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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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citygirl

Decision to be made on possible pandas DD

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I've had tourettes since I was about 5. I've managed it on my own mostly, briefly on haldol when i was in high school with no result, and went on to have a good career and family of my own. But I have been holding my breath (literally due to tics ;) and metaphorically) for my two daughters, wondering if they would have tics like I did.

 

My oldest dd, now almost 7, had at age 5 brief episodes of eye blinking that I wondered if strep was involved. Only got a rapid test which came back negative with our naturopath. We gave her Yin Chao for the viruses/cold. We mostly cut out wheat/dairy and upped her magnesium through dietary means (more chickpeas, bananas, nuts, seeds, etc...) We already eat clean organic diet due to my tourettes, so the family has been on a healthy diet since before the kids. We may have done epsom salt, garlic, acv, or gse briefly. But whatever we did or not, it passed and no more eye blinking, to my huge sigh of relief.

 

My youngest dd, who is now 5 (what is it with the age 5?!?)about a month ago started to exhibit these deep sighs, saying she can't get a full breath in. She does it every 1/2 min when we read. She also had a string of viruses and stomach bugs in the last 3 weeks, which has been going around in the whole town this winter. And her sighing has been getting worse. She had been complaining of stomach pains on and off before the sighing started. We had taken her to the ped and he thought we should start first to see if she was constipated. Her tummy is a bit distended even though she is regular. This week, I took her to the ped again for the breathing, and asked for a strep test. I also wanted to get the western blot for babesia, but she wanted to do one at a time. And after doing a 48hr strep test, she is positive. and ped has prescribed abx.

 

My big question is, at this stage when she's better physically from the viruses/bugs, and only having this sighing and periodic stomachaches, is abx the answer? Or am I better off trying to amp her system to ride it out and treat strep naturally w a naturopath? Older dd seems to have ridden it out (although I'm cautious to say it, since my tics turned into tourettes when i was 11/12 with much lifestyle change/stress) I was put on abx when i was young, and it didn't stop my tics from coming back. Strep is all around us. We will always be in contact with it. At an early stage, is abx the answer? At this young age, if they are healthy otherwise, should I try to help her own system to fight it off with natural means? Wondering if abx robs the opportunity for the body to fight it off, if the body is otherwise healthy? Or is there a crucial window of opportunity to use abx with strep before it snowballs? Really not knowing what to do. Would love to know people's experiences and thoughts. Since I've lived my whole life with tourettes, I would love to spare my dd's.

Edited by citygirl

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your are asking a tough question. Our kids were both much worse than your dd when we started them on abx. but on any given they, they may be better than your dd and we give them abx not knowing if they would get worse or not. so, that, kind of, calls for starting your dd on abx. but, do you understand why abx are given?

why would you want your dd take them exactly?

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Ped prescribed the abx based on a positive strep test. I guess I'm looking at it from more wanting to prevent this turning into a full-on PANDAS. Right now, I don't know what the sighing is related to. She's finally physically recovered from the viruses/cold/no other symptom of strep now. So without knowing if the constant deep sighing is an autoimmune response to the strep infection (PANDAS) or not, I don't know if I should start abx with her or just do natural support for her system to get better quicker(i.e. vit c, gse, or silver colloidal, garlic, acv, etc...).

 

Sorry - just stressed at the thought of her having tourettes/tics like I did/do. Am i jumping the gun here about pandas and lyme/babesia? I would love to avoid abx but not if it means i may be exacerbating any underlying snowballing of pandas down the road by not doing it. what is the best course of action at a very early onset/cusp of these conditions?

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I would think the best thing is to find a PANDAS specialist in your area. They can order the blood work to show current or recent infections.

 

If symptoms get better on antibiotics it could be PANDAS. But without blood work you won't know what to treat

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If you are positive for strep I would treat. Strep is nasty and that is why there are other autoimmune issues besides pandas like rheumatic fever, scarlet fever etc. I go to a Chinese herbalist and she even says if my kids get strep I go to the pediatrician.

 

It's great you have a naturpath on board and you eat organic. They can help you support the gut while on antibiotics. It will be interesting to see if her sigh disappears. You also might find other subtle changes you didn't realize come with strep. Good luck!

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you could try a simple question by asking if her condition is auto-immune. do you have auto-immune condition in your family? does Ibuprofen descrease tics? etc.

so, yes, find pandas dr, do tests, but also try to figure out what triggers tics.

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Our dd was three when the strep infection hit that ultimately rolled into pandas.

 

She was first diagnosed with rheumatic fever, and was placed on prophylactic abx after the first abx run for the active strep.

 

Given what I know now about the gut, I wish we would have been able to support her gut better while taking abx for that length of time. I think her gut is so damaged now from the 8 months do abx that is has exacerbated her immune system to the level that her whole system is a mess.

 

For us, we now do a mix - we work a lot with naturopathic dr, and treat her with short term abx with active infections (with LOTS of gut support), then back to "food medicine" only.

 

Even though she did have abx that first time, it did not stop her system from more damaged - ironically, I think for her, those months of being on abx (without us knowing the impact on her gut), was what has made it worse.

 

I have learned that if her infections aren't treated, the autoimmunity issues get worse (she now has lupus like involvement with her livers and kidneys). On the other hand, due to our naivety, I think having her on long term abx also made it worse as her poor gut is struggling to regain its ground.

 

If only! Hindsight is 20/20, and I can't predict what would have happened if we woulda, could, shoulda......

 

End of the day - when on abx, be sure to support the gut. :)

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