worriedmommy

Thank you for the info. I'm happy that your daughter is improving. One question...what is ART?

Thanks for posting! Was your daughter's Lyme test blatently positive, or was it based more on a clinical diagnosis? Also, can you elaborate on how she's doing better?

Very interesting Wendy. Thanks. (If the parent of that little girl is on this forum, I'd love you to pass her my name so she/he could PM me, if they're willing.) Can you tell me how she's doing better? What thought-to-be-PANDAS symptoms are now better with combo'd antibiotics? --I'm looking for any shred of hope that dd's tics could possibly go away (or at least slow) with the right treatment. I'm dying for Igenex labs to come back. She had IgeneX testing in Aug 2010, and the results were thought to be negative. (All co-infections negative, Western Blot IgG only had band 41 as IND, and Western Blot IgM had Band 41 as IND & Band 58 as ++). I'm curious to see if anything has changed. Lyme is really the main "stone we've left unturned" up to this point. I'm a little curious about mycoplasma. My husband's mycoplasma IgM came back high last month, for which he took 3 weeks of antibiotics. Also, my 5 year old son's mycoplasma level rose from 0.73 in March to 1.30 last week (with the normal range being < 0.90), despite being on daily Azith the entire time. (We've been fighting a mycoplasma infection in him for over 12 months!) -- So, clearly dd is being exposed to mycoplasma. We had her tested last week & her results should be in any day now.

Its a different type of chlamydia (Chlamydia Pneumoniae). My daughter's C. Pneumoniae IGG was 1:128...should be <1:64 Ah...I did not know there was a different kind I don't believe she has ever been tested for that. I'll have to ask Dr. B about it when we see him this week.

Thanks for the responses. We tested her for mycoplasma & lyme (IgeneX) last week, but have not yet gotten the results. We did not test for chlamydia...since she's 7, I can't see that being an issue. We actually go to see Dr. B on Wednesday for IVIG #5, and have a consult scheduled to discuss all of her results. So, I'll get his opinion soon. Just wanted to see if anyone else experienced the same thing.

My PANDAS daughter cried hysterically when she turned 6 last year. I was dumbfounded, as I'd never heard of a child not being excited for a birthday. Then, the eve of her 7th birthday this year, she told me that she was nervous about turning 7. She said she was used to being 6, and didn't want to turn 7. No crying, but lots of anxiety.

My PANDAS daughter cried hysterically when she turned 6 last year. I was dumbfounded, as I'd never heard of a child not being excited for a birthday. Then, the eve of her 7th birthday this year, she told me that she was nervous about turning 7. She said she was used to being 6, and didn't want to turn 7. No crying, but lots of anxiety.

Just curious if anyone knows whether IVIG affects C3D levels. Dd7 had C3D level of 57 back in Aug 2010, before ever having IVIG. Since then she's had 4 IVIGs, with her last one on 3/17/11 & 3/18/11. She just had a blood draw on 5/10/11 (8 weeks out from last IVIG) and her C3D is up to 87. (Normal is 0-8). I'm wondering if this is possibly up due to IVIG or if there's no correlation. (She has not, and still is not, doing well regarding PANDAS symptoms.) Thanks!

My 7 year old PANDAS daughter is thought to have had PANDAS since around 18 months old. Her symptoms at that point were mostly rage, ODD, emotioal liability & separation anxiety. Maybe more...it was very hard to decipher what was going on with her at such a young age. At the time, we just thought the terrible-twos hit early & very extreme. At age 4 she had her tonsills removed due to the size (4+) and b/c her ENT said that often they saw defiant behavior go away after a tonsillectomy. (Still didn't know about PANDAS at the time.) Within 1 month of the tonsillectomy dd was a new child. She was the happiest I've ever seen her, and didn't get strep for a year. --It was a "wonderful" year. The problem is that at age 5 she started to get strep again (both throat & peri-anal), and after about 6 months of recurrent strep & viral infections, PANDAS came roaring back with a vengence. This time tics came on overnight and very bad. (This is when we first learned of PANDAS.) Along with tics came rage, fears, emotional liability, bedwetting, separation anxiety, brian fog, OCD, and a series of other symptoms. This was over 18 months ago...and we're still not out of this exacerbation...even after 4 IVIGs. So, what I'm trying to say, is that while I believe that a tonsillectomy can help/eliminate PANDAS symptoms...like all other treatments, it's not a cure. It can all come crashing down again with another infection.

