Nurse Grace

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Grace Chimene Pediatric Nurse Practitioner. I am interested in the health and safety of children. BSN RN University of Texas School of Nursing 1983 MSN University of Texas Medical Branch Pediatric Nurse Practitioner 1987

Monday, March 31, 2014

Safety Tips for Children With Vision Loss

 Grace's Notes:  
Seattle Children's Hospital provides helpful information, educational materials, and tools for parents of children with Special Health Care Needs.  This safety tip sheet concerning safety tips for children with vision loss is compiled from Seattle Children's Hospital and the Safe Kids org.   Safety for kiddos with vision loss is especially important to me.

My first child was born with a birth defect in one eye called  persistent hyperplastic primary vitreous (PHPV).  One eye was small (microopthalmia) and blind. Most of the time the pediatricians will pick up a defect like this while performing a Red Reflex test.  
I didn't notice the defect until he was one month old.  
He had two surgeries but his sight could not be saved in that eye.  He was so cute.  The one eye  looked as though he was winking all the time. 

Safety precautions for a child with vision in one eye involve injury prevention due to decreased peripheral vision.  In other words "don't poke your eye out!"

As soon as he could toddle around he wore those adorable glasses with the band to hold them on his head.  All thorny bushes were banned from the yard, all poke your eye out toys were banned from our house and generally he played and toddled around with his glasses without a care in the world.

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Safety Tips for Children With Vision Loss

Tips
o   Give a copy to the people who care for your child.
o   Talk with your child’s care team including your child’s health care provider, school nurse, principal, teacher, school staff and other caregivers.
o   Involve your child. Talk about the steps you’ll take. Ask your child “what if” questions to help them learn to problem solve.

Fall Safety
o   Are home and play spaces well lit with lighting in hallways that is bright and even?
o   Do pathways provide clear access throughout the home? Are they cleared of throw rugs, worn 
carpet, low tables, and electric cords? (Electric cords can be taped to the floor).
o   Using High contrast colors and shapes in your home may increase the visibility of key objects for your child. Choose colors that your child can see well. White or bright yellow against a black background often provides the strongest color contrast.
o   Is there a nonskid mat or no-slip strips and grab bars in the bathtub?
o   Are there hand rails on any raised platforms and stairways? 


Fire and Burn Safety
o   Take steps to prevent your child from contact with fire hazards in the home such as space heaters, grills and fireplaces.
o   Do all electric outlets have covers in them? (For very young children).
o   Do you have a fire escape plan for your home? Talk about and practice a fire escape with your whole family. Plan for places such as school, places of worship, theaters, and stores. Review your child’s school fire escape plan to make certain help is planned for your child.
o   Include a special meeting place outside your home in your plan where all family members can meet in case of fire. Choose a spot that is easy to find with points of reference for your child. 
o   Teach all family members and other caregivers how to help your child escape in a fire.
o   If your child is not able to see to any degree, teach your child to exit your home by using their 
hand or foot to follow along a wall or crawl along the floor. Practice this.
o   Teach your child to dial 911 and to provide information for emergency services.
o   Do all adults and older children know where the fire extinguisher is and how to use it? 
Water Safety
o   Always watch your child or have an adult closely watch your child in all water activities even if there is a lifeguard on duty. A brightly colored swimsuit will make your child easy to spot.
o   Tell the lifeguard that your child is blind or has vision loss.
o   Have your child wear a life vest in a boat, on a dock and near open water like lakes or rivers. 


Pedestrian Safety
o   Work with your community to assess the need for audible signals to be installed at busy or complex intersections. Ask for safety signs to be posted in your neighborhood that informs drivers that a child with vision loss plays and lives in the area. 


For More Information
          Keeping Children with Special Needs Safe in the Home from Safe Kids and the MetLife Foundation. A series of safety videos highlighting how you can take precautions in your home to help prevent injuries to children with physical, developmental or cognitive disabilities http://www.safekids.org/safety-basics/special-needs/


Saturday, March 29, 2014

A GUIDE TO PEDIATRIC PROCEDURES AND HOSPITALIZATION



Grace's Note:  The Madison's Foundation is an inspiring site created by parents to help families of children with rare diseases.  This foundation also provides money to support medical research concerning rare diseases.  Take a look at the site and see how they can help your family or patients make connections with other families, provide education, share stories and information.  
This site features a M-POWER® RARE PEDIATRIC DISEASE DATABASE.  This database search engine is kept up to date by the UCLA medical professionals.   My only concern is you have to know how to correctly spell the condition, always my weakness.   When you find the disease or syndrome you are interested in, there is a nice template that explains symptoms, treatments and resources.

