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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
here.

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.

11 comments:

catherine said...

we use emla for all of BB's blood work (a monthly affair) but being the bad mom that i am, i forgot the emla and let him get 4 (yes, 4) shots last week with nothing! next time. also, i hoard the soft tape that sticks only to itself for wrapping him up after the blood work (i don't care if the people at cvs think i'm crazy for buying 4 rolls at a time . . . or if the phlebotomist thinks we're nuts when we roll in with a ziploc full of supplies). i agree that plastic wrap is just as good as that super sticky stuff. very timely post.

Dream Mom said...

I think it's great that you advocate for her.

Dear Son rarely cried and did not seem troubled by vaccinations or when they took levels. I used a trick though-I'd take a musical toothbrush along and hold it in front of him. I'd hit the play button and they play a song for two minutes. They were more than finished by then. Why a musical toothbrush vs. some other toys? Because it was small and didn't take up much space. By the way, I never used that one for his teeth, only for shots or levels.

There are some things that Dear Son HATES and cause his a lot of grief. He hates when people touch his face.

Also, so many times they want to put a catheter in him to check for a urinary track infections in the ER. I tell them no-he's never had one in 15 years and they aren't doing it. I ask them if they ever had a catheter put in them and they say "no".

I always question anything that's invasive to him or that would be painful. I am his one and only advocate for that.

Good for you for sticking up for Ellie!

Now, if I can just remember, "trans...."

Lisa said...

When I was working in child life in peds oncology, I was shocked at the disregard for pain management in children. The biggest issue is that good, planned pain management takes longer. Emla or Elamax cream is easy to use but it takes up to 30 minutes to work. It is not hard to hand it off to the parent and plan ahead so the staff isn't waiting 30 minutes. The other issue was doing the prep work before hand so that every procedure did not require physically restraining the kid. The act of restraining sometimes is more traumatic than the procedure itself, and can have lasting effects. I am a firm believer in no restraints for kids during medical procedures. I know sometimes it cannot be avoided, but many times it can.

Last year, my son ended up in the ER and needed bloodwork. They wanted me to leave so that they could restrain him. I said under no circumstances will I leave or will he be restrained. I did hold him so that my arm was between his head and his arm, but I did not restrain. I used distraction techniques and there was minimal fuss or movement during the venipuncture. If there would have been more time to figure out a diagnosis, (we were ruling out meningitis), I would have also insisted on emla. This was much less traumatic than if I would have handed him over to strangers to restrain him and stick a needle in his arm unexpectedly.

Your info about the alternative puncture site is great, I will have to bring this up next vaccination time.

Keep fighting for good pain management for Ellie. They won't bother with it, especially with a noncommunicative disabled child, unless you make it a priority.

Kay Olson said...

Anecdotally, I've heard of several cases of developmentally disabled children and adults denied pain management for that most odious reason -- these people can't feel pain.

Kathryn, are shots especially painful for people with CP because of tensed muscles?

Kathryn said...

Catherine - I think you are way ahead of the almost everyone having the wherewithall to have gotten the emla cream and used it all along. I have never used it for any of Ellie's blood work. But now since I know about it because of the Botox I am going to use the next time she has to get her levels checked. Time, energy, conscientiousness, and willingness to do the right thing is what it takes. Looking crazy publicly is the least of it. Maybe people will learn a thing or two from you.

Dream Mom - good for you back sticking up for Dear Son. They try the catheter thing on Ellie all the time in the ER. I swear it's just anxious Residents doing a combination of two things- one getting to learn that procedure and two covering themselves from screw up. We have refused that being done too.

I think if you can divert him and that works for him then great. I just think most kids won't be that easy to distract. But like I mentioned, I have a friend who does something similar with her child and it does work. I think you will know if it doesn't because the kid will need to be restrained or have some strong reaction.


Lisa - Hooray for you too not leaving your son to be restrained alone without you. It does take time and patience and planning to treat people respectfully and correctly sometimes. I think it is a parent's role to make sure this happens for this children. Not to say I have been perfect about it because I should have been using the Emla Cream all along for Ellie's bloodwork. That said, I have advocated for her and refused many procedures that would needlessly cause her pain. As a parent you have to stay constantly vigilant however because sometimes stuff is just sprung on us in Doctor's offices.


