herxing - passing out

[mmiglio]

Just when I thought age regression was the scariest and most heartbreaking part of this disorder we have crossed into a new one. Yesterday my dd 12 (PANDAS/PANS Feb 15) started having episodes where she couldn't even talk and she frequently just passes out. Fortunately the few times she did it while standing I was nearby and was able to catch her. They are continuing today.

 

It literally is like her brain is so inflamed or scared or something that it has to shut down. Her body just turns to jelly, her pupils get very small and she just crumbles.

 

I have a call into her LLMD but who knows when she'll call back.

 

She started rifampin last week... we did one week with just 150 mg a day and yesterday added the second 150 mg pill. I can't decide if we should go back to one pill or push through since the second pill really seems to be killing some bugs (possible lyme and bartonella diagnosis along with strep and myco p). She's also on 50 mg minocylcine 2xday on MWF. Today and tomorrow she is taking flagyll for cyst busting so I imagine the herxing is only going to get worse.

 

We're detoxing with burbur, pinellas and epsom salt baths. She won't do charcoal or clay or lemon water. She doesn't take any meds on Sat and Sun so I'm hoping for some relief over the weekend but has anyone else had this issue?

 

How much can one little body and brain take?

[dut]

Sorry, you're having to deal with this as well. Could you be dealing with seizures or POTS (postural orthostatic tachycardia syndrome), vasovagal syncope?

 

Just some ideas, good luck

[rowingmom]

So yesterday you increased rifampin and today introduced flagyl?

 

The cyst busters flagyl and tindamax both cause significant die-off, as can rifampin.

 

Poor kid, I'm sorry.

 

If I was you I would do one for a while before introducing the next. There is always an initial die-off when increasing dosages or starting new abx. You need to wait until her body has processed the first load of toxins before adding a second.

 

Don't push so hard killing bacteria. It's easier on kids if you go slow.

Edited August 27, 2015 by rowingmom

[mmiglio]

So yesterday you increased rifampin and today introduced flagyl?

 

The cyst busters flagyl and tindamax both cause significant die-off, as can rifampin.

 

Poor kid, I'm sorry.

 

Yes. I guess that was stupid. She does flagyl every four weeks as part of the protocol so we just kept with it as per her dr. The symptoms started yesterday however before even increasing the rifampin. We probably should have started the rifampin every other day to begin with instead of just once a day. Although the dr wanted to jump right in to twice a day.

 

The dr did call back and said to stop the rifampin and flagyl and go back to just minocyline on MWF next week and then add rifampin on MWF the following week.

 

And we are increasing her luvox to hopefully get some of her OCD to make her reaction to the meds more tolerable.

 

 

Rowingmom... in those early days when you were treating your DD with multiple abx, how did you get through the day? We've only been at this five months, but there hasn't been any progress beyond the resolution of most of the raging. Her OCD is going off the charts, and she'll barely eat. Do we just sit back and wait for the abx to hopefully work? Was your daughter able to go to school? Mine is supposed to start 7th grade on Sept. 8. She was an advanced level student. Now we are looking at a home bound program but aren't even sure how she'll do that.

Edited August 27, 2015 by mmiglio

[rowingmom]

DD's treatment started in June 2011, by Nov she was still dealing with these symptoms (levels from 1-10, 10 being worse). When we began treatment, each symptom was at a level of 4 or 5.

 

Shin/forearm pain 5; Headache (pick-like) 3; Stomach pain/nausea 1; Motor/vocal tics 5; Sore throat 1; Emotional lability 4; Sound sensitivity 4; Concentration (poor) 4; Foot (sole) pain 2; Tingling extremeties 0; Joint pain 0; Fatigue 4; Hot flashes/chills 0; Light sensitivity 3; Night sweats 0; Neck pain (base of skull) 0; Palpitations 0; Dizziness 0; Panic attacks 0; Night waking 0; Incontinence 0.

 

Any increase in symptoms you see is likely due to herxing. Fortunately OCD wasn't one of DD's problems, other than she would draw the same picture over and over and over, in school while she was supposed to be working, in school when she was supposed to be eating lunch, at home when she was supposed to be doing homework, etc.

 

Because her symptoms started pretty much at birth, she was already accommodated (IEP) with redirection and a smaller work load at school. Also, in 2011, she was in grade 5 so not as much was expected. Nothing that I couldn't teach her at home beforehand so she would know what to expect the next day at school.

 

She even had to be redirected to eat lunch; had to go the remedial class, or she would draw and forget to eat.

 

Seriously, I spent so much time at school, talking to the teacher, cleaning out her desk etc. because she was totally incapable.

 

She spent most of her spare time by herself and didn't bother interacting with other children. After the 2 years it took her to improve to a point where no one could notice that she still had symptoms, we put her in a different school and they accepted her there.

 

It was a bit brutal, but you do what you have to do. Know that if you keep at it, you will find the answer.

 

I'm glad you have found a responsive Dr who understands that you can't push too hard. Now you know not to try that again.

Edited August 28, 2015 by rowingmom