Daily antibiotics for life? Or for a REALLLLLLY long time?

[FallingApart]

I haven't been on the boards in a really long time. We have been doing monthly IVIG for DD and trying to rid our other DD of being the strep carrier. This is a nightmare, but one that we are managing...somehow.

 

We just got discharged from the hospital from one of our monthly IVIGs and DD seemed to get worse while we were IN the hospital. DH and I were flabbergasted and couldn't figure out why. We had everyone in the house tested for strep - especially our strep carrier other DD. All were negative. It never even crossed our minds that our PANDAS child herself was the one with strep, but now I'm recalling a few things that tell me our PANDAS daughter actually had symptomatic strep. In all this time (18 months of PANDAS ######) she has never had symptomatic strep. But I believe she did this time. She got the strep on one of the days that she wasn't actually on augmentin for being exposed to strep from her strep carrier sister.

 

It seems that we can put DD on Augmentin and it will clear up the PANDAS symptoms. But she goes off after the course is finished and then gets her symptoms again right away - within a week.

 

What does anyone know about taking the appropriate antibiotic daily forever or for a really long time? I'm concerned about getting resistant to it. I'm concerned about that both taking it every day forever as well as stopping it after a course and starting again 1 week later.

 

What is everyone else doing.

 

In case anyone is wondering why we can't get rid of the carrier state in our other DD it is because she just turned 3 and can't swallow much other than ibuprofen without gagging and vomitting. We've been to the ped for every medicine we have tried and she gags and vomits every time. It seems that until we can get her to swallow Clindamyacin pills, we are in a bit of a fix here....

[airial95]

We've been on constant daily doses of abx for 4 months now with great results. He flares when exposed to strep, but it usually lasts only 3 days or so. He's on a low dose that the dr will increase during exposure. Our dr is less concerned with resistance than with the intestinal side effects so we have bi-weekly phone/email updates and sees us as needed.

 

We haven't had to go IVIG or anything more drastic yet, but our dr has indicated that his abx treatment will be long term, several months at least.

 

Not sure if this helps, but hopefully you'll find something that helps.

[poetmom]

For my son, who was diagnosed in 2007, Augmentin was the key. In the end, he was on it for at least 6 wks, but it may have been 8. We were waiting to get in to see the specialist and our ped took a shot in the dark based on how his PANDAS symptoms (not yet named then) responded to Augmentin throughout various ear infections. Important to note, he used several antibiotics during the ear infections (9 of them) but it was the Augmentin that had an impact on the OCD, mood swings, tics, etc.

 

Once the worst of his PANDAS was past and he quit getting the ear infections, the specialist (infectious disease) put him on simple Penicillin VK - 250mg/5ml 2x day.

It has taken a long time to get to where he is now - which is quite unremarkable...meaning, the average person can't tell there was ever anything wrong with him unless you knew him before or know specifically what small remnants to look for.

 

At any rate, we went for his 6mos check up yesterday. We discussed the risk of a future strep infection in the frame of his two small flair ups this year (one caused by an ear infection; one caused by his sister being strep positive) and we determined he will be on Penicillin VK likely until he is 18. I can debate the fear of resistance, break through infections, possible side effects, etc... but at the end of the day, this seems to be working. I'm not going to change something that's working until it's broken or try to predict the future. I have enough to worry about today making sure he just doesn't get strep again!!

I don't think I'd have agreed to putting him on Augmentin though. As I understand it, in strength the order goes: Penc VK, Amox, Augmentin... I have to have places to go if this doesn't work.

Hope that makes sense and helps.

 

Does your 3yo still have her tonsils? I was a carrier years ago until I had mine removed...

[peglem]

My daughter is on 500mg zith every other day. I have no plans of stopping that anytime soon. If she was to remit for say a year, maybe 2, I might consider it! She was a strep carrier, maybe still is, or is again. I don't know. In december we did a treatment to try to clear carrier state- rifampin/aug combo. We went on the current zith dose immediately afterwards, w/o checking if she was cleared or not. Her pediatrician thinks that with her weak immune system and strep being so prevalent in the environment, there is no way to eradicate strep in her. But that december treatment got us 3 really great months. She went downhill again after 2 low dose IVIG treatments. She just finished her 1st PANDAS sized dose and we're looking at redoing the rifampin/aug when we see her doc on Monday. I used to worry about keeping her on abx for so long...but she really doesn't do so well without, so for now we plan to keep her on.

[poetmom]

>>>It seems that we can put DD on Augmentin and it will clear up the PANDAS symptoms. But she goes off after the course is finished and then gets her symptoms again right away - within a week.<<<

 

Just curious...how long is a the course she's on? With my son, he was on 10 days with each ear infection and showed marked improvement in the PANDAS symptoms, but the day after he went off...it was back to the same old thing. It wasn't until he was on the full strength abx that he seemed to be able to come down to the lower dose, weaker abx we now use prophylatically.

