2012 Holiday Party

img_0782_19916421052_oOn Saturday, December 15th, 2012 we hosted our first Special Needs Holiday Party

Our friends at Courtyard Austin Northwest Arboretum generously donated space for the party.

We held a book drive and received many wonderful books that enabled us to have gifts from Santa for each of the kids. All books that were not used were then donated to Dell Children’s Medical Center. We have already started to collect books for next year.

Our wonderful music therapist, Danielle with Roads of Connection Music Therapys, led the group in some sing-a-long holiday music. The kids all got to hear their favorites.

Then of course, we had a very special guest – SANTA!

We had such a great time and we are already looking forward to and planning next year’s party. Stay tuned in fall 2013 for more details. We hope to be able to host even more families next year.

Sadly over the years we have lost the photos that were taken for this event. We have a few from our personal photos, but the professional photos have been lost.

How to Reduce Drooling?

Many of our kids deal with drooling and there are lots of different approaches to help. First off however, it is really best to determine where the drool is coming from.

Is the drool from salivary secretions? Is the drool from allergies? Is the drool actually refluxed food? Is the drool not really a drool problem, but actually a tone issue? There are lots of things that lead to what can be considered a drooling problem. Below we will discuss each of these different types of drooling. Before we get into details however, please note that we are NOT doctors. Many of the suggested treatments and medications have side effects. Before taking any medication please consult with your doctor.

Salivary Secretions
Salivary secretions are pretty common with kids that have special needs. There are a few different approaches that are generally considered. There is a medication called Glycopyrrolate or Robinul. This medication will thicken the secretions. For some children this makes it easier to then swallow or cough up. If thickening does not work, there is a patch called Scopalomine. Using the patch for drool is an off label treatment; the patch is intended for sea sickness. The patch will work to dry out the secretions much like an Antihistamine or Diphenhydramine such as Benadryl which are also often used to help dry out secretions. If the medications help, but you need more there are more aggressive treatments as well. Some people have had a lot of success using Botox in the salivary glands. The injections of Botox into the glands can be uncomfortable/painful and requires the child to be very still. Typically the doctor doing the injections will require some form of sedation. There are 2 larger and 2 smaller salivary glands. A doctor may need to do a few rounds of Botox to determine which glands are most active as well as the amount of Botox needed to make a difference. A Botox injections last a few months, this is not a permanent solution. If Botox works well, a doctor may want to remove the salivary gland all together. This is a surgical procedure, but some people opt to so the larger procedure once as opposed to getting Botox every few months. Before a doctor is willing to do this surgery, they typically want to start with at least a few rounds of Botox.

If drooling is determined to be a result of allergies there are a few options to consider. You can try things like Antihistamines or Diphenhydramines. There are Guaifenesin (Mucinex). There are many nasal sprays, nasal steroids, and breathing treatments that can be used to help with allergies as well. You may consider trying a vaporizor or a humidifer. If allergies are an issue there are many hypoallergenic products as well including bed linens, cleaning products, clothing and much more.

Many children with special needs have reflux. It is easy for frequent reflux to be confused with salivary secretions. Being that there is always saliva in the mouth, it can be hard to determine the difference. Usually doctors will suggest treating salivary secretions first (unless the child has known and/or sever reflux issues). If the treatment is unsuccessful the doctor may then look into reflux as the source. There are many medications available to aid with reflux (some over the counter, some prescription) your doctor can help determine the best one. Just like other medications, it may take a few to figure out what will work and how much/often you need it. In the case of severe reflux a doctor may recommend a more invasive procedure called a Nissen Fundoplication often referred to as a Fundo or Nissen. This procedure will tighten the sphincter making it much more difficult for stomach contents to go back up the esophagus. Many people that get this procedure expect that nothing will be able to pass the fundo. Depending on how tight the fundo is wrapped, it may still be possible for a child to reflux/throw up after the procedure. There are tests to determine if the fundo is in tact, but it is not unheard of. If your child has a fundo and continues (or later begins) to throw up, be sure to let your doctor know. They will most likely want to run an Upper GI or at least get some xrays.

For children with tone issues (rigid, dystonia or spastic) drooling may be a much different cause. For children that are not able to control muscle movement, they may flex muscles along the throat, abdomen, or even their tongue and jaw leading to increased reflux and/or salivary secretions. Typically all of the above treatments are considered, but depending on the tone of the child some of these treatments may not make much of a difference. In addition to treating the secretions, there are medications and treatments used to help with tone. A common medication used is Baclofen. Baclofen can be given in many different ways. Usually it will start out as an oral/gtube medication or sometimes it can be given under the tongue. If there are good results with Baclofen a pump can be placed into the spine to administer it directly into the nervous system. There are many other medications on and off label that doctors may suggest to help with tone. Sometimes anti seizure medications are used. Sometimes doctors will try anxiety medications (clonazepam, diazapam. ect.). Sometimes you may have a muscle relaxer such as Dantrium suggested. In cases where a child flexes the throat muscles a lot, a doctor may suggest tracheostomy tube to bypass the mouth all together.

