chubbermommy

So non PANS psychiatrist recommended 25mg Zoloft for ds' OCD. Currently treating (or trying to treat) Lyme with abx and supps but would be nice to take the edge off the OCD if possible. I realize it may muddy the waters as to what is working but I owe it to ds to let him try. Hopefully won't regret it. So I believe Dr Swedo or Murphy said 1/10th or 1/4 of a regular dose is a good starting point for pandas/pans kids? Can someone verify?

Does anyone know what dosing of minocycline was used in this study? I can't seem to find?

There is a PANDAS/PANS Ontario Support group on Facebook. We're quite active so please join.

I've communicated with another parent who spoke with Dr. Brill (a psychiatrist) who told her she was no longer interested in PANDAS. The only MD I know of in Ontario treating PANDAS/PANS is Dr. E in Chatham.

Hi there. We are also in Canada! And trying LDI with our ND. I wonder if I know you from Facebook (are you on the PANDAS Ontario group by any chance)? Please PM me to let me know. So far we haven't had much success yet, but I am committed to trying it for 6 months.

rowingmom, the knotweed is also an anti-microbial, so would it not also produce a herx reaction? I've been tempted to try it for inflammation based on your (and others) good experiences with it, but my son is so sensitive, he'd probably herx on it.

cara615, are you still doing the CBD oil? Am I glad I found this thread. I was also told it would take 4-5 days to see an effect and after I gave my son a drop this morning (bigger than I had intended but it's hard to squeeze out), I was pretty sure his tics increased this afternoon. Glad to know I'm not going crazy. I'll need to figure out a way to get a smaller portion out.

How does it taste? Bitter? Grassy? Weedy ?

It's been a few months since this thread was last posted to. I was wondering if those of you using CBD oil are still using it? And how's it going? Doing my research. It seems CBD is like a magic oil, it helps Lyme, PANDAS/PANS, other autoimmune, anti-inflammatory, etc etc etc....

mayzoo, you are still using it and finding it helpful? Have you had to increase dose? Thank you!

Instead of starting a new thread, I found this older one. Just wanted to ask, how do you know how much CBD is in whatever you are giving? The RSHO says a % of CBD on the syringe but I can't find the amount of CBD in the other ones, like Bluebird, Cibdex, etc.

rowingmom, when your weaned your daughter to herbals, did you decrease abx one by one, or decrease dosages of each one? And from your signature, I gather that she is still on some of the babesia herbals for maintenance? Thanks!

Those who are using LDI for infections, are you seeing any flare up of symptoms? My ND and I just recently discussed this and she will be offering it to her Lyme patients. I'm still doing a lot of reading about it before I decide whether DS should have this treatment.

I'm glad to hear it's working so well for your daughter. I have 500mg capsules which I'll have to break open anyway. My son tends to be very sensitive so I will start at a low dose and make sure he doesn't have any adverse effects. I have read some of Dr. Hoffer's writings online, and it seems niacin/niacinamide is good for many of my son's symptoms - slight anxiety, a bit of OCD, hypersensitivity, and of course, really bad tics. So I'm going to try it tomorrow and fingers crossed something good happens.

Thanks for posting about this. I have been thinking about trying it, as DS' tics are not getting any better. How are things going now?

I just want to know if anyone else's child has these weird triggers. Please note my son has Lyme and PANS, and pretty much his only symptoms are severe motor/vocal tics. My son's tics are triggered sometimes by certain words/ideas (feet related, insect related, bodily functions, 'gross' things), the sounds of people coughing/sneezing/blowing nose, the sight of the above mentioned things (can't look at feet, bugs, etc). They *might* make him feel anxious, but what happens is that he has a big tic or a series of tics. For example, yesterday I asked him not to "get underfoot" when he was in the kitchen. B/c of the word 'foot', he had of series of tics - a couple of kicks, swearing, yelping. This happens EVERY time he sees something he "doesn't like". Driving by a billboard advertising a pedicure - tics. Blowing my nose - tics. Joking around and he drools while laughing - tics. A fly on the porch - tics. Learning the digestive system at school - lots of tics. The neuro that we see says it's like a psychological thing. The psychiatrist who assessed him couldn't categorize it into anything; she said 'unspecified anxiety disorder'. Almost a phobia, but not really a full on phobia b/c he can control the tics better when he's at school. Is there something he is lacking? a supplement he should be taking? He's on abx (azith and herbal) and he takes magnesium. I was thinking about trying niacinamide as I've been reading about how it's calming and can also help tics. Any suggestions? Thanks for reading.

