Nick's Little Snowman :0)

Many of you may know by now that we have a boy (Nick) with special needs. He’s our little sweetie, and these days, his good days far outweigh the bad days. But this wasn’t always the case. Figuring out what is bothering him can be nearly impossible at times because he is non verbal and has great difficulty communicating his needs. His frustration peaks to the point of self-abuse. He’s loaded with sensory issues, and he’s a creature of habit. So any change in his routine can really throw him off. And if there’s one thing we have learned along the way that I think everyone who has a child with special needs who is non-verbal, thrives on routine and/or has sensory issues should know, it is this:

If it is at all humanly possible, never change more than one thing at a time.

This means:

• Don’t change the furniture in a room around and change a medication at the same time. New medications, or even just a different dosage of a med they’ve been on, needs to be monitored for awhile. And you’ll need to know that if your child starts to act strangely, it’s not simply because you moved the furniture.
• Only change one medication at a time. Two meds can have the same side effects. And sometimes odd, unexpected side effects can occur. There was one med that we tried twice to put Nick on to prevent him from rejecting his transplanted kidney. Both times he would dig at any piece of skin on his body that he could get his hands on. The first time we put him on it, the doctor couldn’t imagine that it was the med causing this behavior. The second time it happened, we knew for sure that it was. Who knows how this drug made him feel to cause him to do this. Itchy skin? Creepy crawly feeling? Maybe it had nothing at all to do with his skin…
• Don’t get a new car and buy a new bed for your child in the same week.
• Don’t drive a different route to daycare and buy them new shoes the same week.
• And if you have to move from one home to another, don’t change anything for as long as possible. Moving from one home to another was extremely difficult on Nick. He couldn’t poop for two weeks and was self abusive to the point of having to restrain him all day. I don’t look forward to ever moving again.

You get the idea of what I’m saying. You’d be surprised at what might throw them off. Think of the tags in the back of shirts. They never bothered me unless the stitching wasn’t soft, but they drive other people crazy and they cut them out of the shirt. And now you see shirts where the tag is printed on the inside of the shirt instead of having a regular tag. The same thing goes for our kids, only what bothers them, and how they react to it can magnify quickly.

If communication is a problem, then you need to be able to watch for signs of adverse reactions to any changes in a child’s life. If your child is older, you probably already know what these reactions might be. But if you are new to this wonderful world of special needs and you’re not sure of what to watch for, you could start with some basics:

• Know all of the possible side effects of medications that they are taking.
• They could have a change in their sleep habits.
• They could simply become agitated, as any child might. Talk with the child’s OT and see if there may be some sensory issues, and ask them what might help (weighted products, extra sensory input, etc.)
• Change in bowel movements.
• They may become more withdrawn.
• They lose interest in what they used to love.

I’m sure there are plenty of other signs that a child is adversely reacting to change. And you will inevitably run into some difficult days because of something that simply needed to be different. If changing it back isn’t feasible, or your child needs to learn to deal with the new change, you can offer some comforting items or activities. Your child’s OT can be of great assistance when it comes to this.

Here’s what helps Nick:

We’ve found that Nick loves to be squished. When I lay with him at night while he falls asleep (yes, he is a little spoiled), he loves to have my arm across his chest. He also loves to be wrapped up in a sheet or a blanket like you would wrap a newborn baby. He has a weighted blanket that I use on him in the car, and we have a weighted lap pad for him for every day use. I think that maybe the motion in the car can be a little too much for him, especially with his vision problems. Before I discovered weighted blankets, we rarely made it from point A to point B without having to pull the car over because Nick was hurting himself. Now, with the blanket on him, he’s content in the car 99% if the time. We can often get away without using the blanket now.

Body Sox - they come in different sizes!

He also has a Body Sox. It’s like a giant, stretchy pillow case for people. You buy one that is just a little shorter than the child is tall so that it puts pressure on their shoulders, feet, and even their head if they want.

An iPod with muff style headphones have saved the day more times than I could possibly count. He loves the pressure on his ears, and the music definitely has a positive effect on him.

Changing more than one thing at a time will only complicate your life, and cause undo stress for your child. Sure, this may mean that you may have to do some planning in advance, or even put of a change for awhile. But if you get yourself into a situation where you’re child’s extremely upset, and possibly self-abusive and you can’t tell what’s bothering your child because you’ve changed more than one thing in their life recently, you’ll know you won’t want to do that again too soon!

And then on the flip side, a small change can be good. For example, Nick hates simply being moved from the car seat to his stroller. So when we get close to home (he now recognizes where he is), he’ll often begin to hurt himself. So if I think this might be the case on a particular day, I’ll take a little detour to throw him off. We’ll be pulling into the driveway before he realizes it’s almost time to be moved.

So, that’s my two cents for the day, whatever that’s worth. Hopefully it helps someone, somewhere!

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Thanks Lindsey!

Thoughts on things I do to reduce stress and remain sane:

Ø    I buy each person in my family their own brand of socks.  That way, matching them and giving them to the proper person is easy. Also, if the dryer eats a sock, there is always another one to match the spare.

Ø    My children have always had a 9:00 pm bedtime.  They don’t need to actually go to bed, but they need to stay in their rooms and read, watch television, chat on their cell phones or whatever.  This gives my husband and me a couple of hours of “quiet time” and also calms the children down before they fall asleep.

Ø    Every evening, during this time, I try to take a bubble bath.  I have a nice, icy glass of Diet Coke, read a magazine, (I have to much going on in my brain to read a book and remember it from night to night,) and wash with strongly scented body wash.  The scent really cheers me up!  If I feel really decadent, I will light scented candles.

Ø    I work.  I love my job. I get to talk to adults about current events and it gives me a solid foundation to “carry on” otherwise.

Ø    I schedule doctor, dentist and counseling appointments in the late afternoon, evening or on a Saturday so I do not have to take time out of work.   There are plenty of doctors, dentists and counselors who have evening and weekend hours.

Ø    I find places to take the kids where they can have fun, but that fun is contained.  They love the local dog park where they can cuddle and play with neighborhood dogs.  We go to a small local beach where they pick shells, catch sand crabs, and sometimes even go in the water.  We often go to movies such as “Shrek”, “Ice Age”, “Madagascar”  “Up” and so forth.  There is plenty of adult humor in these movies and I am generally the one laughing the loudest.  We go to a clay studio where the children get to make and paint a piece of clay. (My daughter has done so many wonderful dishes that she will have a whole collection for when she sets up housekeeping!)  We regularly visit the neighborhood pool where the children love to swim and the ice rink where they love to skate.  These are both great self-contained areas where the children can be as active as they want and I can sit on the sidelines and wave.

Ø    I find places to eat where the kids can play and I can visit with a friend.  I do not have much extra time for a social life, so meeting friends for dinner is important.  We regularly eat at a restaurant that has a pool table and air hockey for the kids to play while I get to sit and chat.  Being with friends regenerates my batteries.

Ø    As I am often in the emergency room with one or other of my children, I have a “hospital bag” packed, not unlike the bag packed by expectant mothers.  In it I have several magazines for myself and my child,  several dollars in change for the soda machine, and a deck of playing cards to play with my child during the long waits for treatment.  I also bring an extra dose of any medication they are on.  Heaven help everyone if his/her Ritalin or Concerta  wears off while waiting in the hospital. I learned to do this after several hospital rooms were in danger of being destroyed and my child was placed in restraints because they could not control themselves.  (I, too, think the oxygen hoses, the emergency buttons and the many containers of medical supplies are interesting, but I am physically able to refrain from playing with them and throwing them around the examining room! My children not so much…)

Ø    I get plenty of sleep.  If I don’t get enough sleep I am too crabby to face the day!  I am also “low maintenance” in that I dress comfortably not stylishly, I wear minimal make-up, and I have an easy hairstyle.  I may not be the most elegant mom around, but I can get ready for anything in ten minutes!

Ø    I am a “relaxed housekeeper”, to put it mildly.  My house is generally picked up, but heavier housework is not “my thing”.  I would much rather be off at the dog park with my children than sitting home washing the floor.  I do not think that when I die I will say “Oh, I wish I’d kept a cleaner house.”

Ø    I do not take things too seriously.  Shit happens.  Move on.

