Another May

I didn't mean to make this blog a once-a-year-purple-hair blog, but sometimes that's how it goes. It's May again and it's time to streak your hair purple for Pediatric Stoke Awareness Month!

Although, to be honest, I wasn't planning on doing the purple hair streak this year. For one, I cut my hair really short. I'm over 5 months pregnant, have had a barfy and anxiety-ridden pregnancy so far, and have had this urge to exert my toughness, like a cranky old dog with sore hips who bites if you bother her or act like your going to bother her. And having a near buzz cut helps me pull this off (kind of. I was given a coupon by a very old woman at the grocery store and then some Safeway Monopoly pieces from possibly homeless man who looked at my cart and my big belly and said, "She has a whole family to feed with another one on the way--you take these." So clearly I'm not being all that tough if everyone and their coupon-cutting grandma can approach me.).  For two, I've been really sad and pissed off that Darry has had to go through so much in the last year. I wasn't looking to have a tender moment getting my hair dyed and bringing awareness to this shitty thing called pediatric stroke. I figured I'd let the other parents with better attitudes do that this year.

And in fact, my dark attitude was in full form Monday as I ran errands including refilling Darry's prescription. There's always this moment getting his drugs where I think someone should pop out and say, "You're getting what for who? Well that's not supposed to happen, here let me fix it" and they make a phone call and poof, Darry is better. It's my 5 seconds of magical thinking.

After the errands, I was supposed to meet up with some coworkers for dinner and I honestly just wanted to go home and play Couch Catch with Darry while Shaughn made dinner. If you're not familiar, Couch-Catch is where Darry throws a stuffed elephant at me while I lay on the couch with an ice bag on my pregnant cankles and I throw the elephant into the kitchen buying me precious seconds to hear something terrible on the news. And I got super cranky when my coworker and long-time friend, Rebecca, asked me to come pick her up at work and then was cagey about where we were going. Obviously something was up and I was annoyed at being out of the loop and being about to enter some kind of event where I would be expected to have some kind of appreciative response. 

I knew I was being a dick and I wasn't sure I could turn that around in the time it took to go where we were going. I really thought it was going to be baby related and my strategy to being hopeful that things are going well with this baby has been to not think about him too much beyond "good luck in there!" I know this is not how many people connect to their pregnancies and I imagined it would be awkward for all involved, but especially me, to have this revealed at a surprise baby shower. And it made me mad to think about getting emotional in front of my coworkers trying to explain that my attitude about my pregnancy is me at my most hopeful, all things considered. 

So when I walked into my friend's house and saw that her dining room table was covered in hair dying materials and circled with a bunch of coworkers, I was so surprised. It wasn't about the baby at all! It was a surprise hair dying party for Pediatric Stroke! I probably wasn't as gushy as I could have been but we did get to laugh at my expense at being such a pill to get there. And one by one, my friend, Ellen, dyed streaks into everyone's hair. She and my boss had been plotting this since last year when my boss surprised
me with a purple streak of her own. It was such a fun night of laughing, eating tacos, and cheering each other on for being brave with our hair. My friend KJ and I even washed the dye out each other's hair at her kitchen sink. It was such a sweet moment and made me miss having close girlfriends like I had in high school. I took Darry into work the next day so he could see all the purple hair. The lighting was bad, but trust me, there's purple in there.
 

 

 

















Last year I wrote about the desire to not let all of this define Darry or our family. KJ recently told me, "It's weird. It defines you, without you wanting it to." She meant chronic illnesses and diseases in general. And I think she's right. If nothing else, the sheer amount of time we spend taking meds, going to appointments, and running tests is defining. It would be silly to spend so much time doing these things and then spend more time pretending it hasn't made an impact on how Darry is experiencing his childhood or how Shaughn and I are seeing ourselves as parents. Obviously there is this hope and effort to be the dad in Life is Beautiful where his kid gets to grow up and tell people, "Sure I grew up in a concentration camp, but I was happy." And it's true Darry had so much fun
jumping from the window sill to his hospital bed after his leads were off at his last 24 hr EEG that he cried when we had to go home, but I don't think that little bit of thrill outshone the previous 30 hours of being the most down I've ever seen him. Usually no matter what has just happened, Darry will try to run off and play. But this time he just sat in his bed and was resigned to just suffer through. He told my sister and I the next morning after realizing he couldn't go home yet and hearing a baby next door cry, "Sad baby. Sad about the hospital. Darry's sad too. Mommy sit with me?" Which is a line he could keep for the future as I will most likely say yes and open my wallet to whatever request comes next.
Darry and Aunt Jen, who made the stay much more bearable, as
did the Brave Box Darry received from Pediatric Stroke Warriors
filled with all sorts of activities including these super fun Mickey
Mouse figurines and scenic map)                                                    


Some of the impact of all the needed interventions has been obvious. After a recent ER visit and then a 24 EEG, Darry has been extremely hands off with people. He has even struggled to let the teachers at his school help him go potty. We went from a rare accident to daily accidents at school. It's a temporary blip but it makes me sad.

