Blakey is lost

Blakey when he was adopted in August of 2012

Last night in this crazy summer heat, I recommended my daughter Gen take her Indian Ringneck on the back balcony so to take advantage of the cooler air setting in. From our back patio we can see the ocean and a lush thick forest bordering the side of the mountain where this little town is set. The back yard and the surrounding neighborhood looks like a little valley on a distance of a few kilometers in width.

It took two minutes, I asked Blakey for a kiss and Gen took him closer to me. He pulled over, kissed me on the lips. Then as she held him he was startled. I don’t know if I did something wrong. He spread his wings and flew over the balcony – I thought for sure he was going to fly down way below and my stomach started to twist. But then like a small airplane, he flew upward and circled above along with the other birds. We tried calling him – frantically. We were hoping he would simply fly around and settle back, but no he ended up on a distant birch tree. Two hours later he started answering to Gen’s calls. As my eldest daughter and I stood at the bottom of the tree, he flew off and that was it. We haven’t heard of him since.

It was a long and difficult night for Gen and I.We barely slept and by 4 AM we could hear the little baby birds calling out for food from their nests. We got up early hoping Blakey would start his usual little morning conversation since he was out in the open. So far, no news but Gen is sitting in the back calling him gently and offering him food. He’s always starving in the mornings.

There is something to be said for the strength of a sick child. She is so much stronger than anyone else. She is so much more than I will ever be and I say this in a good way because she amazes me and touches the bottom of my heart with her beauty. I often wondered how she could put up with her illness. It’s been nearly eight years and she’s hanging in there regardless of the fact that she has little or no life whatsoever . Now I know that the strength of these children is way greater than what we’ll ever be able to imagine. Getting the bird for her was my way of giving her a life that was worth taking care of. She’s done an amazing job with Blakey. He’s very tame although he wasn’t hand fed as a baby. He speaks many words and sentences. They range from “hello, thank you, good boy, peek a boo, wake up, do you want a cookie, come on, come here” to a whole other bunch he mimics from hearing me rant all day long. She cried a lot last night but quickly pulled herself back together, reasoning everything including me.  Is it the illness keeping her so strong? How does she deal with such awful pain all the time?

I can hear her still calling and offering the many gentle words she uses with him. I’m hoping he’s around somewhere so he can hear her, that he will cry out and that we will be blessed by his return.


Anxiety in children: what’s wrong with that kid?

ImageDisclosure: I am not a medical professional – what is contained in this post is my own opinion as a parent.

Yesterday I attended a family reunion and while we were sitting at the table I had a discussion with someone who’s teen has been suffering from anxiety symptoms for years – I’m guessing since childhood.
Continue reading

The journey: the early signs

Detail of L'écolière - Oil on Canvas Her last year in school

Detail of L’écolière – Oil on Canvas
Her last year in school


There is no way I will let her see the light by having surgery. That’s because I have to make sure she is fine, that everything is under control. This time around, it will not be days before they let me hold my child. I will do all that I can. I refuse to focus on the possible outcome of second trimester bleeding, pre eclampsia, and pre term labor. I am going to get through it all. Continue reading

Back to square one

A Gentleman And His Sheep In the Rain by Todd Sullivan

A Gentleman And His Sheep In the Rain by Todd Sullivan

Yesterday was the long awaited appointment for the possibility of a diagnosis related to my daughter’s joint hyper mobility and the other symptoms that “seem” to come along with it. It took us 8 hours to drive there because of bad weather. Continue reading

Don’t intimidate the doctor

My home town

Moving back to my home town meant having to find new doctors and in the process of doing so, I met a few interesting physicians – one odd psychiatrist who has since left town, a narrow-minded pediatrician, an open-minded family physician from France, an OBGYN who is very caring but intimidated by me, a brilliant surgeon who is comfortable with me asking questions, an endocrinologist that is very kind but leaves me feeling like something is not quite right, and many other health care professionals with their own baggage.

I was always able to tell if a doctor didn’t make sense in what he said; perhaps I have a full blown sixth sense for medicine or science. In my early twenties I asked a doctor I was working with a question that caught him off guard. It had to do with the difference between two similar skin lesions and he was flabbergasted. Instead of taking my question as “good question… let’s look into it” it was in the order of “how do you know that????” with a look as though I had stabbed him.

Then, in my thirty’s I decided to go back to University to become a biologist. I figured it would be a good incentive to satisfy my constantly growing curiosity as I could arrange my classes around the needs of my two little girls – while remaining a stay at home mom. Med school was not an option for me as it was virtually impossible to get into where I was.

While I was at it, I couldn’t get enough from my science classes. I ended up graduating with double the number of science credits I needed for a degree in biology. Many of the courses were graduate level ones because that was all that was left for me to do – I had already been credited all of the other required art classes from my previous studies.

