Should I worry about Saliciates in Biocidin? And is this a flare or Biocidin withdrawal?

[MamaBeartoCharlie]

Thanks to all of you who share here and make me feel less alone! We're new to PANS/PANDAS, having just been diagnosed in October (although think my son's been suffering since toddlerhood).

 

Little backstory at 15 months DS 6 had a viral rash with fever that was not identifiable as any particular virus. It was insignificant at the time and cleared up quickly. A few weeks later he received his varicella vaccine and changed overnight. Stopped talking, began throwing wild tantrums, and had major separation anxiety from me. He also developed a shoulder shrug that I believe now was his first tic. The loss of language of course had me worried about ASD but he continued to point and maintained eye contact. I knew in my heart something had changed with the vaccine.

 

At age two he began cyclical vomitting for no identifiable reason. The pediatrician dismissed it because he was still growing very well. We saw an ND who recommended we remove cow milk and gluten. We did and he improved. He continued to go through phases where we worried about ASD because he had rituals and didn't interact with his peers, but he still maintained good interaction with us throughout.

 

At around 3.5 years he suddenly had an overnight change in behaviour again. Developed rituals around saying goodbye. Horrible night wakings. Was always seeking to do things over if they weren't done right etc. Looking back it was clearly OCD but it's hard to identify OCD from ASD in a toddler! He also had overnight separation anxiety again as well as increased general anxiety. The sudden change was dramatic. Our ped who was always dismissive referred him for an ASD assessment on the spot during a visit for an infected cut. I'd have to get his records but I think before this the kids had both had ear infections. We had also reintroduced gluten and dairy into his diet. I had an "aha!" moment realizing the diet could be causing not just the vomitting from before but his behaviour. We removed the gluten and dairy and he improved dramatically. We did food sensitivity testing and both were high. We thought we had solved the mystery and he did well on a stricter diet.

 

A few months later he got HFM/coxsakie. Looking back it was that very same week he started his first obvious vocal tic (saying excuse me repeatedly). We never made a connection to the illness and chalked the behaviour up to anxiety over starting kindergarten. The tic resolved after 4-5 months. He went on to have overall gains with some bumps along the way.

 

He had three episodes of urinary frequency following colds which lasted only a few days but were dramatic and his urine screens were always clear.

 

He completed his ASD assessment after much revovery. We weren't so worried about him by that time and the school had no concerns either. His history raised some red flags so the assessment report was "inconclusive for ASD" and he was scheduled for a follow up assessment this year. The doctor said she felt he had social anxiety not ASD (she of course totally missed PANDAS!). His anxiety improved dramatically in senior kindergarten and we really ruled out ASD completely as he was doing great in all areas, other then some normal defiance and a few fleeting tics and some very mild obsessive behaviour.

 

Flash forward to last August at 5 almost 6 years old, he lost his first tooth. Around the same time he developed strange rashes the doctor thought were from bed bugs (which have been ruled out). He started some mild throat clearing tics we didn't think of as tics at the time or pay much attention to. In September he received his MMR-V (varicella again!). He left the appt for the needle ticcing wildly. A week later he was still ticcing like crazy and totally different - hyper, defiant, had dark circles with puffy patches under his eyes, increased anxiety, back to having good bye rituals and separation leaving me. This also coincided with the start of grade 1 and an new teacher but I knew much more was going wrong than just some general anxiety. I googled, discovered PANS/PANDAS and had another aha!

 

He was tested for strep but his titres are normal. However the only MD in the province treating these conditions, diagnosed him based on his history with PANS. No other tests have been ordered to know what his underlying infections may be, but it seems the varicella vaccine has played a role.

 

He was prescribed Zithromax. We tried it. His OCD and anxiety seemed to improve somewhat but he continued to have tics. He was also quite emotional and had frequent rages while on the Zithro. Overall it wasn't nearly as effective as we hoped. He was on it for about 10 weeks.

 

We consulted an ND experienced in PANDAS at the same time he received his diagnosis and started Zithro. On her advice we took all grains out of his diet, had him on Mag/B6, vitamin A and D, and changed probiotics. She later prescribed NAC (disaster for us with immediate rage) and Biocidin.

 

The MD wanted to keep him on the Zithro and prescribe Valtrex on top. My gut instincts said no to that plan, as I felt the benefits from the Zithro weren't significant enough to warrant staying on while also layering on top the Valtrex with its scary list of possible side effects - like C Diff! The Zithro was also bothering his stomach and he had constant very loose stools.

 

So we decided to try a more natural approach over the holidays. He did well initially coming off the abx. We increased his Biocidin to 5 drops (he weighs about 56lbs) but I was giving him all 5 drops in one dose misunderstanding I should have likely spread out the dosage. He sort of held at baseline off the abx in terms of his tics and anxiety and OVD but his mood seemed improved and his rages were less frequent.

 

Near the end of the holidays he became a bit more difficult and defiant, and had some major melt downs. Then we started seeing a connection to epsiodes of rage with dosing of his Biocidin (which we were giving with his high dose Vit A and D). We had missed a few days of probiotics as well when he has a stomach ache and was resisting food. The ND thought the rage was likely a herx and as Lyme has always been something we've questioned (he's had chest and leg pains and weird tingling as well), she referred us to a Lyme literate colleague (who we are still waiting to speak to). She gave us activated charcoal to help with the die off. She also prescribed BiO 87 and BIO 88 nosodes (for many viruses and many bacterial infections). She changed his probiotic again, and introduced a multivitamin powder with mag and b6, A and D as well as manganese and a bunch of other stuff - he takes this in place of the other single supplements now. We introduced eveything new one at a time and separated his Biocidin from his vitamins to see if it was for sure the trigger for rage. We gave him the nosodes once but then didn't give them again as we tried to chart his reactions to the Biocidin. It for sure is the rage trigger now and activated charcoal brings him back down.

