JAG10

Nancy- my dd13 is starting this in a couple weeks. I'll keep you posted. Jill

A sulpha allergy like in Bactrum and other medications is different than sulphur. Not sure how this relates to SUOX. I could be completely off base here, but I think sulpha is synthetic, but sulphur occurs naturally in foods.

Registration is only $20 for one parent until Feb 15th!!!!! What a phenomenal opportunity!

Trudy Posner will be presenting a session on PANS on April 13 at the DVAEYC (Delaware Valley Association for the Education of Young Children) in Philadelphia, and also at the America Occupational Therapy Association conference in San Diego on April 25.

I'm going

I provide speech/language services for students both via IEP and 504 agreement. Some parents think a 504 isn't as legally binding as an IEP but this is not true at all. The difference between the two documents is the need for specially designed instruction for an IEP, which your dd does not need. For a 504 agreement, she does need a diagnosis which could be "Other Health Impairment" used often for ADHD. This could be used for OCD as well with accommodations for extended time. I have 2 high school students who has a 504 plans for language impairments of word retrieval- she simple needs longer to process and retrieve info and this plan has worked for her to be granted 1.5 time for SATs and AP exams as well as classroom tests. I was careful as her case manger to document statements from teachers year after year about her utilization of extended time. This is what the Boards were looking for and it was fine. Nobody believed it would work, not the psychologist or guidance counselor. But I've done this for 2 students. My point is that it might not seem like that big of a deal in 6th grade, but the stakes will get higher and the complexity of material in more advanced classes will escalate. You need to start documenting now and not wait until she absolutely must have extended time or she'll fail AP tests. My advice would be to talk directly with the school psychologist. Teachers can be well meaning; middle school and high school teachers are all about self-reliance which can prevent them from hearing what you are saying. The school psychologist should get the rituals and tell you exactly what she needs to issue a 504 plan. I believe there will need to be an evaluation by the school district first.

I was a casual acquaintance with a Vit D guru and he said to make sure you take Vit D3 with K2 for absorption. It seemed to make a difference because when I supplementing 5000 IU of just Vit D, my girls levels were still in the 20's in the winter. Swithing to 4000 IU Vit D3/K2, both girls Vit D levels are in mid-40's now. Doc does want them at 50. They sell Vit D3/K2 at Vitamin Shoppe

Hi Nojo! I remember you We have traveled a similar path with Dr. B (no lyme though.) My dd13 had her first IVIG 5/2010 w/Dr. K and her second with dr. B 2/2011, first every 4 weeks, then every 8 weeks, then 4/2012 we went to 16 weeks with her last one 8/2012. In Dec of 2012, I took both of my girls to see Dr. O'Hara to help us step-down off IVIG altogether and maintain their health. So far, this has been working. They are getting "regular sick" now, not behaviorally sick. They are getting fevers when ill. My dd9 never got to the point where she needed IVIG as we caught her earlier (still years after onset, but not as many years.) My dd13 still has some minor ADD like issues that completely resolve with steroids, but IVIG was not making a difference with. In a few weeks, we are going to try Amantadine for that. She started minocycline a few weeks ago and that has been helping some too. Minocycline is anti-inflammatory, neuro protective and neuro-restorative, but it can cause vestibular issues in girls (luckily, not mine.) Dr. O is very systematic and methodical. One of the things she started with my dd13 was IgG 2000 by Xymogen. She had us stay on Dr. B's IVIG schedule for late Dec., but then since she was doing well, cancel and reschedule for Feb. As long as she holds steady for Feb., we will cancel and not reschedule this time. She wanted her to go 6 months w/o IVIG before pulling her "place in line" at the infusion center. We have not remeasured IgG levels since Dec., so I can't tell you the exact impact of the IgG 2000, but her immune responses lately have been typical sick symptoms. Her IgG levels run about 100-175 below the bottom of the range for her age three months post infusion. http://vitaminde.com/igg-2000-df-120-vegetable-capsules-by-xymogen.aspx Then there is the question of puberty....not sure where your girl is with that. My dd13 began menses 2 months before her 12th birthday. I do think the steroids administered with the IVIG brought it on a little early. It's hard to say if puberty has pushed her body back on the right path or solely the succession of IVIG. Her C3D level in Dec was 8 with a normal range of 2-25 which is great news and her first normal C3D level. My dd9's C3D was 40, but clinically she's doing well, knock on wood. It was difficult for me to let go of the IVIG safety net; it worked well for my girl. But I knew we were at a point where we were only seeing "improvement" from the accompanying steroids. Ironically, the day after I called Dr. B's office to cancel her Dec. IVIG appt., I received a letter in the mail from BCBS denying renewal coverage for the next year of IVIG. For CVID, they said she had to go every 4 weeks at a lower dose, not every 10-16 weeks at a higher dose. God forbid they let physicians practice medicine according to their patients needs and responses. I'm really glad I made that decision on my own before I received that letter, but I also took it as a sign it was time to let go. I know you probably wanted research or a doc's opinion, but I thought I'd shared our anecdote in case it might help. I highly recommend Dr. O and the IgG2000 seems to be doing its job. Sending warm wishes and good vibes your dd's way! Jill

