Antibiotics until when...?

[Lydiasmum]

Hi all,

DD is doing rather well on abx (erythromycin prophylaxis) and has been taking for 5 months now. When I requested them from paediatrician he did not have an issue and agreed to monitor her, with a view to taking six weeks at a time. I initially asked him to treat as Sydenham's Chorea as DD got the whole strep and rash episodes several times prior to major overnight onset which was mainly motor/vocal tics with chorea and dystonic movements in the mix. Mild OCD factored in but it was the lack of body control and huge fears that turned our lives upside down. We have seen 3 mini flares in the 15 months since first onset (the most minor one just after starting abx). The only lingering symptoms are separation anxiety and excessive worrying, but on the whole school is going well and we are having happier family times.

 

How will I know when to stop abx? The paediatrician has limited knowledge of PANDAS but he is listening to us (bless him). I have read some horror stories about PANDAS kids who have suffered a major relapse that never reverted back to previous baseline, despite reintroduction of abx following a remission break. To date, DD seems to be tolerating OK with no stomach issues or signs of yeast (long may the good run last!). I am scared to stop them but scared to keep requesting them indefinitely...

 

 

[qannie47]

I know what you mean. I myself have thought about stopping the abx. For my ds, I have not seen it stop flares from exposure or simple infections. That being said, I do know that it the abx does keep the immune system from going out of wack and also has an anti-inflammatory effect. All the experts do seem to want our kids to remain on the abx even though they are doing well for several years. So I guess because of their expertise, I will keep my ds on the abx as recommended.

[Hopeny]

Maybe keep on for the school year? My little one non pans was out on zith prophylaxis by a major children's hospital because she has an immune issue. We discussed doing so suring the fall/winter. We have been trying to taper off my pandas dd to a prophylactic dose of zith but she just got a sinus infection/walking pneumonia and the ped put her on augmentin. Her strep titers have skyrocketed since stopping one of out combo meds so I am at a loss on that front. My kids both have immune complement disorders so that remains an underlying issue. I was comforted a bit by the fact that the major children's hospital didn't hesitate to use abx prophylaxis as a treatment options so had planned to keep pans DD on for the school year.

[pr40]

we are on abx for a year and a half. we are also thinking of stopping abx. now, most posts I read on this forum that refer to the ammount of time on abx have about 2 years. some are longer and some much longer than that. in case of heart problems caused by strep, profilaxis goes until 18 years of age or so.

we will ask this question when we see new pandas specialst at MGH later this month. I can report what he says.

rule of thumb i once heard is three months without exacerbations.

Edited January 11, 2014 by pr40

[nicklemama]

This is the $64,000 question. We are three years in and no where near ready to stop abx.

[Mommy2MCL]

I don't know the answers either as we are only in our 2nd month of treatment. But your story reminds me so much of our story.

[JoyBop]

I think there is no standard answer. Each child responds differently. Our pandas docs at MGH have switched my kids from high dose abx to lower doses when well and upped them back when flares continually occur. It's an art. I have asked the question myself many times and the answer I am left with is when my children are symptom free for many months we will try to taper down. You will know when its right and you will also know if you've made a mistake. But most significant cases around here seem to be on abx for several years.