This article begins to break down some of the common causes and treatments for drooling. However, there are many more out there. If you have any information you would like to add please feel free to comment and/or email us. And again, we are not doctors. Please consult with your doctor before trying any of the treatments discussed above.

New information shared by a MOM on 11/14/2013:
Did you know that Papaya Enzyme can help your child with CP stop, and/ minimize drooling?!? My daughter has been taking it for 4 years, and yes it works! It’s a simple papaya enzyme vitamin that can be purchased at any drug store. Her neurologist researched and said it was fine. I recently went 2 days without giving it to her. I wanted to see if it was still working, or maybe drooling went away. By day 3, there was drooling spit everywhere, soaking wet shirt! Yes, she’s back on it and her clothes are a lot dryer! She still drools occasionally but, nothing like she does with out the papaya.

School, but My Child is Only 3?!

Many of us come home from the NICU and enter a whole new world. We have countless doctor appointments, monitors, medications, etc. A lot of us also are introduced to a form of early intervention services for our child. In Texas these services are call ECI, each state has their own abbreviation. Early intervention services are often done in your home or your child’s day care. Depending on your child’s needs they may see one to MANY specialists in the ECI program. Specialists are generally therapists, but also include social workers, developmental guides, etc.

We received therapy services in our home shortly after getting home from the NICU. Casey started with physical therapy, then we added speech, vision and eventually occupational therapy as well. After we moved from California to Texas we added a play therapists as well. I had never heard of play therapy, but it’s actually a pretty cool concept.

It took us a few months to get used to having therapists come into our home. Once we got used to it however, they became part of the family. We relied on them for so much more than just their therapy skills. They were able to help us find the best types of toys and adaptive equipment for our child. They were able to help us find doctors in the area that could handle our needs. Some even helped my husband find adult resources when he hurt his back. They also connected us with some local organizations and families.

casey_ECI_gradAround Casey’s 2nd birthday we found out that as of a child’s 3rd birthday they no longer qualify for ECI services. The law states that as of a child’s third birthday they transition to the school district for their services. I don’t know if this is all states, but I know it is most states for sure. It’s hard enough for a parent of a healthy child to send their child off to school when he/she is 5. The thought of sending my child with special needs to school at 3 was just too much for me.

As it turns out, the school does take over services, but in many cases these services can still be done in the home or day care. For some children they enter what is called a special needs pre-school program (PPCD in Texas, each state has their own abbreviation).

We talked with the school administrators and with Casey’s medical team and opted to do Home Bound. Not to be confused with Home School. Home Bound is when a child is not able to attend school (usually for medical reasons). The school will then send services to the child’s home. Home School is when a family chooses to keep a child home and typically (not always) one of the primary caregivers/parents will assume the role of educator. For children Home Schooled there are curriculum guidelines in place for the home educator, but the school is not as involved.

In addition to the people providing the services changing, there are a few other major changes when you transition from early intervention to the school district. We were getting daily written progress reports from the ECI therapists. We could see what they were working on, and how they felt Casey was doing. When we moved to the school services the progress reports are not daily. Instead we get one per semester from each of the different therapists. We have an opportunity once a year (more if needed/requested) to meet with the team to discuss progress, set goals, and work on a plan for the next year. This process is referred to as an ARD in Texas, each state will have it’s own name. Another major difference is that ECI services were all year, the school services work on a school calendar. Children can request (and some will receive) extended school year services, but even those are not all summer. The ECI services are focused around having a child interact with the environment, comfort, and safety. The school is focused on safety and finding ways to get the child to reach their educational goals. Depending on your child these may not seem very different at all, while others may seem like complete opposites.

casey_schoolThe primary goal for the school is to find a way to get your child to attend school, and if possible they want to have your child in a mainstream (inclusive) classroom. What does this mean? Once a child is medically able to attend school, the school will have a few options. The school, parents and medical team work together to determine which of these options is safest and will provide the best environment for the child to learn. This can be anything from the child being completely emerged with other children in the school and using adaptive aids in the classroom, a child being mostly integrated, but being pulled out from time to time to work one on one (or in a small group) with different therapist, a special needs classroom with more teachers/aids to better meet the additional needs of the children. or a more private medically fragile environment where the child has his/her own nurse, and there are only a handful of other students all with similar complex medical conditions. Not all schools offer all of these options. Your district may have your child attend a school not near your home in order to meet your child’s needs. If, for example, your child needs a medically fragile classroom and the district does not offer one, your child may stay homebound, the school may create a medically fragile environment or may be transferred to another district.

