Boogie Wonderland

"No vacation goes unpunished." ~Karl Hakkarainen

[Warning: This post contains detailed descriptions of mucous, boogers and related grossness. In the event that you are not immune by being a health care worker, a seasoned parent or a seven year old boy, viewer discretion is advised. You were warned. *Cough*]

One of the perqs of being a "senior" nurse is the vacation time. Although we don't spend it all in one place usually, it helps to try and regain some semblance of a work-life balance. It's given to us in hours, which when you apply it to shiftwork, can have some pretty cool results. I work a wacky schedule that sees me work two twelve hour day shifts, two twelve hour night shifts and then have four or five days off before starting it all over again. I've spent 45 hours (4 shifts) of my vacation bank this week (as I refuse to work on my birthday), which when added to the five on either side, gave me 14 days off. Sha-ZAM!

Sounds great right? It certainly was leading up to it. I was almost skipping out of my last shift; it was truly difficult to resist shouting "So long, suckers!" at my relief that morning. I was OUT. I was DONE! I was on vacation and I HAD THINGS TO DO AROUND HERE!

Right.

Enter the Virus.

This house has been besieged by one bug or another since Quinn returned to school in September. First we had a round of colds which, in all fairness, were pretty tame. Except for Sean who, for a guy that only gets sick once every 3 to 5 years, got a whopper. He was completely miserable for a full week. I thought I was coming down with it for 12 hours, only to have it go away. It powered through all three kids and then finally sidled off into the sunset, only to be replaced shortly thereafter by Boogie Nights.

I went in to get the babies up one morning, only to find my son's face to be two thick streams of greenish mucous. Oh the huge manatees! I had never seen anything like it. He looked like a walrus. I can handle most things, but boogers and spit are two of my least favourite. He didn't seem to be too troubled by it, other than flinching when I attempted to wipe his face eleventy million times a day. His sister got it a few days later and Quinn after that. I had a few hours of it and then it was gone again. Sean, well, his cough came back. They all ended up with a cute little smoker's cough and I was happy to see the ends of the walrus impersonations (and the fights to suction out their little heads).

By this point, it was the beginning of November. Quinn decided to start having nosebleeds, probably to break up the monotony. An increase in the overall humidity fixed that. However, I found the kids with runny noses again, this time clear (much to my initial relief) and we started all over again. This bug quickly became "Boogie Wonderland" as sticky booger bits were everywhere on the kids. They were stuck on their nose, they were on the backs of their hands, they were stuck in their hair. They hung on like little hitch-hikers and needed a firm swipe with a baby wipe to remove them safely. All the kids learned to duck and cover when they saw me coming as it meant I was going to wipe/pick off/deal with some nastyness or another. Again, I felt crummy for 12 hours or so, but it cleared up again. Eventually this too settled down, everyone was sleeping again, coughs were productive and disappearing and I was poised to take vacation.

That was my mistake, right there.

Yes, we are talking about colds here. However, when you have Trisomy 21 (and an AVSD as well), you can get very sick, very fast. What is a cold for Zoe and Quinn could quite easily be pneumonia for Wyatt. I don't keep my kids in a bubble, far from it. However, this little factoid kept me awake many a night. Is he breathing okay? Is he blue?

About a week ago, his cough slowly became drier. I listened for the bark of croup and was sort of denied. Sort of. We proceeded as if it was croup and dealt with any fevers that popped up. As time went on however, it became more evident that he (and the other members of the family, but to a lesser degree) had what became known as the Martian Death Cough. The kids would wake up with their noses almost sealed shut with dried greeners. Then the coughing would start, the chest-burster cough that seared your throat dry. Once it really took hold, they would cough all through the night. Zoe had it first; she became more haggard looking every day as she lost more sleep because of it. She would cough and cough and her eating almost ceased completely. She even developed a new phrase "ohhh noooo!" Between coughing fits she would walk around and declare "ohhh nooo!" and be our own little Voice of Doom. We pushed fluids and tylenol and one night she actually got some sleep; by morning she looked a million times better.

Then it was Wy's turn.

