JAG10

I'm sorry I don't know your dd's story. How did you know she had strep? Did she have regular "sore throat/fever" symptoms? Wonderful news!!!!

I was wondering if along those lines, what you are seeing is a result of zinc/copper issues. ????

Did anyone see Alicia Silverstone on the news today? She chews her toddlers food and kisses/spits it into his mouth for him in home video. Maybe she's part penguin....

In my elementary building, the principal (very Type A) uses the bathroom in the nurses office rather than the faculty bathroom. Perhaps you could get the nurse to commit to ensuring your child wash his hands and use sanitizer since a nurse's presence will be a point of consistency? In my 15 years, I've never seen a child in the adult's bathroom. Even visiting parents with toddlers/preschoolers use the student restrooms and parents go in with them for assistance.

Hi Lisa, For what it's worth, I think this is a "good" sign. My dd12 has gotten headaches many weeks after IVIG. Her first infusion, she got the mother of all headaches the day after, but also headaches at 3 weeks post and 5 weeks after that (she actually was heading to field hockey, vomited in a bush, got a headache for 15 min and as fast as it appeared out of nowhere, so did it disappear.) The closer she got to "neurotypical", the less the headaches/nausea appeared. Her first infusion was with Dr. K (5/2010) and when I told him of her fleeting bout of headaches, he celebrated. Fingers crossed it is a sign the IgG binding with the bad stuff and doing its job! Jill

Yes, even chronic cases. I haven't been on his site in awhile, but he used to have a paragraph about the necessity of treatment prior to puberty; that treatment was just as effective caught early or chronic prior to puberty. I'm not even sure he subscribes to that anymore as he has taken many post puberty patients since then as well as young adults. I think it's effective, but I don't think it's a cure...which used to be a big debate on here. It seems to me like chronic kids are more likely to relapse. Some people who have caught this early have had great success minimizing relapse. My girls are apparently asymptomatic to A LOT, so I'm intrigued by this alternate fever response theory. My girls don't get them; acute strep, myco-p...nothing. Me? I've been on my back for 4 days with a fever (and I got a flu shot) so I have no idea what's going on. No "sick" symptoms is one of my greatest challenges to managing this beast. Without blood tests, I have no idea what's going on, and of course you need two to tell what's really going on....it is a tough road. But I really think this year is worse than others, every 5 years seems to be brutal for my family. Last time I went to doc sick was 2007 and that's when my dd12's WHAM spiral occurred. You mention no "sick visits..." I remember the nurses looking at me saying WoW, you haven't been here since last well check?!? That was because we saw someone private for all the psych stuff and there wasn't a sniffle. sigh

OMG, this thread had me cracking up!!!! Especially the dipper! My FIL coached my SILs in softball and used to bring a pail of water and a dipper. If a girl was thirsty, that's how they got a drink. My dh and I both come from big food sharing families. It's really been a shift in mindset that has taken awhile to occur. My dh was infamous for this one....putting a straw in a juice pouch and taking a sip out of it before handing it over; why? Because as soon as a little hand grabs it, they squeeze and it drips onto floor or table or whatever. It's a lot of effort to change these habits if you grew up in a sharing family. I don't think it has a fig to do with affluence if you grew up on a shoe string, those are the habits you developed early on. Working in an elementary school, you should see what goes on in the cafeteria among kids! They take the "Pound of dirt before you die" to totally different levels. My mom has laughed at me asking since when did I become a germaphobe? Since I've been shelling out tens of thousands of dollars and buckets of tears trying to get and keep these girls healthy mom! She tries to remember, but I know I have to start from scratch at our next visit. Honestly, I worry more about the little cousins than the adults. Their noses are always running and they cough all over the place and always have strep. It's everywhere which makes all of this such a daunting task. No bubbles exist.

One doc told me the body can start making antibodies to IgA with repeated IVIG. There is a test for it. How low was it?

Hey TENACITY!!! One of my favorite usernames!! You and NeverGiveUp. How have you been? Update please! Jill

My understanding is that the Greater Good Movie is playing this Saturday at 1:00 pm, not continuously. We have Direct TV and when I went on Direct TV's website, it is listed on the program guide for that time and date. Double check the station is correct for FIOS, I pulled that off of wiki for the Current TV channel. I'm going to record it myself, 1pm on Saturday is not a time most of us can kick back for a flick. Thanks for the trailer link, Laura! As far as I know, it is not available online. There is a Greater Good Movie website that lists showings, but they are all over the country.