Our daughter needed a medically fragile class, and our district did not have one. After a lot of work, our district created an environment based on Casey’s needs. She started attending a couple of hours a week last year. It was very scary to let her go to school. She takes her nurse with her, and she loves it. She gets to sing songs, color pictures, learn about letters, numbers, animals, and all kinds of fun stuff. We still have a hard time leaving her at the school and coming back home, but that’s just us missing our baby. She is growing up and we could not be more proud of her. I just wish we could slow it down.

Article originally written for Preemie Babies 101

Who’s Who?

After having a child with special needs, you will find yourself learning a lot more about the medical field than you have ever imagined. It can be very confusing. Often times you need to see a specialist, but which one? Here is a quick guide that we hope helps to take out some of that confusion:

  • Allergy – Specializing in treatment of allergies. Allergies are a hypersensitivity disorder of the immune system – usually triggered by an environmental substance.
  • Anesthesia – Specializing in sedation, usually in an operating setting.
  • Cardiology – Specializing in the heart and all things related to the cardiovascular system.
  • Cardiothoracic Surgery – Surgery that specializes in heart and cardiovascular related procedures.
  • Dentistry- specialized in prevention, treatment, and diagnosis of diseases and conditions related to the oral cavity (mouth)
  • Dermatology – Specializes in skin
  • Emergency Medicine – Usually found in the ER
  • Endocrinology- Specializing in the endocrine system, related to hormones (often the thyroid or other glands)
  • Gastroenterology- Specializing in the gastrointestinal tract (digestive tract).
  • Genetics- Specializing in genetic markers, diseases, and conditions
  • Hematology – Specializing in blood related issues
  • Immunology- Specializing in the immune system
  • Infectious Disease- Specialize in hard to diagnosis infections.
  • Neonatal ICU (Intensivist)- Usually found in NICU and similar units in hospitals
  • Neonatology- Specializing in neonates (babies)
  • Nephrology- Specializes in Kidneys
  • Neurology- Specializing in the brain
  • Neurosurgery- Surgeon that specializes in brain surgeries
  • Oncology- Specializes in diagnosis, treatment and prevention of cancer
  • Ophthalmology- Specializes in the eyes (can do surgery)
  • Optometry- Specializes in the eyes (cannot do surgery)
  • Oral and Maxi Facial- Surgical specialist for diseases, injuries and defects in the head, neck, face, jaws and the hard and soft tissues of the head and face, part of the dental branch
  • Orthodontics- Additional dental training for aligning teeth and jaw
  • Otolaryngology- All things ear, nose and throat related. Also called ENT
  • Palliative- Specializes in relief from the symptoms, pain, and stress of serious illness
  • Pathology- Specializes in the body’s response to and repairing of injury to cells and tissue
  • Pediatric ICU (Intensivist)- Usually found in PICU and similar units in hospitals
  • Pediatrician- Primary care, specializing in children and babies
  • Podiatrist-Specializes in feet
  • Physical Rehab- Specializes in restoring functional ability and quality of life to patients with physical impairments or disabilities
  • Plastic Surgery- Specializes in correction and restoration of form and function. Not just cosmetic, also reconstructive, hand, burns, cleft, and much more.
  • Psychiatry- Specializes in emotional and psychology disorders, may provide chemical intervention
  • Psychology- Specializes in emotional and psychology disorders, may not provide chemical intervention
  • Pulmonary- Specializes in the respiratory system (breathing)
  • Radiology- Specializes in imaging
  • Rheumatology- Specializes in joints, muscles and bones
  • Urology- Specializes in urinary tracts, and male reproductive systems

Go Bags for Children with Special Needs

When most people hear the term “Go Bag” they think of either doomsday preppers or pregnant women.  These are both types of go bags, however, this article is referring to another type of go bag- “Go Bags for Children with Special Needs”.

A go bag is exactly what it is sounds like.  A bag that you can grab and go at a moments notice (whether that is the end of the world, delivery of a new baby, or leaving the house – or room- with a child with special needs).

There are a few items that we all need, regardless of our child’s special needs:

  • A change of clothes is always a good idea
  • Any type of hygiene products are a must (toothbrush, soap, etc.)
  • Diapers and wipes
  • Something your child enjoys (books, games, music, etc.)
  • Comfort items (blankets, pillows, stuffed animal, etc.)