Ø    I write this blog.  Writing has always been an interest of mine, and by writing this blog, I am able to take some of life’s daily stressors and bang them out on the poor computer keyboard.  Thanks for reading this and giving me an excuse to write!!!!!

I also recommend that you read Prescription Medications: Avoid Mistakes and Get Organized.

Administering Medications through a G-Tube: Tools of the Trade

Syringes: When you have liquid medications, syringes are handy little buggers. Even if you’re not giving meds through a feeding tube. You can measure a medication with perfect accuracy, and you don’t have to worry about spilling it. You can also measure out a medication in advance, and even take pre-measured meds with you if you’re not going to be home when it’s time to take a med.

Often times the pharmacy will supply you with one or two if you need one for a prescription. Sometimes meds come in a box that includes syringes. I’m sure they’re just trying to keep costs down by only giving you a
couple of syringes for a bottle of medicine that will last 30 days. But unless the writing on the syringe is blue, you can be sure that you will only be able to wash a syringe a few times before the rubber part swells up and you can’t use the syringe anymore without it breaking on you. Because I need more than what we get from the pharmacy, or what comes in the box, I get a prescription for new ones every month. I’m able to get a few of them delivered from the same company that supplies us with his G-tube and extensions. Nick’s insurance doesn’t pay for very many, though. So when I need even more, I buy them from the pharmacy. I just warn them in advance if I need a lot of them. You can also order oral syringes online from places like Amazon.

I only know about oral syringes, so I can’t speak of syringes with needles (which I’m pretty sure you need a prescription for). You can get oral syringes in many sizes. I happen to use: 1ml, 3ml, 5ml, 10ml, and 35ml or 60ml.

If you are giving a very small dose, like 0.9 ml, you should definitely use the 1ml syringe. It will be the most accurate. I use the 35ml or 60ml for giving meds that need to be mixed with a lot of water and put through the feeding tube. I just close off the medicine port and twist the large syringe into the feeding port. Again, make sure you close the medicine port or you’ll have a big mess. Ask me how I know! I also keep my thumb on that little bugger (med port) just to make sure it doesn’t open up on me. People often refer this method as bolus feeds, usually reserved for giving a patient formula or extra fluids. But it’s definitely easier to give meds mixed with lots of water using this method rather than sucking up syringe full after syringe full with a smaller syringe.

To give meds through the large syringes, I keep the syringe as low as I need to be in order to administer the medication slowly. I don’t just dump it in there. And I use room temperature water. Never cold, and certainly not too warm. Cold water will give him stomach cramps.

And as if having different sized syringes isn’t enough, you can also get different tips: One type of syringe is called a luer-lock syringe. It has a small center tip, with a screw-type outer tip. I don’t care for these syringes for two reasons: first and foremost, you can’t use them with the little rubber bottle stoppers, AKA adapters. (I go into further explanation of adapters below.) The tip of a luer-lock syringe doesn’t fit into the hole of a bottle adapter. You’d need to use something like a catheter adapter in the top of the stopper first (see below), then screw the luer-lock syringe onto the catheter adapter. I actually do use this method for one of Nick’s meds (also described below).

The second reason why I don’t care for the luer-lock is that they don’t seal nicely to the medicine port of the feeding tube, at least the ones that I have don’t. The medication leaks out. So for the one med that I do use the luer-lock syringe with, I attach a 35ml syringe to the tube and squirt the med into the larger syringe, let it drain down, and flush with the meds he’s going to get in the 35ml syringe at that time of day anyhow. You could also use the catheter adapter to put the med through the medicine port with a luer-lock syringe. You’ll definitley get a nice tight fit with the adapter.

Tip: I find that the 35ml and 60ml syringes often don’t like to stay put in the feeding port, especially when they’re new. The tips of these syringes are slippery and they fall out easily. When this happens, I just scuff the part of the syringe that goes in the port with an emery board. Works like a charm.

Another type of syringe tip is just a straight, or slip tip. The length and diameter of the tips can vary. If you’re putting it through the tube, make sure the tip is long enough and wide enough to seal nicely to the medicine port. The ones that the pharmacy give you should be fine for the 1ml. Larger ones may very well end up being luer-lock syringes. If you’re ordering from a medical supply company, just tell them what you’re using them for, and be sure to specify the type of tip you want.

Yet another type of tip is the catheter tip. It is longer, and is found on the 35ml and 60ml syringes. These larger syringes don’t fit into the medicine port. You use them in the feeding port for venting (using the fatter, venting tube), administering meds that have been mixed with a lot of water, and gravity feeding (formula and water).

Tip: to use a luer-lock syringe in the rubber medication stoppers (adapter), use a catheter adapter. Just put the adapter in the stopper, then screw on the syringe.

Pill crushers: Word of caution: don’t buy a pill crusher that has the threads on the inside of the crusher if you need to put the crushed pill in a syringe. This has to be the dumbest design I’ve ever seen. The crushed pill just gets stuck in the threads.

Regular Pill Crusher

I’m sure there are many reasons why pills need to be crushed. For us, Nick gets his med through the feeding tube, so his meds need to be liquid or crushed to a fine powder.

The regular crusher that we have actually comes to a dull point inside the little well. This helps a lot for those semi-hard pills. You don’t need to turn it as hard to crush the pill. It also has a little storage compartment in the lid for keeping extra pills. The one thing I don’t like is that the powder usually gets stuck to the bottom of the crusher a little, and I need to loosen it in order to pour it into a syringe. I don’t know if this happens with all pill crushers. I’ve been using this same one for years.

Cutter and Hard Pill Crusher

One of his pills is extremely hard and I’ve actually cracked a pill crusher trying to crush it. Then I discovered that they make pill crushers with serrated teeth specifically for crushing these little buggers. I’d imagine if you had a large, hard pill, you should cut it one or two times first, so that you don’t break the crusher. This serrated crusher doesn’t crush pills into a fine powder though. So after I use the serrated crusher, I transfer the crushed med to a regular crusher and crush it up to a fine powder. This way the med goes through the tube easily. Oh, and this serrated tooth crusher has the threads on the inside of the crusher, so I’d need to transfer the powder to my regular pill crusher before putting it into a syringe anyhow.

Pill cutters: The crusher with serrated teeth that I use is actually a pill cutter as well. I’ve used many different pill cutters, and this one has definitely held up the longest. You can see a picture of it just above (it’s red). Click on the picture and it will bring you to this item on Amazon. We bought ours years ago and hopefully the quality is just as good now as it was then. When I looked this item up on Amazon, it received a poor review. But the person was trying to crush a large pill. I would cut a large pill first, and crush half at a time. I’ve never had a problem with it when crushing small pills.

Adapters for liquid medicine bottles: I can’t imagine trying to measure out liquid meds using a syringe if I didn’t have these adapters. Amazon sells them at a great price, and it even comes with a 10 ml syringe with the blue writing on it. These syringes with blue writing last a looong time.

To use the adapter, you simply replace the regular cover of the bottle with the adapter, stick the syringe in the hole, tip and measure. If you’re using a small syringe, especially the 1ml syringe, you may have to draw it up, flush it back in, and repeat until you get all the air our of the syringe.

Catheter Adapter

Catheter adapters: Maybe not quite intended for what I use them for, these catheter adapters come in very handy if you’re trying to measure a liquid med and you only have a luer-lock syringe. Just put the adapter in the top of the bottle adapter and screw the syringe onto the catheter adapter.

How to Stay Organized

Storage Box or Basket : Nick has a whole bunch of meds. A couple of them need to be kept in the refrigerator, but the rest of them are kept in the cabinet. I use a hard plastic tote that I found in the craft isle at Walmart to keep meds, syringes, pill crusher, pill cutter, a pencil and a calendar in. This way I can just grab the tote, and get to work when it’s time to do meds.

You can also buy a lock box to keep meds in if safety is a concern. Amazon has a small variety of lock boxes at very reasonable prices. Some are simply difficult to open, others actually have a combination lock on them.

Pill organizer: For years, I didn’t use a pill organizer. Then one day they were giving them away for free at the pharmacy. Now I’d hate to be without one. It’s a great way to make sure you don’t miss a dose, and also make sure you don’t give too much. Just lay out a weeks worth of pills and you’re good to go. And you can find all kinds of pill organizers. They even have them for giving doses several times per day.

