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Here we are again with my dd3 (not diagnosed w PANDAS but suspect) having her 4th positive rapid strep in 8 weeks. Broke the bank and took my other 3 kids in as well. All positive. They all got a bicullin shot.

We just came back from a PANDAS doc in north Texas with my dd11 who does have PANDAS. We all have Lyme, too, and I am taking her to a Lyme doc in early April.

I think I'm just feeling overwhelmed with the expense of it all. It seems like we have really deficient immune systems, and I cannot imagine the expense of treating us all. Right now we are just treating our raging, confirmed kiddo for PANDAS and Lyme. I'm afraid I'm going to send my already overwhelmed husband over the edge.

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Here we are again with my dd3 (not diagnosed w PANDAS but suspect) having her 4th positive rapid strep in 8 weeks. Broke the bank and took my other 3 kids in as well. All positive. They all got a bicullin shot.

We just came back from a PANDAS doc in north Texas with my dd11 who does have PANDAS. We all have Lyme, too, and I am taking her to a Lyme doc in early April.

I think I'm just feeling overwhelmed with the expense of it all. It seems like we have really deficient immune systems, and I cannot imagine the expense of treating us all. Right now we are just treating our raging, confirmed kiddo for PANDAS and Lyme. I'm afraid I'm going to send my already overwhelmed husband over the edge.

 

 

Oh, I am sooo sorry to hear this. With what we pay to treat just kiddo and my attempts to boost my immune system so I do not get her sick, I cannot imagine paying to treat six. I hope you have good insurance, but I know much of this stuff is not covered or is out of network.

 

 

Are they retesting the 3 yr old after treatment or just waiting for symptoms to reappear? I know my kiddos doc did not want to retest her after the first treatment, but when I pushed the issue hard, they retested her and she was still positive and continued to be positive for almost 60 straight days. Now they test her every time I take her in, and I have rapid strep tests I keep at home (bought on Amazon) in case I suspect she is positive.

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No, they don't want to retest her; I have to push to test. They'll keep telling me that she is on or has just finished an antibiotic, and/or she doesn't look like strep. The last time they told me that, I took her to another doc the next day, and sure enough she was positive. At this point, I think they may continue to test if I ask given strange or absent symptoms. However, I am now thinking that she really needs to se an immunologist...maybe the one we have in common! Or maybe I need to just try to treat Lyme first. I was trying to wait until I could get a good feel about our Lyme doc. I guess I'm trying to be a cheapskate! ;)

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I'm sure you are worried about finances. This is a valid concern. Especially when you are looking at treating lyme. Most LLMD's are not covered by insurance but thankfully, the medications we use have been for us. I will say that the LLMD that we use gives a family discount so if you take in more than one child you get a significant discount on the second, third, etc., family member. I believe most do something similiar. So, that is just something to keep in mind when treating your family. At least you know what you are dealing with now. Once you start getting the lyme treated, the strep will be easier to clear also. Your family can and will get better. Find a good doctor and jump into this treatment knowing your family will be healty and whole soon. You are doing all the right things. Keep up the good work.

 

Dedee

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Here we are again with my dd3 (not diagnosed w PANDAS but suspect) having her 4th positive rapid strep in 8 weeks. Broke the bank and took my other 3 kids in as well. All positive. They all got a bicullin shot.

We just came back from a PANDAS doc in north Texas with my dd11 who does have PANDAS. We all have Lyme, too, and I am taking her to a Lyme doc in early April.

I think I'm just feeling overwhelmed with the expense of it all. It seems like we have really deficient immune systems, and I cannot imagine the expense of treating us all. Right now we are just treating our raging, confirmed kiddo for PANDAS and Lyme. I'm afraid I'm going to send my already overwhelmed husband over the edge.

 

 

Oh, I am sooo sorry to hear this. With what we pay to treat just kiddo and my attempts to boost my immune system so I do not get her sick, I cannot imagine paying to treat six. I hope you have good insurance, but I know much of this stuff is not covered or is out of network.

 

 

Are they retesting the 3 yr old after treatment or just waiting for symptoms to reappear? I know my kiddos doc did not want to retest her after the first treatment, but when I pushed the issue hard, they retested her and she was still positive and continued to be positive for almost 60 straight days. Now they test her every time I take her in, and I have rapid strep tests I keep at home (bought on Amazon) in case I suspect she is positive.

 

Agree that retesting is VERY important. Other family members that are culture positive (regardless if they have symptoms or not), can affect your PANDAS kid. VERY important to keep strep out of the household.

 

Also, consider having "mom" checked for Lyme if kids are positive (could be congenital, but if nothing else, they are exposed to the same environment).

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