He coughed off and on through the night for a few days without much problem. We pushed fluids and dealt with fevers as The Voice of Doom made sure that we took this seriously. He would cough and she would say "ohhh noooo!" very dramatically and look very sad. Then, somewhere around Thursday, things started to really worsen. His chest was an orchestra of rattles, squeaks and groans and you could see that his breathing was faster and took a lot of energy. As time went on, his hypotonia became more pronounced and he literally wilted before our eyes. Friday night was particularly scary, after listening to him cough non stop for what seemed like forever, I brought him downstairs at 4 am to asses him. He was burning up; in went the Tylenol and a bottle of juice. I had abandoned the sippy cup the day before as the need for fluids out did his need for oral development. You could see him using his intercostal muscles to breathe, you could see him assuming sleep apnea-head- thrown-back poses to sleep. He did start to look better once everything kicked in; I changed him into a onesie and went back to bed, one ear glued to the monitor. I could hear the chest noises through the monitor at times. He was going to the doc in the morning, no matter how much he rallied.

The doc agreed with me and stuck him on some antibiotics. I was a bit concerned at first as we could barely get the juice into him. His throat hurt badly from coughing and while all this is going on, he decided to try and grow some more teeth. Food was completely out of the question, even ice cream. What kid refuses ice cream? I even made some Italian wedding soup which was so chock full of yummy goodness that even big brother had two helpings. De nada. He was even fighting us on the Tylenol and liquid meds.

I spent last night glued to the monitor again (and snuck in there I don't know how many times to check his breathing). There were a few coughing fits, but not a lot. We are all sleeping in later these days, probably due to our nocturnal prowls, so I was pleased to see some of his spark back this morning when we woke them up at 10. He's even had some chatty bits today, which is encouraging. The indrawing is still there at times, but he is doing more. He's moving around the room again and pulling up on things, a feat that would have completely exhausted him two days ago. He's eating soft squishy things like yoghurt and applesauce and if I pretend to not see it, right now he's nibbling on a waffle while the boys watch the Grey Cup. Don't watch him eat it, don't even look at him. He may drop it.

Now it's my turn.

It feels like I am slowly being strangled and my chest hurts with the Martian Death Cough. Luckily, I can drink hot liquids and take things like Robitussin to help with the cough and Tylenol to get rid of my headache. I'm also officially on vacation starting today, so I will have plenty of opportunity to sleep (I hope). I will slather myself in Vaporub and steam the hell out of the bedroom with the vaporizer. I don't care as long as the kids are ok.

No good deed goes unpunished and, as it turns out, neither does any vacation. I should have known that slowing down would allow the bugs in. We are armed with plenty of fluids, Clorox wipes and healthy immune boosting num-nums so we should see the other side of this at some point. I look forward to the day where this place is no longer Boogie Wonderland. This was not the destination I had in mind for my vacation, but apparently this is what was needed for me to slow down. We are lucky... as I've said before it could have gotten very nasty, very fast. I also know many people that are facing so much worse with their kids right now. We'll take our medicine and count our blessings. In the meantime, pass the Vaporub. Menthol and eucalyptus are the new sexy.

Factoid Friday: "Mental Retardation" is No Longer an Acceptable Diagnosis

For those not in the know, the DSM or Diagnostic and Statistical Manual of Mental Disorders contains the diagnostic criteria for all things psychiatric.  The DSM also contains criteria for conditions that affect cognition.  It has been revised many times over the years, but in 2013, the American Psychiatric Association will finally be putting out DSM-V.

The DSM has undergone many changes over the years and has re-written and discarded various nuances of humanity to reflect the times.  It wasn't until 1973 that homosexuality was removed, for example.

The term "Mental Retardation" was used extensively in the DSM and listed a variety of diagnosing criteria.  Included was a range, from mild to severe and the language very judgemental (this is taken right from DSM-IV-TR):

"A. Significantly subaverage intellectual functioning: an IQ of approximately 70 or below on an individually administered IQ test (for infants, a clinical judgment of significantly subaverage intellectual functioning).