 

It was just this week that I realized 5 drops is probably too much Biocidn. So Wed to avoid his rage epsiode I reduced his Biocidin to 2 drops. Like a switch he still had rage almost immediately after taking it. I wanted to take the Biocidin out at least temporarily as the rage is difficult to manage and I thought he could use some more detox before more killing. We noticed Thursday he had increased tics and was licking his fingers and I worried that skipping the Biocidin caused this, so as he was in bed I gave him 3 drops of Biocidin last night. When I picked him up from school this evening his tics were way worse and he's told me the finger licking he has to do when he touches something (so it's OCD). He was crying and emotional after school but calmed down with some dinner. He had a play date and was hyper.

 

I began looking online last night trying to understand whether reducing his Biocidin dosage could cause the flare up in tics. The white willow bark in the formula contains anti inflammatory salicates - very similar to aspirin. So in theory it could increase the risk of Reye Syndrom. This freaked me right out!!

 

I was up all night worrying about it and couldn't reach the ND, so I skipped Biocidin tonight. Last night all I could think was what if he's flaring up from a virus and I keep giving Biocidin and it's like giving aspirin and he gets Reye's Syndrome! But after tonight's bedtime watching him tic and lick his fingers I'm worried he needs the full 5 drops of Biocidin he was getting to keep his tics and OCD under control? Im worried his symptoms may be from reducing the Biocidin. I gave Advil tonight but it did nothing.

 

Is it coincidence that the tics and OCD have flared up now as I tried reducing the Biocidin? I feel like the only one way to know is to give him 5 drops again and see if he improves. But now that I know about the salicates and risks, what if this is a virus he's responding to and I give it? It worries me to keep giving so much!

 

I have several weeks of Zithro in the cupboard still. I'm tempted to give it tomorrow to see if it helps him, but it too has risks and I feel like I should yo yo him like this.

 

Am I being paranoid about the Biocidin? Should I try 5 drops (in 2 doses now) tomorrow and see? Watching him like this is so difficult! Charting a course for him and trusting my instincts isn't easy either (my first child was stillborn. My mommy instincts knew something was wrong the day before she died but I felt I couldn't go to emerg saying I just had a "sense" something was wrong. The next day she stopped moving so I went in and that evening we watched her die on an ultrasound. The experience has left me afraid to ignore my own instincts, but then also sometimes with irrational anxiety that he may die so that I can't trust those instincts! He's admittedly had a few unnecessary trips to emergency in his life!) I know the risk of Reye's is likely super low, but with that history once a worry is in my mind I fixate on it.

 

I don't know what to do?!

 

Some sage, more rational thoughts from the rest of you are much appreciated!!

[bws1565]

My daughter is doing very well on a product called "Restore" by Restore 4 Life available on Amazon. It is supposed to heal leaky gut syndrome. If I am reading your post correctly, it seems to me that your son has a gut issue. Biocidin is a probiotic and should not be causing what you explain....unless he is not handling well. Whether it was caused by vaccines (which I think highly probable) does not matter.

[Gpookie]

It's my understanding that Biocidin is an antimicrobial, not a probiotic...

[MamaBeartoCharlie]

Yes its an antimicrobial. It's replacing the Zithromax and seems to overall actually be more effective.

 

I decided to challenge my Reye Syndrome fears and I put the Biocidin back in on Sunday and he had three amazing days! He was at 80-90% recovery! It was joyous. We spread the Biocidin dosage out, but my DH didn't understand my morning dosing instructions and gave it with his probiotic on Wed and Thurs (I think the two were cancelling each other out). Flash forward to today, and my son's tics are back at a level 10! OCD is also reappearing (albeit mildly) and he's back to being emotional.

 

Now its a mystery to figure out does he just need a higher dose of Biocidin or probiotic because of the dosing error? Or is it something else. He's reporting wiggly teeth, but I'm not sure when they came loose. And complicating things my mother fed him jam for three days (Tues, Wed and Thurs) that contained glucose-fructose (corn and wheat that we know he can't tolerate.

 

I feel like I'm chasing unicorns! We had a short glimpse of our sweet, sweet boy, and then poof, the tic monster is back.

 

[MamaV]

What a roller coaster. I just want to commiserate on the finger licking - has been one of my son's main symptoms too, and just the same whereby he touches something and thinks he has to lick his fingers. He explains this is to check and see if what he touched is poison. Ugh. We are just about to start with Biocidin, though because my son tested positive for clostridia he is supposed to take 8 drops 3x/day, and he is about the same weight as your son. Hmmm... My son's symptoms seem pretty well controlled by antibiotics (currently Azithromycin) and we will try weaning off either during or after biocidin protocol. All of these decisions are so hard, and it sometimes seems impossible to tell what is causing or helping what! Good luck to both of us! Sounds like we're both in Canada - great you have found a doctor who will diagnose and treat PANS

[MamaBeartoCharlie]

The finger licking makes me batty. Like could these kids possibly pick a worse OCD behaviour when we need them to stay germ free! I've talked about clean hands and keeping healthy, so he gets it. Today he decided not to touch a nasty handrail in a bowling alley, saying "I better not touch it in case I lick my fingers". I feel have to balance keeping those dirty fingers out of his mouth and creating too much fear of germs so that he doesn't develop OCD around hand washing, or some other germaphobe manifestation!

 

Where in Canada do you live MamaV? Who is your sons doctor?