Kay - that is truly odious. Just despicable. Those who are mute in our society truly suffer. I worry about this for Ellie when I am gone.

Regarding the pain and high tone - I really don't know. It seems logical that if a muscle is firing there will be more blood in it and more nerve endings activated therefore more pain receptors on high alert. So it seems like that might be the case. Ellie is mostly hypotonic and can barely tell me about her pain except when she is in pain. So I don't have a good answer. If you do get an answer from someone who would really know, pass it my way because it's a very important question you pose. If it's true, people with high tone cp should get the best pain management care and possibly get higher doses than people without high tone. So many implications there.

Chrystie said...

Oh, man, Kathryn, what an amazingly timely post. You are tugging at my heart-strings more than you know with this one! First of all, I just wanna hug your sweet Ellie super-tight, when thinking of her painful shots, poor, precious babe. It is THE THE THE worst thing in life to watch your child in pain (and you're right: preemies experience extra pain from day one...makes me wanna cry!).

The reason why this post really hit home for me was because we saw the orthopedic surgeon and physiatrist this week, and they suggested Botox for (my) Ellie in a few months. I knew it was coming, and I've done a lot of research on it. I'm okay with the thought of her receiving the drug, as the risks are fairly low. However, I have ALWAYS been concerned about the painfulness of the actual injection. I asked the doctors about anethesia of some sort, and both of them kinda brushed it off, and said that since they would perform the injection at the clinic, not the hospital, anethesia wasn't an option. It bothered me, but since we were just at the "exploring our options" stage, without setting an actual appointment for the Botox, I thought I would do a bit more research before becoming "Bitchy Mom".

Your post has really convicted me, and reminded me that I am Ellie's NUMBER ONE (and sometimes only) advocate and that I will do everything in my power to get her the care she needs and deserves WITHOUT EXPERIENCING NEEDLESS PAIN. If this means that we have to drive 8 hours to a hospital, to find a doctor who believes in administering some sort of anethesia before injecting the Botox, then so be it.

I wonder, too, about Kay's comments about tight (spastic) muscles, and the possibility of the Botox being even more painful in those situations. My Ellie is hypertonic (and the way the doctor explained it, the Botox would be injected into the muscles that are especially tight, as to paralyze them, giving the weaker muscles a chance to "exercise" themselves). There is no way in h-e-double-hockey-sticks that I will let someone stick a huge needle into my daughter's tight muscles (which will be even tighter if she's under diress) if it means that she will be in excrutiating pain! Oh my goodness, even the THOUGHT makes me want to vomit!

Sorry for babbling here, but you really got me thinking, Kathryn (thanks!). Your Ellie is just so very blessed to have you has her mom. She can feel totally secure in the fact that you are looking out for her in such awesome ways.

Kathryn said...

Chrystie - yes - that just kills me that the doctors blew off your pain management concerns. Often times it's all about what is convenient for them. Our Pedi out in LA threatened to leave us because we wanted to switch hospitals to get better neuro care for Ellie.

Stick to your guns even if you have to travel. Even with the meds we give Ellie, it's still a horrible procedure. I can honestly say though that due to the meds she is not traumatized by it and really does recover so quickly with no emotional residual. Versed is good that way. It spaces her out and then makes her forget and dissipates really quickly.

As I write this I am a little appalled at myself because I wasn't going to be the type of mom that relied on drugs for her child. See my post on the Botox too - the link is in the pain post. I describe in depth why we made the decision and then the entire procedure.

Good luck! I am really glad that my post may have saved your Ellie (such a great name, no?!) a lot of pain.

Brian said...
This comment has been removed by a blog administrator.
Fiona -Moment by Moment said...

Hi Kathryn and Ellie,

Thank you for writing your blog. I am a mum of a baby girl born also at 27+5 my daughter however does not have CP.
I read your blog with much interest as I would like to learn more about CP, this is due to having Airlie early and learning that much more happens in this world and until we are shown we are niave to it. I would like to learn more as a general repect thing to people. My daughter had every chance of having cp.
I have a website and a blog www.momentbymoment.com.au which has been set up to support premature babies and I want to put all things that can effect a prem baby not just the things that have effected my daughter.
Could I please add your blog to allow others to read your posts they are very informative and I commend you on doing so.

