lovemylittleguy

Hi James, Dr. Wilson is my son's doctor. (and many others in Canada) I can recommend her. While we have not tested through Igenex I believe she can set this up for you.

I sent you a PM Canadianmom, from a post I saw earlier from you. Also sent you name of Dr. in Ontario. Janice

We also did not have good response to turmeric. But we have found great relief with boswellia as an anti-inflammatory.

At six my son was put on Zyloft 12.5 mg, at first things did seem to get better, he was able to go to school without crying, seemed happier and his complete control of laundry went away. At exactly 30 days he was a mess. Manic, out of control, spinning objects for 8 hrs a day, and crying jags. Psychiatrist told me to take him off which we did, within a week he was back to where he was before Zyloft. We tried again, same thing happened but quicker this time, Psychiatrist said to increase to 25mg, that lasted maybe 1 week, it was unbelievable every (pans) symptom went through the roof and he had a lot of symptoms. This was long before I had ever heard of pandas/pans. We moved on to Luvox, really bad, then prozac all at low starting dose, ALL created huge problems. Prozac start with 5 mg, when I reduced it to 2mg behaviours leveled off. That is what got me down the road of pans/ pandas (the atypical reaction to SSRIs). Swedo says 1/4 or 1/10 of regular starting dose for pandas kids is a good place to start. I agree. Some can do more but my son (who is not on SSRIs anymore) is not one of them.

Chubbermommy Very interesting about Arabinex, never heard of that. Will be asking Dr. W about this. Was your ND putting OLE in the category of immune modulation? We have used OLE with great success here. We use Barleans olive leaf complex (liquid) which they have stopped selling in Canada but you still may be able to find it. I eventually did. Because I could not find it I tried Natures way in Vcap form and OLE by botanica, neither provided same type of improvement that Barleans did. (for my son) I use it when in flare and seems to bring him out quicker. We did see some significant herxing from it as well. When I gave him a bigger dose (ticking went on for 45 mins) followed immediately by the biggest sustained cognitive leap I had ever seen.

Spring is this Dr. Evelyn Stewart, Psychairst?

It is beyond ridiculous and the Western Moms, and East too, are working on trying to change this.

Have you joined PANDAS Canada or PANDAS/PANS Ontario on facebook? That would be a good start. I am in Alberta. We are using Dr. Wilson in B.C. (Naturopathic) by phone. Medical Dr. still looking, Integrative Dr. none here that I am aware of. Dr. Arnold out of sick kids in Toronto but my understanding is unless it is Pandas and very straightforward (ie following Swedo's research criteria) he is not much help. Lots of well informed eastern Canadian moms on both sites who will be able to hopefully point you in the correct direction. Janice

Hi Kara, So happy for you and yours. I believe it was you who first helped me over a year ago. We first met online at the OCD parenting forum. It is Janice from Alberta. My son recently got to baseline...6 years after onset and YOU are a huge part of that. THANK YOU. That is so inadequate... When I get some time I will sent you an email.

Thank you rowingmom, Yes it was you and I eventually did find the original post. Thanks for the links as I have more to learn. I believe it was herxing for 2 reasons. First they were intense, and isolated the psychiatric symptom (normally I have everything going at once manic, OCD, anxiety, sadness) and seen 30 min after giving abx (in most cases). More importantly detox of epson salt and lemon juice had almost no effect, then I was told to give magnesium and within 20 min the herx symptoms were gone or hugely reduced (every time). I was told the mag was for detox but have since learned possible anti-inflammatory properties as well. And if herxing causes inflammation that may explain something which I saw that I did not understand. When my son does not have abx for a few weeks symptoms continue to improve and some of best improvements are seen here (ie 3 symptom free days) Then by week 3 or 4 psychiatric symptoms come back.

Cant seem to find the post I am looking for. If the trigger is strep only my understanding was that you would be unlikely to see herxing on antibiotics? Something about gram negative, positive? Trying to present argument for testing beyond strep as my son herxed for 3 months straight on abx. Thanks

Chubbermommy, Just wanted to let you know there is a PANDAS Canada page on Facebook. It is small, but there are some Ontario moms here that may be able to offer you some leads to some help. I also have been an avid reader of rowingmom's posts for a long time and would encourage you to make use of her experience. Janice

Hi Also from Canada. Alberta. I have not been able, yet, to secure a doctor here. Took my son to nathropathic to get diagnosis and 3 month prescription for Amox. Have not been able to get any testing done. There is a Dr. here in Edmonton. I tried to get in the back door. ie wrote him a letter Apparently he spent 2 days "thinking" about it then said he did not feel he would be able to help my son. I have since learned he is not accepting new patients but his assistant is. That is where I am now trying to get in. I mention this because I know of 2 children who have been approved for IVIG by this Dr. Each received 2 rounds of 1gm / kg (low dose). Met recently with both of these moms' in an effort to advocate and brainstorm to get help. One of the moms was featured in the Walrus article "a feverish debate". My experience probably very similar to others in the astounding lack of help and ignorance. Janice

Facebook pages are Pandas network and pandas resource network and pandas canada and pepsi refresh project pandas. typing any of these in search should call these up. Momcap I was thinking of you the other day when I joined all of these and saw a person on pandas network from ontario (Rebecca)