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Everything posted by JAG10

  1. Nancy- my dd13 is starting this in a couple weeks. I'll keep you posted. Jill
  2. 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.
  3. Registration is only $20 for one parent until Feb 15th!!!!! What a phenomenal opportunity!
  4. 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.
  5. 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 lo
  6. 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
  7. 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 earli
  8. It is also Xymogen EP IgG 2000 DF vegetable capsules I ordered online, not from her office.
  9. 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.
  10. 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 coun
  11. 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 h
  12. 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.
  13. 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 i
  14. 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."
  15. 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
  16. 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 di
  17. 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.
  18. 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.
  19. 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.
  20. 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!
  21. RIDICULOUS!!!!!!!!! And underscores why parents should not/cannot accept these ...."we'll call you with lab results IF there's a problem" policies.
  22. 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
  23. 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 al
  24. 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
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