Dear Plebotomists and nurses….

We had labs drawn today. Every time we do I see a problem that is facing most of us with older children who might be either on the spectrum, developmentally delayed or have sensory issues that interfere with their response to medical and dental treatment. (trust me, sensory kids are terrible when it comes to dental or medical things and you can’t really blame the. They feel everything a hundreds times more than we do)

For my child blood work is rough. It elicits nightmares days before it is going to be done. Unfortunately this all comes from a bad experience in a hospital ER when my son was young. I’ve been told by some lab techs that they hear this story all too often and it doesn’t have to happen with the right training to work with children. I agree because it’s left him with a life long fear of needles.

I do tell each tech ahead of time that my son has anxiety with blood draws. Sometimes they listen to me and sometimes like the least time, they say stupid things like “you’re a big boy, there isn’t any need for this” while my child is hyperventilating. Then I must step in and talk to him and calm him down.  Anxiety is anxiety folks regardless of how “big” one is, otherwise adults wouldn’t get it. Once you have been traumatized by something….fear is a normal expectation.

So what I wish to convey to those in the this field or the medical community is not to judge what a person can handle based on their size or age. Don’t assume. I’m there with him for a good reason during this process. He might look like he’s nearly an adult, but that doesn’t mean he doesn’t have a valid terrifying fear about the experience.

Thankfully, I can get him through blood draws but you must let me do that because I know him better than you do. I know what works. I  talk to him and distract him with an in-depth conversation about something he has an interest in. Distraction is your friend on this one!

What does help:

  • Distractions! Please talk about anything but needles and blood work
  • Make it a point NOT to show him all tubes and the needle unless he asks
  • Please go step by step verbally and tell him what you are doing before you do it and leave out terror words like “poke”, “stab”, “pain”
  • Keep the tourniquet on the LEAST amount of time you have too, this is a very disturbing pain sensation for sensory kids. He says it’s worse than the needle stick.
  • Use a butterfly needle, it hurts less because it’s not moving around when you change tubes.
  • Please don’t assume or judge when a 14-year-old (or older) needs mom in the room. Trust me, you want me there. I know how to calm him down.

None of our jobs are easy and it is hard for medical personnel to know our kids have these issues when they might otherwise look “OK” until they are in the blood draw chair.  Labs could help by keeping their ped specialized techs in the same locations instead of rotating techs. A trust of sorts get build when you have the same lab tech each time. You know what to expect!

We’ve had some great and very patient labs techs, but we don’t always get the same one. This time was not the best experience for him because he had a different tech and she put the tourniquet on and then says “I’ll be right back” and runs out of the room. Then I’m left with a panicking child that is losing control because it’s hurting a LOT.  Then he’s all worked up and we haven’t even done the puncture yet or collected the blood.

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Why you need to understand lab tests

I’ve learned over the years that I have to get a copy of any lab work we have done. There have been too many occasions I’ve taken my children to the doctor with a host of symptoms and they have run blood work. I am contacted and told “everything’s normal” and that’s where my concerns are dismissed. No further investigating is done, no further questions and no resolution. This scenario is not just limited to my kids, I’ve had it happen to me more times than I can count.

I began insisting on lab copies several years ago and now with digital records this is much easier to go. Most of the time something on them is not normal. Often times they are actually flagged by the lab as being out of range.  Now in some cases like BUN ratio this might not be relevant for a child because that can happen if they are not well hydrated when the blood is drawn.  In some cases the labs used the wrong ranges for the child’s age so you need to make sure the correct ones are listed. But in other cases like iron, or vitamin D, thyroid levels, blood count etc., it really is relevant if they are flagged as abnormal or just not in the optimal range.

So as you can imagine I was very upset to read the office visit summary for my son last week and see that one of his diagnosis is “anemia, unspecified”.  Hmmm? Odd it never mentioned at the visit.

This was in reference to some blood work that was run several years ago. It made me wonder why his doctor did not also order iron this time to see if it had normalized. Especially when I’m reporting that one of his symptoms is fatigue.  No wonder the poor kid is tired a lot. He has a low hematocrit, elevated TSH, low FT4 and low vitamin D.

I’m glad I took the initiative to get the labs and read them. I’m also glad I’ve spent years educating myself on reading lab work and working with reference ranges for healthy functional levels. Gosh how many other kids in that practice are walking around with low vitamin D and iron anemia? His vitamin D was so low the lab flagged as deficiency.

We have begun vitamin D of course. We are starting iron also. I will need to find a practitioner to do further investigation of his thyroid because his TSH is higher than it should be for someone whose thyroid works properly. However, low vitamin D or iron will both also affect the thyroid.

I chose to write about this because of how many times I encounter this same sort of issue on my support forum or with parents I am conferring with. This tells me it’s a very common issue to have deficiencies missed that are found on lab work.

We are paying doctors for a service, which is to evaluate your child’s health. If they are not doing that properly or lack the knowledge to do so, find someone else.  You wouldn’t keep taking your car to a mechanic that only changes the oil and ignores the fact your tires are bald and the brakes are worn out. That would be dangerous. So too is ignoring iron anemia, vitamin D deficiency or hypothyroidism as they all contribute to health problems.

I am not blaming doctors because it’s also important to remember that most of our doctors are now bound to treat using medical insurance rules which tie their hands on what tests they can order, and what things they can treat…and worse yet, how they can treat it. So the best intentions to help you may not help until you find a doctor that does not participate in this profit driven system of health insurance. These private doctors are not bound by these rules and actually have the free rein to treat you based on what they feel is actually needed.

Every time we have come across symptoms backed by lab work I have had to employ a private doctor and pay out-of-pocket but I do get results. They are able to diagnose, run the tests needed and actually treat the condition without hesitation that my “insurance” will refuse.

I still see no reason a pediatrician should be missing low vitamin D at 23 when it’s flagged by the lab. Thankfully my son has a smart mommy who knows how to recognize that “L” on the lab work and buy him some vitamin D!

By the way, adequate vitamin D levels are the best prevention for the flu.