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skipping_oz

I think my ds has strep again and we have no access to abx.

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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

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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

 

 

Unfortunately, I don't know enough about OLE to respond to that part of the question, but did your DS get abx for the head wound infection? If so, I would consider seeing if you can find out if that is what is triggering the current symptoms. Is it possible, he's still sick with that? Once PANDAS has been triggered, other illnesses (including bacterial, viral, colds, flu, etc.) can trigger the symptoms. In other words, it may be strep, but doesn't have to be, as it is the immunological response that is believed to trigger the symptoms rather than the infection itself.

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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.

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The only other thought I have is to use advil or an equivalent anti-inflammatory while you are figuring out what to do. I think many of us have done this til we can get an episode under control--the thought being that pandas causes inflammation in the basal ganglia (leading to the behaviors you see), and an anti-inflammatory may help tone things down. Hope things are better soon!

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Hiya,

So sorry this is happening... sounds like there may be an infection sitting in that wound. What about trying Dr G at Clayfield? Have your tried a GP and describing the physical symptoms? (Some older drs might respond to the fact that you can smell the strep... don't mention PANDAS, just concentrate on infection symptoms.)

Otherwise, can you get in to see a Naturopath? My son responds well to Bioeffective A, which is supposed to be an antiviral I think, and Andro NK, both of which I get from an integrative dr. Bumping up the Vit C is also worth doing.

As for OLE, it's supposed to be anti bacterial, antiviral and antifungal and could help, though there are no research papers which attest to its efficacy. However, I'm aware that with the Bioscreen stool testing it's not recommended it be used in the 4 weeks leading up to the test, so it must do something!

And you could try Ibuprofen/Nurofen for inflammation.

 

Edit to suggest that the flatulence could be a herxheimer's reaction - that is die off of bacteria??? Maybe?

Edited by Ozimum

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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 ... :wub:

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. B)

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Dr G has had similar training as our Biomed dr and I'm sure he would be helpful if he's available. He's one of the two drs who are recommended in Qld by the Aust Biomed community so I would have some confidence in him, even if he hasn't had experience with PANDAS. He should know the protocols and I bet he would be concerned about any residual infection in that wound given PANDAS. Worth a try! Good luck!

Edited by Ozimum

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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.

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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.

That is so weird! After months of getting treated for strep with different abxs (and it just kept coming back, my tonsils would not go down), I finally got my tonsils removed. I insisted on a culture, and it revealed, not only strep (in spite of all those abxs), but also pseudomonas aeruginosa, which the sensitivity test showed resistant to nearly everything except Cipro. When I went for a follow up with an infectious disease specialist he gave me two Bicillin shots right there and then and sent me home with a prescription for 2 weeks of Cipro. I did not have any side effects from it, thank God, but yes, I hear in children it needs to be monitored carefully.

Good to know the OLE is working for your son and things are looking better!

For us, after 2 years of PANDAS/LYME treatment, homeopathy has been the thing to get us on the road to true healing. If that is an option for you (I hear Australia has some very good homoepaths!), I would definitely explore it, particularly since conventional medicine seems such an ardous road over there. I don't check here often so if you have any questions please PM me.

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