Good luck to you and Ellie and I also wanted to suggest using sucros (i think this is how its spelt) a sugar like substance that is put in a premmie babies mouth when they have bloods or treatments done in the hospital NICU where Airlie was cared for, I am not sure if it works in the same manner for older children or not though.
Ellie is so brave and I can only imagine how it is for you. Seeing Airlie go through what she has was hard I never left her side in the hospital when treatments were done and when bloods were done outside of hospital and they wanted me to leave i too said NO I would prefer to be with her and comfort her and have her always know I will stand by her for everything then to leave her and have complete strangers hold her down. Once i held her and i breastfed her which was sucessful the nurses couldnt get over it such a tiny girl being so strong.

take care and I hope you dont mind me posting to you.

Fiona

Christina said...

Hi,
I just found your blog and I am enjoying it very much!

I am a PICU nurse and I like to read parents' perspectives on medical issues. (I am not yet quite a parent myself- currently 27 weeks pregnant however). I applaud you for being forward and proactive about pain management. Pediatricians mean well but they just do not get enough training or support to know about and comfortably use different pain control methods. Why? I do not know. I could tell you horror stories from the PICU- we nurses so often have to beg and plead for sufficient pain medications orders and even then we don't generally get enough of what we need to adequately control our patients' pain. Even for horrible post-surgical pain and anxiety. A lot of pediatricians are scared to give too many or too much pain medications, and this results in the patients being chronically undermedicated, even in the ICU. I have noted this especially happens to special needs/developmentally delayed kids. Drs are uncertain how their systems will react, so they under-prescribe.

I have to make one comment however and say that as important as it is for parents to be proactive and concerned about pain control, there are times, especially in ICU and ER situations in which blood needs to be drawn, urine needs to be sampled (via a sterile method such as a catheter) and IVs need to be inserted quickly. This can be upsetting to the child and parents, but I've seen parents argue against various interventions or wanting to wait for EMLA, etc, etc because they don't want their child hurt, but they are in fact putting their child at much greater future risk by delaying or refusing treatments. Kids can spiral downhill in literally minutes (if you've ever watched meningococcal meningitis take a child's life when hours before the child was sitting and talking to you, you will never forget it). So sometimes when we insist on doing invasive procedures quickly and even holding them down to get everything done, it is not done for our convience or out of not wanting pain control for them, it is because we suspect that something very scary may be brewing and it needs to be addressed quickly.

Of course this does not apply to what you were discussing in your post- any sort of routine procedures- I just wanted parents to keep this knowledge in the back of their heads for certain situations. Good medical staff should be able to clue you in as to when you need to allow them to be aggressive with treatments versus when procedure are more routine and can be prepared for and discussed. On the flip side, good medical staff should be able to do emergency procedures quickly and effciently, such that the child is subjected to a minimum of trauma. And there is another reason children should always be treated at experienced, dedicated pediatric medical centers...but that is a topic for another day :)

Best wishes! Christina

Kathryn said...

Fiona - good luck with your online business and thanks for your comment.

Christina - Thanks for your comments as well. I couldn't agree with your more that parents have to be proactive BUT that there are definitely times when things have to move fast. That is what I meant about emergencies in the post. We have spent more time than most medical students in the ER and we do advocate for Ellie as best we can. The probem comes as you so deftly point out when the medical person is inexperienced. Once when Ellie was a baby they stuck her 7 times before they could get the IV in. After that we said never again and on our intake into the ER always tell them she is a really hard stick and that they should get their best person lined up stat.

That is really interesting about the pediatricians underperscribing pain meds. I think it really does fall to the parents to know their own child inside and out and to really advocate when they can for pain control.

The sad upshot is that lots of kids, including Ellie, develope huge pain tolerance that can also be life threatening. I know of a child, normal cognitively but who had lots of hospitalizations since birth, who died from a blocked colon that she did not complain about because she had such a huge pain tolerance level. Very sad. I worry about this for Ellie. She rarely cries and when she does we know she is in pain.

Great to have you commenting!