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Clindamycin done, on to Rifampin, I hope it is finally our winner


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Well, after multiple courses of antibiotics fail to control the PANDAS/strep, we went to clindmaycin for 3 weeks.....I would say about 8 days in as usual we started to see slight breakthrough symptoms. Then about 14 days on clindamycin, I saw the eye squinting and the verbal triggers come back but atleast the verbal triggers were easily worked through....with no tears. Now we took the last clindamycin pill today. His lips are again irritated(I have come to view that as indicator of his body fighting PANDAS) and he had several tearful upsets for triggers words so far this morning and his choreiform movements have returned.

 

I am beside myself. We are to go on to Rifampin now for 2 weeks. I hope that works because Clindamycin was supposed to be the "bomb".

 

We are waiting on IVIG approval and tonsillectomy.

 

Like I said, I am just beside myself having rode a rollercoaster again.

 

I talked to a Lyme doctor the other day who knows PANDAS too and he thought a good treatment for PANDAS was Augmentin daily and then Bacillin shots either weekly or monthly.

 

Big deep breath. I know there is not much anyone can say but just keep plugging along. I think once the two weeks of Rifampin are over, I will ask to go back on Augmentin daily until tonsils out and IVIG.

 

Kim

Edited by Kimflow
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Hey Kim- Sorry things are not going well.

 

I will just give you my 2cents FWIW-

 

I have two pandas girls. For us the KEY to getting them well, and keeping them there has been immune modulation, and not antibiotics.

 

We use antibiotics briefly for illness or flare up to clear infection- but what clears the pandas is something that halts the autoimmunity. We have used pex, but most frequently use steroids.

 

Have you tried steroids? It could be the infection is gone, but the autoimminity continues.

 

My kids end up needing about 2 to 3 steroid bursts per year. This keeps them at 95%, 95% of the time.

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dcmom, I know you have probably posted this many times but my mind is slipping....Did your girls have any movement issues? When you start the steroids, do they have immediate improvements or is there a worsening period like so many other people report?

 

I have never considered steroids because of my daughters tics but I keep reading about how much it helps your girls so I thought I would start asking some questions.

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You know, I'm starting to feel this is not going to be maintained by abx with us as well. We are now starting Omnicef today -- Zith and Augmentin worked for a bit, but Augmentin is bothering my son's stomach and he has elevated strep titers again, even ASO this time. Dog has strep. Husband has ASO on border at 200 -- everyone has strep - it's really pissing me off. I am extremely nervous about prospect of IVIG - as our family will truly not survive if things get worse with my son and I am Lyme + -- so I suspect he is, too...which makes it more nerve wracking -- but I'm still starting to think we may miss the boat if we don't try it soon since he's already 14.

 

Kimflow, I feel you. I feel like we are riding this together - gains for a few weeks and then failure to respond and strep popping up all over the place.

 

For us steroids were a crying emotional nightmare for the 5 days he was one them ---- but my son was literally an ANGEL for the 10 days that followed. Happy, laughing, helpful, doing school work, even catching up on all assignments missed. Asking me how my day was, offering to ride his bike to get me coffee...I mean a REAL sweet, loveable, nice kid. The kid he used to be. Sadly, it didn't last long.

Edited by fightingmom
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dcmom, I know you have probably posted this many times but my mind is slipping....Did your girls have any movement issues? When you start the steroids, do they have immediate improvements or is there a worsening period like so many other people report?

 

I have never considered steroids because of my daughters tics but I keep reading about how much it helps your girls so I thought I would start asking some questions.

You did not ask me, but my daughters' tics & chorea-like movement (different daughters) were helped immensely by pex.

 

My younger child's (different than the 2 who had pex) vocal tics improved (and the effect last twice for 5-6 months) after steroids for a month. The tics returned (along with psych symptoms) after several months. She just did her third steroid month. tics are much better- still present but hardly noticeable. They DID get worse this time at about week 2. Much better now.

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Well, update as things around here change literally every couple hours.....

good news that the IVIG was approved for diagnosis of syndenhams chorea....they looked at medical records too that also said PANDAS.

 

I think I am leaning towards getting the tonsilletomy done next week as maybe it will remove the persistent source of strep. Not the orginal plan for sure. It was supposed to IVIG then tonsillectomy while IVIG on board.

 

Then we can recover, have our vacation and do IVIG after vacation.

 

I refuse to take away our only vacation as it is a time when my son really enjoys himself and our family too actually gets a sort of break. Remember we too are dealing with autism. At the ocean, a few weekends ago, he seemed to escape the PANDAS while he was on the ocean. he also escapes the autism on teh ocean too.....no talking required, just ride the waves. Loves the water.

 

I dont' know if this is the right decison or not as I am risking a PANDAS flare by taking out tonsils before having IVIG on board.?????

 

And yes, I agree, it does all come down to immune system. When I see Dr. L today, I am going to ask her which she prefers me to start first...immunovir or xymogen. I have to do more than just probiotics and what else I am already doing about immunomodulation.

 

Finally....steroids.....I am loathe to ahve to go to them. I worry that we still are determining whether the 2 bands positive for lyme are really lyme. Of course, he is going to get steroids for the IVIG....Lyme doc. said that is just something we have to do.

 

So what do you think? Am I crazy for doing the tonsillectomy before IVIG and our vacation. I'll see what Dr. L says this afternoon.

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they are doing steroids for the IVIG- i think it is a great idea (did it for one of more girls) but I did not know they were doing it much now.

 

 

AWESOME news on the IVIG approval, kimflow!

So SO happy to hear it!

Edited by PowPow
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I don't think you are crazy. I think you need to do what works for your family. I also think that none of us know our kids and our family better than we do.

We are all on wild ride trying to decide the next course of action and it's an emotional roller coaster.

 

Steroids scare me with lyme in the picture. I've been on them several times this year and it may be why my explosion of symptoms recently. Who knows? That's the sucky part, we really don't know -- with any of it.

 

congratulations on your approval. I hope it really helps. I really do.

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Kimflow,

you are not crazy for doing tonsillectomy before IVIG. This is the way I did it. To me, if the tonsils are infected (as my ds's were for pseudomonas) then the ivig will not work, as the infection will continually trigger the autoantibodies to attack the brain (even though not strep infection). My friend did it the other way, ivig first, saw big improvement at 8weeks, however slid backwards again until she realized the kid had a sinus infection, did surgery to clean out sinus and T & A which were also infected with pseudomanas and then kid returned to 100% and remains there now since Dec! So enjoy your vacation!!

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2 of my PANDAS kids had tonsillectomies (one pre pandas- one after onset)

The "after-onset" surgery seem to make no difference, tonsils cultured clear for strep, lyme and something else.

IVIG was over a year post all that!

You are not crazy at all!

get those sick tonsils out and then move on to PANDAS stuff. That is my opinion!

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