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Please help...my 5 year son was complaining of a very sore throat today and now has just come down with a fever of 38.

 

He has been so good lately with a 95% improvement after 3 refills of Acyclovir and I am now terrified and feel paralyzed and don't know what to do. I am fearful that all his tics and OCD will come back. In the past, we have given him ibuprofen for rage which makes it go away but he has not had a fever for so long. Do we let his body try to take care of the infection, or do we do the ibuprofen?

 

Any thoughts are appreciated. Honestly just feeling scared and wondering if this is the calm before the storm as some parents have said that their child getting major exacerbations after fever.

Edited by cobygurl
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Fever, though, means that he's fighting the infection, which isn't bad. When my DS got a low grade fever recently, I celebrated. That being said, I would keep an eye on his behavior, and if it gets really bad, I would dose him with ibuprofin, but my opinion, is to let the fever do it's job as long as possible of killing whatever he's got.

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Thanks for the advice. I was feeling so upset yesterday just because I was feeling so hopeful. We'd had several good weeks and then minor ticcing starts and then fever. We were in the NorthEast visiting Dr. Bock for a consult and so maybe it was Coxsackie (Coxsackie according to Dr. T was responsible for DS problems.)

 

Anyhow, his fever broke early this morning and I will continue to watch him. Would you still give him ibuprofen if the fever is gone and he is showing no signs yet of rage or major ticcing (just to head off the inflammation?) If so, how long? Can anyone explain why these children get over the fever but then get worse, I just don't quite understand.

 

Thanks again, don't know what I'd do without this forum!

Edited by cobygurl
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fever, for some reasons, suppresses symptoms temporarily. nothing to celebrate, though. that's known since syphilis patients went through the same. I don't know what the explanation is exactly, something long the lines of inflammation.

ibuprofen, yes, you can continue because you are giving it for inflammation not for fever anymore. BUT ibuprofen may have side effects, some quite serious. our ds who is 45 pounds takes 100mg in the morning.

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Help.

 

This is 2 post fever and sore throat. He had a fever and sore throat Sunday night and today is Tuesday morning. He woke up yesterday and was fine. Sore throat was gone, fever gone. Only thing left is a stuffy nose.

 

Anyways, today he wakes up with a really bad shoulder rolling tic - like adjusting his clothes. He says his shirt is falling off and he needs to fix it.

 

I have no idea what to do.

 

Give him ibuprofen to start reducing inflammation, get him a throat swab (could it be strep if his sore throat is gone in less than 24 hours?).

 

I can't believe it, such a good 8 weeks and now it seems like we're going downhill again. I was starting to feel "normal" I just want to cry.

 

Thanks for letting me vent.

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DD had the exact responses to infection/fever that you describe both before and throughout most of her treatment. She no longer gets the after-fever exacerbations.

 

Sorry I can't be of help because I don't understand the responses either, but with healing these reactions do diminish. Interesting about similar reactions in syphilis patients, I didn't know that. Perhaps fever kills off gram-negative spirochetes releasing endotoxins and there is a herx afterward.

Edited by rowingmom
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Hi RowingMom,

 

How long did the after fever exacerbations last.

 

Did she ever retain certain tics or is they all go away? I did notice as the day progressed his shoulder tic got better but I was so freaked out that I have him both coconut oil and olive leaf extract - a lot of it - to help him fight off whatever he has.

 

Took him to the doctor for a swab. They did it but said his throat didn't look like strep and it was most likely viral.

 

Curious is there anything you are giving DD, in your opinion, that helped to modulate and balance her immune system?

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One exacerbation was never like another. It depended either on the infection (viral? bacterial?) or on the new antibiotic protocol were we initiating. The exacerbation seemed to last as long as it took her body to detox, and would decline to a present but low level.

 

While on abx treatment ticcing was always present, waxing (to level 8/10) and waning (to 2/10) with infections and changing abx protocols (especially tindamax). The only time they disappeared was when DD started treatment with malarone (anti-protozoan). Why this was, IDK. She tested negative for babesia but we never tested for other protozoan parasites. Perhaps there was some anti-inflammatory action to malarone.

 

After weaning from abx and continuing with anti-inflammatory/bartonella herbal protocols she is at a level 1/10 for ticcing. I ask her daily if she has had ticcing. She replies no, and I see no evidence of it, but she is still forced to tic once when I ask (and we giggle), so I know it's still there.

 

In the beginning I kind of assumed that antibodies to the infection were producing brain inflammation and thus symptoms (the description of PANS/PANDAS), but over the course of the last two years (and recording daily in my handy dandy Excel chart :)) I realized that her symptoms were more likely the result of bacterial die-off caused by the fever. Usually the exacerbation would last a few days to a week, probably not long enough for her body to clear inflammation-causing antibodies, but long enough for her body to clear endotoxins.

 

This was true in our case, but perhaps not for others. We also used Japanese knotweed daily for inflammation and continue to do so.

 

If you are addressing any methylation defects and detoxing daily (we use lemon water, epsom salt baths, daily psyllium away from supplements, probiotics) and find no resolution to the exacerbation you may be dealing with true antibody-induced brain inflammation.

 

To boost DD's immune system we use COLD-FX (a Canadian supplement of American ginseng extract) daily as well as astragalus 3x weekly. Buhner says not to use astragalus in chronic lyme as it stimulates the Th1 pathway too vigorously, possibly resulting in inflammation (and an exacerbation of symptoms), and suggests the use of cordyceps , but we find low doses of astragalus to be effective. DD is also taking 3 mg allicin (garlic extract) TID.

Edited by rowingmom
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