Debbie1 Posted October 25, 2009 Report Posted October 25, 2009 We took our PANDAS son to see Dr. Latimer last week. (We were there a few weeks earlier with our PANDAS daughter.) We had a wonderful visit with her and I am so glad we went. We were able to update her on our dd (who was 3 wks into steroid treatment) and discuss her Cam Kinase level (137 - she considered this pretty high). We then went on to discuss our son. She is really the first doctor we have found who has looked at the whole picture. She believes we have a strep problem in the house (based on titer results of all family members and stomach issues of non-PANDAS child) and that the prophylactic amoxicillin that my PANDAS children are on isn't doing its job. She put all of my children (non-PANDAS child included) on treatment doses of Augmentin for the next 3-4 months until we retest titers and see her again. I asked her what we would do if they have exacerbations while on the Augmentin. She does not expect them to, but if they do we might consider IVIG/PEX. I left so happy (and thankful) that she is able to guide us. With every other doctor, I felt that I had to guide them. I know several of you have had trouble getting in touch with her. I would highly recommend going to see her if you are able. She was kind, compassionate and knowledgeable and unquestionably worth the 9 hour round trip.
faith Posted October 25, 2009 Report Posted October 25, 2009 Debbie, how old are your kids, and what dose did she put them on? what are your son's and daughter's symptoms presently? thanks Faith
Debbie1 Posted October 25, 2009 Author Report Posted October 25, 2009 Faith, PANDAS dd (12) is on 600 ml twice a day. She is at the end of a one month steroid course prescribed by Dr. L. Before starting the steroid she had very bothersome eye and neck tics. The eye tics are now gone. The neck tics are much better than they were (reduced frequency and severity) but not totally gone. In late August 2009, ASO was 371 (down from 620) but antiDNAse B was back up to 960 (where it was when we first tested almost 1 year ago - it had come way down to 480 over a period of several months and then shot back up after strep exposure this summer). Non-PANDAS ds (10) is on 400 ml twice a day. He has had ongoing stomach aches since a strep infection in 9/08. He has had three strep infections in the last year. In April 2009, ASO was 680, AntiDNAse B was 1360. PANDAS ds (8) is on 400 ml twice a day. Recent symptoms since strep exposure over the summer have been an increase in OCD and an occassional tic. He had mild chorea on exam. He is very mild right now and others would not notice what is going on. We know because he has been through much worse and then fully recovered. Debbie
KeithandElizabeth Posted October 25, 2009 Report Posted October 25, 2009 Hi Debbie: I am curious as to Dr. Latimer's thinking about the antibiotics only treatment. Does she just feel that your children have mild PANDA symptoms and they just need to heal naturally by preventing further strep infections and/or does she feel that antibiotics modulate the immune system? And then is the thinking of antibiotics until your 20's based on the premise that adults don't get strep as often. Has she ever addressed what would happen to these children with PANDAS if they do get strep in their 20's? I am guessing that no one really knows the answer to the last question. Thanks, Elizabeth
ajcire Posted October 25, 2009 Report Posted October 25, 2009 Interesting... my non pandas daughter who is the one who is prone to strep in my house (she gets classic strep symptoms) has complained of tummyaches for several years. The peds keep telling me to just track her diet... see if it's connected to wheat or dairy. It's frustrating because I believe her when she says she has a tummyache but can't find any correlation to her diet. I know my husband and my dr. will think I am crazy if I suggest it could be the strep. This dr. does believe that my ds has pandas though so maybe... Faith, PANDAS dd (12) is on 600 ml twice a day. She is at the end of a one month steroid course prescribed by Dr. L. Before starting the steroid she had very bothersome eye and neck tics. The eye tics are now gone. The neck tics are much better than they were (reduced frequency and severity) but not totally gone. In late August 2009, ASO was 371 (down from 620) but antiDNAse B was back up to 960 (where it was when we first tested almost 1 year ago - it had come way down to 480 over a period of several months and then shot back up after strep exposure this summer). Non-PANDAS ds (10) is on 400 ml twice a day. He has had ongoing stomach aches since a strep infection in 9/08. He has had three strep infections in the last year. In April 2009, ASO was 680, AntiDNAse B was 1360. PANDAS ds (8) is on 400 ml twice a day. Recent symptoms since strep exposure over the summer have been an increase in OCD and an occassional tic. He had mild chorea on exam. He is very mild right now and others would not notice what is going on. We know because he has been through much worse and then fully recovered. Debbie