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a page from:   Madison's Foundation

Madison's mom, Marcy, and Madison's anesthesiologist, Sam, have put together some basic tips on helping you and your child navigate the medical system. Hopefully these tips from two people who have been there will help you guide your child through common procedures with the least amount of discomfort and fear. 
Dealing with Doctors
  1. In order to make the best choices for your child’s health care you must be well informed. Ask as many questions as you need to so that you fully understand your child’s condition. Ask your doctor for books, pamphlets, web sites or any other sources that will help you learn more and, in turn, make better decisions for your child.
  2. Marcy learned early on to keep a journal with questions for her doctor written down in advance of Madison’s appointments. The information at the doctor’s office can be overwhelming and it will be helpful to write everything down so that you can go over it again later. You may also want to ask your doctor if you can bring in a tape recorder so that you are sure you do not miss a thing. You can also use this same journal to make notes on your child’s health. Keeping track of how your child feels or particular symptoms that may occur can help you and the doctor monitor their progress.
  3. Ask your doctor if they know of any doctors, hospitals or research groups that are currently researching your child’s illness. Especially if your child has been diagnosed with rare or uncommon disease, you will want to stay on top of the most recent advances.
  4. If your child has just recently been diagnosed with a disease or illness, you may want to visit another doctor for a second opinion. This is a common practice and you should never feel uncomfortable about seeking out a second opinion and asking your doctor for copies of your child’s files for this purpose. Most insurance companies will pay for a second opinion if you go to a doctor within your network.
  5. Confirm all doctor appointments the day before. Marcy learned this lesson the hard way once when she had prepared Madison for a test by following her doctors orders which were to not allow Madison to eat anything after a certain hour the night before and in the hours leading up to the test. When they arrived at the doctor’s office they were told that the appointment had to be rescheduled for the next day so Marcy had put Madison through this routine again for the second night in a row.
{mospagebreak title=Dealing With Hospitals}
Dealing with Hospitals
  1. Before going to the hospital, try to give your child as muchhonest preparation as possible with an age-appropriate description of what is going to happen in the hospital. They may have multiple admissions in the future and multiple procedures. It is important for them to be able to trust you. Tours are often available prior to admission to familiarize your child with the hospital, which will make them feel more comfortable.
  2. Keep a special bag with toys for the hospital and some art supplies.
  3. Decorate your child’s surroundings with pictures of family, friends, pets and artwork. This will be extremely comforting to your child.
  4. Bring them their own clothes. This also allows for familiarity and control with the situation. It can make a huge difference.
  5. Video games and VCR’s can be requested for your room. Bring your child favorite videos from home. Starbright Foundation also offers services such as portable computer monitors and games at many hospitals.
  6. Empower your child, if possible, by allowing them to make some decisions about their care even if they are small decisions. For example, Madison decided that she preferred to have her blood pressure taken on her leg… or maybe they would like to choose in which arm they’d like to put the I.V. Having some control of the situation may make it more bearable for them.
  7. Become friendly with the staff. Be free with praise and compliments. Cordial relationships with everyone on the health care team can only be helpful to your child.
  8. Ask your doctor if a specialist will be consulting on your child’s case and inform your doctor that you would like to be there when they see your child. Make sure you are able to inform that specialist of your child’s special needs. Ask as many questions as you need answered. You may also be able to schedule a meeting with the specialist.
  9. Pediatric pain specialists are available at many hospitals. It is important to have a constant level of pain relief for your child if they require it. Catching up to the pain is very difficult. It is always better to treat pain before or as it is just beginning.
  10. Have your journal handy at all times.
  11. Take a night off from the hospital. Even though you want to be there with your child every moment, it will eventually physically and emotionally wear you down. This happened to Marcy on Madison’s first extended stay in the hospital. She was so worn down that she ended up getting sick and had to be apart from Madison for longer than she wanted. Sometimes children and their parents are in the hospital for days, weeks or months. It is important to spend a night at home once in a while so that you can be at your best for your child. Ask a family member or close friend to relieve you periodically so that you can recharge. Remember that your mental health is critical to your child’s health.
  12. Stay on top of your hospital bills. If you feel like you are getting in over your head, talk to the billing office sooner rather than later. Often they can work out a payment plan that will allow you to defer payment and prevent a problem.
  13. Before you leave the hospital to go home make sure that you have:
    • A list of medications and their doses
    • A copy of the discharge summary
    • Copies of recent labs and medical reports
    • Get a copy each radiology study (MRI, CT Scan etc.)
    • Keep all receipts. Your insurance company may reimburse you for expenses
  14. It may be possible to arrange for a reduced rate for long-term hospital parking. Ask hospital administration
{mospagebreak title=General Tips}

