Many Thanks, but still missing some pieces of puzzle

[nojo]

Thank you all so much for the information I have gained on this board. I have been reading alot, posting a little, but because of all of the information I have gained here I have made tremendous progress. Just some of the things you all have helped me with: I have finally gained the confidence to question my old pediatrician enough to find a new pediatrician who believes in PANDAS, who on Friday, just confirmed we do indeed have PANDAS; I am beginning to understand some of the quirks and sensory issues my daughter has may actually be related to the PANDAS, I have gotten my daughter on prophylactic antibiotics until she is at least 18, I am in the process of working with the school to have modifications made to assist my daughter, I have a consultation set up with Dr. Latimer, I understand how certain antibiotics will not work with strep, have met someone in my area from this board, compiled a notebook with her records over the last two years (that really helped open my own eyes), test and treated our family dog, and have gained the confidence to know I'm not totally crazy and to fight for my harder for daughter to get her back. Some of the puzzle pieces are not quite fitting together yet, maybe you all can help.

 

The pediatrician we saw on Friday has seen a few PANDAS kids, her own son has PANDAS, so she is knows it exists. The one thing that she has said to me was that she has not yet seen someone with PANDAS that gets strep with the frequency that we do. Do any of you all get strep all of the time? As I looked over our records, my daughter tested positive 10 times over the last 24 months, alot, but not a crazy amount, until you factor in that she was so sick her kindergarten year (she's just starting 2nd grade now) she was placed on homebound for 5 months. During that time, we did the immunological work-up, and I don't have the copy of it yet, but I know we failed the same area as everyone else, the pneumococcal titers. I know we were also low on one of the IG levels, but not low enough to do anything. We were re-vax and passed at the time. She missed most of Dec that year, homebound all of Jan and Feb, made it back to school in March for a whole 3 weeks before getting really sick, pulled out again for 2 months, and finally ended the last six weeks of the school year. The new ped. just did the immunological work-up, so we are waiting again, but it seems to me that we might have an immune problem also. Do any of you get strep this often? We have had it 3 times since this July 24. One round of antibiotics we took twice as long to clear it, and we did have a negative culture to prove that theoretically it did clear. The only times we don't get strep monthly is during the summer, but we always get it at least one time a summer.

 

The other part that is a little unusual is her younger sister. I don't believe she has PANDAS, but when I request her records, she tested positive 12 times over the past 2 1/2 years for strep. FYI, we have tested the dog (neg), no carrier in the family, treated all of us at the same time just to be safe, tried many different antibiotics. My husband and I don't ever get strep when they get it, but we have be cultured to make sure that we are not carriers ( on more than one occasion).

 

Any input or suggestions?

[P_Mom]

WOW....that is ALOT of strep! I would see an ENT ASAP to see what kind of shape the tonsils/adenoids are in, and then look into removal. (for both kids...you don't want younger daughter bringing all that strep home) Removal has been proven to reduce the amount of strep infections...however, it does not cure PANDAS. But, less strep=good thing! My older son had his out...younger will be getting them out this year. Dr. Latimer really stressed the importance of this to us.

 

By the way....way to go !! You are doing an AWESOME job of getting the stuff done that you need to for your PANDAS child!

 

Best wishes!

 

Kelly

[nojo]

WOW....that is ALOT of strep! I would see an ENT ASAP to see what kind of shape the tonsils/adenoids are in, and then look into removal. (for both kids...you don't want younger daughter bringing all that strep home) Removal has been proven to reduce the amount of strep infections...however, it does not cure PANDAS. But, less strep=good thing! My older son had his out...younger will be getting them out this year. Dr. Latimer really stressed the importance of this to us.

 

By the way....way to go !! You are doing an AWESOME job of getting the stuff done that you need to for your PANDAS child!

 

Best wishes!

 

Kelly

 

Thanks Kelly, forgot to mention, both girls have had their tonsils and adenoids out several years ago. My older one, with PANDAS, I think got strep while recovering from the surgery. It was brutal for her. At this point, I don't know if I need an infectious disease or an immunology specialist. I guess the blood work will help decide. It is perplexing about my younger daughter also having so much strep.

[KeithandElizabeth]

Whoa - have you tried augmentin or zithromax yet? My kids had strep 5 times in 5 months this spring and I really think we were using the wrong antibiotics and that they were never clearing the original strep.

 

The whole tonsillectomy is crazy as well. Different doctors give such different advice about tonsillectomy. I know Dr. Latimer recommends it and Dr. K says it is inconsequential to PANDAS. I have friends with kids who had tonsillectomies who then started getting strep in other places, like their sinuses and stomachs.

 

I think maybe go for the big guns (zithromax) for a longer period of time and then retest after you are done with the antibiotics to make sure you get a negative test.

 

At least you have your pediatrician on board.

 

Keep us updated.

 

elizabeth

[thereishope]

I'm finding a lot of our kids got strep while recovering from surgery. My son tested + one month after t and a surgery. I don't think it's a coincidence. I'm not sure what to think of it.

 

In case you're curious, my son's strep count is 4 times in 6 months. We've been strep free for 6 months. He had never had strep prior to 2008.

 

 

WOW....that is ALOT of strep! I would see an ENT ASAP to see what kind of shape the tonsils/adenoids are in, and then look into removal. (for both kids...you don't want younger daughter bringing all that strep home) Removal has been proven to reduce the amount of strep infections...however, it does not cure PANDAS. But, less strep=good thing! My older son had his out...younger will be getting them out this year. Dr. Latimer really stressed the importance of this to us.

 

By the way....way to go !! You are doing an AWESOME job of getting the stuff done that you need to for your PANDAS child!

 

Best wishes!

 

Kelly

 

Thanks Kelly, forgot to mention, both girls have had their tonsils and adenoids out several years ago. My older one, with PANDAS, I think got strep while recovering from the surgery. It was brutal for her. At this point, I don't know if I need an infectious disease or an immunology specialist. I guess the blood work will help decide. It is perplexing about my younger daughter also having so much strep.

[peglem]

Yep. b4 proph abx, my daughter tested + again a few days after each course of abx....so about every 2-3 weeks. I don't feel like doing the math, but the only time she didn't test positive was when she was on antibiotics. Recently, she was even positive while on the proph. antibiotic. Her only symptoms are behavioral.

 

2 years ago we saw an immunologist, he didn't think her IgG was low enough to treat, she responded to pneumovax...he said she was a carrier and sent us on our merry way.

 

This time around, the pediatrician did the immune panel and ran IgG subclasses- very deficient in IgG4, and IgA. We didn't do pneumovax this time.

My daughter also had her tonsils/adenoids out and was positive for strep during recovery.