We got Darry's sleep study results back last week and it turns out he has moderate to severe obstructive sleep apnea. Obstructive, meaning it's likely something is getting in the way of his breathing when he is asleep. The usual suspect in these situations are his tonsils which are on the medium-large side. I'm in the middle of trying to get him an appointment with an otolaryngologist that would hopefully result in surgery before I'm due in August. I am beyond excited at the prospect of him sleeping better through the night (he was up at 3 a.m. last night and decided it was close enough to morning for him. Until actual morning hit, where he puttered out on the couch.), but I am having some extreme dread about the process.

It's one of the truly awful things about being alive that terrible things happen to kids. And it's not a bad thing to want to talk about something else. Sometimes the bravest thing is to try not to think about it and say "good luck in there!" But you only get to do that when you've stared the scary in the face. Because denial is a sneaky fog and being able to point to some facts can make or break the difference in survival and quality of life, especially in pediatric stroke survivors.  So here are some facts. Take a look, be the asshole who shares them with a new mom, and then quietly wish them all some good luck (don't actually say, "here something scary to think of! good luck!" because you won't get to be that person's friend anymore.)
(Info provided from the Pediatric Stroke Warriors website.)

______________________________________________________________________________

What is Pediatric Stroke?

Stroke happens when blood that carries oxygen and nutrients stops flowing to part of the brain. Without a steady supply of blood, brain cells in the area begin to die within seconds. This can lead to stroke symptoms and sometimes to lasting neurologic deficits or sadly, death.

While most have heard of stroke in adults, a stroke can and does happen at any age. Stroke can happen in newborns, children, teens – and even before birth. Perinatal strokes and childhood strokes are often different from adult strokes, with different causes and sometimes different symptoms and treatments.

A stroke is a medical emergency. If you think a child is having a stroke, call 911. A rapid response, quick diagnosis and treatment may help limit damage to the brain.

Quick Glance at the facts:

There are two age categories for pediatric stroke:

  • Perinatal, which refers to the last 18 weeks of gestation through the first 30 days after birth. Other terms for this include fetalprenatalin utero for the period before birth. Neonatal and newborn for birth through one month of age.
  • Childhood, ages 1 month to 18 years
  • Estimates reflect that stroke occurs in infants younger than 1 month of age roughly 1 out of every 2000 live births. With the risk of stroke from age 1 month to 19 years, being 5 per 100,000 children.

•Recognition of stroke is often delayed or even missed in children.

•Stroke is as common as brain tumors in the pediatric population.

•Stroke is one of the top ten causes of death for children.

•Of children surviving stroke, about 60% will have permanent neurological deficits, most commonly hemiparesis or hemiplegia. Hemiplegia/hemiparesis (total or partial paralysis on one side of the body) is the most common form of cerebral palsy in children born at term, and stroke is its leading cause.

•Other long-term disabilities caused by a stroke in childhood include cognitive and sensory impairments, epilepsy, speech or communication disorder, visual disturbances, poor attention, behavioral problems, and poor quality of life.
  
•The majority of pediatric strokes occur in the perinatal period.

•To many people’s surprise, the most focused period of risk for ischemic stroke in your lifetime is the week you are born.

•In most perinatal strokes, a cause cannot be found.

•For perinatal strokes, the overall risk for another stroke is extremely low, < 1%.

•Showing a hand preference, or consistently reaching out with only one hand before 1 year of age may be an indication of an earlier perinatal stroke.

•When stroke affects a newborn infant, symptoms may not appear until 4 to 8 months of age in the form of decreased movement or weakness of one side of the body.

•Cerebral Palsy (CP) refers to a motor (physical movement) difficulty which results from an abnormality or injury to the brain before or around the time of birth. Therefore, for stroke, the term CP only applies to perinatal stroke.

Perinatal Stroke Facts, Signs & Symptoms

Perinatal stroke symptoms

Seizures are a common symptom of perinatal stroke. They usually start 12 to 48 hours after birth and repeat.

Some babies have no clear symptoms for weeks or months after their stroke. Often parents, caregivers and doctors do not notice any signs of perinatal stroke until age 4 to 6 months, when the baby starts to seem weaker or partly paralyzed on one side of the body (hemiplegia or hemiparesis).

