More Than a Phobia

When Jack was 5 years old, I held him down while he got a blood draw at a Kaiser lab, per the instructions of the lab tech. This is among the worst moments of my life: holding my small child down as he screamed and writhed while someone hurt him. I didn’t know then that this moment would haunt us for years to come and become so much more than a needle phobia. I didn’t know this was the beginning of years of medical trauma.

I also didn’t know there was another way to get a blood draw done – that there are pediatric phlebotomists and numbing cream. I didn’t know this experience would lead to night terrors during which Jack would scream out in agony, “No, mom, nooooooo!” I didn’t know Jack was autistic, that he is often more sensitive to touch or that he is more easily overwhelmed by sensory input.

All I knew at the time was that we needed to get this blood draw. That fateful blood draw led to Jack’s leukemia diagnosis and saved his life.

7 years later, we are still struggling because of that damned blood draw. Jack was traumatized that day, and then re-traumatized over and over throughout cancer treatment. I am ashamed to say that I didn’t fight the medical staff that said I needed to hold Jack down. I pushed aside my misgivings and put my trust in them because I was intensely worried about my child’s physical health. I put Jack’s physical wellbeing over his mental health, and every failed blood draw and night terror over the years have reminded me.

I will let myself off the hook a little bit and say that the medical professionals at Kaiser that told me to hold Jack down are also at fault. Time and time again, pediatricians, oncologists, phlebotomists–again and again, we were told to hold our kid down. At one point the Child Life Specialist at Kaiser threatened Jack with, “If you don’t get your blood draw today, you may not be allowed to go home.” (David was with Jack for that and just about ripped into the lady. We knew better by that point!)

We were somewhat lucky in that because Jack had a Broviac catheter, blood draws were few and far between during treatment. We only needed to get a blood draw when there were worries that the catheter was harboring bacteria. In addition, vaccines were suspended while on treatment because Jack had no immune system.

The downside of that infrequency, though, is that Jack had longer periods of time to build up fear about blood draws. And then the end of treatment came and the Broviac was removed. After that, we had to get Jack blood draws monthly.

The first time we went to get a blood draw after the Broviac catheter was removed was a disaster. I took Jack to the lab and as soon as he stepped into the room he FLIPPED OUT. He started shaking, crying, and moaning. He couldn’t seem to hear anything I was saying. I tried to hold him to comfort him and he fought me. Finally he fled the lab, leaving me behind as he got out of there as fast as he could.

It was clear to me, as a person living with C-PTSD, that Jack was experiencing a flashback.

We found a therapist who specialized in exposure therapy. We took Jack to therapy weekly to work on desensitizing him to photos and videos of blood draws, working up to getting a blood draw. Jack even put together a story with photos of getting a blood draw successfully.

The therapist pointed out some things that fed Jack’s fears. Holding him down made him feel that he had no control and no protection. Infrequency and distractions meant Jack wasn’t getting desensitized and the fear would just build.

(Interestingly enough, that therapist didn’t think Jack had PTSD. But he also completely missed Jack’s autism, saying that he is just quirky…)

It took time and patience, but finally Jack was successful at getting blood draws on a fairly regular basis. We had to be very diligent about letting the lab techs no that we would not be holding him down and that Jack needed to be the one to say he was ready for the draw. One thing that helped a TON was finding a very understanding lab tech that Jack really liked. We planned blood draws for when we knew he would be there.

Blood draws were still not easy. Jack still needed to do “exposures” at home in between lab visits (which usually involved watching videos of blood draws and giving ratings of his anxiety level). Often visits to the lab were not successful, and took several attempts.

Sometime after Jack’s last blood draw (May 2017), his favorite lab tech left Kaiser. Jack hasn’t been able to get a blood draw since then despite many attempts. (He also hasn’t been able to get any vaccines since cancer treatment ended in 2015.)

Earlier this year, Jack’s oncologist finally said we were far enough out from treatment that we could discontinue blood draws. If we saw anything that had us concerned, we could cross that bridge when we got to it.

We were relieved BUT…Jack now needs a TdaP vaccine for 7th grade. And so we are stuck again. We have a new therapist and she is awesome. She really gets Jack and he connects with her in a way he hasn’t connected with any other therapist. We are making progress in building Jack’s tolerance to discomfort, but it’s not happening quickly enough.

I’ve gotten a few letters now from the school district reminding us about the vaccine. Registration day is 11 days. I am freaking out.

Last week I wrote the following to Jack’s pediatrician:

I’m writing because we need to get Jack his TdaP vaccine in order for him to enroll in 7th grade. Jack is in therapy and we are trying to acclimate him to feeling uncomfortable so that he doesn’t just flee, but I’m concerned that we won’t be able to do it in time for school registration on 8/15. Are there any options available to us to make this happen within this timeframe without further traumatizing Jack (i.e. laughing gas and/or an alternate environment with someone experienced with kids with autism & trauma)? Often we’ve been instructed to hold Jack down and that has made the issue much, much worse!

We are trying to get this done on our own, but I would like to be prepared with alternatives. Please let me know.

Here is his response:

I wish I had an easy answer for the TdaP. I can certainly put some numbing creme (EMLA) as a prescription on file for him. I’m not sure, however, how much it actually helps with the deeper pain of the needle, and certainly what we really would need to treat is the anxiety around the experience, then the actual sting of the needle becomes minor. Things are, of course, a bit more complex for him as he has had plenty of experiences of the healthcare system traumatizing him before during his cancer treatment.

I would try to speak to his intellect. His power to use his best “mindfulness blocking technique” that can empower him to block out all sensation from that area, and then maybe a bit of EMLA applied 30 – 60 min before will help with that “numbing experience.”

I have faith that he can do this.

Well. I’m glad you have faith, doc. We have tried EMLA and we have tried mindfulness and we have tried EVERY FUCKING THING and we haven’t been successful in over a year now.

We’re out of time and we have no options. If Jack can’t use mind over matter, if our best efforts at desensitization and numbing cream and a sedative don’t work, we’re going to have to hold him down.

This is hell.

Childhood Medical Trauma

3 thoughts on “More Than a Phobia”

  1. This sounds so hard. I don’t mean to offer assvice, but has anyone talked about an anxiety med for the vaccine? I don’t know if that would make him feel *more* out of control, but certainly adults with anxiety are offered both medical and therapeutic tools for anxiety. It seems like the American Medial Establishment just expects kids to “get over it.” Simplistic distraction techniques don’t work on kids with extremely high intellects, let alone with an autism diagnosis and past medical trauma.

    1. We did get a prescription for an anti-anxiety medication not too long ago. We tried a low dose prior to heading to the lab and Jack said it just made him feel weird, but we are going to try a bit of a higher dose and see how it goes. I talked to Jack and we made a plan that (fingers crossed) will help. We will see…

  2. This is so sad to hear. Sigh. I really feel for you and for Jack. Zoe has a bit of a needle phobia after treatment, but not to this level. I have no advice to give but I send you positive energy to get through this!!

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