Is this a flare or are we herxing?

[Teri]

So frustrated, confused, and sad for my DD6 (PANDAS,Lyme, Bartonella). She has been doing quite well ....started school (Kindergarten) and was doing well. In late December although she was doing relatively well we started to see her tics creep back in. We saw Dr.B and he looked at her bloodwork. There was a slight elevation in her Anti-DNase. He seemed to think that she may have a sinus infection. He put her on a 13 day steroid taper. Initially we saw her tics explode - new loud and frequent throat clearing tics came out during days 4-7 but eventually went away. During the 2nd week of the steroids she was the best we have ever seen her. The next couple weeks were really good for her - no medication arguments, no stalling with daily routines - getting to school was easy.

 

Shortly after finishing the steroid we started to see tics creep back and OCD behaviors increase. She is also far less verbal when she is not feeling right. I emailed Dr.B and her medication was changed from Cipro to Omnicef. She is also taking Azithromycin and Lamisil daily. We are on Day 5 of Omnicef. We saw a difference immediately on Day 1. However she is really struggling with tics and OCD behaviors which include touching things,chewing and twirling her hair, licking her fingers, and then rubbing her face. On Sunday she had rubbed her face in different spots so much that she had red chapped marks all over her face. She is fully aware of her challenges and is frustrated with herself. She is actively trying to fight the urges but it is hard for her. Her teacher is also reporting that she is seeing more frequency and a greater volume of her tics ( eye blinking, hair twirling, and head nodding). I am going to email Dr. B.

 

Could this be herxing from a new abx? We first saw OCD behaviors in the summer when we believe she started to struggle with Lyme / Bartonella. We have an appt. with Dr. J in mid March.

 

Any words of wisdom for us??

 

Teri

[LNN]

Omnicef triggered quite a herx for my son (omnicef+zith). It lasted about 2-3 weeks. The problem is that a herx and a flare can be nearly identical - it's only in hindsight that you can speculate on which it was - and that's usually based on how long it lasted.

 

A herx is different for everyone. What I can tell you is only true for my son. Your daughter may be very different. But for DS, a herx is more lopsided in symptoms. In a flare, we get OCD, tics, anxiety etc. In a herx, we get these plus anger, lightening quick temper, body/muscle pain, whining, headaches - more physical complaints, more PMS behaviors and rapid mood flashes - this plus the normal "flare" behaviors. But unfortunately, I haven't found any magic solution to make it go away.

 

Detox helps. Motrin helps. Letting them stay home or come home early helps a little. Low stress, fewer things on our social calendars and "to do" lists, lighter homework or homework spread out over smaller sessions - all help a little. My own experience is you try riding it out for 2 weeks. If things are still bad and not decreasing, talk to the doctor about reducing the dose on the omnicef temporarily. Then building back up once things have settled a bit. It's a marathon.

[pr40]

trying to suppress tics and OCD behavior might be a problem, too. perhaps, the advice should be the precise opposite, don't try to suppress them but something like "ride along".

[kthomas]

DMy DS7 has one of the same tics. It is so hard to watch them as they struggle with the tics and OCD. We too have had an exacerbation since December. We have been to the doctor several times, but he would not give a steroid taper or change the antibiotics from 250 mg azitthromycin daily to something else. He has suggested using over the counter anti-inflamatories and treating for allergies. We have done both and have seen some relief, but not back to where we started in December. I agree with the post about lessening the stress. During some of his worst days we kept him home from school and limited his extra-curricular activities to give him a break from trying to hide his tics. It did help. Our doctor wrote a note covering the absences so they were excused.