B. Concurrent deficits or impairments in present adaptive functioning (i.e., the person's effectiveness in meeting the standards expected for his or her age by his or her cultural group) in at least two of the following areas: communication, selfcare, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health, and safety.

C. The onset is before age 18 years.

Code based on degree of severity reflecting level of intellectual impairment:

317 Mild Mental Retardation: IQ level 50–55 to approximately 70
318.0 Moderate Mental Retardation: IQ level 35–40 to 50–55
318.1 Severe Mental Retardation: IQ level 20–25 to 35–40
318.2 Profound Mental Retardation: IQ level below 20 or 25"

As of May 2013, the term "Mental Retardation" will no longer be used; instead "Intellecutal Development Disorder" will be substituted.  The rationale for this, is as follows:

"The term mental retardation was used in DSM-IV and in earlier DSM definitions. Mental Retardation is no longer used internationally or in U.S. federal legislation, so a name change is required in DSM-5. The term Intellectual Disability (ID) is widely used..."

Instead of the old definition, the following is what is proposed:

"Intellectual Developmental Disorder (IDD) is a disorder that includes both a current intellectual deficit and a deficit in adaptive functioning with onset during the developmental period. The following 3 criteria must be met:

A. Intellectual Developmental Disorder is characterized by deficits in general mental abilities such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experience.

B. Impairment in adaptive functioning for the individual’s age and sociocultural background. Adaptive functioning refers to how well a person meets the standards of personal independence and social responsibility in one or more aspects of daily life activities, such as communication, social participation, functioning at school or at work, or personal independence at home or in community settings. The limitations result in the need for ongoing support at school, work, or independent life.

C. All symptoms must have an onset during the developmental period."

On a more personal note, one of the largest arguments that I have heard regarding usage of the R word is "it is medical term". As of this publication, it is no longer an accepted description or diagnosis and is therefore not acceptable in ANY context.

...And that's the facts, Jack. Happy Friday.

"American Psychiatric Association DSM-5 Development." Proposed Revision. American Psychiatric Association, n.d. Web. <http://www.dsm5.org/proposedrevision/pages/proposedrevision.aspx?rid=384>.

Factoid Friday: Special Needs Bullying (31 for 21, Day 19)

Sadly, bullying is a reality in our schools and a hot button topic as of late.  Even sadder, those with special needs, especially the learning disabled are routinely targeted.

Here are some fast facts about bullying, specifically aimed towards those with special needs:

  

• 60 percent of differently abled students report being bullied compared to 25 percent of their typically abled peers
• Only 10 studies have been performed in the US regarding the relationship between special needs and bullying.
• Of these 10 studies, all have concluded that differently abled students are 2 to three times more likely to be bullied than their typical peers.
• Along with this, the nature of the bullying appeared to be more chronic and had a direct relationship with their disability.
• Children with special needs often have a lower social standing which may contribute to frequent bullying.
• Children with visible disabilities, such as Down syndrome or cerebral palsy have a higher incidence of being called names or aggressively excluded from social activities.
• Children with learning disabilities, autism spectrum disorders and ADD or ADHD exhibit significantly more victimization than even their peers with mental or behavioural disorders
• Thirty percent of parents of a 12 to 17 year old fear bullying over kidnapping, domestic terrorism, car accidents, or suicide.
• Twenty seven percent of parents of a child under twelve say that they fear bullying slightly less than kidnapping.

Also for consideration:

• Twenty percent of total teens report having been the victim of cyber bullying.  More research is needed into the relationship between cyber bullying and teens with special needs as the average of internet usage is higher with this group (due to accessibility, etc).
• Social and Emotional Learning curriculum (SEL) where students are are assisted in learning skills to help them develop interpersonal relationships, cope with school and schoolwork and develop personally as an individual have shown to decrease the overall incidences of bullying (both of typical and non-typical students) while at the same time improving overall grade scores (by approximately 11%).

And that's the facts, Jack.  Happy Friday. 

