Fixit

i have to say ...i used to pride myself on my memory. now....what was i talking about.. oh..as i find my memory slipping, my pstd is getting better http://thechart.blogs.cnn.com/2012/05/14/memory-gene-may-fuel-ptsd/

http://www.ldn4cancer.com/techpapers/ldn_for_disease_prevention_quality_of_life.pdf this is our second attempt/round with ldn. we used it a year ago or so for 6 months or longer..dont remember and just restarted about a month ago. i would say the first time was like this one were his mood, though not something i was trying to manage, really gives him more of a cooperative and blue bird on my shoulder attitude....not every minute..ds is a tweener!!! i noticed a quicker response the first time..within days...this time it took a week or better. i dont understand the mechanic effects on the immune system.. maybe this one.. http://www.lowdosenaltrexone.org/ but i think naltrexone was origanally for heart disease??? Thanks. I'm just trying to see if others feel it really helped. yah..idk if it helped with any of pans stuff...i dont' think that ldn will help with symptoms..more of a slow anti inflamatory/modulating thing....i cant say i notice a differenct when we took him off. this is being used as an aid, in combo with other stuff per rowing , ithink i heard of the sleep thing...but that might not be do to the time of day given, but build up in system. you might have to pulse it.. similar to what and why i do with melitonin..when my kids start needing it...i only give during the week, maybe not on weekends..it looses it's effectivenss and might become a little dependent.(but not exactly the same as dependent but too much) i think originally the sleep is good, but it could change. i might recall taking ds off for awhile and then reintroducing a week or 2 later. also..i believe you start at your highest dose ie 4 mg and work down...you want the low dose.. but maybe the information has changed since we originally tried it a couple years ago.

ldn is given at bed time. memory shot..but the side effect of the good mood, was what ever the break down that happens during the night. not sure if is the number of hours, or if its in relation to the hormones, chemicals relesased during the sleep cycle. it was something that was noted by dr's as an unexpected bonus/side effect. ds is only on 2 mg

http://www.ldn4cancer.com/techpapers/ldn_for_disease_prevention_quality_of_life.pdf this is our second attempt/round with ldn. we used it a year ago or so for 6 months or longer..dont remember and just restarted about a month ago. i would say the first time was like this one were his mood, though not something i was trying to manage, really gives him more of a cooperative and blue bird on my shoulder attitude....not every minute..ds is a tweener!!! i noticed a quicker response the first time..within days...this time it took a week or better. i dont understand the mechanic effects on the immune system.. maybe this one.. http://www.lowdosenaltrexone.org/ but i think naltrexone was origanally for heart disease???

trying to find a couple articles i had on this related to infection... in the mean time i have these that mention these disorders and methylyazaiton(sp) so maybe get the 5mthfr gene checked. this part is methyl at the bottom is an index http://www.alternativementalhealth.com/articles/walshMP.htm this part is bipolar http://www.alternativementalhealth.com/articles/walsh.htm#Bi schizopharia http://www.alternativementalhealth.com/articles/walshQZ.htm#S http://www.ncbi.nlm.nih.gov/pmc/articles/PMC172852/ this isn't the article but...there was one about urinary track infections in the elderly and dimentia? check on herpes too. i find yeast makes my ds a bit angry. http://www.nutritional-healing.com.au/content/articles-content.php?heading=The%20Role%20of%20Infections%20in%20Mental%20Illness

have you had the amino acids checked? next blood draw, ask to test these. you need to fast, so no food after 8pmish..then try to get first appointment in the am i think if you just treat clos, and don't have aminos and proper probiotics..yeast fills in the gaps and allows c. diff again...it's all a balance. i also think if gut is full from yeast and c.diff you arent' hungry..so you can't get aminos from your food. So no matter how much you eat...and there aren't aminos to break down the food to help create more/other amino's then the yeast soup in the gut uses that food/nutrients you should be using instead.. you end up feeding the yeast and not yourself. That is my understanding of some of it.

yes sometimes it seems a little difficult to get the system to process not sure if it is glitch or user error or both try puting "helped tics" try changing the words. i believe you would want to stay more towards the pans site...but the ts section might have some good things to help in regards to tics and natural helpers in the meantime... you might want to try to keep up the fight with thing like Oregono oil..Ole...monolaurin...and maybe some antiinflammatories like turmeric...just a couple thoughts.. Good luck!

