So when will the flare end?

[cara615]

Honestly - we have been flaring since November when he tested positive for strep. We started abx and he got the flu over Christmas. The abx were working and reducing the tics and when he got the flu all tics were gone. However a week later the flare started. This was in January and then his brother brought home strep. We dealt with that and things started getting a little better but not back to baseline.

 

Then I upped the dose of the abx and things got better only to have his brother bring home strep again in the beginning of March. once we treated that things got a little better but seasonal allergies kicked in and the flare continued.

 

 

In april we switched abx from zithro to augmentin. Started homeopathy and allegra for allergies. Things got a little better but still not great.

 

i added Enhansa and for a week i really felt that we hit the jackpot but then I realized that Enhansa has malodextrin in it (CORN!!!). And within 2 weeks the effects of the Enhansa were being counteracted by the inflammation caused by the corn. At least this is what i think. So I stopped the Enhansa.

 

Right now we are on abx, probiotics, NAC, Vit D, allegra, essential oils (oregano and Thyme) and Sacc B.

 

We KNOW my son has gut dysbiosis and clostridia. I am sure this is contributing to his flare as well as the allergies because they are still high here in Atlanta.

 

I'm not starting the Bravo until school is out (10 days from now). What do you think the flare is from? Am I missing anything?

 

No one is sick in the house (I had a little virus recently so I was thinking maybe it was me. I was coughing and had some phlegm).

 

Ds has about 4-5 vocals and about 2 motors. Vocal are - "eh, eh, ah, ugh - short staccatto sounds", a shrill squeal that he tries to muffle by keeping his mouth closed, a WOOOOO!!!, and a puffing of air through his lips. His motors are opening his mouth wide and a head jerk.

 

the head jerk is only when he is outside for a long period of time (i.e. allergy induced). The vocals come and go throughout the day, some are spaced by 5 minutes some are spaced by 20 minutes. They are clustered.

 

I am totally frazzled by the tics. I am really not good at coping with them. In fact i am so messed in the head by them that i can't even be rational and realize that its not as bad as it was last year. i feel like any tics that he has are really bad at this point.

 

Ugh, i am just so tired.

[rowingmom]

Have you discontinued homeopathy?

 

DD tics with yeast, mold and die-off toxins. For that reason I have never considered using Sacc b.

 

I think LLM's son had problems with Sacc b. You might try and contact her.

Edited May 12, 2014 by rowingmom

[cara615]

We are still on homeopathy with a candida remedy as well as the Sacc B. DS does have yeast but its not as high as the clostridia and bad gut bacteria. I really feel its the clostridia that is causing this flare coupled with the allergies.

 

When I started the Sacc B, i did not notice an increase in tics. But really who the heck knows at this point what is causing what. Its so hard to tell.

[nicklemama]

Did Lee Silsby confirm maltodextrin in Enhansa? It is not listed on the ingredients.

[cara615]

Its listed in the ingredients for the tasteless powder that dissolves in water. Could it be that different forms have different ingredients? I will try to pull up a link or a picture of it for you.

[cara615]

Here - check out the ingredients by scrolling down.

 

http://leesilsby.com/enhansa-taste-free

[rowingmom]

It says "corn free", maltodextrin derived from tapioca.

[cara615]

Oh man. Duh. i feel stupid. My brain isn't working well these days.

 

Ok so hmmmm. Why did it work so well the first week but then just stop? maybe his inflammation has increased for some reason and its more than the ENHANSA can handle?

 

I am at a total loss. And I am sorry, for all my questions.

[smartyjones]

how much vit D is your son on and how did you arrive at it?

my ds also has a very sensitive system. vit D has always been a problem for him that I have not been able to figure out yet -- he is currently not on any.he does not have tics, but the vit D causes a ramp up in behaviors. I just got a new vitD with K by thorne that I am hoping to start in the summer.

could it be related to that?

[nicklemama]

The capsules DS takes does not have maltodextrin in it and rowingmom has solved the mystery of the tastefree. I'd start back up on the Enhansa. You need to start low, 150mg a day for a week and then go up to 150mg twice a day for a week and keep adding 150mg until you get to the dosage recommended.

[LNN]

• Sacc B makes my son rage and display "yeast-like" behaviors - tics, sillyness, impulsiveness, brain fog. It isn't a "good" yeast for everybody.
• NAC makes my daughter go nutso - rage, depression, mood swings. It makes me depressed and raised my ALT and AST liver enzymes - we both have CBS mutations and can't tolerate the sulfur level of NAC
• Antihistamines (specifically zrytec) gives my daughter anti-cholinergic symptoms like shaking, tremors, and tachycardia.

So I'd consider methodically removing one of these, or the Vit D as smarty suggests, and see what happens over 2 weeks. If nothing changes, you can probably add it back. Then remove something else.

 

As for a never-ending flare, I insisted my son only had strep issues and for 2 yrs, chased strep, blamed "exposure" to friends who had strep, etc. Strep was a big problem for us but so were lyme and mold - I just refused to look for it in those places. When I finally did, we made progress. So if it isn't the supplements, it's possible there's another root cause beyond strep that you haven't found yet.

 

I get how the tics are unsettling, They kill me too because they mean something's wrong. But...I'll take them any day over having my son confess that he's having intrusive thoughts about harming me or raging so badly that he loses friends. Those times were way worse.

[cara615]

thanks all for the insightful suggestions. Here are my thoughts.

 

NAC - he has been on it for over a year now 1200mgs. We had 3 great months where he was almost tic free while he was on the NAC and I do remember lowering for a period of time o see if it was hurting and I remember the tics increasing slightly so I don't think its the NAC.

 

Vit d - just added it 2 months ago - its 1,000IU's daily and i can't say that it has helped or hurt but I am open to eliminating this because his vit D levels were not deficient - but they were low at 32.1 (ref range 30-100).

 

Sacc B - another thing that I can't say if its hurt or helped. I have not seen a direct correlation of increase in tics to this supp but I am willing to eliminate it to see what happens.

 

Allegra - I know this helps him because I skip a day and all ###### breaks loose!!!

 

I will try the vit D first and if nothing changes then I will add it back in and eliminate the Sacc B...... etc.

 

As for Lyme - we have tested for it as our Doctor is very well versed in Lyme. There was not even one positive band that showed up. I feel pretty confident that DS does not have lyme. But we did not test for co-infections like bart or babesia so maybe that should come next.....

 

 

Thanks so much!

Edited May 12, 2014 by cara615

[rowingmom]

 

But we did not test for co-infections like bart or babesia so maybe that should come next.....

 

 

I won't say it .

[LNN]

Your reasoning makes sense, tho FWIW, 32 would still be a low D level for many of the intergrative docs. They generally shoot for above 50. But with warm weather months ahead, you can probably just try re-adding it in the fall. The only thing I'd keep in mind that it may not be lyme, or even co-infections. Mold, methylation, viruses, etc....can also be triggers. So if you strike out in one place, never fear. The peanut gallery will have lots of other trails to suggest!

[cara615]

You guys are seriously the best.