There are some emergency items I suggested as well:

  • Ambu Bag
  • Alcohol Wipes
  • Gloves
  • Replacement Gtube (the replacement kits usually include syringe, gauze, extensions, and everything you need – minus the water)
  • Replacement Trach (the replacement kits usually include syringe, gauze, extensions, and everything you need – minus the water)
  • Small First Aid Kit
  • Water
  • Epipen
  • Seizure Medications
  • Heart Medications
  • Benadryl
  • Pain Relief (medications, heat, ice, pressure)
  • Flashlight

Of course if your child does not have a trach, gtube, seizures, etc. you will not need to pack ALL of these items.  Pack what pertains to your child.

Now that you have your basics, and your emergency items, you need the items you need/use every day.  Each person decides how much they need/want pack (a full day, a few hours, weeks. etc.).  If your child receives home health, some companies do have requirements for go bags.  You may want to check with your provider if you are not sure.

To pack for your needed and used items there is a simple little trick.  Grab an empty bag, box, or whatever.  When you go to bed place that empty container in a central location in your home.  The next morning as you go through the day grab double.  What does this mean?  Well, lets say your child is gtube fed and on formula.  In the morning you may get a new feeding bag, can/bottle of formula, and clean the extension.  Grab an extra bag, extra bottle, and an extra extension.  Stick the extras in your empty container.  As you go through the day and use more items, continue to stick the extras in your container.  Depending on how many bottles of food (and other items) your child goes through you may decide to  pack your bag for more or less time.

At the end of the day you will have a pretty full container.  You are not quite done.  Before packing these items into your go bag, make a list.  Next to each item write down not only the quantity packed, but also if there are any expiration details.  Most medications and/or food do expire.  Some require refrigeration (refrigerated items are typically not part of the go bag).  You will want to be sure to cycle out the items before they go bad, so keep the list handy as a reminder.  Maybe stick it to your refrigerator or someplace you will see it often.

As you go through the day you will notice some items that you may reuse over the course of a week or month (suction tubing, syringes, medicine cups, etc.).  You should grab at least one of each of these for the bag as well.

You are almost packed, just a few more things to do.  POWER!!!  Many of our kids devices require power.  If you are able to have extra chargers- add the chargers to the bag.  This is not usually the case.  If you do not have extra chargers, be sure to put something on the outside of the bag reminding you to grab the chargers (and keep them close by).  A car charger is always a great idea as well (if possible).

If your child has an advanced directive or other legal papers, you will want to keep copies in the go bag.  I suggest also keeping a copy of all the medications, providers, and major medical history in the bag.  You can use our Medical Forms template to create a quick and easy print out of this of information.

gobagThe go bag we use has multiple pockets.  I used a label maker to organize the bag.  It’s easy to know exactly where certain items are when I need them.  Most zippers have a loop or hole on one end.  You can loop the label through this hole and back onto itself.  When you need an item from your go bag it’s usually something you need urgently.  The last thing you want to do is spend time searching through all of the pockets.

Depending on your child, you may need to keep this bag at arms length at all times.  We personally keep it handy (near the front door), but we only take it with us when we will be gone for more than hour from the house.  I know many people that take it from room to room as they move around with their child.  Everyone will have their own comfort level when it comes to their go bag.  A go bag is a very necessary item for any child with special needs.  You will find as you pack your bag there will be some items you won’t be able to go without, while others you may not ever need.  It is always better to have them and not need them- than to not have them when you do need them.

How can I increase the calories in my child’s diet?

foodThere are many ways that one can increase calories. Before using any of these tips however, you should talk with your child’s doctor or dietitian to make sure that these are safe for your child.

There are 2 categories.
Food/Natural Substances (things you can go to your local grocer or vitamin shop to purchase)
Medical Interventions (these typically require a prescription and if not covered by insurance can be very costly)

Food/Natural Substances
Some items that we can add to our child’s food/formula that will add calories are the same things that we all love and avoid to prevent those extra pounds. Heavy cream, olive oil, butter, gravy, avocado, and ice cream to name a few. A small amount of these can add a lot of calories. These are empty calories. The calories you get from adding these will not help with your daily nutritional needs. You will need to be sure that you are giving a complete formula (or balanced diet) and/or vitamin supplements in addition to these items in order to insure your child is getting the nutrition that he/she needs.

Medical Interventions
Before using any type of supplement and/or medical intervention to add calories, we can not stress enough how important it is to work with your doctors. Some of these items are available without prescriptions, but to insure that they are used properly and safely for you child, a doctor needs to be involved in the dosing and creating a usage plan. Some of these items are things like Scandishake, Duocal, Pediasure Sidekicks, and many others.

