skipping_oz

Hi there. My son has been on NAC for 3 months now. He has 500mg morning and again at night. We noticed a decrease in tics (actually stopped completely about week 5/6 then kicked up again when exposed to another virus two weeks later.) His asthma has been better and we haven't noticed any other symptoms. Good luck with your trial

Thank you Isabel. I was thinking internally as well since I have read about OLE being a great strep killer but also causing more yeast - that the OoO should counter (from what I can figure out) if taken internally. I make a huge fuss when Matthew swallows his big tablets about how clever he is and how I can't believe he manages so easily ....l works for now at least so I'm keeping it up. Will try the capsule thing definitely. I've always been worried that a stuck tablet or bad tasting medicine will put the brakes on him happily taking whatever I tell him to, so a capsule for OoO would be a great answer Thank you. I am sort of dealing with the strep on one hand and the bacteria in his cut on the other. OoO should help with both I think.

Very interesting Vickie. Since discovering PANDAS Matthew's been on a 20 second soap then wash routine with his hands. (took advantage of the OCD - has to have an upside somewhere!) No hot tubs around here but we do put Epsom salts in a bath for him. I will pull the bleach out and do the tub first thing tomorrow. I have been considering OoO but must admit the thought of fighting him to take it was putting me off (That and the cost) but I think I have to get it now. I have been too scared to research the bacteria as just the little I read sent chills through me. First PANDAS now a weird abx resistant bacteria argh!!! Thank you for your thoughts. They have really helped me think. Thank you.

No we have no fish and no access to ponds or anything .... Good thought tho. He's always playing with the aloe Vera plant and I am highly suspicious of that .... Starting to be worried about everything. His tics have settled in completely now. I knew I should have thanked every day I only saw a few ... I'm keeping a particular watch on his asthma ... If it heads to his lungs I don't know what will happen. Strange that you had the same. Do you have any idea where you contracted it from?

Hi Vickie. It's called pseudomonasi aeruginosa. http://en.wikipedia.org/wiki/Pseudomonas_aeruginosa They need to use quinolones to combat it and on the result form it even states they are not approved by use in prepubertal children because animal studies have demonstrated the development of joint cartilage erosions. Apparently it is rare for humans to actually contract even tho it is around us. The doctor said the wound is closed and the red is probably healing so no need for further abx. Still trying to get a doc appointment at either clinic we usually use to double check it tho. Don't know about the silver so won't go there ATM. Thank you tho. I must say, a couple of days in and either the OLE or the Motrin/Nurofen seems to have certainly calmed symptoms. His pupils are normal agin too.

Thank you. Will do that with the OLE. Makes sense. Just curious, the other doctor recommended would that be Dr D?

Thank you all so much. With the public holidays around Christmas it has been impossible to get an appointment to see a doc. I will be on the phone first thing tomorrow for sure. I had forgotten about the ibuprofen ... His head injury originally healed to a beautiful tiny white scar you could hardly see, then all of a sudden a month later it became infected over an 18 hour period. He was put on abx and the infection looks healed, so the doctor we saw wouldn't give further antibiotics, but is still REALLy red three weeks later. The bacteria that infected it was apparently a bacteria that only lives on damaged skin and is resistant to all antibiotics available to the general public - apart from 4 which in Australia no one under 18 is allowed to have administered due to sever side effects. [Completely bizarre. We couldn't even figure out where he may have contracted the bacteria as it usually is plant based!] Ozimum, Dr G at clay field knows about PANDAS but has never actually treated a child with PANDAS. Another mother near here managed to get in to see him before I could and she felt he was experimenting on her child. I have a BioMed doctor who seems to be comfortable dealing with PANDAS, he has just gone on holiday for a little while. He has M on NAC for his tics, zinc for his immune system, probiotics, turmeric, fish oil and Vit C. He is also trailing us on Sinupret Forte for his sinusitis. He also had him on first to attempt to clear any remaining strep in there ... Interesting about the OLE .... I have given him some again since and the side effect has been nowhere near as noticeable/offensive so I will keep it up for now I think. I will also up the Vit C. Thank you again all for answering. I really appreciate being able to ask and bounce around ideas.