It is also Xymogen EP IgG 2000 DF vegetable capsules I ordered online, not from her office.

My dd13 has been taking IgG2000 for about a month suggested by Dr. O'Hara as a step-down from IVIG. Her last IVIG was in Aug 2012, with one 16 weeks before that and 8 to 9 week intervals before that. So far, she is holding steady with her progress. She takes 2 capsules/day in the morning. We haven't had her IgG measured since she's been on it but will do so in 3 months.

I answered the poll with my more significantly impacted dd13 in mind. My younger dd9 even at her worst would have never been dx'd with language, social or sensory deficits, but as an SLP I noticed word retrieval difficulties (more circumlocution, vague terms rather than specific, and fillers; like, um, uh) spike with both girls when in an episode of pandas/pitand. My dd9 doesn't become less social, but she does become more emotional/anxious which interferes socially, no? I didn't check sensory-motor, but when dd13 was at her worst she had significant vision issues...does that count? I guess it all depends on how many layers you have on your particular onion.

I had a follow-up phone consult with Dr. O'Hara yesterday....who is splendidly smart and my head was spinning trying to keep up with her. She said we need to raise dd13's essential fatty acids to help with her immune reaction and acne (which are related.) The good news is her C3D's were 8, well within 2-25 range (lowest they have ever been measured.) But her strep titers rose again; ASO 400 and DNAse B 569. And her HHV6 was high. Her acne is pervasive, all over her back and shoulders, forehead, temples, ears, nose and chin. (Wasn't pandas wrecking her childhood enough for one kid? She has to have the worst acne in her grade too??) sorry, I know this is a no pity-party zone. Long list of systematic suggestions of scripts and supps to give a whirl. The essential fatty acids was one; coconut oil (up to 3 tbsp/day as tolerated) and Cod liver oil (up to 1 tbsp/day) to also add 10,000 iu Vitamin A/day This item is one of her nine suggestions; I understand all the other ones. What does "not tolerated" look like? Loose stool? I'm guessing the 10K Vit A is included in all that oil? I'm just confused. Idk much about different supplements. On first glance, adding 420 calories/day to a 13yo girl who is 5'8" and 150lbs doesn't sound like a great idea to me. But when I google "coconut oil" there are all these hits about taking it for weight loss, so I guess I'm just looking for someone who knows way better than I to put my mind at ease. Thanks ladies

For those of you giving coconut oil....you give it by the tablespoon to your kid? Really?? I get that all that saturated fat is good fat, but 3 tablespoons of coconut oil is over 400 calories....is that how you are giving it? an extra 400 calories/day??? Cod liver oil too? 1 tablespoon suggested.