Friday, March 28, 2014

Poison Prevention and Medication Safety For Teens With Special Needs


Grace's Note:  Special needs kids take a lot of medications.  It is hard to keep track of all the new meds and old meds.  I have been trying to get a take back program at pharmacies, but to no avail.  The powers that be don't mind batteries being recycled but medications just build up in the medicine drawer.  
On another note, prescription drug abuse is rising and teens and young adults are especially vulnerable.  Keep the meds up and away.  Throw away the old meds. One suggestion is to mix old meds with something disgusting  and toss them in the trash.  That will have to do unless your city has a take back program.
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This page was compiled from: Texas Poison Control and Safe Kids.
Poison Prevention
·      Keep cleaning products out of sight and reach.
·      Store cleaning products in their original package.
·      Teach your teen what is safe and not safe in your home.  Use stickers, pictures or stories to help your teen understand.

Medicine Safety
Medicines are the leading cause of poisoning. Special needs teens sometimes take different medicines every day. Call your health care provider if you have any questions about a medicine. 
·      Store medicines safely
o   Medicine can be stolen or abused.  Do not leave medicine out.
o   Use locked cabinets.
o   Do not leave out loose pills or medicines
o   Put medicines safely away after each use.
o   Keep medicines in their original packaging.
o   If your family uses a weekly pillbox, put it safely away after each use.
·      Give medicines safely
o   Teach your teen: Do not share prescription medicine
o   Prevent giving an extra dose of medicine
§  Use a medicine check off list.
§  Tell others when a medicine is given
§  Read the label, follow the directions and measure the dose of each medicine carefully.
o   Always turn the light on when giving medicine.
o   If you suspect your teen has been poisoned or taken an overdose, take the product to the phone and call 1-800-222-1222. If your teen has collapsed or is not breathing, call 911.
·      Keep an up to date medication list
o   At home
o   At school
o   At the Children’s Comprehensive Clinic.
o   At your teen’s medical specialists and pharmacy.


Go to http://www.safekids.org/safety-basics/special-needs/ for more safety information and videos on safety.




Thursday, March 27, 2014

TRANSPORTING A CHILD WITH CEREBRAL PALSY


Grace's Note:  Useful safety recommendations for medically fragile children has been one of the most difficult items to find on the web.  The American Academy of Pediatrics offers these suggestions.  Another good web site is the Indiana School of Medicine Automotive Safety Program.  Their PDFs on safely transporting children with CP and Transporting Children with Wheel Chairs are excellent.

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A page created from: Transporting a Child With Special Needs from the American Academy of Pediatrics by kids health.