Hand to Hold- Lunch and Learn material created/shared by dietician Leslie Ivy – High Calorie Baby Foods
Hand to Hold- Lunch and Learn material created/shared by dietician Leslie Ivy – High Calorie Recipes

Party Planning for Kids with Special Needs

IMG_1748Planning a party for any kid is a lot of work.  Planning a party for a child with special needs can be extra tricky.  It can be done though.  Each year I work very hard to try to come up with a wonderful birthday party for my daughter.  Over the years I have come up with some great, very accessible, party ideas.  Hopefully these ideas, and some Special Needs Party Planning Rules I have come up with will help others planning a party for their child with special needs.  This is just a few ideas, there are tons more out there, but this list should get you started.

Arts & Crafts Party-
Boys and girls can both have a lot of fun at an arts & crafts party.  You may have to recruit some help for kids with limited mobility.  Our daughter loves arts & crafts, a lot of the time she is just saying yes to the details and/or placement of things, but she loves to be part of creating something.  We did a princess craft party for her once.  Her and all of her friends made princess tiaras.  They had a great time.  We had lots of other things planned, but they all were having so much fun the entire party was spent at the craft table.   Boys could do something like pirate hats, or treasure chest or maps.  The list of arts & craft themes is limitless.  Just take what your child is into, and Google that topic with ‘Arts and Crafts’ you are sure to get a bunch of ideas returned.  An added bonus is that the crafts they make can be the party favors.  You don’t have to waste time and money on goodie bags that just end up being tossed later anyway.

Movie Party-
Not all theaters are willing to do this, so you may have to do some homework on this one.  If your child is into movies, you can find a theater that will let you have the entire theater for a showing.  They will usually work with you to make it quieter, brighter, etc. as well.  The trick we have found when we did a movie party was that to get them to be flexible without having to spend a fortune, we had to be flexible on the day and time.  It was worth it though, everyone had a great time.  We have a luxury theater in town that only seats 40, but the seats are extra big.  We are able to put a tumble forms with wedge in the seat, or her bean bag chair.  The lobby is nice as well for doing pre-movie parties.  If you have an iPic or similar style theater near you, it worked great for accessibility.

Many music therapy centers offer parties.  The fee is reasonable (in most cases) and if your child is into music, this can be a great party idea.  The therapist will get everyone involved, there is dancing (for those that can dance and move) and singing (or just making noises).  A great idea is to get the song list ahead of time.  For not much money you can get blank CD’s and burn the song list for all the kids coming to the party.  You can make and print out CD jacket covers too.  Maybe something like ‘Casey’s Party Mix- 2012’.   If you don’t have a music therapy center, you may be able to get a music therapists to come to your own as well.  You can tell the kids coming to bring their favorite noise makers with them.

Story Time
Many book stores have story time.  Some have party rooms as well.  If your child loves stories, start calling your local book stores or libraries.  You can rent the party room and invite the kids in for story time.  We did this recently and the kids had a blast.  In addition to story time, they were also able to make bookmarks.  The store we used had party bags for the kids, but before I knew this I was working on writing up a little story just for my daughter about a birthday princess.  I was going to have it printed and give that as a favor to the kids.  You can do something like that pretty easily.  I found some calendars in the dollar bin that had wonderful pictures.  I then cut the pictures out and used them as a base for my story.  You can scan those into your computer, or use drawings from your child.  Then there are some sites that will do professional printing/binding.  Or you can use Walgreens for nice but not crazy expensive.  There are lots of ways to print it out yourself at home too.  At craft stores you can find lots of affordable ways to create your own book.

Parks & Playgrounds
Many cities/towns are building accessible playgrounds now.  Search for accessible playgrounds in your area.  These are great places to plan parties.  I would suggest going ahead though, and making sure there is a place out of the weather in case your child needs a break.  I would also suggest making arrangements with the city.  Some cities require this, but required or not, it is recommended.  They can reserve the area for you so you don’t have to worry about kicking other people off the tables.  You can usually hire face painters, balloon animal clowns, jugglers, or whatever your child would like to see to meet you in the park.  Balloon animals make great party favors too.

Home Party
There is never anything wrong with a traditional party at home.  Invite friends and/or family and just focus on doing the things that make your child happy.  Even if that means watching a movie on tv, or just relaxing and being around loved ones.  A party does not have to be action packed.  Some kids prefer and thrive on quiet, controlled environments.  If that is your child, do force them into a party because that’s what you think you have to do.  Make sure their birthday is special, but don’t make it torture.

Virtual Party
Unfortunately, some of our kids spend birthdays sick and/or in the hospital.  That doesn’t mean they shouldn’t get a special day.  Hospitals are usually great about helping decorate the rooms (nurses are often very creative).  If your child is in the hospital, or too sick to be around others, have all of your family and friends take a picture.  Pick a theme (wearing silly hats, making funny faces, holding a stuffed animal, whatever).  Get them to send those pictures to you (email or printed).  Then on the special day show the pictures to your child and let them see how much everyone misses them and wishes him/her a special birthday.  If you have enough time you can even put them all together with the birthday song (or any song) and make a little slide show for your child to enjoy.  Or if your child is more responsive to sound, instead of pictures, have everyone send a voice message.  There are lots of ways you can safely celebrate your child’s birthday and include loved ones, without ever leaving the house or hospital.  My daughter loves when her friends make her pictures to hang in the hospital room too.  Personal touches like this make any day brighter, especially birthdays.

