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

Please feel free to comment and add any others that we may have missed.

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 to 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.

The 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.

If there is something you think we have missed that should be added to our list, please let us know.  Comment below or send us an email.

Here are a few suggestions if you are in the market for a bag:
Pumpkin Packs- They make all types of bags, the carry all could be used as a go bag, they also have feeding pump bags, suctions bags, and much more.
eBags is a great resource to find all types of backpacks.

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

There 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.

References:
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