The Greater Good Movie will be on TV this weekend, Saturday 3/24 @ 1pm est On Current TV which is: Direct TV CH358 Comcast CH107 or 125 FIOS CH192

Oh Lisa, live and learn. In Oct 2009, my dd12 saw Dr. Elia at CHOP for another opinion. She suspected PANDAS, but thought she had it too long to treat. She made a list of 9 recommendations starting with SSRIs.....CBT.....H1N1 vaccine......Flu vaccine.......ASO, anti DNAse B. Yes, the pandas expert who sat at the NIMH consortium in 2010 as CHOP's pandas bigwig recommended H1N1 and Flu vaccine before serum markers for strep. And I followed her recommendations. Those were the last vaccines my girls got. I don't know that my girls got any worse, she was pretty messed up, so it would have been hard to tell. My point is that someone regarded as an expert in pandas was RECOMMENDING vaccines in the not so distant past. I'm not convinced all vaccines are bad for our kids, but as long as the medical community refuses to take an honest, trustworthy look at the subject, we won't know which ones are necessary and not risky. I hope he feels better soon.....you too.

The Analogy Queen strikes again!!! God loves you, Laura.

That's a good question about the Hib titers as children age. The lab reference range on her report indicates her level should be greater than 1.0 mcg/mL and my dd's was reported as 0.48 L (low) Just a side note here.....one thing I've noticed in comparing my girls' labs from year to year (since late 2009 to present) is that the reference ranges are moving around quite a bit and all within Quest Laboratories. As mentioned above, the normal range for C3D used to have an upper limit of 8, now it is 25. Anti-DNAse B used to have an upper limit of 187 and now it is 376. I checked to make sure this was not happening due to their ages; it is not. Regarding Goodman's comment regarding anti-DNAse B, yes...that is what he is intimating...that anti-DNAse B can rise from something other than strep. I have no idea was "epitope spreading" is, but I did read something about liver issues interfering with accurate results? I haven't been able to find much about anti-DNAse B that isn't related to strep though. Who would know about that? Someone with an expertise in strep??

Here is a copy of Dr. Jory Goodman's reply I referred to in last post: Hi Anonymous, Jgoodman has commented on: "EVIL PANDAS: A Scourge on the Brain" Subject: Good Info Hi. This is the dat we need. I've had a boy with severe PANDAS (tics,Tourette's) and ADHD, Very high anti-DNAase B antibody. Only H. Flu intonsils. Complete remission and titre dropped to normal after surgery. Meansseveral things: 1. PANDAS is caused by many things other than strep (see my most recent postshere and on my own blog); 2. The antibody IS NOT specific for strep and may rise secondary to otherinfectious agents 3. Research obsessively focused on strep is too narrow and will miss manythings. 4. Another illustration that removal of T & A definitely benefits manypatients. Happy to know your child is doing better. Thanks, Dr. G You can view the comment at the following urlhttp://www.psychologytoday.com/comment_redirect/216712

I was one of the parents concerned about the meningitis conjugate vaccine. My girls are not protected from 2/3 because even though they were vaccinated, they failed to have an adequate response to all 14 serotypes as well as the Hib vaccine. Why would I think the meningococcus vaccine would even work for them? Both of my girls have C3D in the upper twenties, which is slightly elevated. The lab reference range used to have an upper limit of 8 the first time we tested, dd was 25. Retesting over a year later, she is still 25, but the reference range upper limit is now 25..... So I don't know how to qualify improvement? If you follow Dr Jory Goodman's blog, he is a big T & A removal advocate. He had a patient with very elevated anti-DNAse B. Post surgery, the tonsils were tested to find no strep, but positive for Hib. ???? After the surgery, the DNAseB dropped indicating it was the Hib infection elevating the titer. I thought an Hib infection would put a kid in the hospital??? Does anybody who is just showing behavioral signs of illness test for Hib? Why are these titer tests that are supposed to be specific cross reacting?

