minimaxwell

Where do you buy/find Nutiva Organic extra virgin coconut oil? Thanks,Tiffani Ok,just found it online. I was wondering if anyone uses this: http://www.madejustright.com/post/earth-balance-coconut-spread-is-one-of-natural-foods-merchandisers-top-new-vegan-products We tried it recently at a Gluten-Free expo,it is tasty.

p.s. I would start second son on abx if possible, IMHO

My daughter is scheduled for lVlG ,recommended by both Dr.T and Dr. k. No tics ONLY OCD here. Dr. Murphy in Florida is doing a trial with Azithromycin and Dr. Geller will be starting a trial with Dr. Jenike in Mass. soon. Perhaps your Dr. cold reach out to one of them? Dr. Geller is also Australian

My daughter is scheduled for lVlG ,recommended by both Dr.T and Dr. k. No tics ONLY OCD here. Dr. Murphy in Florida is doing a trial with Azithromycin and Dr. Geller will be starting a trial with Dr. Jenike in Mass. soon. Perhaps your Dr. cold reach out to one of them? Dr. Geller is also Australian

Hi Denise, I just had an appt with an immunologist at MGH Boston, Dr. Walter. My daughter has been along time patient of Dr. Dan Geller. She was also a patient of Dr. Michael Jenike at OCDI. DD17 has been tested by Dr. T and we are heading to Chicago for fist lVlG with Dr. K in 2 weeks. I am working with Dr. Geller and Dr. Jenike to form a team of Docs to treat PANDAS kids in Boston. Dr. Walter will join this team but needs lots of support. Dr. Walter ran lots more blood work, not sure what exactly ,but I will send it to you when it comes back. She also asked me to have them draw 3 red top vials before lVlG in Chicago and have them sent to her for future testing. Do you know anything about rituximab? 2 dr.s have mentioned this to me but have not heard any other PANDAS patients talking about it. Best, Tiffani

Can you please send me the info on the support group? thanks,tiffani

Hi Carol< Below is an message I got from a Mom who has a PANDAS kid. Hope this helps. * Hi Tiffani, You mentioned that you would like to know about doctors who might be willing to come to Mass to discus PANDAS. I spoke to Ruby's pediatrician Dr. Susan Schulman. She would like to do anything to help spread the word to other docs. You can reach her at susankschulmanmd@gmail.com She is a very lovely and caring woman who has a very interesting story to tell about all the PANDAS kids she see's in her practice. She was interviewed for the Parents magazine article about PANDAS. You can tell her that you got her name from Ruby's mom. Sherri

Thanks Kara! If we travel it will be to Dr. K ,but my first choice is to get it done in Boston. We will see what happens in March. I have Dr. Jenike helping me as well. He feels that Boston needs to be providing it.

It is almost impossible to see Dr. Geller. We are very lucky we saw him at MGH years ago so we still see him there. I know of others who had to see him privately and paid $$$ out of pocket.

My dd gets hives that are more like welts when she gets into a high OCD/anxiety moment. Anyone else ever here of this? Dr.T told us it has to do with PANS and histamine.

Hi, I am new here and was wondering if you might be able to help me. We are also in Ma, I am looking for a Dr. to provide lVlG treatment, any suggestions? Dr. T and Dr. K will do it but prefer to stay in Boston. thanks,tiffani

Hi Colleen, We are just meeting w/ Dr. Walter on 3/1. Dr. T and both Dr. K are recommending lVlG but I would have to travel for it which seems absurd. Dr. Geller at MGH told me he would also speak w/ Dr. Walter. I am hoping with his help I may be able to do this. I could go out of town but prefer to pave the way for future Boston kids who may need this. I will PM you for the name at Waltham but my daughter does not fir the typical case. Thanks, Tiffani

Thanks Kara, We have seen Dr. T and Dr.k who both recommend lVlG. Fulhbrigge office told me that he is no longer seeing PANDAS patients when I asked why I was told he used to believe in PANDAS but does not anymore!! I am now looking for a Dr. to administer it in Boston. I could go out of town but prefer to do it in Boston. Not only for my daughter but for the future kids who will need this.

Hi, I am new here and was wondering if you might be able to help me. We are also in Ma, I am looking for lVlG treatment, any suggestions? thanks,tiffani

Looking for lVlG treatment in the Boston area. Dr. T suggested Dr. Walter. We have an appt. on 3/1 but she does not return my call. Was not able to get any docs at Childrens to help us. So frustrating!