individuals with MECP2 duplication.
  4. Individuals with MECP2 duplication typically have increased frequency of respiratory infections.
  5. While at least some factors that contribute to this increased risk are well known (e.g., weak immune response, aspiration) are will known, this increased risk appears to be the result of multiple interacting factors.
  6. A large body of research suggests that Vitamin D deficiency plays a role in lowering resistance to respiratory infections.
  7. This research DOES NOT provide evidence that supplementing vitamin D beyond recommended levels is helpful.
  8. Too much Vitamin D is not helpful and can be toxic.

Most of these facts have been well known for many years.

CONCLUSION: Considering these facts, families may want to ask their child’s doctor about checking vitamin levels, and supplementing if needed. Continue reading

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

Bone Density: A belated Part 2

Way back in December 2012, I posted Bone Density, Osteopenia, Osteoporosis, and Fractures: Part 1. I never got around to posting Part 2 because I was hoping that some more relevant information would come forward. It hasn’t. Nevertheless, I am posting Part 2 now, even if it doesn’t add a lot of new information to the discussion, because I think it is an important topic. It is important because low bone density is a problem for many individuals with MECP2 Duplication syndrome, this problem often remains hidden until it manifests in fractures or other serious problems, and it is basically irreversible.

Bone density

This figure indicates some 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

Late Onset Spasms (LOS)

eye1A few days ago, I posted a video (Drop Seizure Video) on this blog. It showed a girl having “drops” or what the video caption called “infantile spasms.” A large number of MECP2 Duplication Syndrome family members agreed that although their affected family members had many kinds of seizures, this looked a lot like what some of their drops look like. I definitely found this very interesting, since infantile spasms are generally described as starting before one year of age, and are very rare in older children or adults.

Thanks to the internet, I was able to find out more. I got some great leads from two colleagues in Kyoto Japan and Doha Qatar Continue reading

Drop Seizure Video

This YouTube video looks a lot like what has been described as a drop in individuals with individuals with MECP2 Duplication Syndrome. The individual in this video does not have MECP2 Duplication Syndrome, but the video provides a good example of what some drops look like.

The text below is the original text accompanying the video on YouTube. Continue reading