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Hello to everyone.

 

I've been away for a long time because each time I read posts I am terrified that all of your situations are going to happen to our family so I had to take a break. But I am back now because I don't know where to turn.

 

In a nutshell, DD4 has had a constant PANDAS exacerbation for almost 2 years. We have been doing IVIG monthly for the past year. We did PEX and it failed. Over the past 6 months(ish) things have started to make sense. Our other daughter is the strep carrier. It seems that erradicating step carriage is not that difficult if a person can take Clindamycin. Our strep carrier daughter is only 3 and was constantly throwing up the Clinda. We put her on daily Augmentin and things calmed down for a while but our daughter got strep even while ON augmentin and re-infected PANDAS DD.

 

Finally after 6 months of trying to get the strep carrier daughter to take Clinda, we were successful. We separated our girls so that PANDAS DD body could have a chance to calm down away from her sister. Shockingly, DD recovered without having to be hospitalized. This has never happened. During the 8 dau separation, I have been giving the strep carrier daughter 3x/day doses of Clinda. Well, last night, she got strep AGAIN!! WHILE ON CLINDA!

 

Can anyone speculate/provide insight here? Our PANDAS daughter is set to come back tomorrow and now there is no way I can reunite them. Why in the world can we not get rid of the carrier state??

 

I can certainly expand on any of these details but I don't want to overwhelm anyone initially. I, myself, am trying to keep an anxiety attack under control!

 

THanks in advance!

FA

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I was thinking Rifampin as well, but does anyone know for sure? Or has anyone done it?

 

We haven't done this yet but may be headed that way. I remember reading posts several years ago from some parents whose infectious disease specialists were using the combo of clindamycin and rifampin as an "eradication protocol" for PANDAS kids (or their siblings) who seemed to be GABHS carriers. At least one mom had commented that this always worked for her child and eliminated the PANDAS symptoms as well.

 

I feel your pain and frustration, FA. Our whole family have elevated ASO, we all did a month of clindamycin together, then waited a couple of months to retest. The ASO came down somewhat (except for my wife's, which rose slightly) but are all still highly elevated. Our family doc is baffled, was sure the clindamycin would bring our titers down much more quickly. We're waiting on results from another round of ASO titer tests and the family doc has referred us to a local infectious disease doc.

 

And adding to the stress - the pediatrician is starting to balk at refilling our PANDAS son's augmentin XR prescription. It's been a year on the XR, but we can't stop while the whole rest of the family has elevated ASO!!!

 

Anyway, I e-mailed Dr. Cunningham to get her advice. She did say that - for some people - ASO titer levels come down very slowly. Nobody knows why. She advised us to re-test and definitely pursue the infectious disease specialist referral. If you can find an open-minded ID doc, they seem more likely to prescribe a "heavy duty" combo eradication protocol like clindamycin and rifampin.

 

Best of luck, and let us know how things go!

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This has been going on for so long that I can't even tell how we determined that she is a carrier. I believe we figured it out because DD had what we thought was a terrible diaper rash all her life but it would never get better with normal diaper rash treatment. Finally when she was almost 3, we had her rash checked by our ped and were all blown away when it was strep. I think a carrier is a person who is infected with strep but has no real signs or symptoms.

 

Our carrier daughter has been on abx for about 9 months now and we thought we were fine. However, we have another very close friend who has a daughter with PANDAS as well. Our PANDAS daughter has never gotten better in her 2 years of this exacerbation (she has improved with IVIG treatments but they always wear off). Our friend's daughter keeps getting infected by our carrier daughter even though the carrier daughter should be fine on the abx. When the friend's PANDAS daughter reacts to our daughter, I will look and our carrier daughter has a bright red bum. It will not culture on any test because she is on such high abx, but the ped and I believe that it is for sure strep. Our PANDAS daughter was ready for IVIG last week but we made the choice to try removing her from her sister instead and the PANDSA daughter improved about 85% without IVIG treatment.

 

I want to tear my hair out in how to kill this infection!!!

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I think our ped will do the Rifampin and the Clinda, Worried Dad, but at this point I am so scared that we won't be able to get rid of it even with that.

 

I can't believe that your wife's titers even rose while on it.

 

Worried Dad, do you feel that you may have actually erradicated it, or do you think it is still there? What is your gut feeling? Our ped has seen 3 babies with chrinic strep (not carriers) take clinda and then get strep again.

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Have you done an immune work-up on your strep carrier daughter to see if you can determine why her body can't get rid of it?

