Kayanne

Prior to her PANDAS episode, my daughter was very verbal. Duriing her episode, she barely said anything except to shout no when she didn't want to take her medicine, sit on the potty, get dressed, go to the pool. Her speech came back almost overnight at the end of her steroid treatment. She even came home from a day camp and excitedly said, "Daddy, I can talk now!" She definitely appeared to be in a fog...her short-term memory was affected, she had a defensive posture, and she startled very easily by soft noises.

It wouldn't let me vote unless I picked a choice for the last one...so I picked the first...BUT my daughter didn't have any signs of Chicken Pox. She had the vaccine.

An update--My husband and I were negative for strep. This past week we have seen some low level PANDAS symptoms return to my daughter... She kept saying all week, that the different foods that she was eating felt like they were getting stuck in her throat, and taking a long time to eat...making sure all her food was "liquified" before swallowing, loss of attention span, inflexibility -- leading to emotional lability, baby talk (this has been ongoing for a few weeks), and an edge to her personality. Well, we were hoping it was just her reacting to the strep in the house, but this morning when she couldn't decide which dress to wear to Sunday School, ended with her not going at all, and crying in the bottom of her closet...we knew we had to act more aggressively. I took her to the pediatric practice this morning...again her rapid (a really good sample) was still negative. The pediatrican said that she was not expecting it to be positive because of the pen v k, but she didn't say it was because it would be a "false negative". However, she did think it would be worth a try to send out for the 72 hour culture...so we will see. She did say the only real way at this point to confirm a strep infection is an ASO titer, but (to my relief because I haven't seen this particular dr in this practice very much) she said that as far as PANDAS is concerned, the ASO titer really won't tell her much...it would just confirm her treatment choice. She decided to put my daughter on Omnicef 250mg/day for 10 days and to split the dose in half to give every morning and night...she said she likes to split it for strep infections. I was so pleased that this doctor really seemed to get it.... I am totally blaming myself...I should have just pushed for a different antibiotic last Sunday when were were there...I asked her teacher to inform me if she sees anything, and so far it is not interfering with school. ~Karen

My PANDAS daughter had the flu in Oct, but it was not confirmed to be H1N1. My husband was sick too, and he did the rapid nasal swab...it was negative for the flu. However, the GP told him that the test has a high rate of false negatives, and it was still probably the flu. My daughter's doctor prescribed Tamilflu...it did cut the severity of the illness down. I saw one PANDAS-like tantrum because she was frustrated about her drawing not turning out right...but she pulled herself out of it within about 10-15 minutes, so I really cannot say she had an uptick in PANDAS. We also did (after much very stressful consideration) decide to have my kids receive the H1N1 vaccine (one dose)...also we had no side effects. Also, Diana, THANK YOU for all that you do!! ~Karen

I'm not sure if it is common, but my daughter was coughing and stuffy for a couple of weeks before the doctor decided that he wanted to treat her sinuses with an antibiotic. She was not complaining of a sore throat, and when he looked in, he jokingly said, "Oh, your gonna make me have to swab you for strep!" Anyway...positive. She was put on Ceftin 250mg 2X/day for 10 days. It's a hard call. Karen

Very interesting about adding clorine to the bathwater...I've only been cleaning with it. Did the doctor tell you specifically what this was supposed to do...was it for impetigo? Or was it to prevent spreading from child to child who share baths? Did she mention a specific depth for the bathwater...so the clorine is diluted properly? Thanks, Karen

If it is possible, try videotaping your child...you may be able to play the clip on a moblie device. That's a good idea! We only have a High 8 recorder though. Although, I guess I could bring the whole camera to the doctor to show them. I'm not crazy about waiting another week, but it would be nearly as long anyway with the Ped by the time we got the strep test result. She has been WONDERFUL but is obviously not comfortable treating this on an on-going basis alone - hence the neuro. I'm just glad we have that appointment next week! We only have a high 8 too, but if you have a digital camera, a lot of times they will take video clips...just change the mode to video and hit the button that you use to take the picture as an on/off toggle...then you only need to bring the camera with you. Once I learned how to do this, I have barely pulled out the video recorder. ~Karen

If it is possible, try videotaping your child...you may be able to play the clip on a moblie device.

I really think it all depends on your purpose for using the steroid. If you are trying to use it as a treatment then I would say 50% improvement is not something you should accept--try it for a longer course or wait a month and try again. Dr. L told us that if our daughter was not 100% or close to it after the her month-long course, then we would need to be considering IVIG or plasmapheresis. However, if you were trying it to see if there was an improvement that would then indicate that this is most likely autoimmune, and therefore your son would be a good canidate for IVIG, then I would say 50% improvement is a good number, but move on to the treatment that will get him to 100%. ~Karen

I'm pretty sure (but I might be wrong) that those children who have already had IVIG with Dr. K are the ones who he prescribes longer courses of antibiotics. To try the steroid or not is a hard decision if you are not sure this is PANDAS...your son's CamK score was really marginal. Was the blood drawn before, during or after an execerbation? Did Dr. K have any opinion on his CamK score? Also, I would definetly discuss the steroid with the endo...he should have some insight for you. I think it is wise to dig as deep as you can for answers, if you are not sure this is PANDAS. Steroids were very benefical for us, but our daughter's case was very clearly PANDAS: multiple positive rapid strep tests, a very different child within 2-3 weeks of first strep test, and she responded really well to antibiotics. I completely agree with the other posters that a longer trial of antibiotics would be a good thing to try. Have you tried all the recommended supplements, allergy testing, elimination diets and other things that are frequently mentioned on the TS board? I do think that Dr. K does have a "honed" protocol, perhaps a phone consultation with Dr. T. would give you more answers...I think he believes in really digging to try to find (if any) what type of infection could be causing a child's symptoms. It's a hard call...I'm sorry that you are going through this! ~Karen

