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Taking a break from abx


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30 hours and worse, actually. Please watch for post tomorrow. Tomorrow AM will be 48 hours since last abx (monday AM) and she is deteriorating...ref at softball game was fat and had tattoos, so she couldn't pitch for beans, and made us leave (got a ride home with friends). So she was licking her hands the entire game to "stay clean", then couldn't eat from those hands in our home, lest it become infected. Can't kiss us either because her mouth is now contaminated. This is a new level of OCD.

I gave her 20 bentonite clays and an advil and a benadryl and sent her to bed.

Praying for tomorrow to be better...what does it mean if it is not??????

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Laura,

I know this has got to be killing her - and you. I'm so sorry....I don't know if it has any merit, but I just posted a link to a site that talks about biofilms. It's really really long, but at the middle/end, it talks about pulsing abx and the benefits. Toward the end of the page, it starts to advocate the Marshal Protocol, which I don't know much about. But it gave me a new perspective on treatment options. I'm certain your LLMD is aware of the protocol and may have reasons for or against. But it's food for thought (not necessarily the protocol but the pulsing idea) if what you've been doing is getting you nowhere. If you can stand it, maybe consider a rotation plan. Not sure I'd experiment on my own, but might be worth asking your LLMD.

 

You're in my thoughts,

Laura

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laure, in your switch of antibiotics I couldn't remember whether one was bactrim. If it is, some kids do not react well to it. It has to do with the fact that it is a sulfur drug and if your daughter doesn't tolerate sulfur well this will make her worse. Sometimes this is not known until the drug is taken. I know she seems to be getting worse but that might be because you are off all antibiotics. You know how that can be even with PANDAS. Did you discuss changing up bactrim for something you haven't tried yet? Keeping you in my prayers. Kathy

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laure, in your switch of antibiotics I couldn't remember whether one was bactrim. If it is, some kids do not react well to it. It has to do with the fact that it is a sulfur drug and if your daughter doesn't tolerate sulfur well this will make her worse. Sometimes this is not known until the drug is taken. I know she seems to be getting worse but that might be because you are off all antibiotics. You know how that can be even with PANDAS. Did you discuss changing up bactrim for something you haven't tried yet? Keeping you in my prayers. Kathy

 

Hi Kathy,

She has been on bactrim since April 1st, but the backsliding began in early Feb. She was on Zith, Augmentin, and tindamax (weekends) before that. Personally I believe the strep is causing the problems, and until we can manage to eradicate that, her OCD symptoms probably won't go away. Believing this is all a herx has just delayed the discovery and treatment of strep. Dr. B switched her Augmentin for Vancomycin in late April to hopefully address any resistance to the abx, but clearly hasn't helped. She has another appt with him next Tuesday, and new blood work in, so maybe we'll get a lead. I haven't really researched, but how do the PANDAS folks who constantly get strep while on 4 abx ever get rid of it? Or don't they?

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laura- it's really tough when there is so many variables to chronic disease. I recall someone (maybe dcmom?) posting success with Clindamycin for resistant strep while on other abx. But, you need to take a good probiotic while on it because it increases the risk of c-diff. I really hope it turns around for your daughter soon...prayers!!

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Laure-

 

I am SO sorry. The ocd sucks, it is so hard for them, and heartwrenching for the parent. I know you must be feeling drained and devastated. But, you know she will get better- hang on to that.

 

So- we have never had chronic strep issues. My girls both had strep two years ago, at onset. They have both had T&A and constant antibiotics since. Strep exposure, but no strep until a month and a half ago. Younger one came down with classical strep symptoms (fever, sore throat, overall malaise)- she cultured positive. Cultured older one that day out of precaution- negative. Three days later older one woke tired, and with increased ocd/anxiety, cultured her again positive.

 

Both are on multiple abx for possible lyme (i am still not sold). Younger on treatment dose of augmentin and zithromax, tindamax 7 days on/ 7 days off. Older one on treatment dose of zith and 5 days per week of rifampin and flagyl.

 

I have not gotten into the lyme mess with the ped- so she only knew they were on zith. I requested clindamycin (I believe Kayanne's daughter originally had trouble clearing strep, and clinda was what did it)- this is the recommendation for carriers. The ped was planning to suggest that. Both girls stopped all meds (except probiotics, and flagyl for older) and did 14 days of clindamycin. This did the trick. Feeling better physically, follow up cultured negative.

