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!

 

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Sensory Conclusion

Fireworks July 2012I’m wrapping up my gluten and tactile defensiveness experiment and posting our conclusions. Here is what our journal says:

December 9, 2014: Based on my recovery journal I raised my son’s chelator dose for round 170 from 25mg to 30mg of ALA with 5mg of DMSA. He did well on the round other than being a bit irritable from the sleep disruptions. He was more cuddly than usual and didn’t mind me touching his head. Which was a sensory no-no normally. He began bringing me paper off the printer, although only touching it with his finger nails to pick it up. Normally, he would not touch it. He reports to me that he likes to cuddle at bed time because his sensory is not as bad at night, like it is earlier in the day.

December 12, 2015: We finished his first bottle of flower essence drops (6 weeks on drops) and we wait and watch for any regression in the gains he got. He also got a nasty cold virus with fever and body aches that week but got over it quickly.

December 24, 2014: We restarted the flower essence remedy because we noticed a dip in his mood and energy level. He quickly improved. We had the first normal holiday ever since he was born!

At this point he still had the sensory tactile problem but was doing well in all other areas.

January 14, 2015: He asks me to help him learn to eat better and to be his “health coach”. He wants to learn about the gluten-free diet mommy is on. He tries gf/cf home-made soup and several other gf meals willingly. He beings eating many foods he’s never eaten before.

January 16, 2015: he tells me he wants to try being gluten-free for a while to see how he likes it.

January 19, 2015: We do round 171 at 30mg of ALA. My son has no issues on this round. In fact he writes “I love you mom” in the snow in the yard and comes inside to tell me he has a surprise for me. I am filled with tears of joy.

January 23, 2015: My son takes it upon himself to bake GF peanut butter cookies on his own. something that NEVER would have happened prior.

January 26, 2015: My son can touch and use paper without the terrible tingling shocking sensation for the first time since he was about 4 years old. We are super happy. He is still gluten-free but we run out of flower essence.

February 10, 2015: He has a sensory set back. I suspect a gluten infraction because that was the first time we took him out to eat while on the diet.

February 13, 2015: Sensory is gone again. It took 3 days to go away after it appeared.

February 19 – March 4, 2015: My son gets a bad cold which flares up yeast. So we give a dose of GSE and it goes away, We end up on olive leaf extract to resolve the sinus infection that comes after. No sensory returns despite a huge gluten infraction.

March 7, 2015: gluten infraction, no sensory symptoms.

March 17, 2015: start parasite cleanse. Also tried captuo flour. No symptoms for him.

March 24, 2015: parasite cleanse is making him moody and irritable. This passes in a day or so. He is back on flower essence because he’s more easy-going on them.

April 3, 2015: Round 172 at 30mg of ALA. Round went perfectly fine. Still no sensory tactile symptoms.

April 17, 2015: He’s been on a regular diet containing gluten for 2 weeks. No sensory problems.

April 18, 2015: He caught a nasty stomach virus and gave it to all of us. Joy. Subsequent to that he isn’t sleeping well for a few days. He has developed dark under eye circles like he head before he went off gluten too. He seems very moody. Might be the virus, yeast flair or the gluten. He is resistant to going off gluten. However, the tactile sensory is still gone.

May 1, 2015: still no sensory problems. Don’t like the pale look with the dark circles.

May 6, 2015: We opt to go back to gluten-free because he looked healthier on it. We want to see if the dark circles go away and if his mood and school work focus improves like it did when was off of it before. If that happens, I will know he has some problem with gluten, even if it’ snot sensory. It’s tricky because he has no obvious symptoms of problems eating it, aside from that.

Conclusion: He was strictly gluten-free for a month. Did continue the diet for another month but did have several infractions during that time. Resumed eating gluten April 3rd and continued until May 5 with no reappearance in sensory.

The only assumptions that seems plausible is chelation round 170 where he displayed improvements in his sensory symptoms with the dose increase.  What we do know is that gluten does not seem to be a sensory cause for my son. I know it is for many children and for others it causes different problems.

I’m just ecstatic that I have a child that is no longer extremely irritated by paper, wood, or other sensory triggers. I can’t relay how terrific this is. It was one of our only remaining symptoms in my son and now it’s gone.

 

 

Dividing chelators

I am often asked to describe how to divide up chelator capsules into smaller doses. Over the years I’ve gotten pretty good at doing this without any special equipment, although I would like a capsule machine to hold them. I’ve just never gotten around to buying one because it seems like there is always something else we need. Plus, juggling capsules keeps my fine motor on target…lol

Some people buy empty capsules for this, I have always saved the capsules from other supplements I opened and dumped the powder out to be given in food or drink. For example: I open the adrenal cortex extract capsules and empty the powder into food for my son to take. When I’m done I put the empty capsule into a zip lock bag I keep in the cabinet.

Before you know it you have plenty of capsules for compounding chelators.

This is how I manage dividing doses of chelators:

Hope this helps some of the parents out there just learning how to do this or looking for an easy way to divide chelator capsules into smaller doses.