After you measure the meds: As I measure each med, rather than just putting the syringes on the counter, I place them in a little hard plastic basket. That way I can bring the meds wherever I need to go, and I can wash it afterwards.

Need water for flushing meds through a feeding tube? Nick’s meds go though the feeding tube, and I use a baby bottle to hold the water I need for administering his meds. A baby bottle is particularly handy for me, not only because I don’t spill the water when I’m not using it (I give him some meds while he’s in his bed, so there’s no hard surface to place the water on), but also because he gets Miralax, which needs to be mixed with water. I can just put it in the bottle and shake it.

Don’t confuse one medication with another when the bottles look alike.: If you have more than one medicine bottle that looks same (same size and color), ask the pharmacist to put one in a different sized bottle. You could also buy large, colored stickers and use the stickers to differentiate the bottles that way. Just don’t cover up any important instructions, including the refill number. If it is a pill bottle, you could also use a permanent marker and write the first letter of the name of the medication.

Another way to not confuse medications when it is a liquid would be to use two different types of syringes on them, keeping a catheter adapter in one of them. I use the adapters that you put in the top of the bottle, tip, and measure. But for one of Nick’s liquid meds, I insert a catheter adapter into the bottle adapter and leave it there so I have to use a luer-lock syringe on that bottle, and a regular straight tip syringe tip on the other bottle. This way I know which med is which by just glancing at them, and I’m sure to never confuse one med for the other.

Medication reminders and calendars: There are all kids of reminders out there so that you won’t miss a dose. From complex systems that double as a pill box to simple watches, I’m sure you’ll find one that you’ll find handy. I personally only need a small calendar that helps me keep track of the medication that Nick only needs every other day.

When Putting Meds Through the Feeding Tube

Here’s my biggest tip on this subject: when putting meds through the medicine port with a syringe, keep your thumb tightly clamped on the feeding port! If there’s a kink in the tube somewhere, you’ll blow out that feeding port when you flush the syringe. You can imagine what a mess that makes, not to mention that now you can’t be sure how much of a med made it into the stomach if you already had meds in the tube before it blew out.

My morning routine: I measure out all the meds and put them in my little basket. I make sure I have the baby bottle with water in it, a 5 cc syringe, a 35 cc syringe, and the feeding tube.

Sometimes I’ll fit in as much liquid medicine into the tube as I can before I even hook it up to Nick’s Mic-Key button. At the very least, the tube is filled with water, not air. I start with liquid meds, flush once, and then go on to the meds that I’ve crushed and put into a syringe. Use as big a syringe as you need when flushing through crushed meds in order to be able to add enough water so that the tube doesn’t clog. I like to give Nick his liquid meds first and flush once so that if the tube happens to get clogged with the powdered meds, at least I’ve flushed in the liquid meds into his stomach.

A little more about crushed and powdered meds: Don’t try to put through too much at once in the syringe. I dump it right from the pill crusher into the syringe and use at least a 5 cc syringe. One of his meds is a powder inside a capsule. I just open the capsule and put it in the medicine crusher. Then I dump it into the syringe. I then suck up almost a syringe full of water leaving a little bit of air in the syringe so that I can shake it and get off any powder that’s stuck to the side or in the tip. After I push the medicine and water mixture into the feeding tube, I flush it with water a couple of times using the same syringe. This gets the last little bit of medicine out of the syringe.

When the feeding tube gets clogged with meds: I never really have a problem with tubes getting hopelessly clogged anymore. If the powder does get stuck when flushing it through the tube, first I look where where the clamp for the tube is and straighten out the kink. If that doesn’t fix things, I look for a kink somewhere else in the tube. If things really get stuck, I’ll try sucking a little bit back into the syringe and try again. When all else fails, I just unhook the feeding tube and dump everything into a cup. Add a little more water, suck it up into the syringe and try again. Then I add some more water to the cup to get the residual medicine that will inevitably be left in there.

After giving Nick the crushed pill and powdered medicine, I still one more med that needs to be mixed with a little bit of water. This particular med sticks to the plastic tubing, adding water to it ensures that the majority of it makes it into his stomach. I use a 30 cc syringe in the medicine port for this one. I give him what I’ve mixed with water, then swirl a little water in the cup and put that in as well, flushing with a bit more once the syringe is empty. It all, he gets 3 – 4 ounces of water with his meds in the morning.

A Few Other Things Worth Mentioning

In the past, I’ve found that generic acetaminophen tablets dissolve better than brand name Tylenol. But if you really want to use the brand name, crush it up in a pill crusher first. The large tablets most definitely need to be administered with the large 35 cc or 60 cc syringe though the feeding port.

I always refill prescriptions as soon as insurance will allow. The exception to this would be if a prescription expires within 30 days of being filled (not within X days of being opened). Why? Who knows what could happen that creates a situation where you can’t get to the pharmacy to pick up a prescription on time. Illness, family emergency, weather, vacations, even spilling medications or losing them. I’ve had bottles of pills get blown off the counter into a pan of water in the sink on a warm, windy day! If you have extra on hand, you have some time to play with.

I always bring all of Nick’s medications with me when he goes to the Emergency Room or is admitted to the hospital. I know at this point that his prescriptions are correct. I don’t have that control when he’s in the hospital. Not to mention that some of his medications aren’t that common, and rarely does the hospital staff give him his meds on time. It’s true. He’s due for meds at 7 am. The few times I’ve left it up to the hospital staff to get his medications, he’d get some at 7, some at 8:15, some at 9. He’s even gone a whole day without one that he’s supposed to get twice per day! If you have any medications that need to be refrigerated, the hospital pharmacy will probably need to take it and repackage it into their own bottle and you will have to ask for that particular medication from the nurse. But she will bring it to you, and you can still measure it and administer it yourself.

If you find that you just can’t get the syringes you have to attach securely to the medicine port, you can use a catheter adapter. It will fit nice and snug into the feeding port, but you’ll also need a luer-lock syringe, not a slip tip syringe for this method.

As mentioned earlier, syringes with blue writing are much more durable than syringes with black writing. You can wash the blue ones over and over again before the rubber part swells up and breaks.

The absolute best stuff I have ever used to protect the skin around the G-tube is Calmoseptine Ointment. One of the uses listed on the manufacturer’s web site is for the stoma site. I keep a tube of it right in the little basket that I put my measured meds in. This way I have it with me when I’m hooking him up to the feeding tube. I apply it once I’m done, twice daily. So long as I remember to do this, the skin around his button is never red anymore.

Don’t use the syringe that comes with the button to give meds. The tip is smaller, and after washing it a few times, it will break. Then you won’t have a syringe to get the water out of the button’s balloon. You’ll need to open a new button to get a new syringe.

BTW, if you ever have problems with getting the water out of that balloon, look at the space that the tip of the syringe goes in for sucking the water out of it. There’s probably gunk in there. Just use something small to get it out. I’ve had one button in all these years where the balloon just would not deflate for me. Probably defective. Rather than making a trip to the doctor just to change a button, I wound up using the end of the cap for a Bic pen (long part) and breaking the spring in there to get it to deflate.

Additional Resources

Medline Plus

WebMd

U.S. Food and Drug Administration

Mayo Clinic’s article on Medical History: Compiling your medical family tree

Updates in Your In-Box

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I’m no stranger to having to administer lots of medications. Our son Nick has been on prescription medications since birth, and he had a kidney transplant on August 15, 2000. Since then, I’ve been responsible for administering those life saving meds. There’s not much more stressful than knowing that you simply cannot forget a medication, or administer the wrong amount. I can just about do it with my eyes closed now. But when I first started I had no clue what questions I should be asking, what supplies I should have on hand, or how to stay organized so I didn’t make a mistake.

Over the past 14 years, I’ve seen mistakes made, and I’ve made a few myself. This article is about what I’ve learned along the way. It is not to be construed as medical advice, but rather personal opinion. Please check with your own doctor and pharmacist to make sure you are doing everything that you need to do in order to avoid medication mistakes.

Beginning at the Doctors Office

It all starts here. There are several questions that you should be prepared to answer, and several questions that you should be prepared to ask. Every single one of them is extremely important. Keep a journal. Bring it with you to all doctor appointments.