"Bullying and Ostracism Experiences in Children with Special Health Care Needs." Journal of Developmental & Behavioral Pediatrics 31.1 (2010): 1-8

"Walk a Mile in Their Shoes: Bullying and the Child With Special Needs." AbilityPath.Org. Community Gatepath, Web. <http://www.gatepath.org/>.

Factoid Friday: "We Want Respect" (31 for 21, Day 12)

I talk to a lot of people, both in real life and online about Down syndrome.  I open the dialogue as much as possible in order to share ideas and to advocate for what we know is a very marginalized population.  Often, I "stick my neck out" and instead of just walking away, confront people on their behaviour when it is disrespectful or harmful to those with a learning disability.

Sadly, one of the (more troll-like) comments I run across quite often is that advocates for the learning disabled are only doing such to make themselves look and/or feel better.  The assumption there of course, is that those with learning disorders, such as Down syndrome, don't have the capacity to know the difference or care.  In other words, they don't know they are being targeted or made fun of, so what's the difference?

Well, that sort of thinking is paternalistic at best and plain wrong at worst.

According to a study released in July in the American Journal on Intellectual and Developmental Disabilities entitled “We Want Respect”: Adults with Intellectual and Developmental Disabilities Address Respect in Research, those that participated in the study have views regarding respect that;

"...are consistent with disability rights' ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity. Notably, participants spoke at lengths about the nature of interactions between researchers and participants. Implications are discussed, including how to infuse research standards with community-supported values and preferences."

 ...And that's the facts, Jack.  Happy Friday.

McDonald, K. E. "We Want Respect": Adults with Intellectual and Developmental Disabilities Address Respect in Research." American Journal on Intellectual and Developmental Disabilities 17.4 (2012): 263-74.

Factoid Friday: Fast Facts on Down syndrome (Revisited) (31 for 21, Day 5)

Many people seem to be pretty foggy as to what Down syndrome actually is.  Most people expect severe developmental delays, a short life span and an inability to live independently.   As few as 40 years ago, this could have been the case.  However, if there is one thing you should understand about DS, not being "neurotypical" often means breaking the stereotypes.  For today's Factoid Friday, we are revisiting our fast facts on Down syndrome that I published on March 21 for World Down syndrome Day. 

What is Down Syndrome?

Trisomy 21 or Down Syndrome is a genetic disorder caused by an accident in cell division.  This causes the creation of an extra copy of the 21st chromosome.  There are three different types of Down Syndrome:

Trisomy 21, where there is simply an extra copy of the 21st Chromosome.

Mosaic Down Syndrome where the creation of the extra chromosome happens later, causing some cells in the body to have it and others not.

Translocation, where a piece of the 21st chromosome breaks off and attaches itself to another (usually the 14th) which causes the same symptoms.

The extra genetic material can express itself in a variety of ways, including the stereotypical facial features and heart issues that many individuals experience.

Fast Facts about Down Syndrome:

• Occurs in Approximately 1:700 births and is the most common chromosomal disorder.
• Is independent of race, religion, creed, colour, socioeconomic status or nationality
• Occurs independently of any maternal or paternal activity prior to conception and pregnancy
• Maternal age can be a factor, although 80% of children with Trisomy 21 are born to woman under 35.  
• Can have medical issues; varies from individual to individual.  Most conditions occur in general population as well;  all are treatable.

Recent studies with families of individuals with DS have shown:

• 99% said they loved their son or daughter
• 97% of parents said they were proud of their son or daughter, 94% of siblings reported being proud of their brother or sister with DS
• 79% said their lives were made more positive by their son or daughter with DS
• 88% of siblings felt that they were better people because of their younger sibling with DS

People with Down Syndrome:

• Attend school, even post secondary
• Participate in the major decisions that affect their lives
• Contribute to society in meaningful and productive ways
• Flourish with a stimulating home environment, enriched educational programs, positive family support and good health care.
• Have a life span that has increased from 12 in 1912 to now over 60.  
• The oldest living person recorded with DS was 87.

...And that's the facts, Jack.  Happy Friday!