Quote Three pathogens(organisms) are associated with 80%of cases of bacterial meningitis: Hemophilus influenza type b, Streptococcus pneumoniae (pneumococcus) and Neisseria meningitidis (meningococcus). Haemophilus influenzae type b was the most commonly diagnosed bacterial meningitis in the United States in the 20th century and nearly all cases occur in children under age six. The H. influenzae type b (HIB) vaccine was introduced in 1988 for toddlers and, in 1991, for infants and is recommended by the CDC for children at two, four, six and 12-15 months. Pneumococcal meningitis caused by Streptococcus pneumoniae is most frequently observed in adults over the age of 30 years but also can affect children. 84 different serotypes of S. pneumonia have been identified that are associated with bacterial pneumonia, pneumococcal meningitis, endocarditis, otitis media (middle ear infection), mastoiditis, sinusitis and conjunctivitis. A pneumococcal vaccine containing 23 strains of pneumococcal is recommended by the CDC for adults over age 65. A pneumococcal vaccine containing 7 strains of pneumococcal was introduced in 2000 and recommended by the CDC for children at two, four, six and 12-15 months. A new version containing 13 pneumococcal strains was introduced in 2010. Meningitis associated with Neisseria meningitidis is most often encountered in children and young adults. In 2005, a meningococcal vaccine was recommended by the CDC for 11 year olds and college students, especially freshman living in dorms on campuses. In 2010, the CDC expanded meningococcal vaccine recommendations to include a booster dose of meningococcal vaccine for all 16 year olds in addition to the first dose given to all 11-12 year olds.

My problem with the "sudden onset" parameter has always been that it is so problematic for the under 5 y.o. children. This spectrum of illness needs to be looked at without taking ANYTHING for granted. The lower age limit is set at 3...why? because you can't get strep younger than 3? How certain are scientists about that? What about all the chronic ear infections in toddlers, they can't communicate what is going on with them! Then you add in the "normal" periods of terrible Two's and Three's.... it's a mess to figure out. My 2 y.o. nephew had strep for months. My SIL only kept taking him back to get "re-swabbed" because of my girls. He no longer had strep symptoms, but was still positive. It took 4 different courses of abx for him to get rid of strep and then they finally pulled his tonsils. He's 3 1/2 now and has never had a solid bowel movement his entire life. Her pediatrician keeps telling my SIL she's not worried about that?!?!?! What is wrong with these doctors!!!!! My dd12 had a dramatic worsening in 3/2007, but that is when her condition went chronic. I was definitely concerned before that, so I guess I missed the sudden onset, that's what Dr. K told me. My dd had sky-high anti-DNAse B titers and elevated ASO. At first I thought that definitely meant strep, not sure of that either. Lots of speculation that DNAse B can rise due to other infections.....Again, how do you get to the bottom of all this when you can't take for granted that "common medical knowledge" even about lab results is actually accurate??? Why is the medical community so worried about parents chasing the wrong path with abx and blood tests, but not so worried about chasing the wrong path with years to find just the right psych med? It's Pandora's box that they don't want to open. Shame on them! Shame on them all.

Philly, I haven't followed this thread - must've made my ears ring when you used my name in your morning post. So I apologize for jumping into a topic I haven't taken the time to read. But your mention of cognitive issues, and how they don't fit into Pandas - plus your mentioning all that time sitting on patio for many many months...both hit home. I have done both. You could excavate old posts from '10 and find me in knots because my DS had cognitive issues no one else seemed to have (except for JAG, who threw me a private lifeline on this issue ). I'm not here to make you believe in co-morbid. I can only tell you that for my DS, it's turning out to be layers. In hindsight, we've found that he had a zinc/B6 deficiency - either genetic, via poor diet, chronic illness - or who knows. That set him up for struggles with infections. Then undiagnosed lyme. Then strep/Pandas. Over 3+ years, we've unraveled many knots. We did many aggressive treatments. No need for gory details. Lots of symptoms responded. His cognition remained hindered. I told myself, others told me - "well, it takes time for the brain to heal." Time didn't heal. What did the trick for him was treating the nutritional deficiencies he had. - notably the zinc/B6 pyroluria. When we started treating that last August, it was a "holy sh**" moment. Within a week, it was like watering a parched plant. He changed. He grew - physically and mentally. Within months, he blossomed. He caught up. For the first time ever - EVER - his teachers couldn't tell he was different. $35,000 in medical bills and 3 years and then... 4 silly pills, for $1.20/day, brought back the son I used to know as a toddler. Yes, we still do more than just this. There may be one last lyme battle ahead, he caught strep a month ago and had a mild flair. But it's an entirely different game now. He doesn't fit into one box. He's not neatly Pandas nor neatly lyme. I can't tell people our story because it takes too friggin long and sounds just too nutty. But...he's better. This weekend, family saw him for the first time since last July. All they could say was "Who IS this kid???!!" My answers won't be your answers. But yes, I was 100% sure of a lot of things that turned out to be...not wrong, but incomplete. It's a journey. A very humbling journey. Hang in there. I agree with both of you ladies. Prior to pandas dx, my dd12 was diagnosed with one psych dx on top of another followed by the stats of co-morbidity. Some of which made no sense to me at all, but you can back your way into many a diagnosis. I remember feeling dumbfounded my poor baby could be that unfortunate to have that many dxs. I remember some wiser, more experienced parents advising me of the importance of time in the healing process. For some reason, my dd hovered around that 85-90% mark. There was something else there and for my girl it turned out to be intestinal yeast. Since that has been treated and since her last iVIG, she just keeps getting better. Before this was something that only happened with prednisone. Her cognitive clearing isn't as fast or immediate as it was with the steroids, but she is reaching that clarity without them and that is an amazing relief to us. Now we are at the point where "time" is working for her in a healing way. ITND-infectious triggered neuropsychiatric decline; I think that would cover everybody.