Questions You Will Need to Answer

Patient’s medical history: It’s a good idea to keep a journal of the patient’s medical history. This should include current and past illnesses and/or medical conditions, surgeries, current and past medications, any allergies to food or medications. When visiting the doctor, a nurse will ask several questions that will help the doctor. Having a journal will ensure that you don’t leave anything out.

Family medical history: It’s also very important that you know about your family medical history. I realize that sometimes adoption is involved and it’s simply not possible. But whenever it is possible, get the family medical history for both sides of the family (maternal and paternal). So if you’re bringing your child to the doctor, you want to know both the history on your side of the family and your child’s father/mother side of the family. The Mayo Clinic provides an excellent article that will help you compile this information in the form of a family tree.

List of current medications: When you visit the doctor, you will be asked for a list of current medications, including the dose. It’s much easier to bring a list with you and just hand it over to the nurse taking the information than it is to try to remember everything right there on the spot. I like to use index cards written in pencil. He cards hold up well, you can erase pencil, and you can keep the card with the medications when you’re not using it at the doctor’s office.

Look at the medication bottle(s) and write down the name of the medication, how much (volume) you are administering and how many mg. per unit. This way the doctor will know the exact amount that is being taken. For example, if a prescription has 1 mg per ml, and you are administering 5 ml, the doctor will know that the patient is getting 5 mg .

Questions to Ask the Doctor. Write Down What the Doctor Says!

When prescribed a new medication, there are several things you will need to know. You’ll want to check what the doctor says to you against what the bottle of medication says when you pick it up at the pharmacy.

While talking with the doctor about having a new prescription filled, write down the name , the volume to be administered, and total mg’s per dose that will be administered: The bottle will probably say something like 1mg/cc. If you’re new to this, or you’re not good at math, ask the doctor exactly what the bottle that you will be getting should say. For example, if Nick gets 5 mg of Prednisolone every other day, and there’s 1 mg. per ml, then he should be getting 5 ml’s of the medication for a total of 5 mg. every other day.

1 mg./ml  X 5 ml = 5 mg.

Brand name vs. generic name: If a prescription does not say ‘no substitutions’ you will most likely receive the generic version of that drug. Ask the doctor what that name would be.

What is this medication going to treat: It may seem obvious, but if you are dealing with more than one medication, you don’t want mistake one that treats high blood pressure with one that treats a headache. One that you need to take every day with one that you take only when needed.

How long will it take for the medication to take effect: It may only take minutes for it to start working, or it may be much longer than that. It’s good to know the answer to this question. Especially if it can take a couple of weeks to work!

Food, drink, herbal and drug interactions: Drinking Alcohol is an obvious substance that may interact with drugs. But did you know that grapefruit, chocolate and licorice are common as well? Herbal supplements can interact with prescriptions, over the counter medications, and the list goes on. Let both the doctor and pharmacist know what meds (prescription and over the counter) and herbal supplements are being taken. Ask what should not be taken with the prescription, including foods and beverages.

And don’t forget, before you go to buy an over the counter (OTC) medication or supplement for someone on a prescription, ask the pharmacist if that OTC item is okay to take with the meds the person is already on (both prescribed and OTC)! It’s very easy to forget to do this, especially this time of year when people catch a cold or get sick and you’re in a rush to get back home. Even though you may have been given a list of what shouldn’t be taken with the med already, you should still ask. The Pharmacist is the drug specialist. It’s what they do all day long. Just give the pharmacy a call before you even bother going to the store. Let them know what’s going on and ask them for recommendations on what you should buy. That’s what they’re there for!

Ask about side effects: You can’t turn on the TV for very long without  seeing a commercial for some new medication that has come out. And then they quickly list the often large list of possible side effects. It’s important to ask both the doctor and pharmacist what they are for each medication. Sometimes even more drugs are prescribed to counter the effects of meds. Lovely, huh? Often times a medication is a necessary evil. But then there are some that may not be absolutely necessary, and you may decide against using because of an unwanted side effect.

Ask how, when and with what the medication should be taken: With or without food? If it’s with food, what kind of food? If you give all meds through a feeding tube, and you receive a tablet or capsule, can you crush it? Should it be taken at a certain time of day? A certain time before or after eating? All of these things are extremely important to know. For example, one of Nick’s meds is pretty particular and it has to be mixed with water and taken on an empty stomach, and he can’t eat for an hour after. Another one he used to be on had to be mixed in a little glass jar with water, using a metal utensil to stir it with.

Eventually you will get into a routine of when and how to administer the drugs and it won’t be such a big deal. Keep a small calendar with the meds and cross off each day as you go. If you give meds more than once a day, get a calendar where you can check a day off one, two, three or how ever many times you need to. An even bigger calendar if you need to actually write the name of the medication(s) down if that helps you to stay organized.

What happens if you miss a dose, or not all the med was taken/given for some reason?: It can happen! Should you skip it? Take it? Double up the next dose? Both my husband and I have given Nick meds through the feeding tube using the medicine port and had the feeding port blow open while pushing the med through with a syringe. At that point, we had no idea which meds, and how much of each med, actually made it into his stomach! We had to call the doctor and ask them what to do. Some meds we just skipped, others we gave to him again.

What happens if you take/give too much by accident?: This can happen, too. You get distracted and can’t remember if you already gave that med. It happened to me once, back when our oldest boy was a teen and still lived at home. He was a very difficult teen, and we were in a heated discussion while I was measuring out Nick’s meds and thought I may have given him one of the meds twice. Talk about panic! I called the poison control center and they said he’d be fine. But I never want to do that again!

How to Store the Medication: Some meds need to stay within a certain temperature. Generally you either keep them in the fridge or not in the fridge. There should be a little sticker somewhere on the medication if you’re supposed to keep it in the fridge. And it’s not recommended that you keep medications in the bathroom. Too many germs in there.

Make Sure YOU Can Read the Prescription Before You Leave the Doctor’s Office:

Many doctors have converted to computer generated prescriptions, but many have not. If you can’t read the prescription, chances are the pharmacists may have a difficult time as well. Be a pain in the butt, ask the doctor to rewrite the prescription so that it’s legible if you can’t read it. They should have respect for you that you care enough about making sure it is filled correctly and do as you ask without being upset about it.

When You’re Ready to Have the Prescription Filled

Use the Same Pharmacy For All Prescriptions: It’s the pharmacist’s job to go over ALL of the medications a person is on, and make sure that they won’t interact with each other. Help them do their job and avoid mistakes by sticking with just one pharmacy. This way they can see in their computer system a list of all of the medications for the person they are filling prescriptions for. Don’t have one filled at CVS, and two filled at Walmart.

The pharmacist also needs to know: The pharmacy will also ask about allergies, and if you are new to the pharmacy, they’ll need to know what other medications (prescriptions, OTC, supplements, herbal) you are on. It may seem redundant, but it’s important that they know this information, too. They will keep record of what you tell them in their computer system. Be sure to let them know if anything changes, too.

Ask the pharmacist questions: It’s a good idea to ask the pharmacist how and when to take the medication, about interactions with other food, drinks, OTC and prescribed drugs, and about any side effects. Do this even though you have already asked the doctor.

Why do I say this? Doctors have to know about medications, but it’s the Pharmacist that’s the real expert. As an example of what can happen when you don’t find out about possible side effects: Nick was prescribed Baclofen for muscle spasms that he was having. I wasn’t on top of my game at the time, and didn’t find out until it was too late that Baclofen can exasperate seizures. Now he’s on Keppra to prevent seizures. And despite my best efforts, and with two years worth of weaning, I have been unable to completely get him off of the Baclofen.

