Viruses? Still?

We went for our follow-up visit with our holistic doc. We first saw her in the fall of 2016 and after some supplementation it was time to repeat some blood work and see where to go next.

I was fairly surprised at the blood results really. Some of his deficiencies are improving which is great. Vitamin D is up to 60, so we can cut the dose back to 5,000 IU per day. Iron still needs some work but it’s a lot better.

Of course his DHEA and pregnenolone are still low since he isn’t taking those, but they have gone up from the previous test. His morning cortisol is also excellent thanks to adrenal cortex glandular.

We have reduced his insulin and glucose but they need to come down further. So we will keep going with the chromium with meals and protein in his diet.

We need to add in sea salt to his water.

The real kicker here was his labs from November showed low neutrophils and high lymphocytes. The doctor thought maybe he was getting over a virus which I thought was odd because he hadn’t been sick. Well his new labs show even lower neutrophils* and higher lymphocytes and he hasn’t been sick. Couple that in with thyroid antibodies and the doctor suspects there is an underlying viral problem causing autoimmunity.

When I saw his new labs I had a flashback because I knew I had seen this before. I went over his old labs and sure enough in 2010 things were normal but in 2011, we saw neutropenia and high lymphocytes. (absolute neuts went from 3.9-1.5 which is why we stopped using DMSA)

After those abnormal 2011 labs I did an antiviral protocol for him. Which is why I’m surprised to see a viral problem.

It seems that might not matter because you can get a virus at any time and if you’re immune system isn’t strong enough to clear it….well, it’s going to stick around for a while. It is also possible he was exposed to a different virus recently. In either case, he’s had this lab profile longer than is normal for a passing cold or virus. It also lines up with the slightly elevated TSH I’ve been seeing the past few years.

So my new marching orders are to add:

I’m also considering Lysine for suspected Epstein Barr since it’s most associated with causing thyroid antibodies.

I am further considering niacinamide which is great for autoimmunity. I may end up  repeating our previous antiviral protocol with olive leaf and Virastop. (now called Enzyme Defense). I’m not sure.

The doctor has recommend Low Dose Naltrexone at 1mg at bedtime for 3 months. Then she wants to re-test him.  LDN makes has a great track record with correcting autoimmunity. (I might be next then…hmm?)

The key here is going to getting more supplements into him.


*low absolute neutrophils is covered in Fight Autism and Win Second Edition. The incidence of neutropenia on blood work is contradictory for the use of DMSA for chelation.

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.

Round 190, re-trying DMSA again

We had done 170 rounds with DMSA/ALA before we discontinued DMSA.  At that point we had to use ALA only because we found low absolute neutrophils (neutropenia) on a routine blood test. Neutropenia is sort of the “don’t use this or take a break” marker for DMSA.

So we continued to chelate with ALA only until this last round, number 190. I decided to try a very low dose of DMSA based on the recommendations that it’s ok even for kids with “low neuts” as long as you keep the dose at 5mg and only for one round a month.

His labs in November were in range but the low-end of the range. Here we are now March, so I figured they were probably better by now. The doctor through he was getting over a virus at the time of the labs based on neutrophils and lymphocyte levels.

Plus we were scheduled to have lab work done next week anyway so that gave us the prefect opportunity to re-check his absolute neutrophil levels and make sure they didn’t drop any lower. If they do, I won’t be using DMSA for a while.

He has been reporting an increase in sensory symptoms on rounds, and this round didn’t disappoint! A bit more oral sensory, brain fog and reporting he felt tired. Other than that, nothing else to say about it. No gains, no set backs. Now we gear up for those labs next week!