Tuesday, April 13, 2010

School meeting

This morning Avery and I had a meeting with Avery's teacher and the school nurse and principal. It went well, and I think it was pretty informative for them. I decided beforehand that we didn't really need to go into who's to blame for the issues we had over how the whole incident was handled - we'd already been through that and I had received a lot of apologies from everyone involved. But after hearing the teacher say that the nurse told her that shunt problems would be evident immediately, I knew that I needed to talk to them about Avery's shunt and conditions, since that little nugget was entirely untrue. Although to be fair, after Avery's teacher had left, the nurse made a point of letting me know that the teacher had misunderstood her, because she knows that symptoms of shunt problems can take hours or days to show up and would never say otherwise.
Anyway, I went through Avery's list of diagnoses, which was good because they didn't have half of them on her records. I had printed out two copies of the following information I had typed out - a copy for the nurse and a copy for the classroom. (I just copied and pasted the document, so the images haven't copied, and I'm too tired to do anything about it...sorry)

Avery’s diagnoses:

  • Congenital Hydrocephalus
  • Dandy Walker
  • Spastic Diplegic Cerebral Palsy
  • Periventricular Leukomalacia
  • Absence of the Septum Pellucidum
  • Hypogenesis of the Posterior Corpus Callosum
  • Optic Nerve Hypoplasia
  • Septo-optic Dysplasia
  • Sixth Nerve Palsy

Avery’s shunt was placed at 2 days of age. She has managed to avoid any revisions so far. Her current shunt is a Strata II programmable shunt. Its mechanism is adjusted using a powerful magnetic device, and while ordinary magnets should in theory not pose a problem, it is best if she stays away from large or powerful magnets. Magnets of any size should not be placed near her shunt. She has had at least two issues in the past where the shunt’s setting changed inexplicably.

Medtronic Strata II valve.

The PS Medical® Strata® valve is an adjustable flow control valve in which the resistance properties of the valve can be changed non-invasively by the caregiver. It is designed to minimize overdrainage of cerebrospinal fluid (CSF) and maintain intraventricular pressure (IVP) within a normal physiologic range, regardless of patient position. The normally closed Delta® chamber mechanism opens in response to positive ventricular pressure. Working with the ball and spring valve mechanism, overdrainage is minimized by utilizing the principle of hydrodynamic leverage.

Please familiarize yourself with where Avery’s shunt is and the path it takes to her abdomen.

What are the symptoms of shunt malfunction ?

One or some of these are:

  • persistent headache
  • vomiting without diarrhea
  • double vision
  • irritability
  • tiredness
  • fits

Children and adults may experience headaches, vomiting, irritability and tiredness. Swelling along the shunt tract occurs less frequently. In the event of an abrupt malfunction, a child may develop symptoms very rapidly, in a matter of hours or days. Without treatment, coma, and even death, may result.

Older children and young adults may also become increasingly tired, have difficulty waking up and staying awake, experience personality changes and, unless treated promptly, may go into a coma.

Also watch for symptoms like unusual vomiting, irritability, sleepiness and decreased interest in eating.

Shunt malfunction is usually a problem with a partial or complete blockage of the shunt. The fluid backs up from the site of the obstruction and, if the blockage is not corrected, almost always results in recurrent symptoms of hydrocephalus. Shunt obstruction can occur in any part of the shunt. Most commonly in children, the ventricular catheter (the one in the brain) becomes obstructed by tissue from the choroid plexus or ventricles. In adults it is more often the distal catheter (the one that drains the fluid to another part of the body) that becomes blocked. The catheters or the valve may become blocked with blood cells or bacteria. Shunts are very durable, but the components of the shunt can become disengaged or fractured as a result of wear or as a child grows, and occasionally they move from where they originally were placed. More rarely, a valve will fail because of mechanical malfunction.

Shunt infection usually is caused by a person’s own bacterial organisms; it is not acquired from exposure to other children or adults who are ill. The most common organism to produce infection is Staphylococcus Epidermidis, which is normally found on the surface of the person's skin and in the sweat glands and hair follicles deep within the skin. Infections of this type are most likely to occur one to three months after surgery but may occur up to six months after the placement of a shunt. People with ventriculo-peritoneal (VP) shunts are at risk of developing a shunt infection secondary to abdominal infection, whereas people with ventriculo-atrial (VA) shunts may develop generalized infection, which can quickly become serious. In either case, the shunt infection must be treated immediately to avoid life-threatening illness or possible brain damage.

Other Shunt Complications may include the shunt system draining fluid at the wrong rate. Overdrainage of the ventricles can cause the ventricle to decrease in size to the point where the brain and its meninges pull away from the skull or the ventricles become like slits. If blood from broken vessels in the meninges becomes trapped between the brain and skull, resulting in a subdural hematoma, further surgery is required. This is most common in older adults with normal pressure hydrocephalus (NPH). Slit-like ventricles, sometimes called slit-ventricle syndrome (SVS), are most commonly a problem in young adults who have been shunted since childhood. Underdrainage of the ventricles can fail to relieve the symptoms of hydrocephalus. To restore a balanced flow of CSF it may be necessary to place a new shunt containing a more appropriate pressure valve. For those who have externally adjustable or programmable valves, the balance of flow can often be restored by re-setting the opening pressure.

SHUNT MALFUNCTION OR FLOW ISSUES WILL PROBABLY NOT BE EVIDENT IMMEDIATELY AFTER AN INJURY. IT COULD BE HOURS OR DAYS BEFORE SYMPTOMS OCCUR, WHICH IS WHY I SHOULD ALWAYS BE CONTACTED IF AVERY RECEIVES ANY KIND OF BLOW TO HER HEAD. Since she has suffered serious brain injury, and her health and well-being rely on the normal functioning of a sensitive medical device, she is also going to be significantly more sensitive to head injuries than other children, and a some ice and a quick once over is not sufficient.

Avery at 2 months, 2 days. Exactly 2 months after shunt was placed.

2 years after shunt placement.

I also gave them copies of two leaflets we got from Medtronics (the company that makes Avery's valve) with information about her shunt and symptoms of malfunction, obstruction, infection, overdrainage, etc.
They all seemed very surprised that we would know so much about all this medical stuff, because some parents don't seem to educate themselves about the various medical conditions their children live with. I have met some. I met the mother of a little girl who had hydrocephalus in the neurosurgeon's office a couple of years ago, and she didn't know where the shunt was or what kind it was, and it surprised me. We have had too much experience with doctors to trust them to remember everything or catch everything. Our children need their parents to be on top of all of that!
Anyway, it was a good meeting, and I feel better about sending Avery back to school. Especially since she was so excited to go back yesterday!


Anonymous said...

Great detailed info about Avery and her conditions.

Unknown said...

Well done you are brill!

SuzanSayz said...

I'm happy that you were able to turn this into a positive experience Josephine. What a great job you did of turning lemons into lemonade!