Regardless of how you celebrate your child’s special day, be sure to do something.  Just because our kids have special needs, does not mean they don’t still need to be kids.  They deserve a day all about them, and what makes them happy.  In my opinion, they deserve a lot more than just a day.  Here are a few rules to follow when planning a party for your child with special needs.  Hopefully if you follow these rules, everyone will have a great time.


  1. Don’t worry about what all of the other kids are doing for their parties, focus on what your child likes.
  2. A party does not have to follow a preset agenda.  Have enough things planned to fill the time, but if an activity runs long and people are enjoying it, be flexible.  You can always save the items you don’t get to for another day.
  3. Don’t focus on food.  Many special needs kids have special diets.  A lot of parties and holidays focus on food.  If you have a child that cannot eat cake, don’t center the party around the cake.  You can still have one for everyone else, and sing happy birthday, but don’t make it the focal point of the event.  Also, if other children with special needs will be attending, it is a great idea to let families know in advance what foods and drinks you will have.  This will give others warning in case they would prefer to bring their own snacks.
  4. If your child is hard to buy for, be sure to either provide guest with some ideas, or request them not to bring gifts at all.  Many parties have started collecting and making a donation in the child’s name instead of bringing gifts.  We don’t do gifts because in addition to being hard to shop for, our daughter is not physically able to open the gifts and her and her special needs friends are not able to stay focused on watching me or her dad open her gifts.  We would much rather use the party time for things she and her friends enjoy.
  5. Time!!!  If your child is not able to tolerate long periods of time, there is nothing wrong with having a party for only an hour (or whatever works for your child).  It’s much more important that your child has a wonderful hour, than a good one followed by 2 painful hours trying to calm them down.

Welcome to Holland

By: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

@1987 by Emily Perl Kingsley. All rights reserved

Sarnat Scale

scaleIn medicine Sarnat staging, Sarnat Classification or the Sarnat Grading Scale is a classification scale for hypoxic-ischaemic encephalopathy of the newborn (HIE), a syndrome caused by a lack of adequate oxygenation around the time of birth which manifests as altered consciousness, altered muscle tone, and seizures.

Level of Consciousness

State 1 Stage 2 Stage 3
Hyperalert Lethargic or obtunded Stuporous

Neuromuscular Control

State 1 Stage 2 Stage 3
Muscle tone Normal Mild hypotonia Flaccid
Posture Mild distal flexion Strong distal flexion Intermittent decerebration
Stretch reflexes Overactive Overactive Decreased or absent
Segmental myoclonus Present Present Absent

Complex Reflexes

State 1 Stage 2 Stage 3
Suck Weak Weak or absent Absent
Moro Strong; low threshold Weak; incomplete; high threshold Absent
Oculovestibular Normal Overactive Weak or absent
Tonic neck Slight Strong Absent

Autonomic Function

State 1 Stage 2 Stage 3
Generalized sympathetic Generalized parasympathetic Both systems depressed


State 1 Stage 2 Stage 3
Mydriasis Miosis Variable; often unequal; poor light reflex

Heart Rate

State 1 Stage 2 Stage 3
Tachycardia Bradycardia Variable

Bronchial and Salivary Secretions

State 1 Stage 2 Stage 3
Sparse Profuse Variable

GI Motility

State 1 Stage 2 Stage 3
Normal or decreased Increased; diarrhea Variable


State 1 Stage 2 Stage 3
None Common; focal or multifocal Uncommon (excluding decerebration)

EEG Findings

State 1 Stage 2 Stage 3
Normal (awake) Early: low-voltage continuous delta and theta Later: periodic pattern (awake) Seizures: focal 1-to 1-Hz spike-and-wave Early: periodic pattern with Isopotential phases Later: totally isopotential


State 1 Stage 2 Stage 3
1-3 days 2-14 Hours to weeks

Details published by MedScape Reference

Hypoxic Ischemic Encephalopathy (HIE)


HIEHypoxic Ischemic Encephalopathy (HIE) is a brain injury caused by a lack of oxygen. The injury affects the brain as a whole as opposed to a part of the brain. There are many things that can cause low oxygen levels in the brain. Most often HIE refers to new born infants. HIE can apply to many other brain injuries as well (near drownings, drug overdose, respiratory failure, smoke inhalation, choking, blood loss, etc.). Low oxygen levels may lead to an HIE diagnosis- not all low oxygen events result in HIE however.