Yes, I understand. Initially I didn't want to use any supplements for reducing the tics because I thought they wouldn't work. But from what I have read of other parents' experiences, sometimes the supps do work, whether they have PANDAS or not. It is still very individual, I get that. Well, we will see what happens! Fingers crossed!

I hope this works. I'm really getting tired of the swearing. If it were quiet it wouldn't be so bad, but swearing at the top of his lungs is kind of grating on me. Would two weeks be enough time to see if it has an effect or not?

Thanks chemar. We are going to try the carnitine. Is it necessary to take vitamin c with it? Many posts I've come across people give them together?

hi there. I'm usually over on the PANDAS board but I've been reading with great interest and hope about the supplements used for tic relief. My DS10 is in treatment for lyme but it is slow going (one abx plus herbals). He could really use some relief from his severe tics especially his shrieking swearing vocal tics. He also has some sensory issues. I have read about using l carnitine and taurine and how excess glutamate in the brain can cause tics. L carnitine helps with that, maybe taurine too? Is there a chance that my sons tics can be alleviated even slightly? Has anyone's Pandas child been helped with these supplements?

Hello all! This particular topic is worrying me and I would welcome any thoughts, ideas, experiences you may have. My ND feels strongly that DS10 should have his tonsils out (although that is probably a very slim possibility as we do not have an MD or an ENT on board). She believes his tonsils are harboring a lot of infection and this is preventing him from progressing in treatment. DS is positive for lyme, tested negative for co-infections, exhibits severe motor and vocal tics, slight OCD, no "typical" lyme symptoms like joint pain, brain fog, etc. A quick background - DS has never had strep throat. After tic onset in September 2013, he was positive on a throat swab for strep in October 2013, but no other symptoms. He was put on amoxicillin for 6 months. He had flares of symptoms over the winter, subsequent throat swabs were always negative. He did have the ASO and antiDNAse tested but I don't know the numbers. Because he didn't test positive for strep again, PANDAS was ruled out by the neurologist. Instead, he was diagnosed with a 'movement disorder' - i.e. tourettes or something. In May 2013 he tested positive for Lyme. Put on Augmentin for 6 weeks, no real changes in symptoms. Then clarithromycin was added, great improvement for a week, then back to previous levels. Did that combo for Sept/Oct/Nov 2014 (+ nystatin in Nov). Dec 2014 started azithromycin (in place of the clarithromycin), very slow improvement over 3 weeks. Tried tiny dose of grapefruit seed extract for yeast over the holidays - immense exacerbation and we stopped everything. He developed a horrendous screaming/swearing vocal tic and became hypersensitive to everything, panic attacks, aversions/phobias. He's better now, still some sensitivities (tics triggered by his sister's noises) and motor/vocal tics (screaming, a little bit of swearing) still there. Have been treating for yeast with nystatin and we are on a half dose of azith while we start the Cowden protocol for Lyme. Now if you've read this far, does it sound like we should consider tonsillectomy? His tonsils appear fine, but I know they can look okay but still not be. What could explain his lack of progress? Yeast? wrong abx? maybe abx don't work for him? (Don't get me wrong, I really like our ND, she's very experienced in treating Lyme and has studied with Dr. J. She's basing some of her recommendation on Dr Klinghardt's treatment of PANDAS. I'm just worried things may not go well with it for DS, but also worried that we're missing something by not doing it....) Thanks for reading

Zith makes my DS' tummy hurt. He always has to have food with it, never on an empty stomach. Did you try with a bit of food?

We took DS to the ER last night. They gave us an rx for risperidone and we still have clonidine from before. We just really need to reduce these tics somehow. They are not lessening at all with all these detox methods. I'm at a loss

Thank you rowingmom. I had found your previous post about this after I went searching through the forums. I have Longvida curcumin, which is not liposomal, and I'm going out to get charcoal and Meriva. How much did you give per day?

Hi. I know many of you are on the facebook group where I've been posting. I need help. Sunday morning I tried a tiny bit of Grapefruit seed extract (about 1/5th of a capsule or 25mg) on my DS and since then his motor tics have gone up and his vocal tics have exploded. I'm detoxing like crazy with lemon water, burbur pinella, Curcumin, Epsom salt baths, Byron white detox 2 (clay). I gave him an advil this morning. I'm going out to get him charcoal but the only kind I could find yesterday was activated charcoal with licorice. What else can I do? I'm desperate and losing my mind. His vocals are screeching and screaming and yelling. :(