 

Older daughter was immediately worse with strep- she was approaching 90%, went back to around 75%. We did IV steroids (I know you don't want to hear that) for her at home, which definately stabilized her- however she is still stuck at the 80% mark. Mostly ocd, not total panic level, but she is an avoider. At this point I am thinking she just needs time to heal. I hope she will be around 90% in a month (this is the pattern we have seen). We are planning an ocd intensive therapy this summer in FLA to give her tools to combat the last 5-10% sticky ocd, which only seems to go with plasma pheresis.

 

Younger daughter was about 110% prior to strep (really heartbreaking). She did not start to slip for at least a full week. She is now worse than the older sister; ocd, plus panic/ temper tantrum issues. We haven't done steroids with her- and that is really the difference. We are holding off a bit to see what happens, but I have the Rx in my purse. She will be SO much better in the summer, without the pressure of getting out the door to school, and hopefully time will heal her.

 

So the clinda really worked to eradicate the strep. The llmd wanted me to remove all other meds, as clinda can be hard on the stomach. After the clinda, we went back to our normal regimen. I really think, though, the strep got the pandas autoimmunity in motion, and they need(ed) something to stop that process. That is why my younger is not fairing as well.

 

I hope you find some answers.

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Laura,

 

I'm soooo sorry! I've been thinking about you since reading your post. (haven't been on here much lately) I feel so bad for all of you. I'm sure you're counting the minutes to seeing Dr. B again. Wish I had some knowledge to share but sending hugs your way. I imagine he'll be discussing the IVIG route again???.

 

You have my number (518-802-0134) if you ever need to vent.

 

Darlene

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I just want to say we were at the point of fed up. i went off abx 4 x! EVERY time my dd got worse, some times within the week, and another time she slowly deteriorated over 2 mos. We were on all the supplements and clay for several months. I personally felt it was too many variables, when I took her of the abx for 2 mos, I took her off EVERYTHING! That was when she lasted the longest. We have now been on abx for over a year- actually we are now on 2. I struggled with keeping her on long term abx for several months... she was so tormented by her own mind (suicidal at 8 yrs old!) then I gave in and accepted it... her mind or her gut... rather have her mind. Since Dec she has only been on abx, I don't give her anything else, just a healthy diet and she is doing great. I feel so much less stressed without all the other variables.... Is the clay absorbing abx before working? is one thing counteracting another? Is her system so overwhelmed trying to sort all this foreign stuff I am putting in her it is taking away from healing???? It also allows me to see her behavior pattern and I have just now figured out after 13 mos of abx she has a pretty consistent flare around every 4 weeks, it seems to be less extreme and pass quicker though. Several months ago I was so caught up in too many treatments and variables I couldn't recognize the pattern. I just thought I would share. i feel like the abx were the only absolutely necessary thing. In the last month or so I can say we are 110% between the flares. You may have to accept a longer course of abx. I must also mention that we did 4 hd ivig which did give us some results, so without that we may be looking at an even longer course of abx.

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I just want to say we were at the point of fed up. i went off abx 4 x! EVERY time my dd got worse, some times within the week, and another time she slowly deteriorated over 2 mos. We were on all the supplements and clay for several months. I personally felt it was too many variables, when I took her of the abx for 2 mos, I took her off EVERYTHING! That was when she lasted the longest. We have now been on abx for over a year- actually we are now on 2. I struggled with keeping her on long term abx for several months... she was so tormented by her own mind (suicidal at 8 yrs old!) then I gave in and accepted it... her mind or her gut... rather have her mind. Since Dec she has only been on abx, I don't give her anything else, just a healthy diet and she is doing great. I feel so much less stressed without all the other variables.... Is the clay absorbing abx before working? is one thing counteracting another? Is her system so overwhelmed trying to sort all this foreign stuff I am putting in her it is taking away from healing???? It also allows me to see her behavior pattern and I have just now figured out after 13 mos of abx she has a pretty consistent flare around every 4 weeks, it seems to be less extreme and pass quicker though. Several months ago I was so caught up in too many treatments and variables I couldn't recognize the pattern. I just thought I would share. i feel like the abx were the only absolutely necessary thing. In the last month or so I can say we are 110% between the flares. You may have to accept a longer course of abx. I must also mention that we did 4 hd ivig which did give us some results, so without that we may be looking at an even longer course of abx.