I didn’t graduate with straight A’s. I did however learn a lot because I was feeding off of everything I had access to. Sometimes, the lab teachers would tell other students to see me about writing good lab reports or papers and then other times, the teacher and some students would gather around me to see what I thought because I had a way of coming up with interesting hypotheses. That was that –  I never got the drift that I was talking too much or controlled the situation in any way.

So back to the local doctors here who (I only realized this week) feel intimidated by having me in their office; they assume “I go back home to double check” what they said (two of them used these exact words)

The thing is I DO NOT double check – at least it hasn’t happened yet. When speaking with a doctor I discuss the topic and I ask questions that are in sync with the knowledge I have acquired over the years – I am a biologist and medical writer and it comes naturally. Occasionally, when I’m on my own, I read articles pertaining to various subjects I may find interesting or of useful/essential knowledge – that is what people in my field of work do. I read quickly and don’t analyze everything. However, I do keep in mind that research results and information can be unreliable for different reasons – as I have learned while studying and working in research. Furthermore, the information I rely upon IS NOT from patient information websites simply because, as a principal medical writer, I have edited and reviewed work from other writers and I can say that misinterpretation of information and data happens. I am not saying we shouldn’t trust these sites, but we don’t know much about the writer nor the editor (who by the way may change the information unbeknownst to the writer). We must keep things into perspective and in line with our needs. Talking about perspective, I have however, and I must say on more than one occasion, noted that physicians rely on Wikipedia for medical information. Wikipedia is usually considered a tertiary source and is not suitable for use in a doctor’s office simply because the findings or information reported would need to be reviewed for accuracy given the context. Besides, doctors have other reliable sources they can use.

In my field of practice it is virtually impossible for me to know everything and quite frankly, if I thought otherwise my knowledge would be saturated and I couldn’t bring anything more to my work. That would be awful of course because scientific advancement is a never ending story. Medicine, in my opinion, works the same way because it is based on scientific knowledge.

The physicians I appreciate most are the ones that don’t assume they know everything – they are in sync or try to keep up with the advancement of science and medicine and have a curious mind or at least are interested in what they do for a living.

Let us look into a few moments where I may have somehow or somewhat directed the conversation (and intimidated the doctor) in the hope of having the right treatment for my daughter.

TSH levels: It seems to be common knowledge among physicians in Canada that a TSH of 5.0 is normal (based on our medical guidelines). So yes, I understand and perhaps that level doesn’t cause symptoms in some people. Apparently (because I didn’t check – but the information actually came to me from a reputable source), in the US and France the upper limit considered acceptable are much lower than that of Canada (2.5 and 2 respectively). I brought this up when a doctor told me that my daughter’s TSH of 5.7 was not significant enough to cause her to be so fatigued. I said: “I understand, but in certain countries (stating which) a TSH of 2.0 and 2.5 is considered the upper acceptable limit”. Note that I didn’t tell the pediatrician she was wrong. There is also evidence out there that some patients are most comfortable when their TSH is set at the lower end of the range. Let’s try to be open minded here – a range (I assume) is determined from average results obtained from long research and analysis processes. Of course there can be variations.

Aldosterone levels: From listening to treating physicians, it appears that as long as the aldosterone renin ratio is within the acceptable range, high aldosterone is not a cause for concern. So once I asked a physician “What about secondary aldosteronism?”  Ouch.  Note that again I asked about this, I didn’t assume they were wrong. I thought perhaps there may be another explanation to my daughter’s very out of range results for aldosterone. The pathways of hormone synthesis are simply confusing and secondary pathways can offer other explanations on disease processes. When in doubt, why not tell the patient (or mother of the patient) that you will look into the results and speak to a colleague?

Thyroid and mood disorders: There is significant evidence out there that shows that treating patients with thyroid hormones alleviates mood disorder symptoms when all else fails, even with normal TSH. My daughter had received a cocktail of mood medication and I was worried given her young age and overall physical state (low blood pressure and blue mottling of the skin). I told the psychiatrist about the thyroid disorder that was not yet controlled – which could also affect her anxiety level. He responded by telling my daughter “It must be difficult to have such an over analytical mother?” This question resulted in making my poor child uncomfortable and feeling bad for her mother who was sitting next to her.

Low blood pressure in children: “It’s normal”. Yes, but my daughter’s toenails and fingernails are blue. The reply: “Oh well, bring her in next time that happens”.

Those are just a few times when I asked questions.

Right at this moment, sitting on my own, I have other ideas on Ehlers-Danlos Type III (EDS). These ideas come naturally to me following years of study and given my interest for molecular biology. EDS is a connective tissue disorder. Here is a simple definition pertaining to connective tissue function: Connective tissue functions not only as a mechanical support for other tissues but also as an avenue for communication and transport among other tissues. 

For the longest time, I thought anxiety in EDS patients had to do with more than neurotransmitter/receptor function. Recently, I came across an article that supported that possibility. EDS patients (at least some of them) show a difference in the brain structure involved in emotions.

