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TeamTyrion

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Everything posted by TeamTyrion

  1. 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 :)
  2. 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.
  3. 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.
  4. 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.
  5. Just found this on a post by Mommypotamus: http://dairycarrie.com/2014/10/06/lifewaykefir/
  6. Undigested food in stool is a clear indication of leaky gut.
  7. 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?
  8. 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.
  9. 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
  10. 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.
  11. 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.
  12. 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
  13. 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.
  14. 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.
  15. 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
  16. 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.
  17. 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?
  18. 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.
  19. 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.
  20. Thanks for the input everyone....Maryaw, I checked out both links and found no practitioners listed in the first that are from Canada, and one in the second link. ONE listed for Canada. I know there has to be more because there is a doctor at Sick Kids in Toronto who has diagnosed and treated Pandas. I had inquired about treatment there but was told that we were out-of-bounds (that we need to be living in Toronto to get treatment). We live in Mississauga - only 30 minutes door-to-door!!! However, just found out that someone got a referral there even though they are out-of-bounds so I will definitely look into this further. Also, there is a Children's hospital at McMaster University in Hamilton so I will call them tomorrow. SSS - When you say antibiotic trial for Pans/Pandas, do you mean trying out abx for a few(?) weeks to see if my son's symptoms improve? I have never tried this. My son has been on abx three times in his life - each for 10 days long. I will approach his doctor (who is so against abx) and suggest this to him. Is a 3 week trial long enough to actually notice an improvement? Should I ask for something longer?
  21. I've been on this board for a while now, about 8 months, starting off in the TS forum and now spending most of my time here in the PANDAS/PANS board. I feel like, unlike so many of you, I have had a really hard time just DOING the tests to find out what my son has. I feel so overwhelmed by everything that I have become almost paralyzed. The only thing I have covered, quite thoroughly, is the methylation stuff. But, I have yet to do any bloodwork, including ASO titres, or Igenex testing to see if he is either Pandas and/or Pans. It's definitely time and I feel terrible it's taken me so long. I read about you all giving your children abx during flares and how the behaviours subside and then come back again when the autoimmune response has been triggered. My son lives in what seems like a constant flare, probably because I'm not giving him any abx? His OCD and rage are either a. moderate or b. severe. There is no mild and there has never, in over a year, been a complete absence of his OCD. He does not wet his bed, has never suffered from joint pain, and only experienced tics (in the form of throat-clearing) for about 4 months (between Sept. and January). He has sensory issues definitely - needs long socks and pulls them up all the time. He is a good eater. His OCD is in the form of touching things, and sometimes licking things. We found out through a child psychologist (who worked with him for over a month before he told her) that he does this because he doesn't want to bleed. So, it's a classic fear-of-consequence OCD behaviour. He also responds strongly to the use of words that somehow remind him of blood. If we mention something that makes him think of blood (like "bladder" or "pressure") he feels that we have outright attacked him and he responds with rage that we did that to him. He draws battleships all the time (as well as other things, but mostly battleships), and can memorize the dialogue (word-for-word) of entire movies. His Father has a minor movement disorder (with his feet) and doesn't like to be touched on the chest. He (Father) also has restless leg syndrome during the night. When I asked him to recall how long it's been that he's had the issue with being touched on his chest he couldn't remember. I cannot recall my son ever being bitten by a tick, and his throat swabs are always negative for strep. But, he complains of a sore throat quite often, and the one time his OCD hit a severe level (literally screaming at us to touch things 3 times and rage every 2 minutes) was when we had been exposed to someone who was quite sick at the time. We didn't check for strep because we were on vacation and I didn't think to check in with a local doctor. He has always had HUGE tonsils and we are finally getting them (and the adenoids) out at the end of August. His tonsils would always get so enlarged from December-May that he would struggle to sleep at night. This first happened when he was 3, and now he is 7. I was so opposed to surgery when it was first suggested 4 years ago, but now I am hoping and praying it will bring some relief with the OCD. We have had 2 cats ever since he was born. He and I love to kiss them...a lot. They are indoor cats but once we did find a flea on one of them. Sometimes I wonder if he has bartonella, since I often read here that OCD and rage are symptoms of it, and those are the two symptoms that are front and centre with my son. I have worked with a DAN doctor, who for some reason never recommended much in the form of testing, and now a Naturopath, who also seems to eschew testing. So, in a way I felt justified(?) for lack of a better word about not going ahead and doing any testing. But, this is ridiculous. It's time. I'm curious...when I read about your children regressing/being symptom-free, is that after you administer the abx? If you did not administer the abx would your children's symptoms go down over time or would they remain in flare-mode? And, are any of you using something other than abx to get the flare's down? I see a lot of NSAIDS (ibuprofen, advil) mentioned but my son doesn't tolerate those well, and the results of his methylation support that. Not to mention, those NSAIDS are not meant to be taken long-term are they. Any help would be appreciated. First things first though - ASO and Igenex right?
  22. Here is an excerpt from this article as it relates to the streptococcus bacteria in probiotics: "Children with PANDAS have an abnormal immune response, and clinical judgment should determine whether probiotics with strains of streptococcus bacteria should be avoided, although this is not published in the literature. Chronic exposure to oral streptococcus-containing probiotics may be one of multiple reexposure sources." Source: http://ndnr.com/autoimmuneallergy-medicine/pandas-an-immune-mediated-mental-illness/ powpow - I know what you mean about devoting (or losing) so much time and energy to all the research. My ds is not hooked on this yogurt so I have no problem changing it up. Actually, for those who live in Canada, I just found a fermented yogurt, offering your choice of milk, soy, or rice, that has 50 billion L.acidophilus and L.casei in each small serving - the brand is called Bio-K Plus Probiotic. I wonder if it is at all similar to the fermented yogurt BRAVO. It certainly is expensive! $22 for 6 small bottles (98g each), perhaps putting it on the same level as BRAVO price-wise. Although, the children's dosage is 1/4 to 1/2 bottle per day.
  23. So angry at myself that I never checked the exact strains of bacteria in this yogurt and just found out today that it contains Streptococcus Thermophilus!!! I've been giving this to my ds for a while now...urgh. Just googled this brand (which I buy at Whole Foods) and most people are upset that it contains pectin as an ingredient (to make it have that thick consistency I guess). Anyway, just wanted to send this out in case others are using it too.
  24. Hi cara - sorry, I don't have answers for you as I'm still in the early learning stages of a lot of this, but can I ask you about the tests you did? I am just starting to consider tests (apart from methylation which I focussed on initially but now I need to focus on other stuff) and am wondering which OAT and metals test is it? Great plains? Also, do you meet face-to-face with Bradstreet or do phone consults? I live in southern Ontario and would need to do phone consults. I have been following your journey with Bravo and am really interested in it. We have a Naturopath but honestly, I feel like he's really not into tests - I'm the one pushing for them and when I read posts like yours I see how much they can help with figuring things out, and knowing where to possibly go next.
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