WOW!!! You do not disappoint, do you?!?! I see a lot that I am familiar with and a couple that might be worth exploring. What a wealth of information!!! My dd12 is still on abx and I wanted to know how you determined the amount and ratio of probiotics you are using? I've asked a couple of doctors and they don't seem to have any specific knowledge by responding....what does the package say? She tested positive for yeast in the stool, so I want to increase them, but not sure how or how much. I was also looking into these shakes by Herbalogica that have many of these vitamins, supplements & probiotics. They are marketed for weight loss, but they seem pretty healthy. Have you done any of the genetic testing for MTHFR? That's my next step...to test MTHFR, whole blood histamine, zinc and copper (again.) Plus she's battling significant acne despite all the abx. The Proactive has made a dent in it, but the dermatologist added topical Differin to her regimen. My husband and both of his sisters took Accutane in the 80's with a family history of scarring acne. I can't even imagine how that would affect my girl! Thank you so much for your generosity and willingness to help all of us so much. Your son is so fortunate!

EAMom; you're a Nancy Drew. I've got your back if she comes after you

SUPER POST!!!!! Nancy, when you have the chance, would you mind chronicling what you've found most helpful, somewhat helpful and least helpful? Your ds15's daily medication and supplement regimen? Were there any supplements you really felt needed to be increased with adolescence/hormones or perhaps changed dramatically? If you don't mind....obviously every child is different. thx Jill

I love that!!! Pandaversary!!!! Right there next to you both with 1 year of regular interval IVIG this month. I will just say the onset was not sudden/overnight nor has the recovery been either! And I so feel for you moms to have to dig out of the he11 hole of pandas and adolescence simultaneously!!! I have no doubt that your son is completely aware of the sacrifices and battles you have waged on his behalf. We are all so fortunate to have each other.

Hi Abbe, I read your blog about your experience at CHOP. We were there in 2009, but through Behavioral Health, not Neurology. Dr. Elia was the first to suggest pandas to us and for that I will be eternally grateful. But she was unwilling to treat with abx or immuno-modulation therapy, so we quickly moved on. I'm happy to say my dd12 is soooo much better than she was two years ago. She does still react behaviorally to illness as does my dd8 who has managed with abx only. Does your son respond positively to ibuprofen? I agree about the milk thistle. We've also tried AbsorbMore Toxins which is Bentonite Clay and Activated Charcoal; that's helped. My dd12 recently tested positive for yeast via stool test. She took Diflucan for weeks, got worse initially (we used the absorbmoretoxins then) and then improved after 9 days. We adapted to a low yeast diet and so far so good. But I became more vigilant about the probiotics and I'm still not sure I'm giving enough or what enough really is? I hope he gets some relief soon! Jill

Could you please elaborate on this? My girls see Dr. B and he has never said anything that indicated this, but ASO/DNAse B go up, he treats strep; myco-p IgM goes up, he treats myco-p. How does he explain the cross-reactivity? I mean, if noneof the labs measure what they are reported to measure, what good are they???? **Oh, I wanted to add that there are a few of us on here who have noticed our kid's symptoms rise and fall with the level of DNAse B titers, so I'm not saying your doc is completely off the mark, just wondering if he provided any explanation?