Here is my next question: What about EDS and thyroid disorders? My daughter has “fluctuating” TSH results that confuse doctors every time I bring it up. Now look back at the definition I copied above on connective tissue function. What do you think? We may not have the answer, but perhaps there is a “logical” explanation that we should at least keep into consideration based on the fact that she has a connective tissue disorder. I have seen her being tested time and time again when it appears obvious that the answer doesn’t lie in a simple, common blood test or diagnosis.

Should I stop with the possibly “intimidating” questions? I may clarify my position before I start talking next time, but I certainly won’t stop with the questions.

Looking forward to psychiatry? Yes it’s possible.

Being the mask of Ehlers-Danlos Type III

Behind the mask of Ehlers-Danlos Type III

A few weeks ago, I came across a link on Facebook. I was actually relieved by its content because I had been thinking there had to be a link between depression or anxiety and Ehlers-Danlos Type III for some time. The article is called Brain structure and joint hypermobility: relevance to the expression of psychiatric symptoms and can be accessed here.

If you haven’t already read my post on our nightmare from psychiatry, you can check it out here “When psychiatry does more harm than good“.

Last month, my daughter (who suffers from EDS Type III) was seen by someone in the medical field who insisted on assessing her for suicide risk. Of course, we both knew (my daughter and I) that the results would be positive. I mean, imagine if you were 9 or 10 years of age and you felt like you were too tired to do anything (including sitting in the sun because you have a “broken thermostat” – meaning you overheat). And then, over the years your symptoms only get worse – the fatigue is unbearable (you can only sleep) and the pain is at times excruciating (your dog hits you under the chin with his head and the pain is so significant you lose your breath). On a bad day you can’t help but sleep for about 20 hours. You have no friends and you haven’t attended school for over 7 years. At the same time, doctors tell you you are oppositional and that you are tired because you do not exercise. Then when you take the suicide risk assessment questionnaire, your results are positive. Surprised? I don’t think so.

For my daughter, it is not about ending her life; this is about getting a life that she can’t seem to find the road to because there are too many obstacles.

The person who made her write the assessment questionnaire also told us that the psychiatric help she was receiving here was not suitable to her needs. I have to say I disagree and I’m sure my daughter feels the same way.

Every second month (or depending on her needs) my daughter and I see a local psychiatrist who is very  open to the fact that she is burdened by a condition that is misunderstood by most health practitioners (in Canada at least) and at the same time very “taxing” on her mental health status. Like many other health professionals, he knows very little about Ehlers-Danlos – and he admits it. But he listens and he doesn’t judge. For the first time, a psychiatrist walks alongside my daughter and sees more than just a mental issue. Every time we come out of his office, we feel amazing and hopeful. To the contrary of what is stated in my previous post about the danger of psychiatric assessments, this doctor actually tells my daughter that it’s very good she has my full support (rather than me causing her to be dysfunctional) and this week, he even told her that she obviously “absorbs” a lot of valuable knowledge from me and that for now it represents an important part of her culture and education. This week’s recommendation was that – in light of the fact that she is learning from me – she should take one day at a time, keep focusing on how to manage her illness to start feeling a little better, and to not worry about school until she feels ready. At home, we discuss physics, writing, and culture on a regular basis. My daughter’s cognitive scores are in the range of the 90th centile and things need to kept in perspective – she will do well if she can just start managing her symptoms rather than pushing them under the carpet as she has been asked to do.

As for the completed suicide risk assessment questionnaire, the results are considered passive and relevant to the difficulties my daughter is facing on a daily basis.

I would wish for anyone with anxiety or an illness affecting their mental health to meet a psychiatrist or caregiver with as much compassion as that of my daughter’s. Just like anything else, we must keep looking for the best possible treatment out there rather than putting up with something destructive.

Did I mention Leigha?

The sleeping Child, Acrylic on canvas 22 x 28 – A painting of Leigha

Leigha is 18 years old. She’s in her second year of nursing at our local college.

She’s the one that often feels left out because of her sister’s medical condition.

But Leigha is smart, very independent, loves to laugh out loud, and very mature for her age. When she was just short of turning 14, she decided to move to her grandmother’s – at a distance of 800 km – to get away from the family situation. Although that was very difficult for me as a mother, I realize it was very grand of her to take control of her life like that.

When Leigha was born, she was the most amazing baby. The memories I hold of her, from the moment I first took her into my arms, are very profound and heartwarming. Being as calm as she was, as a little girl, she would fall asleep anywhere, anytime. I would find her sleeping in the middle of the living room, under a table, or in her highchair. Once, I found her on the rocking chair of her bedroom. I took a photograph of the priceless moment and eventually used it to create my first painting.  I will never forget the feeling of when I traced her little features on the canvas; it took my breath away. I used Golden heavy body acrylics for this piece and applying the many layers of paint remain fresh in my memory to this day. When I have a hard time finding sleep, I visualize applying the transparency of Alizarin Crimson on Leigha’s dress and that is the last thing I remember.