My question of the day is...if Dr. K. routinely did 2gm/kg (instead of 1.5gm/kg) would his success rate rise from 80% to 90% or higher? And what else could we be doing for the "other" 20%? In WorriedDad's case, it was high dose augmentin xr (after multiple IVIG's) that did the trick...I think we need to keep asking questions and not just accept 1.5gm/kg as the final answer in all cases, since obviously that's not the case. I agree whole-heartily...ALL options should be on the table...steroids, antibiotics, IVIG, Pex and PlasmaPheresis. I'm very grateful to Dr. L for treating my daughter with a prednisone. It has (so far) spared my family the stress of having our daughter go through a medical procedure...not that I woudn't do it if was called for. But for the cases that are caught early, and have few contributing factors to exercerbate...the big procedures may not be necessary...at least not right away. It doesn't seem right to push every child into the same treatment protocol. HOWEVER, I do agree that a more standard protocol should be set up that...But mostly I think the word needs to get out to the pediatricians so that more cases are caught early!

She was congested and missed some school because of a cough...I took her to the doctor's on February 1, and that pediatrician said to wait a week...her throat looked good, so I didn't subject her to a swab....she did seem to be improving, so I didin't take her back on the 8th because I knew my daughters had a well visit on the 11th.

Here we go again…(sigh)…three out of four of my children have tested positive on rapid strep tests. I have a very slight heavy feeling in my throat with stomach pain, so I am going to the doctor tomorrow, and hopefully my husband will be able to get to see them within the next day or two…he works far from home… The good news is that my PANDAS daughter is not testing positive, and is not showing any troubling or sustained uptick in symptoms since Thursday when my dd9 tested positive at her well visit… Any way… dd9 (87lbs) is on Ceftin 250 mg twice a day for 10 days—her sinuses are also infected the pediatrician wanted to double check because her throat looked red at her well visit…(my PANDAS daughter was also swabbed Thursday, and it was negative) ds4 (37 lbs) is on Duricef 750mg once a day for 10 days—he wet the bed on Friday night, and had a brief fever Saturday afternoon, and seemed fine this morning, but I didn’t want to risk not treating the strep so I still took all three kids in to be tested this morning. ds2 (31 lbs) is on Duricef 500mg once a day for 10 days—he hasn’t had any symptoms of being sick, I took him to get his throat checked for my own piece of mind. PANDAS dd7 (she’s 7 today) was negative on the rapid again today so she continues on 200mg of pen vk twice a day as a prophylaxis—the pediatrician felt that it was doing its job so an increase was not necessary. So needless to say, I’m hoping and praying we get through this with just one round of antibiotics (last year it was several) and without any PANDAS symptoms. Please keep your fingers crossed... ~Karen

I am so sorry that you are going through this! I think you were right to get your mom to take her... Is she currently on antibiotic? Have you tried Motrin before?

http://en.wikipedia.org/wiki/Petechia Wikipedia also lists scarlet fever as an associated illness with petechiae Scarlet fever is a strep infection that also has a rash...I would push for a change to azithromycin I could be related to the strep.

Hit the "contact us" and a form will pop up--I filled it out and in the additional info at the bottom I said that I would like to have some cards for distribution. P.Mom, LOVE the facebook page...became a fan, and sent out intives to all my friends...I hope this gets momentum!

I clicked the link...it isn't working

If I had to choose between The PANDAS Foundation and Dr. Cunningham's lab, I would pick Dr. Cunningham. However, If they are allowing voting for each month, then why not Dr. Cunningham's Lab for March and PANDAS foundation in April? I know we have not been happy with Beth Maloney's pushing the idea of strep titers being the test for PANDAS, but their "Got Strep" cards are really good...not a mention of titers. ~Karen

To make a poll: Hit "New Topic" In the second thin blue box it says "Poll Options Click here to manage this topic's poll" Click on that to start typing the poll questions and choices for answers

Fixit, Are you from PA?

Wow so a simple cold or sinus infection could be causing this? sigh... I can't wait to get an appt and blood work up done. Sinus infections could be strep

(The bolding is mine) Are you talking about the Cunningham blood test results? You said his dopamine was high? They were not measuring dopamine levels, but were measuring anti-neuronal antibody titers to dopamine 1 and 2 receptors (I think its the receptors)---so if those titers were high, could that mean that dopamine is low? That your son has bad anti-bodies attacking dopamine receptors? Okay...I would double check with someone because I have a very cursory understanding of the cam K test...maybe ask Buster...or email Dr. Cunningham, I believe that other posters have said that she is responsive to questions. ~Karen

Or white! Pure light, light, light! O.K. What about White, yellow and green? Green background with white and yellow lettering? edit

quick question... Dr. T, is this something that you want us to return to you after we fill it in because you are gathering info (even if our child sees a different doctor) or is this just a tool to help us parents to organize our children's history? Thanks a lot! Karen

Absolutely! because strep can be in many places where it is hard to get a specimen to perform the rapid or to culture....sinuses, adnoids, ear, vaginal, perianal, in the digestive tract.... Would you mind telling us which antibiotics he used, the dogages and his weight.... some antibiotics are found to be more efffective against strep right now, I would cry, beg, plead, bring your husband with you to put your child back on the antibiotics...augmentin, zithromax, keflex, clindamycin (capsules)...these have good track records... You are in luck, one of the best PANDAS doctors in the nation is in Bethesda, MD. Dr. Beth Latimer some threads on this fourm that you should read: http://www.latitudes.org/forums/index.php?showtopic=5023 http://www.latitudes.org/forums/index.php?showtopic=6266 ~Karen