1996 guidelines from the AAP and ACOG indicate that there must also be a profound metabolic or mixed academia in the cord blood (if obtained), the APGAR must be between 0-3 for more than 5 minutes, there needs to be evidence of neurological events (seizure, coma, hypotonia, etc.) and the event must involve multiple organs. Some cases of HIE do not fit the AAP and ACOG guidelines. There are many cases reported where the symptoms do not present until minutes, hours, or even days after the event.

HIE is scored on 3 levels, mild, moderate or severe. The most commonly used grade is the Sarnat Staging System developed by Sarnat and Sarnat in 1976. If you are interested in more details on how the Sarnat Stages work, please click HERE.

It is estimated that HIE is seen in 1-8 of every 1000 births. The mortality rate is said to be 25-50% (most deaths occur within the first week due to other organ failures, aspiration pneumonias, or systemic infections). Currently about 80% of infants that survive a severe HIE event suffer serious health complications. About 10-20% suffer mild-moderate health complications.


Symptoms vary for all HIE patients. I recently heard someone say “We know more about the brain than any other organ- and still we know the least about what to do with it.” This hits home with anyone dealing with a HIE. Tests can show that damage to the brain occurred. However, everyone reacts different and some brains seem to recover some of the lost or damaged areas while other brains do not. Many HIE patients will experience some muscle issues (Cerebral Palsy). It is often common to see many patients have problems with their complex reflexes (either the lack of reflexes, or over sensitivity). These reflexes include gag, suck, swallow, blink, startle and light sensitivity. Seizures, blindness and deafness are also often seen in HIE patients. Many patients will also suffer from heart, GI, and pulmonary complications. The severity of these symptoms will vary, and many patients have additional health complications as well (some secondary- some from the initial event).

Testing and Diagnosis

There are many tests that can be done to diagnose HIE. Some of these include Brain MRI, Head CT Scan, EEG, Head PET Scan, cord blood gas, and a handful of others. As previously stated however, diagnosing HIE is only the beginning. Each patient has to be monitored and fully examined for any type of medical prognosis.


In the past 3-5 years there has been a lot done to improve the expectations for brain injured infants. If the event is caught early, and treatments start within the first 6 hours, recent studies show that cooling (hypothermia) is giving these babies much better prognosis. Just as you ice a sprained ankle, if you cool a brain while it is swelling (or other organs swelling as a result of the brain swell) the cooling reduces the swelling leading to less global necrosis (cell death). Originally the cooling was done just on the brain by use of cooling caps. Now there are also cooling blankets used in NICUs to cool the entire body. The NICU staff has to maintain the core temperature very closely. Not all NICU’s or ICU’s have the cooling equipment. Most level IV and some level III NICU’s across the US are now able to cool babies that have suffered a brain injury.

Often after a full medical work up, HIE patients are given very poor expectations. Doctors don’t always know what to tell parents. A lot of this is due to advances in medicine. Doctors are able to revive and save many children that would not have previously survived. The life saving skills have improved, but the rest of the medical field left to support the survivors are still catching up. As time goes by there will hopefully be more statistics and data for HIE patients. As the data becomes available hopefully there will be a more consistent, productive approach to the treatment, prevention, and rehabilitation of HIE patients.

Currently doctors treat the symptoms. HIE patients often see a team of specialists. These specialists can include just about any area. Orthopedics often help patients dealing with muscle issues. The ortho may recommend medications to loosen or stiffen muscles (such as Botox injections, baclofen or clonazepam to name a few). Some may suggest surgery to help with range of motion, relieve pain, or help with positioning. Pulmonologists are usually members on the medical team. Many HIE patients have issues with swallowing with leads to aspirations and other airway issues. The gag, suck and swallow issues usually lead to a gtube or some other form on non-oral feeding adding a GI to the team. Seizures are almost expected with HIE patients. A neurologist is usually on board to monitor the brain as the child develops as well as to manage seizures. In addition to a team of medical specialists, most HIE patients also see a team of therapists (occupational, speech, physical, vision, etc.).

There are a few non-standard treatments. Non-standard is also non-covered. These treatments can be expensive, often require travel, and depending on the relationship with the current medical team, the patient may or may not get a lot of support for related follow-ups and/or possible complications. These treatments are at the discretion of each patient (and his/her caregivers). If you decide to pursue these treatments, please let your medical team know.

Hyperbaric Oxygen Therapy (HBOT) is one option. The patient is put into a pressure controlled tank with high levels of oxygen. The idea is that the increased oxygen will increase blood flow to the brain. Just like HIE is due to a lack of oxygen, many people feel that the increased oxygen through HBOT will help repair some of the damaged cells.