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Conditions Concurrent with Down Syndrome

People with Down Syndrome can have a variety of medical issues.  Previously we have explored Eye and Ear problems, Atlantoaxial Instability and mentioned cardiac and bowel conditions.  We have also looked at some of the more common physical features of Down Syndrome.  As this is our last Factoid Friday (for a while...), here are additional medical concerns that can commonly occur with Down Syndrome.  It is important to note that none of these conditions are exclusive to DS;  these exist in the greater community all on their own.  However, they are listed here as there is a slightly higher incidence among people with Trisomy 21.

Cardiac

• Atrioventricular Septal Defect
• Ventricular Septal Defect
• Atrial Septal Defect

Dental

• Reduced oral cavity
• Late and unusual teeth
• Macroglossia
• Tongue fissures
• Periodontal disease

Dermatological

• Soft velvet skin as infants, becoming dry and course as they get older (xerosis)
• Atopic dermatitis
• Alopecia areata
• Alopecia totalis
• Alopecia universalis
• Acrocyanosis
• Cutis marmorata
• Chelitis
• Seborrhea
• Hyperkeratosis
• Syringomas
• Elastosis perforans serpiginosa
• Vitiligo
• Acanthosis nigricans
• Folliculitis
• Scabies

Endocrine

• Hypothyroidism
• Hyperthyroidism
• Hypopituitarism
• Type I and II Diabetes

Gastrointestinal

• Aganglionic megacolon (Hirschprung's Disease)
• Annular pancreas
• Duodenal atresia
• Duodenal stenosis
• Imperforate anus
• Tracheoesophageal fistula
• Pyloric stenosis
• Esophageal motility disorders 
• Gastroesophageal reflux
• Malabsorption disorders including celiac disease

Hematological

• Transient Leukemia
• Leukemia
• Thrombocytopenia
• Thrombocytosis

Neurological

• Epilepsy
• Alzheimer's Disease

Orthopedic

• Scoliosis
• Joint dislocation
• Hip and knee instability
• Weak ankles
• Foot problems

Respiratory

• Risk for respiratory infections
• Risk for aspiration pneumonia
• Sleep apnea

Although this list is long and seemingly scary, it really isn't.  Most people with Down syndrome only have a few random things on this list (some of which are temporary conditions).  Even the most severe ones (such as AVSD) can be managed surgically and very successfully.

And that's the facts, Jack.  Happy Friday.

Factoid Friday: 7 Good Reasons to Breastfeed Your Baby With Down Syndrome

It may be difficult to breastfeed your child with Down Syndrome in the beginning.  I had to train Wyatt to latch properly and then how to eat without either choking or exhausting himself.   I was asked many times by (mainly) well meaning friends why I would bother.  I would mumble in my sleep deprived haze about antibodies and future weight issues.  Today's Factoids, now that I am a little more coherent, are good reasons why you should breastfeed your baby with DS.

1)  Breastfeeding provides antibodies and protection from illness.  Children with Down Syndrome are susceptible to bowel and respiratory issues.  Breast milk provides antibodies to fight infection and is easier to digest than formula.

2)  Breastfeeding improves mouth and tongue co-ordination which will aid in speech and language development.

3)  Breastfeeding promotes increased brain growth due to DHA, a fatty acid that is not found in most formulas or cow's milk.  Breastfed children score higher on IQ tests than those raised on formula;  this brain stimulation is particularly important in learning disabilities such as Down Syndrome

4)  Breastfeeding provides the opportunity for extra sensory stimulation as there is more skin to skin contact.

5)  Breastfeeding fosters closeness.  It offers more time to cuddle and spend time and get to know a special needs baby better.  It also boosts the mother's self esteem by providing a way that she can do something meaningful for her child and their health.

6)  Breastfeeding enhances mothering skills.  The patience, encouragement, coaxing and teaching used to help the baby learn to breastfeed will be employed over their lifespan to help them reach their goals.

(Becky Flora, BSed, IBCLC, 2001)

Finally, Number 7 is on me...

7)  Breastfeeding reduces the risk of Type 2 diabetes.  People with Down Syndrome are prone to Type 2 Diabetes for many reasons, including increased insulin resistance, reduced lean muscle mass, increased weight and fat storage. 

