When to expect improvement from antibiotic

[worriedmommy]

Hi there. I'm pretty new here. dd suffers from tics, and some anxiety, which we believe is due to PANDAS or PITAND. Tics are her biggest issue. When they first started a month ago they were literally every 3-5 seconds of so during waking hours....so thousands per day. She was on Amoxicillin for about 3 weeks with some initlal improvement. Her tics got much less spastic and severe in nature, but were still about every 10-15 seconds. However, she seemed to plateau after the 1st week with the Amox.

 

Upon Dr. T's recommendation we switched her to Biaxin this past Monday. Aside from daily complaints of headaches, which I think may be related to the Biaxin, she seemed to improve a bit on Tuesday & Wednesday. Her 1 vocal tic was still fairly constant, but very quiet and her motor tics were so subtle they were hard to notice to be able to time. Then we made the "mistake" of bringing her to get her ears pierced. (She's been begging to get them pierced for months.) All was well until they took out the thing that shoots the earrings through your ear. She got super nervous and literally started ticcing like crazy in the chair. She couldn't go through with it, and to make matters worse she got very mad at herself for being to scared to do it. The day went downhill from there. Her tics remained strong in severity and picked up to every few seconds. In addition to that she probably asked 40 times if we could go back another day...to which we said "absolutely. when you feel like you want to do it, we will go back." That would hold her for a few minutes, and then she'd ask again!!!

 

By this morning her tics were slightly calmer, but still worse than before the whole earring fiasco. The motor tics are calming but the vocal (throat clearing) one is constant. During her bedtime story it was every second.

 

I guess my question is, would a stressful situation really cause tics to increase that much if the antibiotic is actually working? Am I just expecting too much too soon from the antibiotic?

 

I'm just so terrified that we're not going to find a solution for her. It's heartbreaking to see her so out of control with her body. Any feedback from those of you who have been through this would be greatly appreciated.

 

Thanks!

[T_Mom]

Hi Worried Mom--

 

I want to add--that after 3 months of Amoxicillan (full strength) my older d was back to about 85% herself.

 

However, she was still have difficulty with school, attention, and mild OCD (and mild ticcing.)

When we observed her plateauing for about 4 weeks straight ( with no evident weekly progress) we tried a strong steroid burst.

 

The steroids had such a dramatic positive effect that her teacher called us that week saying that she was "seeing" the child we had been telling her about for the very first time--(this was April in the school year.) Prior to the addition of the steroids the teacher had been using her own OCD checklist to record our d's behaviors! The obvious behaviors included: putting her coat on and off multiple times, turning around multiple times before sitting down, circling the room or desks, writing and rewriting, etc. etc.

 

Thank heavens for steroids! We have used them twice with our d in the course of the 2 years.

She continues on full strength Amoxicillan--over a year now.

[kimballot]

Sounds like you've been seeing progress overall but how sad that you had a disappointing outcome to what should have been a positive event. That does happen and it has seemed to happen a bit more with my DS when he was on biaxin (this was before we knew for sure he had PANDAS - whenever he was on Biaxin for sinusitis we we would see some unusual behaviors - doctors could never tell me why). The setbacks were always temporary for us and the overall improvement from Biaxin was worth the sawtooth.

 

I like the way you handled it by telling her she could do it again when she is ready. Sounds like you are very supportive. Are you using ibuprofen as well? It may help to take the edge off.

[MomWithOCDSon]

Hi Worried Mom--

You ask a good question--and I wish I knew the answer. Our experience has been that, while healing (over the course of a year), our d's symptoms would rise slightly if she was overly tired or stressed (especially with schoolwork.) I think the body gets taxed and can trigger reactions--

 

In our case, that did not negate the ongoing, overall, positive effects of the full-on antibiotics. Is it a full dose of Biaxin (as in full strength for her weight?) Is it ongoing--at least a month or more?

 

Given time, time, and more time our d did improve week to week once we started long-term antibiotics.

It has been a good thing--I hope the same for you.

We've had exactly the same experience, so Worried Mom, don't get too discouraged. If you keep tracking the behaviors over the long term, I believe you'll see a pattern emerging where the setbacks/meltdowns become less and less frequent, and even when they happen in the face of fatique or stress, your daughter will be able to recover more quickly. Hang in there, and give it a full chance. If, after another few weeks, you truly cannot see a continuation of overall improvement, then it might be time to try another treatment.

[worriedmommy]

Thanks for your responses. We used Motrin Tue & Wed because of the headaches, but didn't today even though she apparently had a headache this morning when she arrived at school. I'll start the day tomorrow with some Motrin to ward off the headache. Is there additional benefit from the Motrin? I've read a little about inflamation being an issue with PANDAS, but am not sure what the connection is.