 

For the record - he was off abx for several months, but is back on the abx despite clearly being in remission because doc and I agreed the risk of reinfection and the possible ramifications was too high... prevention, prevention, prevention is my new mantra...

[T_Mom]

Our oldest d (the more severe Pandas experience) has been on full strength Amoxicillan for over a year. Doing well--very well.

I want to point out that it took 10-12 months for her to get back to herself again...all the while on full strength abx. and she had 2 steroid bursts along the way--It took TIME, we also give probiotics, vit C (1000mg), vit D (1000mg), multi vit., Omega 3's (1000mg) and try to eat "real foods, fresh fruits, veggies, lean meats, etc." also lots of rest and sleep--avoid all stressors as much as possible as healing takes time and energy--

 

Second child, Augmentin XR for about 6 months now, Saving Sammy dose of 1000mg of Augmentin XR twice a day. No more OCD, though slight flares of anger and upsetness when others are ill around her. We will continue with abx until it is no longer needed.

 

Neither child has had any difficulty thus far as a result of the antibiotics, thankfully--on the contrary, life for ALL has improved:)

 

Like Poetmom's note above, I would agree that possible prevention is good-- More importantly, I believe that abx are having a direct "treatment" effect though-- anti-inflammatory immunomodulating effects which quell the OCD/ticcing reaction in PANDAS. Thus, the timeline for treatment will only be determined by the treatment effects over time.

 

Hope that helps. We decided it was certainly benign to try long term (month or more) abx compared to the life altering experiences the kids were having--it has worked.

Edited May 15, 2010 by T.Mom

[FallingApart]

TMom, so you have on child who has been on Augmentin for 6 straight months? What is the plan for that child?

 

We have tried several other abx for our PANDAS DD and saw zero improvement. i'm starting to feel like I want to keep her on Augmentin indefinitely. I agree with the previous posters about remission, taking care of the gut, and whole foods. We were and are doing so well in that area.

 

For our strep carrier daughter-she isn't getting oral strep-it's constant rectal strep. Would tonsil removal still help with that? I would think not.

 

I'm thinking that our ped hasn't put her on daily augmentin indefinitely for the exact reson that was stated:you need somewhere to go if you get another infection. But, is it a risk we are willing to take? Can anyone answer that? That is why I want to know your plan, T.Mom. I am starting to think that perhaps it is a risk I am willing to take.

 

I am so sick of this crap and my anxiety level, which may have fallen only slightly from PTSD, is now through the roof again! To see your child get worse while the IV is hooked up to her and she is receiving IV antibiotics and IVIG is absolutely terrifying! I know that you all understand!!!

 

Thank you for all your answers. I'd love to hear more!

[T_Mom]

F.A.-- Good questions all-- I ask them daily myself:)

 

The best I can say is that our "plan" evolves according to response to treatment over time.

 

The symptoms of our children were serious to the point of making them non-functional. Abx and steroids have helped tremendously.

 

To us, very benign given what we had gone through--You have already gotten to IVIG, I know you understand--I hope you see good results soon--

[matis_mom]

TMom, so you have on child who has been on Augmentin for 6 straight months? What is the plan for that child?

 

We have tried several other abx for our PANDAS DD and saw zero improvement. i'm starting to feel like I want to keep her on Augmentin indefinitely. I agree with the previous posters about remission, taking care of the gut, and whole foods. We were and are doing so well in that area.

 

For our strep carrier daughter-she isn't getting oral strep-it's constant rectal strep. Would tonsil removal still help with that? I would think not.

 

I'm thinking that our ped hasn't put her on daily augmentin indefinitely for the exact reson that was stated:you need somewhere to go if you get another infection. But, is it a risk we are willing to take? Can anyone answer that? That is why I want to know your plan, T.Mom. I am starting to think that perhaps it is a risk I am willing to take.

 

I am so sick of this crap and my anxiety level, which may have fallen only slightly from PTSD, is now through the roof again! To see your child get worse while the IV is hooked up to her and she is receiving IV antibiotics and IVIG is absolutely terrifying! I know that you all understand!!!

 

Thank you for all your answers. I'd love to hear more!

Falling Apart,

My son has been on Augmentin for a while. Even with that, he got an ear infection while his siblings had strep (it could have been strep or staph, who knows). Our pediatrician added 10 days of Rifampin, and it cleared. I know Augmentin is strong, and we tried to switch him to Zithromax, but the very next day he seemed to start sliding back, so we are back on it as it is what seems to work best.