Debbie1 Posted October 25, 2009 Author Report Posted October 25, 2009 Hi Elizabeth, She does feel that my children are mild PANDAS cases compared to others she has seen. My dd is just finishing her second round of steroids so her treatment has not been limited to antibiotics alone. Dr. L. has not ruled out more aggressive treatments (IVIG or PEX) but does not feel they are necessary for us yet. The more immediate problem she wants to address is that 4 out of five of us tested have significantly elevated titers. My PANDAS children's symptoms seem to correlate with the rise and fall of titers. However, even when the titers fall, they have not been in the normal range. She feels that we have a carrier or are passing a strep infection back and forth and wants to treat everyone at the same time to eliminate the strep. Once we have done that and given them some time to heal, we will reevaluate how they are doing. She wants to see us back in 3 to 4 months. My children do have a history of responding well to antibiotic treatment. They have had an amazing recovery in the last year (thank you to everyone here!), but relapsed recently after a sleepover with a cousin with strep. The relapse is no where near as severe as prior episodes. We are hopeful that eliminating the strep and giving them time to heal will be enough for them. If not, we may need to get more aggressive. She did not mention anything about antibiotics modulating the immune system so I am not sure of her opinion on that. They will be on full strenth antibiotics until we see her again and then she will reevaluate. Not sure at this point what the long term will be. She did recommend that we take everyone to an ENT (we are going next week) and that we have stool cultures tested for strep. Let me know if I can answer any more questions for you. Debbie
Debbie1 Posted October 25, 2009 Author Report Posted October 25, 2009 erica, My non-PANDAS son has been through a whole GI work-up (including extensive bloodwork and endoscopy). Bloodwork showed high eosinophil count and high strep titers, endoscopy found nothing. When I suggested perhaps the stomach aches were strep related, doctors looked at me like I was crazy. Dr. L. is the first doctor to suggest that the stomach aches are strep related (and I didn't even bring it up this time around!) She suspects he might be the one harboring strep and reinfecting the others. He just started the augmentin on Friday night. I am watching closely to see if his stomach aches disappear (he hasn't had any since Friday night so we are off to a good start!) Have you tested your daughter for strep recently? You may want to consider getting her titers, a stool culture and seeing an ENT. Debbie
faith Posted October 25, 2009 Report Posted October 25, 2009 debbie, does your kids have any ocd behaviors? any vocal tics? Is the ENT doc just for stool test or other workup? if so, what would they be looking for. why does she want you to see an ENT? thanks Faith
dcmom Posted October 25, 2009 Report Posted October 25, 2009 Debbie- please keep us updated. My non pandas dd age 9- has been having daily stomach aches since her bout with strep this year. I am thinking of trying to get her on antibiotics....
Debbie1 Posted October 25, 2009 Author Report Posted October 25, 2009 My PANDAS ds has primarily OCD behaviors (although mild at the moment) and PANDAS dd twirls her hair constantly, which I was only recently told is an OCD behavior. They both had vocal tics in prior episodes, but not in this one. Dr. L. ordered the stool cultures. She is sending us to the ENT to take a good look at the tonsils for strep (and perhaps the sinuses?). She wants us to consider removing tonsils.
faith Posted October 25, 2009 Report Posted October 25, 2009 Debbie, just to clarify, what type toc would do the stool culture? thanks Faith
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