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Friday, June 22, 2007

Shocking Lack of Pain Management

Pain management or the lack of it for children has been on my mind a lot lately. I know that many of you may not agree with me but I feel very passionately about not subjecting special needs children to pain. Of course on the surface actually everyone will agree with me. However, I find it is not so in practice. I have a Zero Tolerance Policy when it comes to any sort of pain for Ellie, emotional or physical.

My point is this, Ellie and children like her have more than their fair share of pain dealt to them, and in some cases like that of the premature infant, from day one. With things that are not emergencies (and even during emergencies) why not elect for the best pain management possible?

There are two non-emergency procedures in which I find the most shocking lack of pain management: Vaccination/injections and Botox injections. I am always shocked and then saddened when I hear about children who get Botox injections with no pain management. (And yes, I know this is a first world country problem. But since I live in the first world, it still applies.)

I will start with vaccinations.

First of all I will say that we have never managed Ellie’s pain well for vaccinations. I would try to prepare her that it was coming. In some cases give her Tylenol or Motrin afterward if the doctor said it was ok. But usually it was just hold her, tell her she’s brave and that I was sorry she had to get an aowie and try not to cry myself while she wailed.

Today, after a very enlightening conversation with our dear friend and guardian angel Garda (that is her real name), I found that there are two ways to manage the pain of vaccination injections. Garda is an RN extraordinaire, who is an expert at nursing and keeping healthy and comfortable the special needs child; especially children with brain damage and cerebral palsy. She has been a Godsend in my world and helped Ellie and Dave and I through many difficult things.

Regarding minimizing the pain of injections there are two important things to consider: injection site and numbing of the skin.

When giving a vaccination you need to give it on the side or the
ventrogluteal site NOT the top of the upper thigh. There are 70 percent more pain receptors in the top of the thigh. Here is a description from Wong On Web!. Thanks to Garda for this excellent resource.

With the rapid advances in immunizations against childhood diseases has come the dilemma of choosing safe sites for multiple intramuscular injections. By 18 months of age, infants can receive 20 injections, with as many as 5 in one visit, and each should be given at a separate site! Literally our infants have become "pin cushions."

The acceptable injection sites for infants include both the vastus lateralis (outer thigh) and the ventrogluteal muscle. Unfortunately, many health professionals are unfamiliar with the ventrogluteal or hip site and confuse it with the dorsogluteal or buttock site. The latter should not be used until the child has been walking in order to develop the muscle mass. The dorsogluteal site is dangerously close to the sciatic nerve and is covered with abundant subcutaneous tissue in many people. Its landmarks, especially the outer boundary, are poorly defined. I do not recommend this site unless no other muscle area is available for an IM injection.

On the other hand, the ventrogluteal site is relatively free of major nerves and blood vessels, the muscle is large and well defined, and the landmarks are easy to locate. It is an excellent IM injection site, even in infants. Simply place the palm of your hand over the greater trochanter (hip joint), index finger over the anterior superior iliac tubercle, and middle finger along the posterior iliac crest. Inject perpendicular into the center of the V formed by the separated fingers.

* It has been my experience that this site is less painful than the vastus lateralis. Of course, every effort should be made to reduce the pain of the injection by using good technique and pain control measures, such as EMLA or a vapocoolant.

*An excellent resource is Reducing the Anxiety and Pain of Injections: A Guide Based On A Composite Of Research Data, Clinical Studies, And Expert Opinion, Reorder # BDM#01. Available from Becton Dickinson Media Center, 1 Becton Dr., Franklin Lakes, NJ 07417; 800-ALL-MEDIA; fax 1-201-847-4862.

As you can read, the Ventrogluteal site is pretty far from the top center of the thigh where Ellie has received EVERY vaccination shot EVER.

The other seriously simple stupid solution to minimizing pain of injections that does not involve any costly or drug interacting chemicals is the good ol’ ice cube.

Alton Brown would call this Good Medicine. Before the shot take and ice cube in plastic baggy and put it on the injection site for 20 to 30 seconds then swab with alcohol and give the shot.