As for your carrier, I would go ahead and remove the tonsils. The way our doc explained it is that they can act as a road-block for the antibiotic. If the tonsils are "taken" with strep, the antibiotic can't really get to the rest of the body. So yes, even if the strep is not in the throat (my son's was in his gut), I would go ahead and take them out. Our doctor said they had patients on abxs for months and months and they would not see progress until those tonsils came out.

So, if I were you I would do the tonsillectomy, see if that helps, and then maybe try Rifampin (I understand it needs to be taken along with another antibiotic) as well.

[poetmom]

FallingApart - I don't think I clarified well ... my ds is on penicillin vk for prevention. He was put on this after more than a month (I'm going to have to pull his records and determine exactly how many weeks ... but at least 6) of Augmentin.

By the time we stopped giving him the Augmentin, it was clear the symptoms, which had been steadily and ever-rapidly getting worse, were not only no longer getting worse but beginning to VERY slowly subside. (Constant fever was gone, insomnia subsided, mood swings were better, OCD was calmer, tics were milder.) As he did not get WORSE again taking him off, we moved to prevention.

 

Yes, it was a LONG road to back up - 2 1/2 years.

 

I think the goal in the beginning was always to regain some control and reach a plateau where we felt like he wasn't consistently moving backward.

So while I say I wouldn't want him on Augmentin for prevention...if I felt it was needed long term to irradicate the cause of the symptoms, that is for treatment, I would keep him on it as long as necessary (and add whatever seemed reasonable) until he quit reacting to being taken off of it. I say this because it seems to me if we're treating him and he's reacting to being taken off treatment, we simply haven't finished treating yet and should stick with what works and not rush things. Others may have different experiences and opinions.

 

This is my Plan A:

Step 1: Treat/get rid of the &%#@ strep (or whatever the cause is lyme, ear infection, allergy)!!

Step 2: Stabilize PANDAS symptoms

Step 3: Determine treatment plan that will maintain stabilization and avoid reinfection allowing the child to heal

All easier said than done, but it seems for now it's all I've got.

 

I hope that makes better sense.

Don't ask me what Plan B is. I really don't have one!!

Edited May 15, 2010 by poetmom

[bgbarnes]

Mati's Mom- how did you find out your ds strep was in his gut- I suspect that is where my son's is and I don't know how to prove it.

Thanks

Brandy

[FallingApart]

Good question! What other locations could it be in?

[Kaki]

I haven't been on the boards in a really long time. We have been doing monthly IVIG for DD and trying to rid our other DD of being the strep carrier. This is a nightmare, but one that we are managing...somehow.

 

We just got discharged from the hospital from one of our monthly IVIGs and DD seemed to get worse while we were IN the hospital. DH and I were flabbergasted and couldn't figure out why. We had everyone in the house tested for strep - especially our strep carrier other DD. All were negative. It never even crossed our minds that our PANDAS child herself was the one with strep, but now I'm recalling a few things that tell me our PANDAS daughter actually had symptomatic strep. In all this time (18 months of PANDAS ######) she has never had symptomatic strep. But I believe she did this time. She got the strep on one of the days that she wasn't actually on augmentin for being exposed to strep from her strep carrier sister.

 

It seems that we can put DD on Augmentin and it will clear up the PANDAS symptoms. But she goes off after the course is finished and then gets her symptoms again right away - within a week.

 

What does anyone know about taking the appropriate antibiotic daily forever or for a really long time? I'm concerned about getting resistant to it. I'm concerned about that both taking it every day forever as well as stopping it after a course and starting again 1 week later.

 

What is everyone else doing.

 

In case anyone is wondering why we can't get rid of the carrier state in our other DD it is because she just turned 3 and can't swallow much other than ibuprofen without gagging and vomitting. We've been to the ped for every medicine we have tried and she gags and vomits every time. It seems that until we can get her to swallow Clindamyacin pills, we are in a bit of a fix here....

 

 

In response to antibiotic resistance, what I was told is that an individual does not become resistant. It's the bug that becomes resistant in a population. My 8 yo had to take daily antibiotics for 5 years for bladder reflux. At one point, one antibiotic stopped working, and she had to switch. The antibiotic didn't just stop working for her. It stopped working for many kids with this same problem. The bug evolved. Like someone already posted, the big concern is the impact that the antibiotic can have on the good bacteria. Probiotics help.

 

Sorry she's having trouble swallowing the meds. I think there is a lot of info online on how to get your kids to take meds. But honestly, nothing seemed to work for us. I remember having to hold my little one down. She would pitch an absolute fit! She got used to it after awhile and took it without any problem. So, just hang it there.

 

Carol