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Everything posted by worriedmommy

  1. Thank you for the info. I'm happy that your daughter is improving. One question...what is ART?
  2. 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?
  3. 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
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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!
  9. 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 ne
  10. 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
  11. 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.
  12. 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 s
  13. 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
  14. 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?
  15. 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
  16. Joan, I tried to send you a PM, but it said your mailbox is full. Looking for your opinion on Dr. Hecht as an LLD. Can you PM me?
  17. Thanks so much for the replies. It makes sense...but when I try and explain it to people (without PANDAS kids), I feel like I sound nuts! I want nothing more than for this current downslide to be related to strep exposure...at least I'll have a reason! I'm constantly analyzing each and every aspect of dd's life, trying to find a cause for every PANDAS symptom. Last week when she started to have an increase in tics, I was dumbfounded. I was almost giddy when the Dr. told me my son had strep, as it seemed so clear as to what was happening to dd. Then to get the info today on her class
  18. I'm going crazy here. Can someone please remind me why "exposure" to strep causes my PANDAS daughter to react? My dd6, just had her 3rd IVIG on 1/17. She was doing so well after IVIG #2 in Nov 2010, but started to backslide the days leading up to #3 last week. Well, I found out on Tuesday that my son has strep and then found out today that a child in dd's classroom was dx with strep throat last night. So...she's clearly being exposed. The question I have is that if she's on 500 mg of Azith, why is she being affected? Is it simply that the bacteria is getting into her body, setting thing
  19. Thanks for all of your replies. Surprisingly dd arrived home from school today better than expected. Her main tic is a sniff/cough combo, and it has been every 5-10 seconds for months (with exception of the 2 days she received IVIG). Tonight, it was SIGNIFICANTLY less frequent...maybe only 100 sniffs & coughs the entire afternoon/evening! She still having other motor tics, but to be around her and hear silence for long stretches of time was amazing. Now this could all change tomorrow, but at least tonight I'll go to sleep on a positive note
  20. Dd6 had IVIG with Dr. B last week. The 2 days of IVIG we saw her tics start to space apart, and she even said that she felt like they were "slowing down". The next day her tics were still less, but we started to see an inability to sit still (something that had been gone for months). The days following, her tics picked back up to every few seconds, although she is having some pauses where she won't tic at all. These pauses are sometimes 1 minute...but can go 5-10 minutes at times. Over all, I'd say she is not worse off than before IVIG, but not too much better. The past 2 days she's star
  21. I'm bumping this in case anyone has any additional advice. I posted this on 8/13 regarding my non PANDAS (but that I sometimes question PANDAS) 4 year old son whose mycoplasma IgM, ASO & Anti DNase-B all came back high. I still haven't gotten any advice from the pediatrician regarding treatment, so I'm bringing him in tomorrow to demand something be done. Does a month of Azith seem like the right thing...or is something like Biaxin a better bet? I'm really concerned b/c while he's not showing full blown mycoplasma or strep throat symptoms...something is really off with him.
  22. Thanks. I'm concerned b/c Dr. B is recommending IVIG for my PANDAS child. I'm not sure if my son's titers will affect the timing of that, as I don't want to go through with IVIG if dd is simply going to be exposed to strep by ds right away. At the same time, I'm now thinking that dd's backslide that began in mid June, and took a further dive in July may be realted to ds's increase in titers?? Just a hunch.
  23. My PANDAS child is my dd, age 6. She sees Dr. B who feels that it is important to clear all family members of strep. My ds, age 4, has had numerous cases of strep in the past (dating back to 18 months old). He NEVER gets a sore throat, but does sometimes get a scarlet fever rash. Since April 2010, he has had 3 sets of ASO/Anti DNase-B tests. He's had 3-4 separate throat swabs during this time, but all were negative for strep. This being said, he's had enlarged red tonsils, what I believe to be a scarlet fever rash on his trunk, swolen lymph nodes in his groin and armpits (enough to cau
  24. Are headaches indicative of a herx reaction? Dd was on a 20 day course of Biaxin in March. During the course she had improvement in her PANDAS symptoms, but headaches were VERY BAD. They started on day 2 of the Biaxin, and were soon accompanied by tummy aches. Also, by day 18 she had a return of a "mystery" itchy, bumpy rash on her knees & elbows that she's now had 4 times (lasting weeks each time) over the past year. The dermatologist was not able to diagnose the rash. A friend mentioned that at least the headaches could have been a herx reaction. Does any of this sound like herx?
  25. Thanks for your replies. I was under the impression that this was more of an OCD thing, than a real physical need to urinate all the time. It's really tough to deal with b/c dd is ALWAYS saying she has to pee, but doesn't want to. I have been urging her to go and not hold it, but my doing this only makes her angry. However, when she does go, it turns into a 15 minute ordeal (just to pee) b/c she sits there forever feeling like she hasn't gotten everything out. Then she wipes over and over and over to get every last drip off of her. (She will literally wipe 10+ times on the toilet...then
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