When You Pick Up the Prescription

Now it’s time to compare what the doctor said was being prescribed with what you’re being handed when you pick up the prescription. Here are some things to check:

• Check the name of the patient on the bottle – make sure it’s for you! Yes, I’ve been given someone else’s medication. Correct name was on the label that was stapled to the bag, but someone else’s medication was in the bag.
• The name of the medication - believe it or not, this is one of the biggest mistakes. The names of medications can be very similar. Make sure you get the right one!
• Brand Name vs Generic Name – If a doctor writes down the brand name on the prescription, unless ‘no substitution’ is written, you’ll most likely get the generic version. It should say both the generic and brand name on the bottle. Look for them.
• Volume of medication to be given – this is how much you will measure out.
• Dosage – the total mg, that you will be giving. A bottle of medicine will say how many mg/ml, etc. is in the drug.
• Storage – check for special instructions.
• Shake or not to shake – check for special instructions. Also note: if the pharmacist needs to add water to a medication, they probably won’t do this until you’re at the pharmacy ready to pick it up. This is because the medication’s expiration date will be affected by the date the water is added. Keep this in mind an plan ahead for these prescriptions.
• Measuring devices - get syringes when ever possible. And make sure you get a size that you can actually use! Often times it’s not the pharmacist that will decide which syringes you get. You can’t accurately measure out 0.3 ml with a 10 ml syringe.

Read the label for instructions on how to properly take the medication. Check this against what the doctor told you.

Read all those other little stickers on the bottle: there may be some other special instructions that aren’t on the regular label, such as Use caution when driving or operating heavy equipment, etc..

Read the label on the bottle for correct dosage every time a prescription is refilled: Another catch I made wasn’t so much an error on the pharmacy end, but a change in the strength of med that nobody told me about when I refilled his prednisolone. He used to get 3 cc’s once every other day. The strength of the liquid was changed at some point (new supplier maybe), and he now gets 5 cc’s once every other day. He’s still getting the same total mg., I just have to measure it out different now. But neither the doctor’s office or the pharmacy told me when the change was made. I just happened to read the label on the bottle and notice. I had to call the doctor’s office and question them on it and complain that nobody told me, the one giving him the med. Who knows how long I could have been giving him the wrong dose if I hadn’t noticed the change on the label. I’d been measuring it the same for years…I don’t need to look at the labels anymore to know how much he needs to get of the dozen meds he’s on. I really lucked out when I noticed. And by the way, it was a doctor at Boston Children’s Hospital that refilled the prescription. So don’t let the fact that a prescription is filled by a doctor at one of the top hospitals in the country sway you from being just as careful when filling prescriptions.

After taking/giving the medication, call the doctor immediately if any adverse reactions occur. A life could depend on quick action!

If a dosage is changed: Never change a dosage on your own. Always follow the doctor’s instructions. And if a dosage is change, rather than just refilling the prescription, get a new prescription so that the label will reflect the new dosage.

It’s a good idea to let someone other than a person that lives in your house where your list of medications with the doses is located. God forbid the adults get into an car accident together and are unable to tell people how to administer medications. You should also keep a list of phone numbers for all the physicians that prescribe the meds.

Tools of the Trade

Syringes: When you have liquid medications, syringes are handy little buggers. Even if you’re not giving meds through a feeding tube. You can measure a medication with perfect accuracy, and you don’t have to worry about spilling it. You can also measure out a medication in advance, and even take pre-measured meds with you if you’re not going to be home when it’s time to take a med.

Often times the pharmacy will supply you with one or two if you need one for a prescription. Sometimes meds come in a box that includes syringes. I’m sure they’re just trying to keep costs down by only giving you a
couple of syringes for a bottle of medicine that will last 30 days. But unless the writing on the syringe is blue, you can be sure that you will only be able to wash a syringe a few times before the rubber part swells up and you can’t use the syringe anymore without it breaking on you. Because I need more than what we get from the pharmacy, or what comes in the box, I get a prescription for new ones every month. I’m able to get a few of them delivered from the same company that supplies us with his G-tube and extensions. Nick’s insurance doesn’t pay for very many, though. So when I need even more, I buy them from the pharmacy. I just warn them in advance if I need a lot of them. You can also order oral syringes online from places like Amazon.

I only know about oral syringes, so I can’t speak of syringes with needles (which I’m pretty sure you need a prescription for). You can get oral syringes in many sizes. I happen to use: 1ml, 3ml, 5ml, 10ml, and 35ml or 60ml.

If you are giving a very small dose, like 0.9 ml, you should definitely use the 1ml syringe. It will be the most accurate. I use the 35ml or 60ml for giving meds that need to be mixed with a lot of water and put through the feeding tube. I just close off the medicine port and twist the large syringe into the feeding port. Again, make sure you close the medicine port or you’ll have a big mess. Ask me how I know! I also keep my thumb on that little bugger (med port) just to make sure it doesn’t open up on me. People often refer this method as bolus feeds, usually reserved for giving a patient formula or extra fluids. But it’s definitely easier to give meds mixed with lots of water using this method rather than sucking up syringe full after syringe full with a smaller syringe.

To give meds through the large syringes, I keep the syringe as low as I need to be in order to administer the medication slowly. I don’t just dump it in there. And I use room temperature water. Never cold, and certainly not too warm. Cold water will give him stomach cramps.

And as if having different sized syringes isn’t enough, you can also get different tips: One type of syringe is called a luer-lock syringe. It has a small center tip, with a screw-type outer tip. I don’t care for these syringes for two reasons: first and foremost, you can’t use them with the little rubber bottle stoppers, AKA adapters. (I go into further explanation of adapters below.) The tip of a luer-lock syringe doesn’t fit into the hole of a bottle adapter. You’d need to use something like a catheter adapter in the top of the stopper first (see below), then screw the luer-lock syringe onto the catheter adapter. I actually do use this method for one of Nick’s meds (also described below).

The second reason why I don’t care for the luer-lock is that they don’t seal nicely to the medicine port of the feeding tube, at least the ones that I have don’t. The medication leaks out. So for the one med that I do use the luer-lock syringe with, I attach a 35ml syringe to the tube and squirt the med into the larger syringe, let it drain down, and flush with the meds he’s going to get in the 35ml syringe at that time of day anyhow. You could also use the catheter adapter to put the med through the medicine port with a luer-lock syringe. You’ll definitley get a nice tight fit with the adapter.

Tip: I find that the 35ml and 60ml syringes often don’t like to stay put in the feeding port, especially when they’re new. The tips of these syringes are slippery and they fall out easily. When this happens, I just scuff the part of the syringe that goes in the port with an emery board. Works like a charm.

Another type of syringe tip is just a straight, or slip tip. The length and diameter of the tips can vary. If you’re putting it through the tube, make sure the tip is long enough and wide enough to seal nicely to the medicine port. The ones that the pharmacy give you should be fine for the 1ml. Larger ones may very well end up being luer-lock syringes. If you’re ordering from a medical supply company, just tell them what you’re using them for, and be sure to specify the type of tip you want.

Yet another type of tip is the catheter tip. It is longer, and is found on the 35ml and 60ml syringes. These larger syringes don’t fit into the medicine port. You use them in the feeding port for venting (using the fatter, venting tube), administering meds that have been mixed with a lot of water, and gravity feeding (formula and water).

Tip: to use a luer-lock syringe in the rubber medication stoppers (adapter), use a catheter adapter. Just put the adapter in the stopper, then screw on the syringe.

Pill crushers: Word of caution: don’t buy a pill crusher that has the threads on the inside of the crusher if you need to put the crushed pill in a syringe. This has to be the dumbest design I’ve ever seen. The crushed pill just gets stuck in the threads.

Regular Pill Crusher

I’m sure there are many reasons why pills need to be crushed. For us, Nick gets his med through the feeding tube, so his meds need to be liquid or crushed to a fine powder.

The regular crusher that we have actually comes to a dull point inside the little well. This helps a lot for those semi-hard pills. You don’t need to turn it as hard to crush the pill. It also has a little storage compartment in the lid for keeping extra pills. The one thing I don’t like is that the powder usually gets stuck to the bottom of the crusher a little, and I need to loosen it in order to pour it into a syringe. I don’t know if this happens with all pill crushers. I’ve been using this same one for years.

Cutter and Hard Pill Crusher

One of his pills is extremely hard and I’ve actually cracked a pill crusher trying to crush it. Then I discovered that they make pill crushers with serrated teeth specifically for crushing these little buggers. I’d imagine if you had a large, hard pill, you should cut it one or two times first, so that you don’t break the crusher. This serrated crusher doesn’t crush pills into a fine powder though. So after I use the serrated crusher, I transfer the crushed med to a regular crusher and crush it up to a fine powder. This way the med goes through the tube easily. Oh, and this serrated tooth crusher has the threads on the inside of the crusher, so I’d need to transfer the powder to my regular pill crusher before putting it into a syringe anyhow.

