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worriedmommy

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  1. She was igm positive. Not a light up bold positive but Igenex positive that we confirmed with a strong herx reaction to lyme treatment and ART. Keep in mind also that these kids with elevated immune complexes may be falsely negative because the antibodies in which the western blot look for, are bound within the complexes. They are not circulating freely and may not register on a blood test. Some lyme doctors start treatment and retest along the way looking for the patient to test "more" positive as they are treated. Our lyme doctor did say that an elevated C3D is common with lyme. My daughter has done well with lyme treatment and I feel like we have gotten to the root of her problems now. It has not been easy because it is hard to stay strong during a herx and they can last for weeks. I wish I could say she was 100% but she is not. She still has mild but frequent tics. We hope that she continues to improve with treatment.

     

    Thank you for the info. I'm happy that your daughter is improving.

     

    One question...what is ART?

  2. My daughter is the one wendy is speaking of...she had very high C3D always above 80. At one point after ivig they went down but when retested 6 weeks later (no ivig in between tests) they were back up. So theoretically ivig will break up the complexes if the infection is cleared but they will continue to form regardless of ivig if they are still infected. My daughter had mycoplasma, bartonella, and lyme. Our lyme doctor did say that they are common in lyme patients and had seen them as high as 200. He said they should resolve with treatment and did not feel the need to monitor them during treatment. They take a long time to clear. We stopped doing the ivig's as it seemed pointless with all of the infections left untreated.

     

    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. Dr. B has had experience with C3d levels and them rising after hdIVIGs. He should have some answers for you. The one little girl seeing Dr. B thought to be PANDAS eventually discovered Lyme/Bartonella/Mycoplasma and a virus...... her C3d's were over 100. The hdIVIGs were stopped last August due to chronic infections and is doing tremendously better on combo'd antibiotics. C3d have not been tested since last summer and Lyme diagnoses. Current Dr. says they typically resolve with treatment.

     

    -Wendy

     

    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.

  4. 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.

    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. 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!

  7. 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. :(

  8. 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!

  9. 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.

  10. How long has she been on Azithro/Omnicef combo and what was her response: worse... then better, still worse? If she's been on it for at least three month you may already have converted results. However, my friends son is 10 months into Lyme treatment (huge improvements) and they are still hoping for converted results (he is positive for Bartonella and IND for Lyme). So, you may or may not see an additional Lyme specific bands pop up with antibody testing.

     

    With the Dot Blot/PCR Urine testing they are loading up on antibiotics to create die-off into urine. So they would probably add to your Daughter's current antibody regimen to help. For my husband they did two antibiotic shots the first day (one was Bacillin), Dorxy, Azithro and Tindamax for the next six days. We did something similar for my son but I can't remember exact protocol.

     

    Have you seen an LLMD yet? If not do you have one in mind? If so, have you called to get on wait list? My general feeling is she'd be well served to see if Lyme protocol helps. Unfortunately, it may take up to six months or longer to know if there is improvement.

     

    -Wendy

     

    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.

  11. 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?

  12. 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!

  13. 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 classmate, was even more confirmation.

     

    I'm just hoping that as those with strep get better, dd's symptoms will subside. I'm a bit unsure about that, however, as her worst exacerbation every happened last February when she had 11 classmates with strep. We've been battling that episode ever since...and it was JUST starting to get better, when this hit.

  14. 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 things in motion, even though the abx is helping her to NOT get the infection?

     

    I want to believe that her current symptoms are due to this exposure.

  15. 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 :)

  16. 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 started to have some fears again, including nightmares. She also is afraid to be alone in a room. These fears had been gone for months. I've read many times about "turning back the pages" post-IVIG, but it's so hard to see when it's your child. She's feeling very upset that IVIG didn't work! I've explained that it takes time and that this is normal, but it's killing telling her this when I have no idea when or if things will improve.

     

    For those of you whose kids had symptoms either pick up, or not improve the first week or so after IVIG, how long did it take to see improvement? Was the improvement sudden, or gradual?

     

    She's scheduled to get a 2nd IVIG in November. I really would like to see some proof that this is working before we do that.

  17. 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. The past month he's been extremely tired, very congested, dry hacking cough, a rash on his torso that's come and gone, his cheeks were extremely flushed/sunburned looking much of July & Aug (although he was NOT sunburned), and he has a swollen lymph node in his groin (seen on ultrasound) that has caused him to limp from time to time. He had a negative throat culture in July...yet his ASO & Anti DNase-B rose since June. My fear is not only that he is exposing my PANDAS 6 year old to infection, but also that something is really amiss with him. During this time, his behavior has been terrible...lots of anger, screaming, comments about his brain, and struggling to find words when he speaks.

     

    ANY suggestions for me going into this doctors visit would be greatly appreciated.

  18. Our whole family was elevated on ASO - I came in at 443 last test, our youngest was 597. None of us has ever had a positive throat culture over past 3 years, and no overt symptoms of strep throat.

     

    I was put on a month of zithromax after initial elevated ASO (303) in March (but low dose - 250 mg daily). In June, when I re-tested, expecting that it would have declined, it had risen to 443. I was then prescribed a month of clindamycin (along with the rest of our family) to try to clear everyone at the same time.

     

    We're still waiting to re-test after the clindamycin. I'll let you know how it turns out for our 2 non-PANDAS boys (ages 4 and 10).

     

    P.S.: our local docs are baffled as well. Say they've "never seen anything like this" with entire family having elevated strep titers but no clear symptoms. Guess they should meet more of us wacky PANDAS clans, eh? ;)

     

    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.

  19. 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 cause him pain), and lots of sinus/allergy issues. His results were as follows on 4/28/10, 6/5/10 & 8/2/10:

     

    ASO = 369, 302*, 362 (Normal range for his age is 0-70)

    Anti DNase-B = 346, 353*, 405 (Normal range for his age is 0-250)

     

    * I should note that he was treated with Azith and Bactrim after this between the 1st & 2nd blood draw, which may account for the ASO dropping. However, I'm not sure what to make of the increase. My thought is that he has an active infection

     

    Also, his Mycoplasma IgM has been high all 3 times at 1.46, 1.26, 1.48. Mycoplasma IgG has been normal all 3 times.

     

    Anyone have experience with treating siblings of PANDAS kids when throat cultures are negative and no fever. The pediatrician doesn't really know what to do at this point. Ds is not a patient of Dr. B, and since he is "out of network" for our HMO it's expensive to go to him.

     

    Thanks.

  20. 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?

     

    I should mention that she's been on Azith and Omnicef since then and has not had the dramatic headaches that she had while on Biaxin. She did, however, have a return of the elbow/knee mystery rash after starting Omnicef in July. She's still on the Omnicef and the rash has now disappeared.

     

    Dd does have a history of a bite 2 years ago. We don't know what bit her, but it did get very hot and swollen. I questioned Lyme at the time, as I felt there was a faint bullseye around it, but the doctors told me that if it was Lyme the bullseye would be dark. They diagnosed her with cellulitis and gave her a 10 day course of antibiotics. The bite got better, and I really never thought about Lyme again until her PANDAS diagnosis this year. In March she had a Western Blot by Quest Diagnostics and it came back positive for band 41 IgM & IgG, as well as band 66 IgG. We just sent off her blood to Igenex yesterday, so hopefully we'll have more answers soon.

  21. 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 stand up and wipe 1-2 more times.) Once all of this is done, she pulls her pants up, washes her hands, and then announces that she has to pee again.

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