Cri du Chat awareness week 2018 (Day 2)

Cri du Chat Syndrome is a big unknown for many doctors and therapists out there.

We (the parents) know that this is a spectrum and that the diagnosis we receive is worst case scenario but many doctors still believe that our kids will accomplish nothing.

If you’ve been following Lessons from my Daughter for awhile, you know Emily is a young adult and she is doing a lot of things!

She is her own person and regardless of the challenges, she continues to move forward, she continues to learn and grow!

Here is what you can find about the development of kids with Cri du Chat Syndrome on the  5p- Society website

Development

Here’s some things to look for when it comes to development with 5P- syndrome.

▪ Gross and fine motor skills

▪ Expressive speech and language delays

▪ Communicate by sign language, communication devices, gestures and a few basic words

▪ Poor muscle tone (hypotonia)

▪ Slow growth associated with failure to thrive

▪ Constipation

▪ Low Birth weight

▪ Normal Life expectancy

▪ Young adults may have premature graying

▪ Most children walk, although at a slower pace and with a guarded gait.

▪ Majority of children do not achieve toilet training.

▪ Many children and adults have sleep issues.

▪ Some have visual problems.

▪ 80% of children have a hearing condition known as hyperacusis (hypersensitivity to noise).

▪ Children with CdCS undergo typical changes in puberty at the appropriate age

▪ Many children have seizures ranging from Grand Mal to silent.

▪ Very few adults are able to work with supervision.

▪ Even fewer adults are able to live independently.

▪ Most children with CdCS have behavioral issues

▪ Attention Deficit Hyperactivity Disorder (ADHD).

▪ Poor concentration.

▪ Impulsiveness and OCD.

▪ Biting, hair pulling, pinching and hitting.

▪ Temper tantrums, stubbornness, frustration, self-biting, head banging and skin picking.

▪ Autistic-like characteristics- some are dually diagnosed with Autisim.

▪ Hand flapping, string twirling and rocking.

As you can see, there is a wide range of challenges, not all kids face the same struggles but all of them do face some struggles.

Our kids have faced more challenges in their young life that many people will face in their whole life.

Regardless of the struggles, issues and challenges…

Emily is still smiling and laughing!

Emily continues to learn and grow!

Emily will not let her syndrome define her and all the kids I have met with Cri du Chat Syndrome are the same…

They define Cri du Chat Syndrome!

We have a facebook page: If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page.

You can also find me on Twitter at @plebrass

#CruduChatSyndrome

Cri du Chat Awareness Week 2018 (Day 1)

With a rate of 1 in approximately 35,000 to 50,000 birth, Cri du Chat randomly appears between 8 and 11 times per year in Canada.

In a country covering 9.985 million squared km, these babies can be really far away from one to another.

For us, when Emily was little, it meant no other families were near by.

In 1999 when she was diagnosed, it meant that our only source of information was a really slow internet connection.

Fast forward to today, the internet is faster, facebook is full of support groups and many bloggers are out there raising awareness.

Although I no longer blog regularly, I am still one of these bloggers!

Welcome to our journey!

Cri du Chat Syndrome is characterized at birth by a high pitched cry, low birth weight, poor muscle tone, microcephaly, and potential medical complications.

Cri du Chat Syndrome is also called 5p- (5 p minus) Syndrome.

The term “5p-” is used by geneticists to describe a portion of the short arm (p) of chromosome number 5 that is missing.

Cri du Chat Syndrome is a spectrum disorder.

Children born with this rare genetic condition will most likely require ongoing support from a team of parents, therapists, and medical and educational professionals to help them achieve his or her maximum potential.

You can find more about about Cri du Chat syndrome at 5p- Society

If you’ve been following our blog for awhile, you know Emily is not defined by her syndrome! She defines it and proves every single day that she is more than her syndrome.

Over the week, I will do my best to tell you more about Cri du Chat Syndrome!

We have a facebook page: If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page.

You can also find me on Twitter at @plebrass

#CriduChatAwareness