TeamTyrion

Support is crucial I believe. For years I only went on FB for the Pandas support group. And you can even use an alias or just part of your name if you prefer to be anonymous. That way you can get the support you need without the hassle of being “found” by old friends etc.

I’m so sorry. I know exactly how you feel. Where are you in Canada? There are a couple of great FB groups with a lot of support and discussion. Pandas/Pans Ontario (Canada) Caregiver Support Group is excellent. It covers both tics and other symptoms such as Ocd and anxiety. It’s just a great group to relate to other parents in general. The daily support is necessary especially at the start. We’ve been on our journey for 7 years now and things have improved. I used to wonder how to get through the day too but not anymore. Hang in there. In so many cases things get better. Xx

Just to add - I would definitely recommend the T & A removal. I believe it made a big difference both in ridding him of an embedded infection and preventing further ones.

I completely understand with needing to hear from others. We tried so many supplements over the years. We also did neurofeedback (muscle testing) and cognitive behaviour therapy with a child psychologist. Looking back the most important things that helped were - clean diet (real food not processed) with low oxalate foods, tonsil and adenoid removal, and learning how to "fight" his ocd and "worry brain" with common sense techniques that were given to us by the psychologist. Those techniques continue to be useful to this day, but only when he's not in a flare. When in flare it's too hard - his brain is inflammed and only abx will work. Tamar Chansky's books are helpful in understanding the talk-back techniques. I would also say that learning to re-wire his brain with music lessons also helped. People seem to look at me sideways when I say that but I truly believe it made and continues to make a difference. Another book I recommend is: The Brain's Way of Changing by Norman Doidge. It's been a long journey for us and we understand that our son will always have tics and worry brain issues to some degree, but they can be managed and he is living a great life. He excels at school, has many friends, participates in sports, camps, etc and is very happy about his life.

Yup, so much of this is familiar. our son also very sick from an early age to about 3 years. He also enjoyed being around kids at a young age but struggled to actually interact with them. He did insane amounts of imaginary play. Really, so many similarities. My son's onset was at age 5.5 but it had been building it seems. Things were terrible for about 1.5 years, then he got better but still had issues. He is now 13 and is doing great. There are still tics and the occasional ocd but nothing as horrible as onset. We have a Pandas specialist who treats him with abx when needed. If it's any consolation he has many friends now and is able to interact with them very well. Playing hockey gave him a lot of confidence. He misses face-to-face contact with all his friends right now.

Hi there! I haven't commented in this forum in years? But I read your post and wanted to comment. I'm so glad you have found a supportive GP - that is quite rare as you probably already know. As far as your explanation for the inflammatory procress, I *think* it's correct. It's been a while since I read the science behind the inflammation but what you wrote rings all the bells. A couple of things I wanted to recommend. I feel strongly about the use of some sort of nasal spray to combat the infections that trigger the TH-17 responses in the nasal passages (and ultimately lead to inflammation via BBB). The product we have used, with great results, is XLEAR. I pick it up at the local health store. It acts as a "natural antibiotic" for the nasal passages. It contains, Xylitol, saline and Grapefruit Seed Extract. We have found it invaluable in our home for both preventative measures and treatment. Also, have you considered getting your tonsils and adenoids removed? Good luck! And hope you continue to find answers :)

Hi Bigal, Thank you for the post. How are things going if you don't mind me asking? My son has been wearing a mouthpiece for 1.5 years now. Can you tell me how long your son wore his mouthpiece before he no longer needed to? Thanks.

Dairy Carrie's claim that they are in fact, a supplier to Lifeway is what makes the argument a compelling one. So, she says they supply to Lifeway. Lifeway says they do not. He said/she said? I just wonder why such a claim (on Dairy Carrie's) part would even exist? What benefit could she possibly have? The benefit to Lifeway denying it is certainly clear.

I was thinking about adding a soil-based probiotic to our probiotic rotation, however, not so sure now after reading this article. http://www.kitchenstewardship.com/2012/06/21/are-your-supplements-turning-into-deadly-pathogens-in-the-gut/ It seems that it is great if you generally have a good gut environment; but potentially dangerous if you have gut dysbiosis. And, my Son definitely has that! Does anyone else have this concern, or testimonials to its effectiveness/non-effectiveness? I think many of us, or our children, may have some form of gut dysbiosis on this board so just wondering.

Just found this on a post by Mommypotamus: http://dairycarrie.com/2014/10/06/lifewaykefir/

Undigested food in stool is a clear indication of leaky gut.

Wonderful update! I always learn something from your posts rowingmom.

I've heard that Olive Leaf Extract is good for the immune system and can help with viruses (not sure how though). I had to read up on the benefits of Oil of Oregano and so far I see that it is good for parasites and bacteria - can be a replacement for antibiotics. Hmmm, does this mean that I shouldn't take oil of oregano AND antibiotics?

Getting vaccinated is a personal choice and it needs to be based on what you think is best for your own child; obviously a parent is going to prioritize her/his own child above the potential future welfare of other people. I'm sure Thundersweet chose to include that information about vaccinations in order to get informed responses, not to be judged. Thundersweet, we use Ultimate Flora (50 billion) but a word of caution: start slowly! Sprinkle just a bit in his drink/smoothie and then add a bit more everyday. Look for rashes on the body, which may be a good thing (herxing from bad bacteria die-off). Try giving epsom salt baths to help with detox too. Another word of caution: start with small amount of epsom salt and work up. Some kids have a sulfur intolerance and epsom salt baths are really magnesium sulfate (hence contain sulfur). Consider also oral magnesium (citrate form is probably the best) - check chemar's signature for "treatments that have helped my son" and you will see all the recommendations.

