Category 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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A metaphor for MECP2 testing

 

7heartsokAs more families affected by MECP2 duplication are discovering that sometimes the wrong tests have been ordered leading to incorrect information being given, this simple metaphor may be useful  for  understanding the difference between two MECP2-related conditions and how testing applies to them.

Imagine that you are helping out at major international championship card game. Continue reading

MECP2 Duplication is NOT Rett Syndrome

CAUTION2I hate to be writing this in 2017, but there still seems to be a lot of confusion between Rett Syndrome and MECP2 duplication syndrome. So let me start simply by saying, THESE ARE NOT THE SAME. They are very different and in some ways they are completely opposite of each other.

Nevertheless, a lot of people including a significant number of doctors, healthcare professionals, and researchers seem to be confusing these two conditions. I am not pointing out these groups just to pick on them; I feel like I have to point this out because patients and their families are relying on these people to provide appropriate care and advice. If they confuse these conditions, real harm can result. 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

More Research on Cannabidiol & Seizures

flaskSeveral new studies provide encouraging results about the use of cannabidiol (CBD) oil to treat seizure disorders that are not controlled by other medications. Research also, however, points toward important cautions.

Already in 2016,at least nine studies have been published on CBD and seizures. Two 2016 studies, one from Israel (Tzadok et al.,, 2016) and one the United States (Devinsky et al., 2016) are generally reporting particularly encouraging results. This is not to say the others are negative, just less relevant. The two discussed here are important because they include some results 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

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

Susceptability to Influenza in MECP2 Duplication

mouseRespiratory infections are a major challenge for individuals with MECP2 Duplication Syndrome. They are a major source of illness and are frequently life threatening. Most of the focus on studying these infections has focused on bacterial pneumonia. A recent study, however, looked at the effects of influenza A, a virus, on MECP2 Duplication laboratory mice. Continue reading