interesting question.. as ds4...who also was only on abx a couple of times has clos ds4 has tag issues..and as i wonder why he is not growing..found that he has yeast, clostridia and no amino acids. A poster here also mentioned that perhaps ds' lack of growth might be linked to lymes... ds did have shots up to 3yrs...but i also did selective shots....and have stopped all vaccines in all of my children.. i wonder...if i had continued, would ds4 end up on the austism spec... noting a couple odd things like tags and socks...and now notably the gut issues... did the disbiosis cause the lack of amino acids...or was it the reverse... could it be lymes? i have not tested ds4 or ds9 for lymes i am looking into my system and it might be that i have lymes per some of my symptoms, research and other info i have gathered. idk i wish i knew there is some speculation that most autism patients might be linked to lymes...again idk

Mar..i pmd you.

got to run.. yes pandas. tics are a pain. need to check for all possibel infections and may need to include and investigate integrative medicine as well. Allergies are a huge problem for ds12 and his tics and his onsets...again it S*^%*(!!!!!!! absolutely can be hindering recovery. ds is on allergy shots. remember for these kids not one size fits all or even 10%...it is truly an individualized conditon....

When it was strep only...ds12 responded 100% standard dose abx..I was spoiled. Ds12 is in episode 3yrs now and still trying to pursue what the he*&&^^^%!!!!! Ds9 i thought was going to be non-pandas...exposed to strep and nothing..but..it was about 6 weeks later the tics started and his neck became very enlarged and found it it was mono....mono takes longer to clear...and it took a full 3 months for them to remit. For my kids...strep gets quick resolve. I believe for them and others i talk to...when it is other(ie virus, myco p. possible lymes)the road is ALOT longer. Just what i'm putting together now. I think i' a slow learner...but to my defense i was used to getting remission within 2-4 weeks with strep. It S*(&^554!!!!!!

There is a DAN that treats PANDAS too, who moved to Cumming GA. Used to be in Melbourne FL Dr Bradstreet.

Hi Gunilla, Being new it is sometimes hard to know how much you can research on this site. There has been discussion in the past about this. It is more frequently talked about on the lyme section. I seems to me that some kids experience a herx in regards to ivig. We have not done ivig. It does become confusing between herx and bad med....that is the connundrum for alot of us. It is good to post things like this as it might remind parents of things they may have forgotten or put a different spin on the same topic that might give someone that AH-HA moment. It is great that you are taking this on, in another part of the world. Best of wishes and succes in finding more support!!!

i do not think you are nuts.. the dr and patient have to work as a team. the dr cannot prescibe unless you tell them conditions and what you have witnessed...and responses the you have witnessed. if the dr's had listened to me 9 years ago pans research would be 9yrs farther along.. as far as clostridia..we are treating that too....you can help back fill with alot of probiotics... imagine playing in sand...as you scoop it out,,,other stuff slips in..could be good or bad...even though you might be trying to fill it in with good stuff, ie probiotics..other stuff is going to fight to get in there too..yeast clostidia....that's why it's not just scoop it out once and replace with beneficial item...everything is competing for the same space continually...so you have to keep suppling new troops to the fight. our dan wants me to get my ds4 up to 100billion probiotcs a day to fight c.diff for him...we are trying to fight it without vanco or flagyl..this child also has a yeast infection. this child is small and just found out he has no amino acids..cdiff and yeast infection...and is pandas(but in remission for better than a year)...i feel if i had continued with vaccines he could have ended up on autistic spectrum.(does have tag issues and teachers kept hinting for a while{their hands are tide to what they can say}the he does not seem to be keeping up with the other kids in pre-k) all of our docs discuss why and what meds for my kids..and if i bring up something they will tell me why not, or say thats a good idea... i'm thinking he didn't hear you

oh one more thought... i always wondered why ds might literally blow up and get hives from one cat and yet he was ok (it seems, i dont' know what damage it's doing that i don't see) with another persons cat. one theory is the type of cat. another is what they are feeding it that makes the some cats seem more allergic. i think its what is in the saliva that is the irritant...so even if the cat does lick you, it licks itself. idk

not saying that this is what is causing the tic. i believe i am correct in saying that more people are allerigic to cats than any other animal. allergies can present in Many ways....my sister would pass out.. She would be talking to you and just fall out. there were a few ambulance rides. 2 times she fell against the plaster wall and put a grapefruit size hole in it. they did mri's ekgs..you name it. it started the year after we moved from the city to the suburbs. no itchey eyes or snot. it took 2 yrs to figure it out. Pollens seemed to cause almost instant inflamatoin in her lungs or something. she did allergy shots and was fine ever since. But she thinks the thing that really helped here was getting preganant. No allergy shots and she lives in the country. ps i also find tics sometimes are caused by the irritant as in ..if snot in throat..he trys to clear it out..that becomes the new tic