Pill cutters: The crusher with serrated teeth that I use is actually a pill cutter as well. I’ve used many different pill cutters, and this one has definitely held up the longest. You can see a picture of it just above (it’s red). Click on the picture and it will bring you to this item on Amazon. We bought ours years ago and hopefully the quality is just as good now as it was then. When I looked this item up on Amazon, it received a poor review. But the person was trying to crush a large pill. I would cut a large pill first, and crush half at a time. I’ve never had a problem with it when crushing small pills.

Adapters for liquid medicine bottles: I can’t imagine trying to measure out liquid meds using a syringe if I didn’t have these adapters. Amazon sells them at a great price, and it even comes with a 10 ml syringe with the blue writing on it. These syringes with blue writing last a looong time.

To use the adapter, you simply replace the regular cover of the bottle with the adapter, stick the syringe in the hole, tip and measure. If you’re using a small syringe, especially the 1ml syringe, you may have to draw it up, flush it back in, and repeat until you get all the air our of the syringe.

Catheter Adapter

Catheter adapters: Maybe not quite intended for what I use them for, these catheter adapters come in very handy if you’re trying to measure a liquid med and you only have a luer-lock syringe. Just put the adapter in the top of the bottle adapter and screw the syringe onto the catheter adapter.

How to Stay Organized

Storage Box or Basket : Nick has a whole bunch of meds. A couple of them need to be kept in the refrigerator, but the rest of them are kept in the cabinet. I use a hard plastic tote that I found in the craft isle at Walmart to keep meds, syringes, pill crusher, pill cutter, a pencil and a calendar in. This way I can just grab the tote, and get to work when it’s time to do meds.

You can also buy a lock box to keep meds in if safety is a concern. Amazon has a small variety of lock boxes at very reasonable prices. Some are simply difficult to open, others actually have a combination lock on them.

Pill organizer: For years, I didn’t use a pill organizer. Then one day they were giving them away for free at the pharmacy. Now I’d hate to be without one. It’s a great way to make sure you don’t miss a dose, and also make sure you don’t give too much. Just lay out a weeks worth of pills and you’re good to go. And you can find all kinds of pill organizers. They even have them for giving doses several times per day.

After you measure the meds: As I measure each med, rather than just putting the syringes on the counter, I place them in a little hard plastic basket. That way I can bring the meds wherever I need to go, and I can wash it afterwards.

Need water for flushing meds through a feeding tube? Nick’s meds go though the feeding tube, and I use a baby bottle to hold the water I need for administering his meds. A baby bottle is particularly handy for me, not only because I don’t spill the water when I’m not using it (I give him some meds while he’s in his bed, so there’s no hard surface to place the water on), but also because he gets Miralax, which needs to be mixed with water. I can just put it in the bottle and shake it.

Don’t confuse one medication with another when the bottles look alike.: If you have more than one medicine bottle that looks same (same size and color), ask the pharmacist to put one in a different sized bottle. You could also buy large, colored stickers and use the stickers to differentiate the bottles that way. Just don’t cover up any important instructions, including the refill number. If it is a pill bottle, you could also use a permanent marker and write the first letter of the name of the medication.

Another way to not confuse medications when it is a liquid would be to use two different types of syringes on them, keeping a catheter adapter in one of them. I use the adapters that you put in the top of the bottle, tip, and measure. But for one of Nick’s liquid meds, I insert a catheter adapter into the bottle adapter and leave it there so I have to use a luer-lock syringe on that bottle, and a regular straight tip syringe tip on the other bottle. This way I know which med is which by just glancing at them, and I’m sure to never confuse one med for the other.

Medication reminders and calendars: There are all kids of reminders out there so that you won’t miss a dose. From complex systems that double as a pill box to simple watches, I’m sure you’ll find one that you’ll find handy. I personally only need a small calendar that helps me keep track of the medication that Nick only needs every other day.

When Putting Meds Through the Feeding Tube

Here’s my biggest tip on this subject: when putting meds through the medicine port with a syringe, keep your thumb tightly clamped on the feeding port! If there’s a kink in the tube somewhere, you’ll blow out that feeding port when you flush the syringe. You can imagine what a mess that makes, not to mention that now you can’t be sure how much of a med made it into the stomach if you already had meds in the tube before it blew out.

My morning routine: I measure out all the meds and put them in my little basket. I make sure I have the baby bottle with water in it, a 5 cc syringe, a 35 cc syringe, and the feeding tube.

Sometimes I’ll fit in as much liquid medicine into the tube as I can before I even hook it up to Nick’s Mic-Key button. At the very least, the tube is filled with water, not air. I start with liquid meds, flush once, and then go on to the meds that I’ve crushed and put into a syringe. Use as big a syringe as you need when flushing through crushed meds in order to be able to add enough water so that the tube doesn’t clog. I like to give Nick his liquid meds first and flush once so that if the tube happens to get clogged with the powdered meds, at least I’ve flushed in the liquid meds into his stomach.

A little more about crushed and powdered meds: Don’t try to put through too much at once in the syringe. I dump it right from the pill crusher into the syringe and use at least a 5 cc syringe. One of his meds is a powder inside a capsule. I just open the capsule and put it in the medicine crusher. Then I dump it into the syringe. I then suck up almost a syringe full of water leaving a little bit of air in the syringe so that I can shake it and get off any powder that’s stuck to the side or in the tip. After I push the medicine and water mixture into the feeding tube, I flush it with water a couple of times using the same syringe. This gets the last little bit of medicine out of the syringe.

When the feeding tube gets clogged with meds: I never really have a problem with tubes getting hopelessly clogged anymore. If the powder does get stuck when flushing it through the tube, first I look where where the clamp for the tube is and straighten out the kink. If that doesn’t fix things, I look for a kink somewhere else in the tube. If things really get stuck, I’ll try sucking a little bit back into the syringe and try again. When all else fails, I just unhook the feeding tube and dump everything into a cup. Add a little more water, suck it up into the syringe and try again. Then I add some more water to the cup to get the residual medicine that will inevitably be left in there.

After giving Nick the crushed pill and powdered medicine, I still one more med that needs to be mixed with a little bit of water. This particular med sticks to the plastic tubing, adding water to it ensures that the majority of it makes it into his stomach. I use a 30 cc syringe in the medicine port for this one. I give him what I’ve mixed with water, then swirl a little water in the cup and put that in as well, flushing with a bit more once the syringe is empty. It all, he gets 3 – 4 ounces of water with his meds in the morning.

A Few Other Things Worth Mentioning

In the past, I’ve found that generic acetaminophen tablets dissolve better than brand name Tylenol. But if you really want to use the brand name, crush it up in a pill crusher first. The large tablets most definitely need to be administered with the large 35 cc or 60 cc syringe though the feeding port.

I always refill prescriptions as soon as insurance will allow. The exception to this would be if a prescription expires within 30 days of being filled (not within X days of being opened). Why? Who knows what could happen that creates a situation where you can’t get to the pharmacy to pick up a prescription on time. Illness, family emergency, weather, vacations, even spilling medications or losing them. I’ve had bottles of pills get blown off the counter into a pan of water in the sink on a warm, windy day! If you have extra on hand, you have some time to play with.

I always bring all of Nick’s medications with me when he goes to the Emergency Room or is admitted to the hospital. I know at this point that his prescriptions are correct. I don’t have that control when he’s in the hospital. Not to mention that some of his medications aren’t that common, and rarely does the hospital staff give him his meds on time. It’s true. He’s due for meds at 7 am. The few times I’ve left it up to the hospital staff to get his medications, he’d get some at 7, some at 8:15, some at 9. He’s even gone a whole day without one that he’s supposed to get twice per day! If you have any medications that need to be refrigerated, the hospital pharmacy will probably need to take it and repackage it into their own bottle and you will have to ask for that particular medication from the nurse. But she will bring it to you, and you can still measure it and administer it yourself.

If you find that you just can’t get the syringes you have to attach securely to the medicine port, you can use a catheter adapter. It will fit nice and snug into the feeding port, but you’ll also need a luer-lock syringe, not a slip tip syringe for this method.