I would try to avoid sedation as much as possible. A lot of people with methylation problems (many here suffer from) don't do well with the epinephrine that is often used with the gas. Also, there have been issues with nitrous oxide (laughing gas) too, although my understanding is that nitrous oxide isn't often used anymore. You may want to ask what specifically is used. Nitrous oxide and methylation: http://www.psychologytoday.com/blog/health-matters/201209/laughing-gas-nitrous-oxide-is-no-laughing-matter

Amazingly, our ENT surgeon here in Ontario has been receptive to our discussion of pandas with relation to our Son's upcoming tonsil and adenoid surgery. She is going to prescribe abx following the surgery and when I asked if she could culture the tonsils she said "Sure, but please provide me with a list of what to check." So, I need a list!! His surgery is this upcoming Tuesday and here's what I have so far: Streptococcus - Group A Beta-hemolytic Borrelia burgdorferi Bartonella henselae Bartonella quintana Babesia microti Babesia duncani Mycoplasma pneumonia Mycoplasma fermentans Ehrlichia chaffeensis Coxiella burnetii If viruses can be cultured: Coxsackie A HHV-6 Any other suggestions would be appreciated. Hopefully this will provide some relief to his OCD.

So, everything is fine. The pain eventually subsided and there was no sign of infection. The doctor said it was likely a lot of gas from the abx. Good to know about the lymph nodes though rowingmom, that may also be a possibility. missmom - he said he didn't feel any pain during or after urination. It was just a constant, intense pain that lasted for about 2 hours.

We started abx on Sat. and have been doing probiotics every night since and started Sacc. B last night. My Son is writhing in pain right now - can't even walk properly. Yelling with pain - says it is above penis area (in groin?). We are on way to hospital...does anyone know what this may be? thanks

I don't know. I guess the question is, once a gene starts expressing, can it ever stop expressing? Hmm, perhaps LLM can chime in on that one.

I have not had any luck with the probiotics either. Yesterday I got a new one: Ultimate Flora by Renew Life. I was told that the "key" was to go really slow - first just a sprinkle of the capsule for a couple of days, see how it goes, then add a bit more, check how it goes...if ok, then add more, etc. So, we'll see. I'll report back if a success or not.

Hi rachel, My ds is also CYP2D6 positive (++ on both the S486T and T100C). I checked out your link - thanks for the reference. "Could this mean that my son might have a problem with metabolizing certain medications?" - To answer, YES! Definitely. Here is another link that I printed out, just in case someday I should need a full list of drugs that may be implicated: http://en.wikipedia.org/wiki/CYP2D6 Scroll to the bottom for the list. There are psychiatric drugs in there apparently. There's a lot of info out there on codeine and how it's definitely not advised for those with the CYP2D6 polymorphism: http://www.nps.org.au/health-professionals/health-news-evidence/2013/codeine-children-safety-warning

Hi t_Anna, There are definitely a lot of ingredients there, and I agree with rachel that it is usually best to avoid "multis" as it's hard to pinpoint the cause of adverse reactions. I notice that your DS is CBS+ and if this is expressing you need to avoid sulfur-based supplements. I see that glutathione is in there, which is a big sulfur donor. So, that's a possibility. Also, what is the status of the NAT2 G590A gene (rs1799930)? I spoke with Sterling Hill (creator of Sterling's app) and she told me that because my ds is (+/-) for that gene, if it's expressing, he will not be able to clear folate out well so I have to be very careful of that. In some cases, people do better on the 5-formyltetrahydrofolate (AKA folinic acid, AKA calcium folinate) than on the 5-mthf. If you stick with the 5-mthf, a good one is Amy Yasko's drops: http://www.holisticheal.com/methylmate-b-nutritional-supplement.html You have great control over how much you are giving, as each drop is only 67 mcg. Try a drop every second day and see how it goes. One other thing - the folate needs to be used with a b12 in order to work. According to heartfixer, if you are COMT+ and VDR+, you are going to need and tolerate methyl groups. However, Sterling does not necessarily agree with that, citing that some people who are COMT+ and VDR+ can still be sensitive to methyl groups. It basically comes down to the person, despite the genes, whether or not they feel they can tolerate something or not, so trial-and-error is key. I try to stick with hydroxy-b12 and adenosyl-b12 for my son, just to be on the safe side for now. However, one day I will try the methyl-b12 to see how he feels with it.

Hi spring - So, that is MD doctor #2 then (Dr. Stewart). For those in the US who are not aware, in the case of these MD doctors, our healthcare is covered here in Canada. All the other docs (mostly Naturopaths it seems), are out-of-pocket. So, it's kind of beneficial to locate the MDs. However, I wonder exactly how knowledgeable they are at this point, not to mention how restricted they may feel in their treatment (My understanding is that MDs here in Canada are fearful of losing their license if they prescribe abx for longer than a month). Spring - how have things been with Dr. Stewart? So far we have identified 2 in Canada - anyone know anyone else? Or anymore good Naturopaths?

Thank you Janice! Isn't it frightful that there are no MD's (save for the one at Sick Kids) who are dealing with this in the whole Country? Something seriously wrong about that.

I live in Mississauga and would like to hear from anyone who has found someone who treats Pans/Pandas here in Canada. Do we even have "Integrative doctors" here? Please PM me if you are more comfortable with that. Thanks.