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This is something we can beat!


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We are very blessed at this time. We started the new abx protocol 7/27. After some initial and pretty bad herxing - 3 days and a day here and there - DS just turned 5 is doing very well. We have both had irritated throats and stuffy/irritated noses over the past several weeks which may be virus or allergies. However, when in the past this would send DS into a tail spin, he has had only a couple of evenings of hyperactivity and some counting, finger movements when really tired. Nothing reported at preschool except perfectly typical age appropriate behavior. We have not lived like this for a couple of years - a block of time this long in which we are relaxed and feel like a normal family. I am so thankful! I pray and hope with every cell in my body that this is the end and that we are finally on the way to recovery. I wish this for all of you as well. -Kath

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We are very blessed at this time. We started the new abx protocol 7/27. After some initial and pretty bad herxing - 3 days and a day here and there - DS just turned 5 is doing very well. We have both had irritated throats and stuffy/irritated noses over the past several weeks which may be virus or allergies. However, when in the past this would send DS into a tail spin, he has had only a couple of evenings of hyperactivity and some counting, finger movements when really tired. Nothing reported at preschool except perfectly typical age appropriate behavior. We have not lived like this for a couple of years - a block of time this long in which we are relaxed and feel like a normal family. I am so thankful! I pray and hope with every cell in my body that this is the end and that we are finally on the way to recovery. I wish this for all of you as well. -Kath

 

OH KATHY! I hope it is too!! I am so glad to hear of your son's progress! Thanks for posting this! It gives me such hope!!!

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It is nothing magical, but strong stuff for a little guy. He is on Augmentin ES AM, Azith mid-day and Augmentin ES PM. This is after a year of first, regular Augmentin BID and then a switch to Cefdinir BID. He had "old" Myco from walking pneumonia lasy Oct. that just wouldn't go down in numbers and, in the past, whenever we out a regular 5 day run of Azith on board, he would get much better for a couple of weeks.

 

We went to Dr. B in CT in July who had us test thru IgeneX and Lyme and Bartonella were +. NOW, that being said, we were floored by the result and never thought that our son had any co-infections because his Strep:PANDAS has been very obvious throughout the 2nd half of his life. It has always been very clear that Strep has been the culprit for the PANDAS and he has no other MH DX or DX on the Autism Spectrum. Just an otherwise healthy kid. I am still not totally convinced of the Lyme, as I have spoken to a leading researcher for Bartonella who shared that he believes that people who are + for Bartonella also show a false + sometimes for Lyme. I belive that the main thing that has been holding him back was the Myco and possibly the "old" Bartonella infection (we have a cat that scratched him constantly when he was littler and this cat was adopted as an adult Tom from the shelter.

 

In addition, we cought the PANDAS at age 2.5 and although we did not get the help that we desired, each time he demonstrated PANDAS symptoms, I took him to the Pediatrician and had him tested for Strep, at which time he inevitably was + and put on a 10 day run of abx. So he was protected to some degree throughout it all. He also had a T & A last August (which resulted in the major acute PANDAS episode that sent us to CHOP), but in the big picture, I think that losing those resevoirs for Strep has been helpful.

 

This is way more than you asked for, but I felt that in giving you the abx treatment protocol, it was important to clarify what we might be treating. There is not magic bullet, but this happens to be darn close for my little boy...at least at this time. I will celebrate further when we get off the meds or taper down to a low dose prophylaxis and he remains symptom free.

 

Peace and kindness and warmth from us to all of you.

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