And, that's the facts, Jack.  Happy Friday.

Factoid Friday: Perceptions of Down Syndrome

Today I would like to present a series of recent studies about Down syndrome that focus on the overall impact that it has on the family and the well being of individual family members (including the person with DS themselves). The information in each of these studies was gathered with new or expecting parents of a child with Down syndrome in mind.

The first study asked families how they felt about their child with Down syndrome. 

• 99% stated they loved their son or daughter
• 97% stated they were proud of their son or daughter
• 95% stated that their other children (without DS) had a good relation with the siblings with DS
• 79% stated that they felt their lives were made more positive by their son or daughter
• 5% stated they felt embarassed by their child
• 4% regretted having their son or daughter

"The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride." - Having a son or daughter with Down syndrome: Perspectives from mothers and fathers., Skotko BG, Levine SP, Goldstein R., © 2011 Wiley-Liss, Inc

The second asked siblings of those with Down Sydrome how they viewed and felt about their brother or sister.

• 96% stated they were affectionate toward their brother or sister with DS
• 94% of older siblings were proud of their younger siblings with DS
• >90% planned to remain involved in the lives of their siblings with DS as they became adults
• 88% of older siblings felt that they were better people because of their younger sibling with DS
• <10% felt embarrassed by their brother or sister
• <5% wished to trade their younger sibling for another without DS

"The vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing" - Having a brother or sister with Down syndrome: Perspectives from siblings., Skotko BG, Levine SP, Goldstein R., © 2011 Wiley-Liss, Inc

The third study asked people with Down syndrome (that were 12 or older) questions regarding their self-perception. 

• 99% expressed love for their families
• 99% stated they were happy with their lives
• 97% liked who they are
• 97% liked their siblings
• 96% liked how they look
• 86% felt they could make friends easily*
• A small percentage expressed sadness about their life.

(*Many of those who felt they could not make friends easily lived in rural areas where they were isolated)

"In our qualitative analysis, people with DS encouraged parents to love their babies with DS, mentioning that their own lives were good. They further encouraged healthcare professionals to value them, emphasizing that they share similar hopes and dreams as people without DS. Overall, the overwhelming majority of people with DS surveyed indicate they live happy and fulfilling lives." - Self-perceptions from people with Down syndrome., Skotko BG, Levine SP, Goldstein R., © 2011 Wiley-Liss, Inc

  

 ...And that's the facts, Jack.  Happy Friday!

Just the Facts, Ma'am! Welcome to Factoid Friday

I have a feeling that 'Factoid Fridays' may stick around after the 31 for 21 Challenge is over.  Although it is shorter than one of my usual verbose entries, sometimes it is just nice to have the facts, ma'am.

Your Factoids For Today:

Down syndrome:

• Is the most common chromosomal disorder
• Occurs in 1 out of every 696 births
• Occurs independently of race, religion, creed, colour, socioeconomic status or nationality
• Occurs independently of any maternal or paternal activity prior to conception and pregnancy
• Has a higher incidence as mother's age increases, however 80% of babies with Down syndrome are born to women under 35
• Has a range of learning disability, not a set level of "functioning".

With Down syndrome:

• There is a 40% chance of a congenital heart defect (that will be present at birth)
• There is a 10% chance of the baby having a bowel blockage at birth that will require surgery
• There is a high incidence of issues such as thyroid disease, diabetes and epilepsy. However, as these conditions are treatable, most people with DS lead reasonably healthy lives.
• The average life span in 1983 was 25.  Today it is over 60.

There are:

• Over 400,000 people with DS living in the United States alone
• Approximately 35, 000 people in Canada with Down syndrome

 
People with Down syndrome:

• Attend school (even post-secondary)
• Participate in the major decisions that affect their lives 
• Contribute to society in meaningful and productive ways
• Flourish with a stimulating home environment, enriched educational programs, positive family support and good health care.

(Statistics courtesy of The Canadian Down Syndrome Society, the National Down Syndrome Society and the National Association for Down Syndrome.)