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I knew this day would come. Thursday morning my daughter developed strep throat. She threw up once and I tested her with a kit I had. Positive. I took her in later to confirm. Positive. In the meantime I put masks on everyone and sterilized my house. I gave Carter 500mg of azith and then started praying. I sent my boys to a friends house for the day. I did nor let them come home till late and then swabbed him...weak positive. At that time it was too late to call the doctor and he had no symptoms so the next morning I took him in. He swabbed negative but the doctor thinks the 500mg of azith he got the day before may have been why. She put him on a cephalasporin (as well as my 6 year old son). Still no symptoms. This will be a true test. I will keep praying. I think we have done all we can do.

We have done PEX, IVIG twice and have been doing great. I have to remember at least I know what works if it comes back!

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I knew this day would come. Thursday morning my daughter developed strep throat. She threw up once and I tested her with a kit I had. Positive. I took her in later to confirm. Positive. In the meantime I put masks on everyone and sterilized my house. I gave Carter 500mg of azith and then started praying. I sent my boys to a friends house for the day. I did nor let them come home till late and then swabbed him...weak positive. At that time it was too late to call the doctor and he had no symptoms so the next morning I took him in. He swabbed negative but the doctor thinks the 500mg of azith he got the day before may have been why. She put him on a cephalasporin (as well as my 6 year old son). Still no symptoms. This will be a true test. I will keep praying. I think we have done all we can do.

We have done PEX, IVIG twice and have been doing great. I have to remember at least I know what works if it comes back!

 

 

I wish you the best! Sounds like you have a firm grasp on it. A true test you are right! Hopefully things stay under control! Good luck.

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I will pray for you that everything goes OK. Haver you ever added xylitol products? You can get xylitol nasal spray, mouth wash and gum. Maybe you can get your kids to chew the gum, gargle, and even use the nasal spray. It just helps to kill any strep in the nose/mouth and it is harmless. If you injest too much xylitol (the sugar crystal type) it can give you some diarrhea, but I have never had that happen with the gum or mouthwash. My 3 yo son even tolerates the gum fine.

Good luck!

Colleen

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I will pray for you that everything goes OK. Haver you ever added xylitol products? You can get xylitol nasal spray, mouth wash and gum. Maybe you can get your kids to chew the gum, gargle, and even use the nasal spray. It just helps to kill any strep in the nose/mouth and it is harmless. If you injest too much xylitol (the sugar crystal type) it can give you some diarrhea, but I have never had that happen with the gum or mouthwash. My 3 yo son even tolerates the gum fine.

Good luck!

Colleen

How does this gum help?

I am going to find some for my dd

this might help her when she is with different kids

that I don't know to keep strep away.

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So far so good. Carter (my child who had BAD PANDAS...PEX followed by IVIG....has done really well. I have seen a slight increase in arm rolls and hyperactivity but it is mild and fleeting. My younger son Spencer (6) has had a slight increase in oppositional defiant behavior which we were just starting to see decrease after adding azithromycin. My daughter Emma has done great. We are seeing the immunologist Wed so we will see what she says. Maybe the daily azith is protecting us. I will keep everyone posted.

I knw this day would come and I may see things get worse but so far so good. I will keep praying though just to be safe!

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So far so good. Carter (my child who had BAD PANDAS...PEX followed by IVIG....has done really well. I have seen a slight increase in arm rolls and hyperactivity but it is mild and fleeting. My younger son Spencer (6) has had a slight increase in oppositional defiant behavior which we were just starting to see decrease after adding azithromycin. My daughter Emma has done great. We are seeing the immunologist Wed so we will see what she says. Maybe the daily azith is protecting us. I will keep everyone posted.

I knw this day would come and I may see things get worse but so far so good. I will keep praying though just to be safe!

I'm praying for you all too!

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Saw some stuff last night. We had a swim meet and my son did not do great in the first competition. His googles filled with water. He started crying (he is 9) and wanted to swim it again. He said it several times and made me ask the coach if he could. I knew he could not but he would not take no for an answer. He then wanted to throw his googles in the trash. I said no several times and then told him he would have to pay me $12.99 if he wanted to do it. The whole thing put me in a bad mood because this "cognitive inflexibility" is an old symptom. I made him eat dinner and then he seemed in a better mood. My husband thought the whole thing was caused because he was hungry and tired (he had a spend the night friend the night before) and thought I was over-reacting but I am not sure. My mother's intuition is oretty good. He seemed fine after that but we will see. We see the immunologist today so we will see what she says.

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