Symptoms may include:

  • Baby not moving 1 side of their body as well as the other
  • Baby keeping fingers and toes on one side of the body clenched in a fist
  • Child clearly using 1 hand more than the other (not common before age 1 in healthy babies)

Perinatal Stroke Risk Factors:

  • Disorders of the Placenta
  • Congenital heart disease
  • Sickle cell disease or other blood conditions that cause abnormal clotting (thrombosis) or bleeding
  • Infections such as meningitis

Childhood Stroke Facts, Signs & Symptoms


•For children who have an initial stroke, the risk for recurrent strokes is between 15% and 18%.

•Early recognition and treatment during the first hours and days after a stroke is critical in optimizing long-term functional outcomes and minimizing recurrence risk.

•Many children with stroke symptoms are misdiagnosed with more common conditions that mimic stroke, such as migraines, epilepsy or viral illnesses.
Childhood stroke symptoms

Childhood strokes may be missed because there is a lack of awareness that children can indeed have a stroke. At first, stroke may even be diagnosed as something else.

Children who have a stroke after the perinatal period tend to have 1 or more of these symptoms that come on suddenly:
​​
  • Weakness, paralysis or numbness in the face, arm or leg, usually on one side of the body
  • Trouble speaking, understanding language, reading or writing (aphasia)
  • Changes in vision, such as decreased vision or double vision
  • Dizziness, loss of balance or loss of ability to stand or walk
  • Sudden, severe headache
  • Seizures in a child who has not had seizures before – especially seizures that involve only one side of the body, followed by weakness on that side

Childhood Stroke Risk Factors

  • Congenital heart disease
  • Abnormal blood vessels in the brain, such as Moyamoya, arteriovenous malformation, vasculitis
  • Infections
  • Head Injury or Trauma
  • Sickle cell disease or other blood conditions that cause abnormal clotting (thrombosis) or bleeding
  • Autoimmune Disorders

Types of Stroke:

Ischemic stroke

In ischemic stroke, the blood vessel may be blocked by a blood clot that formed in the blood vessel (thrombus) or a clot that formed somewhere else in the body, such as the heart, and then traveled to the brain through the bloodstream (embolism).

Doctors group pediatric ischemic strokes by the age of the child.
  • Perinatal ischemic stroke (PIS): Stroke before birth or in a newborn (age 28 days or younger)
  • Childhood arterial ischemic stroke (childhood AIS or CAIS): Stroke at age 29 days or older

​Hemorrhagic stroke

In hemorrhagic stroke, the lack of oxygen-rich, nutrient-rich blood to brain cells is only one problem. Another problem is that blood builds up where it does not belong — in the brain but outside a blood vessel. This blood can put pressure on the brain, form clots or cause nearby blood vessels to close up (vasospasm), which can also damage the brain.

Causes of hemorrhagic stroke include:
  • Weak blood vessel bursting
  • Trauma, such as a head injury, that tears the wall of a blood vessel
  • Blood that does not clot as well as it should

Stroke Diagnosis:

The diagnosis of stroke in children requires recognition of presenting signs and symptoms leading to a careful clinical history and examination combined with appropriate brain imaging studies.

To see pictures of your child’s brain and look for blockage, bleeding or problems with the blood vessels, the doctor may ask for your child to have one or more of these imaging studies:
  • CT (computed tomography) scan
  • MRI (magnetic resonance imaging) scan
  • MRA (magnetic resonance angiography)
  • Ultrasound
  • Cerebral angiogram

Your child may also have one or more of these tests performed:
  • Blood tests to check for clotting or bleeding problems, infection or diseases that might increase stroke risk
  • Echocardiogram to check for heart problems
  • Electrocardiogram to check for problems with heart rate or rhythm
  • Electroencephalogram to look for the cause of seizures

Treatments:

Treatment for perinatal stroke and childhood stroke depends on:
  • The type of stroke
  • The short-term and long-term effects of the stroke
  • Any underlying condition that caused the blockage or bleeding in your child’s brain

If a blood clot is blocking blood flow in your child’s brain (ischemic stroke), doctors may use blood thinners (antithrombotics, either antiplatelets or anticoagulants) to keep clots from getting larger and to prevent new clots. In general, (tPA), a medicine that dissolves clots, is used in children only as part of a clinical trial. This drug is widely used in adults in the hours right after an ischemic stroke. However, Doctors are still studying how it affects children and which children can benefit.

If an artery in your child’s brain is bleeding (hemorrhagic stroke), a neurosurgeon may have to surgically repair the   artery.
If your child has an underlying condition that might have caused the stroke — and might put your child at risk for future strokes or other health problems — doctors will recommend treatment for this condition

Whatever the cause or effects of your child’s stroke, a diagnosis of stroke can be overwhelming. You are not alone. Support is an important part of care for your entire family

​Sources
:  Seattle Children's Hospital, Pediatric Stroke Program, "About Pediatric Stroke"
American Heart Association, "FACTS Knowing No Bounds:  Stroke in Infants, Children, and Youth", 2013 update

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