As mentioned earlier, syringes with blue writing are much more durable than syringes with black writing. You can wash the blue ones over and over again before the rubber part swells up and breaks.

The absolute best stuff I have ever used to protect the skin around the G-tube is Calmoseptine Ointment. One of the uses listed on the manufacturer’s web site is for the stoma site. I keep a tube of it right in the little basket that I put my measured meds in. This way I have it with me when I’m hooking him up to the feeding tube. I apply it once I’m done, twice daily. So long as I remember to do this, the skin around his button is never red anymore.

Don’t use the syringe that comes with the button to give meds. The tip is smaller, and after washing it a few times, it will break. Then you won’t have a syringe to get the water out of the button’s balloon. You’ll need to open a new button to get a new syringe.

BTW, if you ever have problems with getting the water out of that balloon, look at the space that the tip of the syringe goes in for sucking the water out of it. There’s probably gunk in there. Just use something small to get it out. I’ve had one button in all these years where the balloon just would not deflate for me. Probably defective. Rather than making a trip to the doctor just to change a button, I wound up using the end of the cap for a Bic pen (long part) and breaking the spring in there to get it to deflate.

Additional Resources

Medline Plus

WebMd

U.S. Food and Drug Administration

Mayo Clinic’s article on Medical History: Compiling your medical family tree

Updates in Your In-Box

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Because I’ve been giving him meds through the tube for 14 years now and have learned a few tricks along the way, I thought I might be able to help someone out. Therefore,  I’m working on a rather long blog titled Medications: How to Avoid Mistakes and Get Organized. It’s full of helpful hits, information on the different types of syringes, pill crushers and cutters, and other essential items for administering medications. Hopefully even the seasoned med administrators will find a little something useful in there. If all goes well, it will be out in tomorrow’s newsletter.

We had to use the 24 inch feeding tube, not the 12″. He’d wind up with the hard connector at his hip with the 12″. Not good! He’d have little bruises, and you can be sure that it would be just one more reason for him to wake up in the middle of the night.

If the tube that you are using has a medicine port with little flaps used to grip the plug and make it easier to open, cut those little flaps off. They can get snagged on something and open the port sometime during the night. And if the person being tube fed just loves to play with the tubing, these little flaps could become a little too interesting to them. Just make sure you don’t cut them so close to the plug that you compromise the effectiveness of the plug.

I would attach the feeding tube to the button, twisting it around as far as it would go (locked in). Just make sure that you pushed the feeding tube all the way into the button. It’s easy not to, thinking that you have. Double check by pinching the head of the feeding tube with your fingers and gently try to pull it out. If it’s not locked in, it will come right out.

I would then turn the button if necessary so that the tube runs from the button, outward toward his side a tiny bit (same side that the button’s on, not the opposite), looped up just a bit, run across his middle, and down the opposite leg. He wears diapers, so I would use duct tape to keep the tube attached to his diaper. Not too far to the side so that his leg would wind up laying on the hard part that connects to the feeding bag tube, but not in the crease above his leg where it would get kinked, either. Make sure the tape’s stuck to the tube well, or you’ll wind up with not enough slack running to the button. Not too much slack across his middle, or his hand/arm might catch it. But enough slack so that he could move & twist without having the taped tube pull on his button.

Jammies for Bigger Kids

I kept the tubing under his shirt. Now that I had the feeding tube connected to him, I needed to connect the feeding bag to the feeding tube. I would then run the tube for the feeding bag up his leg, under his jammies. You connect the feeding bag to the feeding tube by just giving it a good firm twist into the feeding tube. This would be the time to make sure the medicine port is still closed! I didn’t make the mistake of not closing it more than a couple of times.

If he wore sleeper jammies, I would just cut a little hole down by the ankle and run the tubing up his leg that way. Sleeper jammies were the best because he couldn’t get at the tubing, and sleeper jammies kept his diaper from falling down Poor kid has not butt! If anyone else is running into this diaper issue, homemade onesies were my answer to the problem when it was too warm for sleeper jammies.. I got lazy and just used an undershirt (boy’s extra large or men’s small) and would use a diaper pin at the crotch. Once he was in a small adult diaper with the 2 strips of tape on either side, his diaper stopped falling down!

Anyways, the whole tube thing was kind of in the shape of the letter p, but the bottom of the loop starting closer to the right, not touching the left line (his button’s on his left, my right).

Oh, and to keep the tube attached to his button so that it doesn’t twist and disconnect or kink, I would buy that self adhesive wrap, cut it into little strips (not too small) and just wrap the feeding tube to the little flap that is usually plugging up the button when you’re not using it for feeding (see the image below). In the morning, I would just slide it off the flap part and cut it off the tube. It was too difficult to try to unwrap it. So that I didn’t have to cut strips of the self adhesive wrap every day, I used to cut 1-1/2″ x 1/2″ or so sized strips of the stuff and stick them to the roll so I’d have enough cut to last me a long time.

Eventually I stopped buying the self adhesive wrap in the first aid isle and started buying it at the tack shop. They make the same stuff to wrap a horse’s leg, only heavy duty, and less expensive. If you DO buy the stuff for horses, just check to see what it’s made out of and watch for any skin reaction since it’s made for a horse, not a person.

And to protect the skin from that inevitable stomach acid leakage, I have recently discovered Calmoseptine Ointment. I wish I had found this stuff 12 years ago! It protects better than anything else I have used. You can also use it like you would Desitin. I had to have the pharmacy order it, but it’s also available on Amazon. No prescription needed.

I hope this helps someone sleep better. 

Anyone that is responsible for giving prescription medications should read Prescription Medications: Avoid Mistakes and Get Organized. It also includes information about giving medicationss via g-tube.

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I’d imagine that anyone who has a child with special needs other than Autism would certainly want to know what happened along the way to cause whatever the special need may be. But I can also imagine that having a child with Autism would not only make you wonder, but make you mad as hell! It’s an epidemic, obviously. You don’t need a college degree to see that this is a fact, not my imagination. So what, exactly, is being done about it? Seriously, I want to know! Why are there more and more cases, instead of fewer and fewer? There has to be some specific cause. I can’t bring my self to believe that the human gene pool has all of a sudden morphed to create kids with Autism. Has it?

Let’s just say, seeing how there’s an epidemic and I haven’t seen newscast after newscast on the subject, that the government is turning a blind eye towards this issue. Don’t they realize that eventually we’ll be hit where our country is already hurting the most? Point blank: what will happen to Health Care and the economy of the United States when generations of Autistic kids grow up?

The paragraph above is aimed at the U.S. government. Not at families. I empathize completely with you. I don’t want you to think that I feel that your kids will be a burden on society at any point in their lives. Not at all. My own son will always need public services such as Medicaid and special education and adult services. I’m just trying to say that if our government doesn’t care enough about families that have an Autistic member, they should at least care about preventing further problems with our economy and Health Care. ARE they turning a blind eye? Is there some dark conspiracy that is being covered up? Do they actually know what’s causing Autism and it’s simply not being revealed to the rest of us?

Honestly, I do want to know. I care about the people that are affected by Autism. I’m mad as hell that this issue isn’t being featured on every news channel, every talk show, and every newspaper in the country until the problem is solved. Why isn’t it? I just don’t get it…how can anything else be more important than the health of the children being born every day in our very own country?

If you know of any good, reliable resources on the subject I’d like you to share them with me. What research is being done? Has anyone with credibility admitted to a possible cause? Is it really the childhood vaccinations that is reaping havoc on our kid’s health?

Please share by posting comments below this blog. You can also participate in the survey on whether or not you believe that vaccines are causing Autism.

Members can also:

• Add links to the Yellow Pages under All About Autism (photos and YouTube videos allowed)
• Post in our forum called Autism – The Epidemic
• Add videos to our video section titled All About Autism
• Add events that are related to Autism

Updates in Your In-Box

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I remember all too well the horrible feeling I had when it actually sunk in that our son Nick was severely disabled. It took awhile….a few months after we received the ‘diagnoses’. I don’t know if I was in denial, or if it’s just human nature to protect our psyche by suppressing our feelings as much as possible at first so that we can cope with the day-to-day care of our loved one with Special Needs.