Why has no one ever taken the time to do this for Ellie? WHY! I am up in arms about it. But you better believe that the next time Ellie has to get a shot I will be there with my ice cubes and insisting it be injected in the Ventrogluteal Site (which I have to say is another one of those fun words to say. Once you say it a couple of time it just rolls off the tongue. Ventrogluteal, ventrogluteal, ventrogluteal.

I have read that you say a name out loud three times fast you won’t forget it. So repeat after me: Ventrogluteal, etc., etc. I just don’t want you to forget that word the next time you are waiting for the nurse so when she comes in you can casually say, whilst holding your baby as far away from her as possible, “You are planning to make sure the injection is going in at the Ventrogluteal site right? You know some people tend to forget that and give it on top of the thigh.” That way they can say, “Oh of course.” And others might say, “Certainly, in just a moment” as they go into the back to look that up.

In fairness to myself and all the other parents out there subjecting their children to painful vaccinations, I have to say, no one ever went to such careful measures when I was a child receiving shots. It was really gawd awful painful when I was a kid, so I learned then that shots were just painful. And that was that.

This is why I accepted that as normal and never asked if there was anything that could be done to help. I have to say too that I myself was a NICU baby and had lots of shots as a newborn and then as a young child from operations and to this day I am needle phobic. I have to consciously control my breathing not to pass out even to give blood. Maybe that is why when Ellie has to go through it I have to keep it together to comfort her though I just want to go ahead and have a good cry with her. ARRRG!

Here is my RANT about Botox injections given without pain meds. I describe in depth the pain management and the use of Botox for Ellie

Botox injections tend to be the most painful because you are delivering fluid into the muscle, and not just once. Ellie had over 6 injections.

Most children who would benefit from pain management during this procedure. I realized some children have massive brain damage. That said, pain is a brain stem issue. The brain stem is the most primitive part of the brain and as such mightily aware of pain because it’s all about survival. Therefore to say your child has brain damage and can’t feel it or will quickly forget it are NOT good reasons to not manage their pain.

Here are some common excuses I have heard about why children are subjected to Botox injections with no pain medication:

1. The doctor’s office can’t sedate and the hospital is 3 hours away.
My response: You get Botox ever 6 months, that’s only twice a year or less. Find a way to get to a hospital so that your child can get pain meds. Be inconvenienced. Inconvenience your friends of you have to. Parenting is not about convenience.

2. My Pediatrician said it’s not necessary and that most kids don’t get sedated for it.

This is total crap. Insist on pain management or get a new Pediatrician if they will not come on board. Pain leaves an impression on the body. Cells have memory. Children with medical issues experience so much pain and are often traumatized by it. Why, why, why add to this? I have not heard one good argument yet to answer that question.

3. I do understand the argument that sedation is not good for any child especially those who are medically fragile. This is in fact why we waited so long (2 years to be exact) before trying the Botox on Ellie. But if your child is very medically fragile, maybe the Botox is not the best thing for them at that time.

4. It’s not necessarily painful for every child. (This is the, “Well my kid is so brain damaged he/she won’t feel or remember it argument.”)

I hate this argument most of all. It assumes so many awful things about not only the rights of someone with disability but also their value in life. Also, I ask back, are you really sure they don’t feel it? Prove it! Just because someone can’t call out in pain or protest doesn’t mean they are not in great pain. I do know of one child whose mother is able to distract them by singing to them during the treatment and that child truly does not feel it. But this child also is very rare and has a brain injury in the brainstem that occurred in the first trimester inutero. Most children with brain injuries have them during or after birth where the brain is fully formed. Preemies are also born, even the earliest ones, with more brain development than the child I am referring to. So just because you might hear of one kid this works for, it won’t work from the great majority.

5. Eventhough we had three nurses restraining my child I still did not insist on pain meds.

I have no response to this except THIS ENTIRE POST.

6. My child’s sensory integration issues make taking off the
Tegaderm/ tape used for the Emla cream unbearable for her.

To this I say fair enough, don’t use Tegaderm or tape especially when
plastic wrap will work just fine. Why not practice with lotion and plastic wrap before hand to help them get used to the idea? Ellie has a lot of sensory defensiveness I am not talking from inexperience here.

That ends my rant about pain management or the lack thereof for children, especially those with disabilities.