the question I'm even affraid to ask

[croatian mum]

As some of You know; my ds12 has severe; disturbing loud vocal tics for the last 6 years;(the diagnosys in our country was TS - but, they have never even heard about PANDAS - so..)

 

He screams very loud every 2 seconds.

 

Got PANDAS diagnosys only 8 month ago. Since than we have done IVIG (worked well for 6 month); and been on ABX since than.

 

Abx have been helpfull in 4 exerbations untill this last exerbation which started 16 days ago. Now they are not helping at all, and by the dr. K's advice - we are giving him 2x 1000 mg daily for he last 8 days; and he is soposed to take a dose so high for 14 days. If this wont help than we should give him Prednisone.

 

So, the 1.st queston is: is it posssible that the abx are not working any more?

 

And; the question I'm really affraid to ask - Dr. K. told us if abx are not helping to give him Prednosone for 5 days.

 

From what I'we read here; if steroids aren't helping than is very possible that a child even hasen't got Pandas but TS.

 

Is it really so?? Is it true that steroids are the best ''test'' for pandas?

 

I'm even affraid to give him steroids because his condition is severe (Tics; OCD; ADD; ADHD; anxiety; mood irritability; anger; rage ecc.); so this will sound awful but as long as we think he has pandas we hope that one day something will change to better..

 

Hope to hear from You..

(again my apologies for my grammar mistakes)

[LNN]

Having been at this for 4 years, I no longer think his reaction to prednisone can rule out Pandas nor can it confirm it. It is a tool to manage symptoms, in my opinion, not a tool for diagnosis.

 

Let's say your son has Pandas or Pans. Let's say his infection is not vulnerable to augmentin (let's say it's a virus or a bacteria like Lyme than can be resistant to a mono-therapy antibiotic). So you give prednisone and because the infection is still there, it's still fueling inflammation. Either the inflammation is too great for 5 days of prednisone to do much or you have other sources of inflammation like mold, or some other factors are at play. A poor response to prednisone means it wasn't an effective tool. It doesn't mean, in my opinion, that the neurological problems aren't the result of PANS or Pandas.

 

On the flip side, be aware that prednisone can worsen tic symptoms in those without an autoimmune source of tics. So it requires some consideration and you should be comfortable that Dr K is fully aware of your son's history and any concerns you may have before moving forward. (not saying not to go ahead - only to be comfortable with it first).

 

I'll throw out one other consideration. My son has had wonderful responses to prednisone and other times it's done nothing for him. It has generally been very helpful for OCD but tics have taken much longer to subside and they did not go away because of prednisone. They went away as his body was able to clean out infection and the toxins the dying bacteria released. So for him, a focus on detox has been extremely helpful. He takes B6, which helps the body make glutathione - the mother of all detox. He takes milk thistle for his liver. He takes additional supplements during flares. If you have concerns about prednisone, you may be able to discuss IV Glutathione with Dr K as an alternative.

 

But if your only concern is that your hopes will be dashed, I'd set those aside. I don't think a poor response to prednisone is a rule-out.

[croatian mum]

Thank You LLM,

 

but in this part You said:

 

''On the flip side, be aware that prednisone can worsen tic symptoms in those without an autoimmune source of tics.''

 

If so, dosen't it mean that he than hasen't got any autoimmune problems and that this can rule out pandas?

Sorry if I ask too much, but this is really bothering us a lot.

 

 

We will definitly go for steroids if we will see that augmentin is not helping, but we still need to wait for few days.

 

It is all so very confused; with mixed signals, but the thing You said about the infection seems very logic to me..Hope we will figh it this time also.

 

Thank You for Your answer

[oivay]

Antibiotics and prednisone worked well for us the first 2 or 3 times, the 4th time it helped, but didn't have anywhere near the effect as the first few times.

 

The way it was explained to me was that antibiotics and steroids work really well for Pandas, until they don't. Which is exactly what happened with us.

At that point, we did PEX, which was tremendously helpful.

[T_Mom]

As some of You know; my ds12 has severe; disturbing loud vocal tics for the last 6 years...

 

He screams very loud every 2 seconds.

 

Got PANDAS diagnosys ... we have done IVIG (worked well for 6 month); and been on ABX since than.

 

Abx have been helpfull in 4 exerbations untill this last exerbation which started 16 days ago. Now they are not helping at all, and by the dr. K's advice - we are giving him 2x 1000 mg daily for he last 8 days; and he is soposed to take a dose so high for 14 days. If this wont help than we should give him Prednisone.

 

So, the 1.st queston is: is it posssible that the abx are not working any more?

 

And; the question I'm really affraid to ask - Dr. K. told us if abx are not helping to give him Prednosone for 5 days.

 

From what I'we read here; if steroids aren't helping than is very possible that a child even hasen't got Pandas but TS.

 

Is it really so?? Is it true that steroids are the best ''test'' for pandas?

 

 

 

I notice you say that he has been on abx since the IVIG, and that now with the exacerbation that just started two weeks ago you have him on the Saving Sammy dose of Augmentin, correct?

Just some quick thoughts, (which may not be worthwhile.)

 

If this is a change in abx type perhaps the previous abx was more effective?

 

Are you using Augmentin XR 1000 mg, which stands for eXtended Release, and is a time-released dosage, which many of us found more effective then the smaller, lesser pills of Augmentin (still 1000 mg two times a day either way, but some have said the XR was more effective...) and it has a safer dose of clavunate acid (sp?) which is the activator in this pill.

 

If Prednisone helped before it is likely you will see an improvement -- in our experience, it may not be as much as the first time you used it, but each child is different.

 

You asked if it was true if prednisone was the "best" test for PANDAS. I would say that responding to an immune modulating anti-inflammatory is the best test, and you have had that it appears. IVIG is such a treatment and if you saw an improvement in his severe symptoms with IVIG, well, can you do it again???

 

I have not heard the idea that if prednisone does not help then it may not be PANDAS -- I think there have definitely been cases where many of us have had positive bloodwork, and still prednisone may not help, or may appear to make things worse for awhile.

 

I hope you are able to find the right help for him now --

[croatian mum]

Dear Tmom,

 

 

we have never had steroids before; maybe I wrote something fals (my english is not that good so its hard to express everything as I want).

 

we only had IVIG; and he was abx since than. He was on 500 mg of Augmentin for the last 6 month; and was so untill 8 days ago. Than we gave him Augmentin 1000 x 2 times a day; but NOT XR.

 

I think we are starting to see some small improvement; he is not doing great; but now he is able to say some words normaly - whiteout the scream in each word, so, it is a small change but big for us

 

Hope he will continue to get better each day.

 

Will let You know

[T_Mom]

Hi Croatian Mum--

if you are using Augmentin at 1000 mg, x 2 a day I suggest you definitely ask to switch to Augmentin XR as the clauvunate acid (sp?) will otherwise be above the recommended dose! Google the CA issue online. You will notice if you search on this topic on this forum parents have found (some say!) that XR -- extended release to be more beneficial! -- again, it may be the amount of the "activator" clavunate acid--just a suggestion.

 

How much does he weigh? It is remarkable that you are seeing a difference in that he is "able to say some words normally" !!! THAT is wonderful news -- and definitely you are doing something right here! Keep it up, healing takes TIME and can seem painfully slow...but the trend, the trend should be encouraging to you!

[Agnes26]

We also did IVIG and DD did great for the first few weeks after the procedure until her Augmentin was dropped down to the prophylactic dose. We lost A LOT of ground. Another doctor prescribed the max dose of Augmentin ES (basically the Saving Sammy dose for her weight), and she's been doing well on it. She's been on that for @ six months.