Can anyone suggest what brand of Taurine and Quercetin to get for my 7 year old, 52 lb. PANDAS daughter. She does not yet swallow pills, but I can open capsules and mix with food if necessary. Scott Smith recommended 500 mg of Taurine 2 x daily and 250 mg of Quercetin before meals each day. The issue with Quercetin is that a lot of the supplements are combined with Bromelain, which is from pineapple, and dd has an issue eating pineapple. (We've avoided it for 2 years as it causes her "private" area to become very irritated after urinating.) So, I'm not sure if it's ok to just get straight Taurine & straight Quercetin or if they need to be combined with other supplements for proper absorption. Dd also takes 15 ml of Kids Calm Multi Vitamin every morning. Any help is appreciated. Thanks!

Thanks for the replies. I do think I will try it with my daughter. We're in the process of adding a few things right now, and have to space the start dates 5-7 days apart, so it could be another couple of weeks before we start.

I just took my PANDAS dd7 to see Scott Smith, PA in Edison NJ. She's currently on daily antibiotics (she was Azith & Omnicef, but are changing to Augmentin tomorrow), and has had 4 IVIGs. She's had an up and down response to IVIG. Scott is recommending adding Spironolactone to her treatment regimen. I'm curious how many others have tried this, and if there was a noticable difference. Scott helped publish a paper on this (http://www.icdrc.org/documents/Bradstreet%20Spironolactone%20Author%20Copy.pdf), which I've read and feel that it sounds promising for PANDAS patients. However, for some reason I feel reluctant to start this drug, due to the off-market use. Any insight/advice would be much appreciated.

She went on Azith in April 2010. Then from July 2010 - Nov 2010 was on Azith/Omnicef combo. In Dec 2010 we scaled her back to just Azith, and this lasted until last month. On 3/19/11 we went back to the Azith/Omnicef combo. Since starting the combo last month, she's doing terrible. (This being said, we started to see an increase in symptoms the night of 3/18, when she was just on Azith...we added the Omnicef on 3/19.) After that things got REALLY bad (tic wise)...probably at their worst 1-2 weeks after. Now she's ever so slightly better, but still overall bad. She's ticcing all day long...very sad. We haven't seen a LLMD. I have an appt with a ND, Dr. Hecht in Portsmouth, who is apparently a LLD, but I haven't heard the best reviews on him. Do you know of any in the New England area? I know Dr. Jones is in CT, and I'm going to call to get on the wait list, but I've heard he's booking in Aug. I'd like to get in somewhere sooner. Honestly, I feel desperation setting in.... I really thought we were on a good path last year after IVIg #2 resulted in substancial improvement from PANDAS symptoms. Now, we're just in a downward spiral. I keep hearing stories of kids who don't respond great to PANDAS treatments, but once treated for Lyme really improve. I almost want this to be Lyme so that there is "hope" she'll get better.

I live in New Hampshire. My daughter is currently on both Azith & Omnicef daily. (She's been on daily antibiotics for the past 12 months). We were planning to retest the western blot through IgeneX in a few weeks. Would it make sense to add the Dot Blot and/or urine PCR to that testing? Can she be on antibiotics leading up to those tests?

My 7 year old daughter had Igenex results in Sept. 2010 as follows: Western Blot IgM: 41 = IND 58 = + Western Blot IgG 41 = IND 58 = ++ All co-infections were negative. I should note that she was diagnosed with PANDAS a year ago. Had a CamK score of 150, with high Anti-lysoganglioside of 640. Antibiotics helped lessen her PANDAS symptoms (mostly tics) in severity and somewhat in frequency, but not to an acceptable level. She responded well to a 5 day steriod taper...so-so to a 30 day taper. She's had 4 high does (1.5) IVIg treatments since Sept. Mild improvement after #1, great improvement after #2, slight decline after #3 (coincided with strep exposure at home and at school), and immediate steep decline after #4. We initially went ahead with IVIg in the fall b/c we were told her IgeneX testing was negative. Given her up and down response to IVIg, we're now taking another look at Lyme. We are going to have her re-tested in a couple of weeks (once IVIg is out of her system). Other than Western Blot & coinfections, should we test anything else? I know the above doesn't scream Lyme, but I've always felt unsettled that she had any positive bands. I should also note that she's immune deficient (CVID), has high C3D levels (57 - when they should be between 0-8), and has been constantly exposed to strep & mycoplasma by my son and my husband, whose titers have been high for the past year...but are finally on the decline due to daily abx. Any thoughts / insight is appreciated. Thanks!