 

No, we haven't done anything with the strep carrier daughter except try to give her abx to get rid of it. It hadn't even crossed my mind because the PANDAS daughter is in such bad shape. We are seeing a naturopath for both girls and she is the one that said we should be focusing more on the carrier daughter.

 

Can you tell me more about the immune workup for the carrier daughter? What would I do and what would I hope to learn? I think that is a good idea. I'm stressed out though because my PANDAS daughter is to return tomorrow. We sent her to my parents' house which is all the way across the country. I'm considering having her stay there. But I think that is hard on the mentality of a 4 year old as well...

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I also suggest reading Stephanie's posts about OLE. Her child had impetigo for quite some time and it wasn't until she switched to OLE that it finally started to get in check.

 

We haven't pursued the tonsils because the strep is in her bum. She has never had it orally. Our ped doesn't think the tonsils would help.

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Have you done an immune work-up on your strep carrier daughter to see if you can determine why her body can't get rid of it?

 

No, we haven't done anything with the strep carrier daughter except try to give her abx to get rid of it. It hadn't even crossed my mind because the PANDAS daughter is in such bad shape. We are seeing a naturopath for both girls and she is the one that said we should be focusing more on the carrier daughter.

 

Can you tell me more about the immune workup for the carrier daughter? What would I do and what would I hope to learn? I think that is a good idea. I'm stressed out though because my PANDAS daughter is to return tomorrow. We sent her to my parents' house which is all the way across the country. I'm considering having her stay there. But I think that is hard on the mentality of a 4 year old as well...

 

 

I was just thinking its possible your carrier daughter has an immune deficiency and that's why she can't get on top of the strep. I guess you'd need to see an immunologist. Maybe others can chime in on this because we haven't faced the carrier issue. It was just a thought.

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Sorry, I have no advice, but our stories are very similar. And wow, this is scaring me. But maybe it's a good eye opener. My probably-PANDAS son is 7, and I'm pretty sure my 5 year old son is a carrier. He's had 2 positive throat cultures with no symptoms at all. We also sent PANDAS son to his Grandparents for 2 weeks and sure enough he was better until he returned home. Of course being completely spoiled and having no demands made of him must have helped, but even his physical symptoms went away (no pains, no sensory issues). He's had 5 antibiotic scripts (penicillin x2, amoxicillin, zithro x2) since mid-August and still cultured positive again. So is he also a carrier, or is this particular infection difficult to treat, or is he getting reinfected from ds5? Since they are both positive on throat cultures I want their tonsils out. Our doctor doesn't want to do anything for ds5 because he's asymptomatic. What a nightmare. One day at a time... I think I'll look into the OLE.

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Falling apart,

Hope the others dont shoot me for saying this but here goes...while you were away, many, many, many of us have discovered that our children had multiple infections like lyme, bartonella, babesia, mycoplasma, and viruses that were making it next to impossible for their bodies to get rid of strep. In these situations, other parents have sought the help of lyme literate doctors for care. These doctors are very skilled at going at multiple infections with combination antibiotics. We've talked a bit about peeling away at the layers, knocking out these co-infections one at a time. Certain drugs in combination do this and it is truly an art but can be done by an experience lyme doctor. If your children cannot get rid of strep, then it is my opinion that SOMETHING else is wrong. If it were just that she was immune deficient then the ivig's would have helped with that. After a year of doing ivig and antibiotics for strep, it really sounds like it is time to look for other culprits. I am not saying your children have lyme disease, but there has been a pattern here on the forum in people dealing with issues just like you, only later to find out that their child had lyme disease which was disabling their immune system and making them vulnerable to strep, viruses, etc... In order to proplerly rule out lyme and co-infections visit the ILADS website. This is the International Lyme and Associated Disease Society. If you contact them they will refer you to a physician hopefuly close to you. Again, these doctors are very accustomed to dealing with situations like yours and will find the problem and help treat ALL microbes not just lyme, not just strep, but whatever is holding your daughter back. I don't believe that your situation is just about strep or all your efforts would have paid off. If it were me, I would have both girls evaluated so you can truly get to the source of the problem. Your non-pandas daughter should be able to beat strep too. Don't stop searching and peak over at the lyme forum. Do you remember Iowadawn from when you used to post on the board? Read through some of her posts...her son's situation has been very telling as to why her son had the crazy high strep titers that would not budge. I think you would be interested in her story.

Good luck

Kim

Edited by momofgirls
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