Thank you for answering. Yes my son was given abx for the head wound. It has since healed, for the second time, but every doctor that sees it comments that it still looks angry. None will give further abx for the wound as it is not open or showing any infection apart from the red. [Doctors here are VERY wary of overprescribing abx so often only prescribe it when chest infections etc start becoming very serious.] Our original doctor taught me to smell strep on M's breath as an extra/quick test mechanism to tell me when to bring him to be treated quickly. [she has since stopped practising as she suffered in our devastating floods at the beginning of this year.] My son has that sweet/sour breath at the moment. He also has had a viral rash for the last two days. He was running a low temperature for a few days before the rash {but for some reason never seems to get high temperatures anymore}. He has also had his T&A removed and doesn't get a positive strep swap test back if done on his throat. The only positives we have had are from nasal swabs when he has had impetiago. This is why I think it is strep. tpotter how do you treat you child? Is it mainly abx or have you done natural remedies as well? M did well on abx but aas I said before I am doubtful of being able to access the amount needed before February. Thank you again for answering.

My son (7) had his first noticeable exacerbation in May 2011. We are in Brisbane Australia and despite seeing a huge list of specialists and doctors this year there remains very few who understand or even accept PANDAS here. Diana, Dr Swedo and Dr Cunningham were very helpful in helping to determine my boy has PANDAS in July and I am comfortable that it is as when he was place on augmentin high dose for a month and a half all symptoms disappeared and I got my kind, caring, relaxed child back. I think my son has strep again now. We have had a head wound recently become infected (with a rare bacteria out of the blue) and his symptoms (only mild really - his tics increasing (and they had almost gone!) plus a lot of oppositional and defiant behaviour) They have all been escalating. We cannot get abx ATM as the only doc who acknowledges PANDAS that we have found is currently out of the country. I have OLE and am happy to try that if anyone thinks that would help. In desperation yesterday I gave him a dose but afterwards we were subjected to the most foul smelling flatulence I have ever had the misfortune to smell. (sorry if TMI). M has had OLE in the past but never such a side effect. Can anyone help me try to work out how to halt this before it turns into a full on exacerbation? Our doc should be back by beginning of February but I need to do something now. To be honest I am not sure abx is going to be available regularly even when our doctor returns so I am starting to investigate more natural options. Sorry this is so long. I appreciate any help you are able to offer. I 'lurk' on this forum every second day or so, so I know many of you have great experience with this. Thank you in advance, Lisa

Does your son suffer from allergies? My son has a similar tic (without the pulling down the lower eyelids). The opthamologist swears it's from allergies and that she sees it several times a year. They do reduce when he is on eye drops. (Currently on FML drops but also uses Zaditen http://www.zaditen.com.au/ ) Hope this helps a little. Oh, and M's eye tics increase after chlorine exposure too.

He takes the NAC tablets with a mixture of juice (with some apple cider vinegar in it) and he takes a Vit C chew and a omega 3 chew each morning. Haven't done the larger supplementary dose as yet. We see a MINDD doc (BioMed) and at this point has not asked us to increase the Vitamin C. I am trying very hard to keep his water consumption up. Sometimes I think I'm spending too much time trying to juggle it all, but when the tics came back I realized that something positive had been happening (and i hadn't even noted when they had disappeared!) i had forgotten how much my heart breaks when he tics while talking to a friend or trying to sit and listen... So now I am continuing to research and trial. They only have one life and I am going to try to make my son's as normal as I can. Sorry off my soapbox now.

My son is 7. Weighs 70.5 pound. 4.4 ft. [going to be 6ft6 to 6ft8 we have been told.] No excess fat in fact underweight for height not age. NAC Dosage is 500mg X2 daily (Starts out at one daily for 2 weeks.) I am afraid I can't help with any advice as just know how the NAC seems to be working for him. I was a bit upset that I noticed the difference so quickly when he decided to skip it that week but I guess we are only 8 weeks in now not long term users yet. I do think the Epsom salts make a difference too but haven't got proof as he knows I'll do my nut if I find he hasn't used it. I hope that you have success with whatever you next try. I hate hate HATE the tics. They don't help socially or emotionally at all. Our poor boysdon't need extra hurdles.

We use NAC. Vocal tics almost non existent 2 months on. We also use 2 cups of Epsom salts in a bath most nights {6 out of 7}. The NIMH did a study in 2010 with Tourette's patients. Results were that hair pulling urges (like the tic urges) had reduced after 6 weeks and no negative side effects were found. My son stopped his NAC for one week without me realising. When the verbal tics started again I became distressed an discovered his stash. It took only 3 days for the verbal tics to disappear again and about a week and a half for the stubborn facial and shoulder tics. My son also takes 2 600mg turmeric capsules and alternating night 500mg zinc but not for tics as such. Hope this info helps a little.

This is eloquently written. You should be very proud.

Thank you for posting this.