Once our daily routine was down pat and I wasn’t constantly worried that I had forgotten to give him one of his many medications, I had time to think about our new way of life. Having time to think isn’t always a good thing. Your mind can run rampant with awful thoughts and way too many questions. It was at this point that the disbelief of the whole situation hit me like a freight train. Why doesn’t anyone warn you that such tragedies can happen in our lives? I can remember just sitting on the floor in Nick’s room and crying, as if doing so might possibly change his life.

This was 14 years ago, and it wasn’t until just recently that I realized that I, out of anyone, should have realized that such things can happen. My own Dad was hurt on the job, and is paralyzed from the waist down. It has happened in my life. But not to my child….it is so completely different when something happens to your own child. And I must say, I give my mom and dad so much credit for coping as well has they have. Obviously, they have had a positive attitude towards my dad’s situation or it wouldn’t have taken me so long to realize that my own dad has Special Needs. Funny how I had never looked at him in that light before.

Once I had my time to think too much, 14 years ago, the quest to find all the ‘answers’ began. What therapies does he need. What special doctors should we be visiting on a regular basis. Will he ever walk? Will he talk? Will he….and on it goes. And to top off the fact that Nick has Cerebral Palsy, Cortical Vision Impairment and is cognitively very delayed, we also had the issue of kidney failure to deal with. So therein lies another question – how long will it be before we need to start screening for a kidney donor?

So many questions. And to my dismay, no concrete answers. Ever. And I do mean never, ever. We’ve been to all the specialists. I’ve scoured the Internet and joined support groups. He may walk someday. He may talk someday. He had a kidney transplant at age 5, but no one can tell us how long his body will reap the benefits. Guess what? Doctors really don’t know everything. So there I was, still plagued with questions, unable to truly be at peace with the whole situation.

Doug and Nick, years ago.

Years go by, and to my pleasant surprise, I realize that at some point I have found peace without even trying. Was it time that helped heal the pain? Did someone say something that impacted me in a positive way? I honestly don’t know. But while reading a message posted on a support group by a woman that asked ‘how do you deal with the frustration when dealing with our special kids’, I was able to sit and put into words how I now feel. Other people said things like they pray, or take a deep breath or cry. Perhaps I didn’t quite answer her question, but here was my reply:

“For me, I had to find peace with our son’s diagnoses and all the issues that arise from them. I had to FULLY accept him, as he is, and not worry about what he will ultimately be able to do for himself. I had to stop asking those ‘questions’, realize that no one, not even all the doctors, would be able to tell me specifically what the ‘final outcome’ would be. I had to stop expecting too much and being disappointed, and learn to just live life. His cerebral palsy and cognitive abilities and health issues had to no longer be first and foremost in our lives. I used to join every support group, research, research, research…I would drive myself absolutely crazy with it all. Now I’m just happy that he’s happy. It took me years and years to come to peace with it…he’s 14 now. But it did come, and my inner peace radiates to him, and he’s a happier boy for it, too. It helps him to accept himself for who he is….”

I am in no way saying that we’ve stopped trying to help Nick become all that he can become. I’ve just stopped dwelling on everything and have learned to prioritize things as best as one can be expected to. It’s the only way I can remain sane, at least for a little while. Nor am I saying that I don’t still have my struggles. After all, I am only human.

As for my reply to this woman’s cry for help, I touched at least one person (though not the woman asking for help). This other woman thanked me for my words, and said how she needed to hear that she wasn’t the only one with these feelings. It is her response that prompted me to write this particular blog…in hopes that it reaches someone else that needs to hear that ‘you are not the only one’. And with any luck, this person will find their own inner peace and will be able to go on with life. It truly is bliss, and that Special Needs person in your life does just what the ‘label’ implies: makes it Special.

Happy Holiday’s Everyone!

Updates in Your In-Box

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Nick's Little Snowman Last Winter

Nick must have really been paying attention at school this year when they talked about turkey, family, etc.. When I went to get him out of bed on Thanksgiving morning,  I started to try to get him excited about the day. It didn’t take much, and I won’t do that again too soon! He rocked SO hard in his wheelchair for SO long (good thing for tip-bars) that he actually worked up a sweat and needed a shower! That wasn’t a big deal, but his little legs were shaking, and muscle spasms began. His legs and feet are very tight to begin with, but such excitement causes contractures that reap havoc on him. The warm shower, quiet music and leg massages we provided must have helped, because he was fine shortly after.

We visited my in-laws for turkey day this year. They’re always so wonderful with Nick. He loves his Gramma’s soft voice (she knows to be quiet), and he was amazingly gentle with his one year old cousin, Sydney. With me, his dad, and everyone else, he’ll pull at our hair, ears and nose. Not to mention the poor dogs! But he was so different with Sydney. He gently put his hand on top of her head and slowly moved it across her baby-fine hair. I always knew he loved babies, but this was truly amazing to me that he knew he needed to be so gentle with her. You know, one of those ‘oh my god’ moments.

We stayed for over 3 hours. I don’t think we’ve ever had such a good, long visit. Nick generally decides it’s time to go home within just 2 hours. We brought his iPod, which I can’t stress enough has been a day-saver for us many, many times. Nick even shared it with Sydney! His headphones were so heavy on her head that she was tipping over, LOL!

The rest of our weekend was fairly quiet, but for some reason, Nick was crazy with excitement on Sunday morning. I wish so badly sometimes that I knew what he was thinking. My guess is he had a dream of an exciting day ahead. Again, he rocked so hard he was sweating and shaking, and this time, his legs and feet stayed sore. They were still sore this morning.

He woke up happy today, though. I didn’t tell him he was going to school until about 10 minutes before we left (for fear of excitement setting in again). It’s a 35 minute drive there, and half way through the trip, he started to get upset. He wasn’t rubbing his head or digging at his hands (his self-abusive acts), but rather crying sadly. The first day back to school after a long weekend or vacation is always a tough one at first. I’m flattered that he loves to spend time with his family, but sad to see him cry. I would have stayed to make sure that he would be okay, but I have such confidence in the school that he’s at now that I left and told them to call if he didn’t settle down. I haven’t received a call from school , so I’m sure he’s fine. He absolutely loves school now. Not the case in previous classes, but that’s another story.

And I’m having a hard time doing much of anything today. It’s raining, I have laundry, other housework and shopping to do.  But it won’t get done. I’m not sure if I just miss Nick, or just need to relax after the long weekend. In either case, blogging and reading other people’s blogs is good to clear my mind.

Which reminds me, I’d like to mention a blog that a woman named Lindsey Petersen writes. She must have run across this web site and sent me an email about her blog. Let me tell you, it’s a definite Must Read! I’ve only read a couple of posts, but this woman is amazingly patient, down to earth and has a great outlook on life with kids that aren’t your average kid! The blog is titled Raising 5 Kids with Disabilities and Remaining Sane Blog. I think the title says it all! I’ll be personally inviting her to join our network. Even if she doesn’t, I’m definitely adding a link to her site in the Yellow Pages…

And I’m SO happy to see that a few more members have joined over the holiday weekend. Welcome!

I promise I’ll be working hard on adding some new gift ideas this week. I just needed the rest of today OFF.

~ Lorna

I hate changes when it comes to Nick’s supplies & meds. Especially when he’s in ‘a good place’ with no current issues to be worked out like he is now. This new button seems like it may or not be better.

Points made in the literature:

• Made of silicone (softer).
• It has raised feet for greater air flow resulting in a healthier stoma site. But does that mean that shirts, etc. will get caught underneath?
• The balloon is supposed to last for at least 90 days. We replace Nick’s button every 30. Not because the balloon is bad, but because it’s nasty with germs. The stoma site gets all red and sore quickly after the Calmoseptine ointment that we use wears off. Who knows what it looks like between the inside where the balloon is and the outside that we can see. He has a suppressed immune system, so maybe this is contributing to this issue. I really hope this doesn’t mean infection problems are on the way because insurance will only pay to replace the button every 3 months!
• Allows the parent/patient the option to actively lock the extension set or passively lock the extension set. So, not more tubes spinning and getting disconnected, or not pushed in all the way? That’ll be nice.

I had a great system for not feeding the bed when he was tube fed. Now we only use the button for extra fluids and meds, but it’s like I have OCD or something…I check to make sure the extension’s locked probably 3 times before I start giving him water/meds! LOL!