Not a good thing, it is a toxin. i like this read. Talks about affecting the immune system. http://www.consumerhealth.org/articles/display.cfm?ID=19990303222823 ps..this says no fl under age of 2? i figure its' just like when smoking was fine.. then it was bad, but second hand smoke was fine??? now we all know better.. http://www.time.com/time/specials/packages/article/0,28804,1976909_1976895_1976898,00.html

Do you have a DAN? Mine will give me abx when we go in for teeth cleanings? We don't use floride tooth paste. Check the contents. Maybe start a round of ibuprofren for a couple days. I hate teeth too!

OMG...THANK YOU!!!!!!!!!!!!!!!!!!! Thank's to those who directed this for not excluding TS!!!!! My eyes are blurry from the tears. If you want to start getting the tomatoes ready to fly at me, regarding my previous post on my concerns about not including ts...i will take my punishment accordingly. I am ready for what ever adjectives you have. But, i would like to see a statement made from some of those who wrote "the paper". I guess i should get a fake facebook act. Thanks for posting the link!!!!

some say quercitin or allermax and that has quercitin in it with NAC and other stuff i'm not sure if my ds does well on that..my ds is a ticcer. we have done allergy shots and pollen has gone down below 100...soooo. based on a friends report ..she swears by garlic a couple times a day and i think C is suppossed to help too so as of now(again we just reached maintanence) and just dropped singulair, and a short lived attempt on zyrtec just doing c and garlic

if i could pick your brain a little... 1)are you saying that you gave hime ibf 3x a day from July 2011 till until April 1 2012? 2)once taper ended it got worse than prior to steriod, but ended up with a 20% gain? I'm also guessing (idk)you went off of ibuprofren during the taper? 3) so Mid March would be one month from the end of the taper....Did you restart ibuprofren after the taper..that would be an additional month of ibprofren before stopping ibprofren completely? Just trying to calculate, unless you meant something differnt...he was on ibuprofe for 6 months, a month off, then another month of iburpfren. Sorry if i reading that wrong. Just trying to clarify things. Remember my brain is overloaded, so be kind if i misread that. PS i wouldn't mess with another right now. see where you are in a couple months... you have/take a little time to think it over JMHO

Oh So Happy for both of you!!!!!!!!!! ANd thanks for telling us first.

Good job with your research. Sometime us old timers, and people who go on to better places forget to mention this topic. i'm not sure i noticed a difference. many have. but it's easy enough to avoid so why not. Good job.

i haven't followed too indepthe the mthfr thing, but kept an eye on it. ds tested normal...go figure. but i still wonder if a little might help and there is a break down some where else do to disbiosis i found this on the mthfr and dosing methol/niacin and goins slow like llm said sorry if has been posted already http://mthfr.net/methylfolate-side-effects/2012/03/01/ but if you do have a worsening it might be do to this Consider 1 to 2 capsules of 250 mg of liposomal curcumin to help quench inflammation. If one takes methylfolate before inflammation is controlled, the methylfolate will worsen it. One may consider taking 2 capsules of Optimal Turmeric three times a day during times of inflammation. llm you got the (posts) moves. thanks again for all your reseach. princess...how much dose your dd weigh

ds12 has horrible allergies. we have mentioned that lack of and uptake of vit k contributes to high histamines since ds was 3 he has had FREQUENT abx use and a total lack of probiotics till he was 9. shame on the drs and shame on me for not figuring it out. now they are saying if you take abx you should take probiotics for 3 months after. and now with all the activa commericials we realize is is part of standard health. well it did seemed to me that his allergies got worse over the years. Vitamin K deficiency is very rare. It occurs when the body can't properly absorb the vitamin from the intestinal tract. Vitamin K deficiency can also occur after long-term treatment with antibiotics. http://health.nytimes.com/health/guides/nutrition/vitamin-k/overview.html but i think it should be low dose as it is usually used for clotting blood and may be contrary to use of steroids and ibuprofren. i did find a supp that was food based and i might split that pill in half for ds12. i have gone back to single supplements for him. i wonder if that is why people who take things like juice plus say their allergies go away, because they are getting more sources of plant based vit k????????