Debbie1

We have done multiple ivigs and never experienced diminishing returns. We have seen great results with all of them.

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.

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.

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.

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?

Thanks so much everyone for sharing your info and experiences. I forwarded the info on to my friend - it was very helpful.

Thanks so much for the info EAMom. It was very helpful and I will pass it along to my friend.

Thanks so much for your reply Dawn. I will pass this information on.

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.

My daughter has had braces for almost a year with no related flares.

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.

Double post

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.

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.