Question and Answer from the American Academy of Pediatrics
Q: How long should I keep my child with cerebral palsy rear facing?
Because your child may have poor muscle control she should ride rear facing longer than most children. Rear facing helps support your child’s entire body and protects her better from an injury, especially to the spine. Most new convertible car safety seats allow children to ride rear facing up to 30-35 pounds. Move your child into a convertible seat when she outgrows her infant-only seat.
Q: What car safety seat should I use when I turn my child with cerebral palsy around?
Use a car safety seat that has harness straps until your child outgrows it. A convertible car safety seat can be used forward facing until your child weighs about 40 pounds and is about 4 years old, or until your child’s shoulders are above the top harness slots. A convertible seat that can be tilted back in the forward-facing position will help keep your child’s head and back against the seat. You must check the manufacturer’s instructions to determine if your convertible seat can be tilted back in the forward-facing position. A combination car safety seat will also allow your child to remain in a harness up to 40 pounds. Some convertible and combination seats have harnesses that fit children over 40 pounds. A combination seat can be changed to a belt-positioning booster seat when your child is too big for the harness.
Q: What if my child with cerebral palsy has trouble sitting up or cannot hold up her head?
If possible, keep your child rear facing. Riding rear facing helps keep your child’s head and back against the car safety seat. Your older child may need a convertible car safety seat that can be tilted back in the forward-facing position or a large medical car safety seat. Large medical seats have special padding for the head and trunk and may tilt back in the forward-facing position. You can place rolled blankets or towels along the side of your child’s head or trunk to prevent your child from falling side to side. Never put anything behind your child. If your child needs more support for her neck, a soft cervical neck collar can be used to help prevent her head from falling forward. A hard collar should be removed during travel. Never recline the vehicle seat more than allowed by the manufacturer.
Q: Will a large medical car safety seat fit in my car?
Large medical car safety seats will fit in most passenger cars. Most large medical car safety seats require use of a top tether (a strap with a hook that connects to a tether anchor in your car). You may need to get special heavy duty tether anchors installed in your car to use a large medical seat. You should be able to get the special tether anchor hardware for your car from the car safety seat manufacturer.
Q: What if my child has a tracheostomy?
Use a car safety seat with a five-point harness. A five-point harness has harness straps that come over your child's shoulders and hips and buckle into a crotch strap. Do not use a car safety seat that has a tray or a shield. In a crash or sudden stop, the tray or shield could hit the tracheostomy and hurt your child's neck or throat.
Q: What if my child with cerebral palsy has casts because of surgery or botox?
Your child will need a car safety seat that has enough room to fit the cast. Your child might be able to use his own car seat but make sure to try it before you leave the hospital. If the cast prevents your child from sitting, your child may need a special car bed or child restraint. Ask your child's nurse if there is a special needs car seat program in your area that can help find the right child restraint or car bed for your child.
Q: What if my child with cerebral palsy has pain or pressure areas on her skin when she rides in a car safety seat?
Contact your doctor or rehabilitation therapist to help you determine what is causing the pressure or pain. Your child may need a different car safety seat that fits better, need to be repositioned in her car safety seat, or need a seat that offers more padding. Only use padding that comes with your car safety seat. Do not add extra padding behind your child's back and bottom. Your child's car safety seat might not work as well in a crash.
Q: What if my child with cerebral palsy has seizures?
Use a car safety seat that has harness straps until your child outgrows it. The harness straps will provide support to your child during and after a seizure. Your child may benefit from a large medical seat when she outgrows her convertible or combination seat. A large medical seat has a harness for children over 40 pounds.
Q: When can my child with cerebral palsy ride in a booster seat?
Your child may be able to use a booster seat if he can hold up his head and sit without any help. Use a booster seat after your child has outgrown a car safety seat with a harness. This is usually when a child weighs about 40 pounds and is about 4 years old. The booster seat helps lift a child up so the adult seat belt fits properly. Never use a booster seat with a lap belt only. Booster seats need both lap and shoulder belts. Consult an occupational or physical therapist if your child does not have good control of her muscles and has outgrown her car safety seat.
Q: When can my child with cerebral palsy use a seat belt?
Your child must be able to hold her head up and sit without any help in order to use a seat belt. She must also be able to sit all the way back against the vehicle seat without slouching, bend her knees easily over the edge of the seat, and wear the lap/shoulder seat belt flat and snug on her upper thighs and between her neck and shoulder. This is usually when a child is 8-12 years old is about 4'9" tall.
Q: What if my child uses a wheelchair?
If possible, your child should ride in a car safety seat in your vehicle instead of the wheelchair. If your child must ride in a wheelchair, make sure to ask your child’s occupational or physical therapist about a transit option model. A transit option wheelchair has been crash tested so it is safer to use in a vehicle. It also has many features that make it easier to use and tie down in a vehicle. Fasten the wheelchair to your vehicle with a tie-down system that meets safety standards. The tie-down location on a transit wheelchair is marked with a hook symbol and is easy to find. The wheelchair should face the front of your vehicle. Make sure your child uses a separate shoulder/lap belt.
Q: Where should I put medical equipment in the car?
Place medical equipment such as apnea monitors and oxygen tanks on the floor of the vehicle wedged with pillows, foam or blankets. Equipment can also be tied down with unused seat belts. There are no straps or belts specifically made for securing equipment in a vehicle.
Apply for a handicap-parking permit on behalf of your child if it is hard to get her in and out of the car safety restraint. Handicap parking often allows more space to maneuver.
Never leave your child alone in a vehicle, even to do an errand that should only take a minute. Your child's safety is worth the effort to remove her from the car safety seat/restraint, take her with you, and then
secure her again when you return.