 

I will stick with the Biaxin for now. I know that time is often the best medicine... As I'm sure you can all relate...waiting just to know "IF" something is going to work is torture!

 

One last question. We give her Culturelle probiotic, but have been giving her this at the same time as her antibiotic. I read on another posting that it should be given 2-3 hours after the antibotic. Is this true? If so, do you know why?

[peglem]

Thanks for your responses. We used Motrin Tue & Wed because of the headaches, but didn't today even though she apparently had a headache this morning when she arrived at school. I'll start the day tomorrow with some Motrin to ward off the headache. Is there additional benefit from the Motrin? I've read a little about inflamation being an issue with PANDAS, but am not sure what the connection is.

 

I will stick with the Biaxin for now. I know that time is often the best medicine... As I'm sure you can all relate...waiting just to know "IF" something is going to work is torture!

 

One last question. We give her Culturelle probiotic, but have been giving her this at the same time as her antibiotic. I read on another posting that it should be given 2-3 hours after the antibotic. Is this true? If so, do you know why?

The reason for waiting 2-3 hours to give probiotic is because the probiotic (usually) is live bacteria and abx kills it. So waiting for the abx to get absorbed from the intestines then allows the good bacteria to repopulate the gut. I say usually live bacteria, because boulardii is a yeast probiotic (I believe there is some in culturelle?) and it is not killed by abx, but you have to give it (boulardii) separate from antifungals.

[kimballot]

Thanks for your responses. We used Motrin Tue & Wed because of the headaches, but didn't today even though she apparently had a headache this morning when she arrived at school. I'll start the day tomorrow with some Motrin to ward off the headache. Is there additional benefit from the Motrin? I've read a little about inflamation being an issue with PANDAS, but am not sure what the connection is.

 

I will stick with the Biaxin for now. I know that time is often the best medicine... As I'm sure you can all relate...waiting just to know "IF" something is going to work is torture!

 

One last question. We give her Culturelle probiotic, but have been giving her this at the same time as her antibiotic. I read on another posting that it should be given 2-3 hours after the antibotic. Is this true? If so, do you know why?

 

Ibuprofen does have some anti inflammatory properties and some people have found them beneficial with PANDAS flair ups in general and also to take the edge off biaxin reactions. I juste learned about this recently from reading posts, but have been using ibuprofen 2x a day with my DS since he had a cold last week and I must say that I have not gotten any bad reports from school (which I would usually get)... so I am thinking it is helping.

[thereishope]

When my son was very early on in recovery, we did a 5 hour drive to Chicago for a bday party. I was hesitant to go, but we did. It involved the drive and staying overnight at someone's house. Boy, did that stress send him over the edge. It took a couple days for him to get over it. So, yes, stress can make things worse, esp when they are early in recovery.

 

 

This disorder is so cruel. it takes our kids in a heartbeat and we have to spend months (for some, years) getting them back.

[thereishope]

About Ibuprofen (IB), it's like a band aid. For some, it eases the PANDAS. However, if your child does not get improvement from IB, it does not rule out PANDAS. When my son was recovering from a strep triggered exacerbation, IB didn't work. But it does work for other triggers, like viral. For him, it took 1/2 hour to kick in and strated wearing off at the 5 hour mark. It is recommended by doctors that if you are taking a steroid, not to take IB at the same time. It can take a toll on the stomach.

 

If Ibuprofen works, continue to look for the root cause of the problems. It is just a temp band aid. IB does not replace antibiotics.

[kcdc3]

Yes - my dd's tics increase with stress and I'm certain that the Biaxin we are on is working. Don't know how to explain that, but that is what happens. They also increase with lack of sleep. When she does not get enough sleep, the setback can last 2 - 3 days. But since being on Biaxin, we have consistently seen her go back up after a few days. Even if she is running late in the mornings (just about every morning) she will tic more in the car on the way to school, but by the time I pick her up, I'm not hearing them anymore. Before Biaxin, I was hearing them all day, all the time. We have been on Biaxin now for about 20 days, but had Zith for about 45 days prior.

[Megs_Mom]

Her tics remained strong in severity and picked up to every few seconds. In addition to that she probably asked 40 times if we could go back another day...to which we said "absolutely. when you feel like you want to do it, we will go back." That would hold her for a few minutes, and then she'd ask again!!!

 

For those here that may not have a lot of experience yet in identifing OCD, this is a very good example of "compulsive reassurance seeking". We did not realize that this was OCD for a long time. This is a very common manifestation of OCD in children. Here are some more examples that parents from this site helped to put together: http://www.latitudes.org/forums/index.php?...amp;#entry47369.