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  1. My son has a primary immune deficiency, Celiacs disease, PANDAS, and lots of environmental/food allergies. He received his first dose of IVIG on Wednesday--only 10 grams for his weight of 56 pounds. This is much lower than the typical PANDAS dose, but is the dose for a primary immune deficiency. We saw amazing things on Wed., Thurs. and 1/2 of Friday (more articulate, not easily frustrated). Friday afternoon and today, he is struggling again. He bit his brother, is obsessing with our dog again, and is just generally showing a mild PANDAS exacerbation. Does this occur with IVIG (low dose)?
  2. I just wanted to also suggest our Doc in Melbourne FL has a second location in Irvine, CA. I don't know if that is close enough, but if you want someone to physically see you child, it would be worth the drive. I don't know how often his is in Irvine, but maybe it is worth looking into. He is an awesome PANDAS doc...also a DAN doc. My boys have PANDAS, and I know he has treated many others with it. www.rossignolmedicalcenter.com
  3. I read an awesome book called "The Minds of Boys, Saving Our Sons from Falling Behind in School and Life" by Michael Gurian. It really has impacted the way I work with my ds7 and ds6. Your son is totally doing what comes natural to boys--immersing themselves in one topic (reading) for long periods of time. The author even did brain research and showed images of the male brain at rest vs. the female brain at rest (way less activity in the male brain at rest, whereas the female brain was still firing away because as it was explained in the book--girls are more apt to multi-task). The big t
  4. Good point...actually Dr. Murphy was the first to suggest that he had an immune deficiency. We followed up with a local immunologist (Melbourne, FL). I am going to see if I can get in to Dr. Murphy for the referral...he has definitely had non-strep triggers and his baseline has plummeted since Dr. Murphy had his levels checked a year ago. Thanks...I really appreciate your input so much!!!
  5. I was stonewalled with our insurance company. My son's pediatrician isn't willing to order IVIG based on the PANDAS doc's recommendation because he is a DAN doctor and she fundamentally disagrees with his position on immunizations (that is a whole separate issue--sigh). At any rate, she said she's willing to order IVIG if "someone smarter than her" can recommend it...ds was seeing Dr. Murphy in one of her studies. The pediatrician said if Dr. Murphy recommended it, she'd do it. I don't think Dr. Murphy will order it--I can check into it, but I think she just sticks with abx. I tried to co
  6. I have heard from Dr. Murphy and my son's current PANDAS doc that it is likely a PANDAS exacerbation will occur when we get our child immunized. His current PANDAS doctor even said if it was my kid, I wouldn't immunize. On top of that, he wasn't sure if he could pull him out if/when he did exacerbate (his last exacerbation was awful--I know you guys get that totally). We are trying to get IVIG covered through our ds's immunologist, but he wants him immunized for diptheria, pneumococcal, and tetanus so that when he rechecks his titers, he can determine if he has a transient form of hypogammag
  7. My ds6 and ds7's pediatrician (no longer their pediatrician): I've had two other patients with severe tics that completely went away with antibiotics, but I think it was just coincidental.
  8. Oh yes, I believe I do have PANDAS and did as a child. My husband is convinced he also had PANDAS as well. What is very timely about all of this is that my husband and I keep testing with elevated titers (mine in the upper 300's, his in the upper 200's). I have been severely depressed, increasingly OCD, can't sleep, moody, even urinating frequently (4-5 x's per night )!! I had always attributed my depression etc. (except for the urination at night) to the stress from having PANDAS kids and my father passing away. (Side note--My Dad had mild Alzheimers in September 09. He tested positive f
  9. Hi Wilma Jenks, As a result of all of the stress from having two PANDAS kids, my doc tried a few antidepressants with me. One day of zoloft was a nightmare...Celexa was equally a nightmare. I felt completely out of control of my body/thoughts--and I was only taking 10 mg/day for three days. I would wake up at 2-3 AM and feel like I had just consumed a gallon of coffee. I was literally shaking. I cannot fully describe the feeling of being out of control of myself during those three days, but it was bad, bad, bad. Needless to say, it scared the dickens out of me, and I stopped taking it.
  10. PS: Stephanie has great points too. We didn't have the other issues initially, but had to switch to augmentin, flagyl etc. to get rid of clostridia etc. Scott will run labs and get your dd on the right course!
  11. With azith., my son stayed symptomatic for several days, then I slowly started watching a drop off. With omnicef, it was a slow, steady drop day after day. I remarked about this to Dr. Murphy one time and she said that made sense to her because of the way the medication was formulated. I hope that helps...
  12. I am not sure if it is memory or OCD, but I tend to think it can be either one depending on the exacerbation. When my DS5 first presented, he would cry and cry and ask me if he would be able to remember all the "bad" things he did when he died and went to Heaven (to me OCD). Now, when I ask him to do things, he spaces out totally and says he doesn't hear me or doesn't remember what I asked. In this case, I really think he can't remember or his mind is elsewhere when I ask him. Also, we do journaling every day. If he is symptomatic and I talk him through how to spell things, he cannot rem
  13. Keep in mind this post is coming from a former elementary teacher with eight years experience teaching mainly first grade (4th as well). First of all, I am so sorry for your experience. Dude, the letter "e", really??? I remember having to calm parents down about letter reversals being totally normal in first grade. "Your child is fine, it is totally normal to reverse letters...no worries". It truly sounds like she is just trying to find things to pick on--sigh. I will be honest, I can think of many, many times when I left a parent conference thinking "oh these parents just don't get
  14. Oh Stephanie, I am so sorry! I am still trying to get my e-mail out to you...but DS7 and DS5 abandoned Bruce Banner peace for the Hulk a couple days ago. Bruce is coming back thankfully--toy jail works too. My sister's brilliant idea of cutting out "bars" in a large cardboard box that she kept on top of the refrigerator. If the kids didn't pick up their stuff, it was sentenced to toy jail for a week or longer depending on how ticked she was that they never picked up their stuff. I'm telling you, toy jail is a winner!
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