 

Thanks for sharing your experience. This week we were so close to just dropping all of it. We thought it through, however, and decided to continue with the abc, but cut back on a lot of the supplements that we didn't feel were crucial. We also went to a liquid variety of augmentin since those were the pills that made dd11 feel like she was choking. I am glad we stayed the course. Yesterday was a great day for her. Very little symptoms at all. We have an aptt with dr j in July so we are going to do our very best to stay on the abc until then. Otherwise we don't feel like we have given treatment our best effort. Hopefully more days like yesterday will be coming our way!

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Resumed all treatment today. Sad that we saw no good come of going off abx...I called Dr. B's office yesterday, and didn't hear back, but I believe her blood work was not yet in.... today I emailed him asking for clindamycin for the strep if those numbers are still high - which I believe they likely are. How awesome it would be to have strep out of the picture and just be treating lyme. Unfortunately no one knows where the strep is, no symptoms anywhere. I would have her get a T&A in a minute if it were there.

She still gets out the door to school, albeit late after 10 hand washings during which we cannot be present (have lots of magazines in the car where I am banished to in the morning), then have to witness convoluted door opening, carrying violin and lunch box and backpack without touching handles of any, it is all crazy. She is very brave (or just oblivious) going out in public every day like this. I am proud of her resilience.

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Resumed all treatment today. Sad that we saw no good come of going off abx...I called Dr. B's office yesterday, and didn't hear back, but I believe her blood work was not yet in.... today I emailed him asking for clindamycin for the strep if those numbers are still high - which I believe they likely are. How awesome it would be to have strep out of the picture and just be treating lyme. Unfortunately no one knows where the strep is, no symptoms anywhere. I would have her get a T&A in a minute if it were there.

She still gets out the door to school, albeit late after 10 hand washings during which we cannot be present (have lots of magazines in the car where I am banished to in the morning), then have to witness convoluted door opening, carrying violin and lunch box and backpack without touching handles of any, it is all crazy. She is very brave (or just oblivious) going out in public every day like this. I am proud of her resilience.

Good for her, though, to be able to get up and go everyday. It must be very difficult for her. She is a strong child When she is at school does she have the same behaviors or is it just at home?

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Resumed all treatment today. Sad that we saw no good come of going off abx...I called Dr. B's office yesterday, and didn't hear back, but I believe her blood work was not yet in.... today I emailed him asking for clindamycin for the strep if those numbers are still high - which I believe they likely are. How awesome it would be to have strep out of the picture and just be treating lyme. Unfortunately no one knows where the strep is, no symptoms anywhere. I would have her get a T&A in a minute if it were there.

She still gets out the door to school, albeit late after 10 hand washings during which we cannot be present (have lots of magazines in the car where I am banished to in the morning), then have to witness convoluted door opening, carrying violin and lunch box and backpack without touching handles of any, it is all crazy. She is very brave (or just oblivious) going out in public every day like this. I am proud of her resilience.

Good for her, though, to be able to get up and go everyday. It must be very difficult for her. She is a strong child When she is at school does she have the same behaviors or is it just at home?

 

She is a pro at hiding it, according to her teacher. She occasionally drips her hands on papers because she cannot dry them on a towel. She has it all planned out, when she washes her hands, how much time to allow for that, showers right after school before she can do anything...and she cannot bring any homework or books home. Luckily she seems to get it all done in school. We are pretty clueless though, without any notes/menus/permission slips/ etc ever finding their way home to us! Her teacher (who is amazing) says school is likely a "safe" place for her to forget about all of this because she believes no one knows, and teacher feigns ignorance and looks the other way when she is late/in bathroom/ washing/ doing homework during class. She is a Godsend.

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She is a pro at hiding it, according to her teacher. She occasionally drips her hands on papers because she cannot dry them on a towel. anything...and she cannot bring any homework or books home. Luckily she seems to get it all done in school. We are pretty clueless though, without any notes/menus/permission slips/ etc ever finding their way home to us! Her teacher (who is amazing) says school is likely a "safe" place for her to forget about all of this because she believes no one knows, and teacher feigns ignorance and looks the other way when she is late/in bathroom/ washing/ doing homework during class. She is a Godsend.

 

How lucky you are to have a great teacher like that! It is amazing the difference a person like that can make in a Childs life! If my dd11 had a teacher like that we wouldn't be homeschooling. You are blessed!

Edited by ptcgirl
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