Hi Landamom, I was always confused about the whole probiotic thing; what, how much, when..... I took both of my pandas girls (who are doing really well) to see Dr. Nancy O'Hara as we were ready to get off the IVIG my older girl needed for recovery with Dr. B and I wanted someone to oversee that transition from recovery to maintenance. O'Hara is absolutely wonderful, btw. We've paid a lot of money for a lot of experts and she is expensive, but IMO worth it; sharp, snappy, organized, thorough. She told me to give my girls all their pre & probiotics at night. Florastor or Sach B is a prebiotic. Nancy is correct that Sach B is the same as Florastor, but MUCH less expensive. You need to give a lot of it, everyday, so we too go with the Jarrow brand of Sach B rather than Florastor. Dr. O'Hara recommended 3 Sach B and a probiotic right before bed. My dd13, the more severe pandas girl with more yeast issues, she recommended Klaire Factor 6 (1 capsule with the sach B before bed); my dd9 less symptomatic takes 3 Sach B and 1 Klaire complete. This has been very helpful; stabilizing I would say. Interestingly, I just got a ton of lab work back from her office. Most of it looked very good...except the strep titers for dd13: ASO-400 and DNAse B-593. The good news is that there was no uptick in symptoms which shocked me. Her last IVIG was in Aug. and in the past there was a correlation between high titers and my girls' symptoms....well I'm going to take that lack spike in symptoms despite rise in titers as a good sign. Even dd13's C3D levels, which had always been elevated were well WNL- YAY! DD9's C3D's were elevated, but symptoms are in check, so...on we march. Anyway, I would definitely go the Sach B route and then determine what probiotic you want to complement that. One more point; pre and probiotics are important aside from yeast, but with my girls the systematic yeast (not vaginal) did not become an issue until puberty. Hasn't been an issue for dd9, but when her older sister turned 11it became problematic. Just another little anecdote. Take care-Jill

Rowingmom, PROMPT therapy for speech/articulation is excellent if you can find it. I've only completed the introductory course and I make so much more progress with my students and at a much quicker pace. Laura- yikes, what a hornet's nest that resulted from that blog post. She probably had no idea something like that was a possible result. The Internet is a tool just like any other that can be used for good or evil. Thank God we have all come together for the health and recovery of our sick children. Thank you, Sheila for giving us a place to call home and "work the problem."

Diagnosing children has become so tricky in the past 10-15 years. All we thought we knew, well, we might not know after all. And some professionals are more willing to admit that than others. ASD has become the catch-all for anything neurologically atypical: ANYTHING. It really has become meaningless as a dx; except it gets you better coverage and services through insurance and schools. Ahhh, but now we shall add the stigma of the CT murderer into the mix. Oiye! ASD had become a palatable diagnosis for parents. I get this as this happens a lot with speech/language impairments as well. Young child, apprehensive parent....clearly more going on but we'll just go with speech for now because it isn't so intimidating; ok, whatever gets the parents on board so I can help this student. Often students are being diagnosed ASD very young and then that's it. Well, either ASD is a fluid diagnosis or was an incorrect diagnosis to begin with or some combination of both. I have no doubt when my dd13 was in the midst of the worst of PANDAS I could have gotten her diagnosed an Aspie. But as an SLP, I knew that was not what was going on and obtaining that diagnosis wasn't going to do anything for her, so she never had an ASD dx. Being a sociopath has nothing to do with ASD. Being more of a loner, difficulty expressing yourself under pressure, difficulty navigating the social landscape of life-yes, but not being a sociopath. Here's an article related to a fear simmering..... http://www.nationaljournal.com/politics/don-t-stigmatize-asperger-s-syndrome-in-wake-of-newtown-massacre-20121216

I took the girls to see Dr. N O'Hara in CT. She recommended taking 3 caps of Sach B as well as Klaire Complete for my younger girl and Klaire Factor 6 for my dd13 with the bigger yeast issues. This is at night, before bed with nothing else but zinc acetate. The Sach B is a prebiotic and the Klaire is the probiotic. Dd13 (today is her bday;AHHHH I'm mom to a teenager!!!!) is also on an anti fungal ketoconazole which she takes after school. In the morning, she takes Zith 250mg, milk thistle 175mg, and IgG 2000. We are really hoping the zinc and the anti-fungal will help with acne. She did that Wood's lamp test and lit up with yeast, all over her back and belly. She was a little foggy and silly for about a week, but okay now. The "die-off" symptoms can last 7-14 days. Younger dd9 did not have significant yeast issues, but increasing the Sach B and Klaire has improved her focus and ability to work independently. Dr. O is doing more metabolic testing and such to see if they need anything else. Hope this helps someone. Dr. O'Hara is wonderful and she really compliments the care that is outside Dr B's main expertise, IMO.