Stem Cell Therapy is another option. Currently Stem Cell Therapy for brain injuries is not an FDA approved treatment. If you chose to get stem cell injections you will have to leave the US. There are a few countries (Mexico, China, Russia to name some) that do offer Stem Cell Therapy. The idea behind stem cells is that stem cells are smart cells. When stem cells are injected into the body they travel through the body looking for cells that signal distress. When they see an area of distress they basically set up camp and work to replace those cells. There are many different types of stem cells as well. The controversy is over embryonic cells (cells from a fetus). However, stems cells can also be harvested from umbilical cords, sharks, fat tissue, and even some studies have shown successful harvesting from menstrual discharge. The source of stem cells is growing every day.

There are occasionally stem cell studies done in the US for brain injuries. These studies do not guarantee acceptance for all that inquire. Currently Duke is doing some studies. If you are interested in participating in one of these studies, please contact Dr. Joanne Kurtzberg, director of the Pediatric Blood and Marrow Transplant Program at Duke University.


Hope for HIE
Brain Injury Association of America
National Institute of Neurological Disorders and Stroke

2 HIE Yahoo support groups-

Hope for HIE
Hope for HIE FB Group
Beautiful Faces of HIE (Secret Support Group)
For those interested in joining, please message one of the Admins. (Lori Sproul, Shannon Rice Bourdeaux, Kristi McConnell, Candice Lindley or Sam Lees) and give a brief reason for wishing to join their group

Casey’s Diagnosis

baby_caseCasey was born on April 23rd 2006 just short of 37 weeks. Casey came early, but not easily. I had a uterine rupture. Some ruptures are really just tears; however mine split the uterus completely in half. When the uterus ruptured, Casey and her placenta left the uterus and floated in my abdominal cavity.

Luckily we made it to the hospital very quickly. The doctors and nurses worked very fast to get Casey out. Based on the blood gas taken from her umbilical cord Casey went about 30 minutes with limited to no oxygen. The APGAR was 0 at birth, no breath, no heart beat. After 5 minutes the resuscitation team had a heart beat; after 10 minutes they had gasping breaths. Casey was taken to the NICU where she stayed for the first 2 months of life.

The official diagnosis of HIE (Hypoxic Ischemic Encephalopathy) was given. Casey has many side effects/complications. Casey has Quadriplegia CP (Cerebral Palsy). Casey’s CP is a stiffness in her arms and legs. The stiffness in her legs has lead to a deformation in her feet as well as a dislocation of both hips and elbows. The stiffness in her hands lead to cortical thumbs (pointing inward). Casey has a barrel chest that adds to complications in positioning, airway management and gtube positioning (so LEAKY). In addition to CP, Casey also has all of her complex reflexes missing. Casey is not able to suck, swallow, gag nor blink. Without the ability to swallow Casey’s air way is in constant risk. Suction equipment is needed to remove secretions, and anything else in her mouth/throat, in order for her to breath. Also, without the ability to swallow Casey cannot eat by mouth. All of Casey’s nutrients and calories come in liquid form through a G-Tube. Without the ability to blink, eye safety is another issue. Moisture is supplied often with drops and lube, and Casey’s eyes have to be covered when there is high risk for foreign objects near the eye. Casey also has moderate hearing and vision loss. She is legally blind, but the eye doctors believe with help she can eventually see. Her eyes work, she is just not able to comprehend everything she sees. The same can be said for her hearing. She hears some, and with hearing aids she hears a little better, but the loss is more about her brain not comprehending the sounds than it is about her ears not working.

Over time Casey has aspirated fluid into her lungs a few times due to the lack of swallow. These aspirations led to a few hospital stays with very serious pneumonias that were escalated to Acute Respiratory Distress Syndrome – ARDS. The ARDS has put Casey into a category of lung and respiratory related issues as well. Even though she was not born with respiratory issues, they can still be considered complications of HIE, just secondary.

When Casey was born the cooling cap method was in trial in 1 US hospital- not the hospital we were in. In the first year we tried 40- 1 hour sessions of HBOT as well as an injection of 1 million umbilical stem cells. The second year we went back for a second round of stem cells where 2 million were injected. We saw some improvements around these times, but it is too hard to say for sure how much (if any) the non-standard treatments contributed. Sadly this is part of the reason these treatments have not been able to pass FDA regulations yet.

Casey has many serious complications, and has had a very hard start to her life. Regardless of the challenge or the pain Casey has fought through it all. She is without a doubt the strongest and most amazing child I have ever met. Doctors originally gave a very grim expectation for Casey. Some said she would never go home at all. Others said if she did go home it was most likely she would not see her first birthday. Casey has proven them all wrong. She has a huge, wonderful personality to go with her amazing will and strength. She may be disabled; she is definitely determined.