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!

 

Kids that don’t take pills

Many parents easily teach their young children to swallow pills. The sooner you can do this, the better. However, there are a subset of sensory or oral motor kids that just can’t seem to manage this task. It’s a very stressful for them and their parents.

That is our case. Every time we talk about helping my child learn this he gets very upset. It deeply stresses him because anytime he’s tried, it’s not ended well. He gags and/or vomits. He is very sensitive to tastes and smells. He gags terribly for tooth brushing or dental care.

Sometimes you have to pick your battles and you have to come to terms that your child just can’t do it right now. This doesn’t prevent you from chelating and giving supplements but you will have to be more creative than other parents.

We have so many more product formulations today than we had when I first started this and that has made it easier over the years.

I’m going to share what has worked for us. Maybe it will inspire you and help you find what will work for your child.  All in all, don’t give up, keep trying and make sure you taste the things you expect your child to take. I found out that often when he refused to take something it was because it really did taste horrible. So check!

When we started biomed he would not take a medicine syringe. He would scream, cry and vomit up whatever you gave him. The syringe was a very feared object for him and without any due cause since he did not have any previous experience with them.

How you approach kids like this is going to take some creative thinking and patience. A medicine syringe needs to be introduced slowly and in a fun way if you plan to use that. I detail the process I used in this blog post.

In the early days I was able to take one of those small juice boxes and remove some of the juice (so it doesn’t overflow when you add the vitamins). I would mix all the supplements into it and squirt it back into the box. For the life of me I have no idea how he drank this because it didn’t taste good but he did. Then one day it seemed like his tongue woke up and he refused to take it anymore. It is fairly common to have to adapt things periodically on this journey.

I moved to a variety of flavored and unflavored powders and mixed those into food and juice.

His night-time syringes didn’t last long for chelation either. From that point I moved to using miniature peanut butter cups to give chelator and a few of his supplements. Not all of them of course. He only gets 2 of these on any given day unless he is on a round.

When I use peanut butter cups for chelation, I add some extras things so he gets everything he needs. Vitamin C, magnesium, GSE, vitamin E or milk thistle all have passed the sensory taste test when mixed into the peanut butter filling with chelator. Many might be concerned about sugar on the teeth at night but I had to let go of this worry in order to chelate him. If this concerns you, you will need to work at figuring out what oral/motor issue is preventing capsule swallowing and find appropriate therapy.

What we are using now for supplements:

Bear in mind what I have listed here is just what my son has to be on right now.  These are the products I found that he will take willingly. I am sure they are many others you can use. (look for the best absorbed forms of a vitamin or mineral)

Most important!!! You don’t need all of these to chelate. My goal was to demonstrate that even with this list you can figure out a way to make it work. The essential vitamins for chelation are: vitamin C, vitamin E, magnesium and zinc. Those can all be given in powder, gummy or chewable form except vitamin E. It does not come in any of those but the gel caps are easy to puncture and mix the oil into nut butter.

Key Points to Remember:

    • Taste it! Make sure what you are asking them to take is reasonable.
    • Magnesium citrate is bitter and hard to hide.
    • Fish oil is better flavored and cold.
    • Vitamin C powder is tart, best in juice.
    • You can add calcium powder to pancakes and baked goods
    • Vitamin A, C and E are probably best not heated or cooked with.
    • Keep your probiotics at least 4 hours away from your antifungals. (everything else can be taken as it fits into the 4x a day schedule)
    • Zinc is always better with meals. It can cause nausea otherwise although I don’t find the sublinguals to do this for us.

You will find what works for your child. Just start with the basic four because sometimes once you start chelating, taking supplements becomes easier for them. Keep in mind,  zinc deficiency can be a primary reason to refuse food and supplements, so sometimes addressing this first will help.

Most of all, don’t give up! Don’t think you can’t chelate because your kid won’t take pills. It’s simply not true.

 

Organizing Our Rounds

A common questions I receive is how to organize and manage a chelation round. Over the years I’ve done several different things depending on where we were in our chelation journey. Eventually you figure out what works best for you and that’s what you stick with.

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First Step: I calculated the length and dosing times for our rounds on a sheet of paper to make sure we have the minimum of 64 hours.  Our rounds are usually 66 hours but 64 is the minimum.

Method One: Liquid dosing: In the early days when we were just starting out we used medicine syringes that I filled with chelator mixed into juice. (about a teaspoon or less of liquid)  I stored doses in empty capsules.  If we had to leave the house I took a small lunch cooler with an ice pack, the dose and syringe/juice with me. He was 3 then and this method worked for us for a short time. He was not a fan at all of someone squirting liquid into his mouth in the middle of the night as he got older.

  • Money Saver Tip: I kept all the capsules that I was emptying supplements out of to give to my kids in food/drink. I stored them in a ziplock bag and used those when dividing my chelators into smaller doses.
  • Time Saver Tip: We divide our doses for an entire round the night before we start. It makes less work during the round. One less thing to remember do.

Method Two: Ziplock bags labelled with name, chelator and dose. Pre-divide your entire rounds doses and put the capsules in the bag. Each bag should contain exactly enough doses for that round. No extras because it helps you when you forget if you gave the dose or not. You can count what’s left to see if you have an extra one, meaning you missed a dose. (ie: John 5mg DMSA, 5mg ALA)

Method Three:

I got tired of counting the capsules in the bag to make sure I didn’t forget a dose because sometimes in the middle of the night you can’t think straight. So counting is not a strong skill at 4am. You get up, dose a child or two, and then think “wait, did I take mine or not?”

This method entirely avoids that problem. I used some old supplement organizers. I cut up some printer address labels and put them on each compartment with the dosing times. The entire round is set up in the organizer.  I have one for each person chelating and it’s labelled with their name. img_20161101_114228If I am not sure if we took a dose or not, it’s very easy to figure that out by checking that dose/time spot.  No more juggling ziplok bags and dropping capsules or sometimes they would get broken if I had taken the bag with me in my purse. With these you can just remove the section with the time/doses you will need when you have to go somewhere and take it with you.

It’s also a nice visual for how close to finishing a round we are….which helps when you’re sleep deprived and trying to remember if this is day two or three. 🙂

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Never Miss Night Doses Tip:

  • Two alarms at night! Yes, two and one should be set for 5 minutes after the first one. Put the second one away from the bedside so if it does go off you have to get up to turn it off.
  • I use a bedside alarm clock and then my cell phone as my back up. Each set 5 minutes apart so if I don’t hear the first one, I should hear the second. My cell volume is all the way!
  • I use the same tone for my phone at night that we use for daytime alarms. This way it’s a tone my brain already associates with giving chelator doses.

We have not missed or been late for a night dose since I began using this method. Doing rounds is an effort I can’t afford to mess up so we use whatever precautions and planning to simplify it and ensure we don’t miss any doses.

Don’t Get Caught Unprepared: If we leave the house, we take the next two doses with us, just in case for some reason we don’t get back in time to take it. Car’s break down, traffic jams happen and sometimes doctor appointment take longer than we anticipate.

I was once caught in a situation where I had to stop at a pharmacy and buy a bottle of ALA because we forgot to bring a dose. We were too far to make it home in time to get it. These places never sell low doses either. All I could get that day were 300mg capsules. I did manage to make the smaller dose we needed rather than throw the round but spare yourself that trouble. Trust me. Just bring a dose or two with you.

Make it fool-proof. Work smarter, not harder is what I say!