If you are really good with the sunscreen, then it doesn't matter if they are out in the sun. We need a good 15 minutes in the sun daily, without sunscreen, during peak hours to get adequate Vitamin D.

Vit D levels are important, especially during the school year when the kids don't always get outside between 10-2pm. The farther north you live, the more important supplementation. Lots of studies related to Vit D levels and happiness, depression, anxiety. Also, I've read to give a vitamin D3 supplement that is combined with K2 for better absorption...which absorption is everything. There are several at Vitamin Shoppe.

We use Olivus which has a "regular strength" and then an "extra strength." My girls are still on Zithromax, but my husband and I use the OLE for us to help protect them. We up to the "extra strength" ones if we feel something coming on. It is especially important for me as I'm an SLP in close contact with many children with special needs, lots of mouthing, not real good at wiping noses, washing hands, ect. So if you are in a high risk/exposure field like I am, I would seriously consider at least using it for yourself.

In addition to possible flare from exposure (which should be checked out), yeast can also cause ADHD problems. Has your son been on abx? For kiddos taking daily abx, it doesn't take much to throw gut flora out of balance. For a long time, people on this forum would tell me the ADHD problems I was describing sounded like yeast and I would dismiss it.....but they were right and I was wrong! A good anti-fungal (which definitely made things worse before better) in addition to a strong prebiotic and probiotic regimen made all the difference in the world! Good luck!

RIDICULOUS!!!!!!!!! And underscores why parents should not/cannot accept these ...."we'll call you with lab results IF there's a problem" policies.

Hi Laura, My graduate students do a good bit of the hearing screenings in my elementary school because they need the hours. Once they get their 10 hours, the nurses do the rest. Amy is correct; it's just a screening. The conditions are horrible to screen hearing....between outdoor recess, lawn mowers, screaming kids, fans/heaters/blowers, ...it really is ridiculous. Passing at 25 or 30db would not concern me at all. The colds definitely play a role as well. We had one kindergarten student who legitimately failed one ear (not related to inability to follow directions, distraction or otherwise confused.) Turned out she was on amox for an ear infection. Re-screened two weeks later and passed. If you can get the audiologist covered and it gives you peace, go for it. That said, there's a good chance it is nothing. Happy Thanksgiving friend! Jill

Wornoutmom, I remember reading your posts years ago when I first discovered pandas/pans was in play with my dd12 also. I remember your pure sorrow and frustration obtaining a diagnosis and it highlights how much some things have changed in a short amount of time. Many of the folks who contributed daily at that time no longer linger here. My guess, my hope, my prayer is that that is because they too have found relief for their children. With relief for the child comes relief for the entire family. Treating this disease is often very complicated with no single doctor possessing all the keys to wellness. But as difficult as the journey to wellness is, it pales in comparison to the despair and darkness of not knowing what is wrong with your child or the hopelessness of having the "courage" to try psych meds (no parent really wants to do that) only to see each and every one fail to bring your child back from madness and wonder....well, now what? I share your joy, relief and tenacity. Not easy, not perfect, not cheap and not always consistent. Still blips with illness, but there is an action plan that works when that occurs. Still an immune system that is more fragile than most (as evidenced by too much Halloween candy resulting in yeast imbalance.) Not cured; managed. 2-3 years ago I would look at your posts, your username and think...I'm right there with you, sista WORN OUT! I'm not so worn-out anymore and it sounds like you are not either. So cheers to us, those who blazed the trail before us and those who will come behind. The PANS community...helping parents save one child's life at a time. Warm wishes and high-fives to you and your young man Jill

21/2 years ago Dr K described changing the hearts and minds of the medical community "like turning an ocean liner." The public will be swimming behind that ocean liner. We parents have to be very practical and explicit in our children's care. This is a fight that will benefit the next generation. Ignore the fools. Show them up with your healthy, resilient children wiser than others in many ways. Everyone on the east coast, stay safe!Jill