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Debbie1

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Everything posted by Debbie1

  1. We have done multiple ivigs and never experienced diminishing returns. We have seen great results with all of them.
  2. Yes, we experienced this. On our case it was due to long term use of full strength augmentin plus the short term effects of ivig (which temporarily lower neutrophil counts). We cut the augmentin dose in half to a prophylactic dose and the counts returned to normal. We now monitor WBC and neutrophil counts periodically and before every infusion.
  3. My pandas ds developed severe neutropenia from extended use of full strength augmentin plus ivig (which temporarily lowers neutrophil counts). Our immunologist plus two hematologists were involved and all agreed that extended use of some antibiotics can cause this. We cut his augmentin dose in half and his neutrophil count bounced back. He continues to get ivig, but we check his neutrophil count before hand to make sure it is high enough to go ahead, knowing that the ivig will push down his neutrophils.
  4. Try contacting Dr. Marc Patterson (pediatric neurology) at the Mayo Clinic. He diagnosed and treated a child I know when he was at Columbia several years ago. The child received two rounds of IVIG and prophylactic antibiotics afterward. He has been well since.
  5. Thanks T. Mom - I appreciate the additional advice. Just 1 question - if the infectious trigger/autoimmune process is never identified and treated, will the child be able to recover from the anorexia with anorexia treatments alone?
  6. Thanks so much everyone for sharing your info and experiences. I forwarded the info on to my friend - it was very helpful.
  7. Thanks so much for the info EAMom. It was very helpful and I will pass it along to my friend.
  8. Thanks so much for your reply Dawn. I will pass this information on.
  9. I friend just told me this morning that she knows a child who is being hospitalized for severe anorexia. It is a life threatening situation. I do not know whether the child has any other symptoms, but my friend is debating whether she should bring up the possibility that this could be pandas. For those of you who have experienced pandas anorexia, how did you figure out that it was connected to pandas? What caused you to look into infectious triggers? Can anyone forward me studies that mention anorexia as a pandas symptom? Thanks so much.
  10. My daughter has had braces for almost a year with no related flares.
  11. Hi everyone, I am posting because I would like to help a friend whose child developed trichotillomania a few months ago. I only found out recently that they have been dealing with this. For those of who have experience with this symptom, can you answer a few questions for me: 1) How old was your child when this began? 2) What other symptoms did they have? 3) How did you connect the hair pulling to pandas? Can you have trichotillomania and it not be attributable to pandas? 4) What treatment helped your child the most? I am debating whether to have a conversation with her about pandas, but I feel a little uneasy about it. Thanks for your help! This forum is such a great resource.
  12. While I have great respect for Dr Swedo, I am also disappointed with the paper. I have two pandas kids, one of which meets the criteria in the new paper and one who does not. The one who does not has tics only yet met all of the original pandas criteria and was considered by at least one pandas doctor to be a textbook case. Both kids have benefitted tremendously from antibiotics, steroids and ivig. I fear that under the new criteria, my child with tics as the only presentation would have never been diagnosed. I am afraid to give this new article to my pediatrician - I think it will cause him to overlook many possible cases. I am also disappointed with the lack of mention of immune modulating therapies. We tried SSRIs and they not only did not work but had a negative affect.
  13. It has been a very long time since I have posted, but some of the older forum members may remember me. My 2 pandas kids are doing very well post multiple rounds of HD ivig (I'll save details for another post) I did want to comment on Columbia though - the Lyme neuropsych doctor is extremely difficult to get in touch with - we tried several times to get an appointment for a consult a few years ago and not once received a return phone call from the office. My understanding is that the doctor knows both Lyme and pandas but I am not sure to what extent they will treat for pandas. We used the pediatric neurology department at Columbia for over a year and left extremely frustrated after they believed my children had pandas but refused to consider ivig even after a relapse. They also insist on strep tiiters correlating with symptoms (which we had), but is problematic for anyone that does not. As for the research that has come out of Columbia, it didn't seem to affect the way pediatric neurology decided to treat. I would strongly recommend dr. L or dr. B. over Columbia based on our experience.
  14. It's been a long time since I posted on this board. My 2 pandas kids are doing well, but I'll leave the update for another post at a later time. Today I am posting for a friend whose 17 year old son recently developed a tic. He has a history of OCD type behaviors and his mom recently began looking into whether her son may have pandas. The child was put on over a month of antibiotics with no change in tics or behaviors and is now on a two week course of prednisone. He was put on 40mg and is approximately 180 lbs. The family saw noticeable improvement in his mood and demeanor (but not in OCD or tics) on days 3, 4 and the beginning of day 5 on the prednisone. Later on day 5, they saw a backslide which has continued for the last few days. They have not yet finished the two week course. Has anyone had a similar experience with prednisone where there was improvement early on but then a worsening of symptoms? If so, what ultimately helped your child? Thanks for you help.
  15. You can try Dr. Susan Schulman in Brooklyn. I do not know her contact info but you can google her.
  16. At what interval are you currently doing IVIG and do they want you to continue at the same interval?
  17. If you can post where your cousin is located, maybe someone will have some helpful information.
  18. A year ago, Dr. S. was not able to offer her patients IVIG so this must a relatively new thing for her. I would be interested in knowing how many patients she has now referred for IVIG, what dose she uses, approximately how many infusions her patients have needed, and what outcome she has seen so far. I would also be interested in finding out how she manages the side effects of IVIG. bws - did she discuss any of this with you? If not, I think they are important questions to ask.
  19. Hi Wendy, Dr. T. knows about high IgE levels. He once suspected it in my pandas kids. He did explain it to me, but honestly, I was lost on the explanation and could not explain it to someone else. My kids were tested, but results came back normal. If they came back elevated, I think he was going to refer us to someone to look into it further. You may want to contact him. Debbie
  20. We had a very positive response to IVIG. ds9's tics are 99% gone. He has some mild OCD remaining. dd13's tics are significantly improved. She did not have OCD symptoms. We will be repeating IVIG with her to try to get her closer to 100%.
  21. My 9 year old son has been on 2x daily augmentin since Nov. 2009. We just moved him down to once daily less than 1 week ago. If he does get a bacterial infection, treatment will depend on what type of infection we think it is. Keep in mind that no antibiotic is perfect. While my doctors prefer augmentin as a strep preventative because there are zith resistant strains of strep here, mycoplasma is resistant to augmentin and is treated with zithromax. Its a catch-22.
  22. Can someone please pm me with Dr. Trifiletti's latest contact info? Thanks.
  23. Is the inability to produce urine the main symptom of this type of kidney problem? We did have the bloodwork done that was mentioned. Is this a problem that would happen immediately during or after IVIG or can it build up from multiple IVIGs?
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