minimaxwell Posted February 14, 2012 Report Posted February 14, 2012 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!
Chemar Posted February 14, 2012 Report Posted February 14, 2012 hi and welcome sorry it took a while for your post to show due to our new anti-spam filters hope you find the help you need here
colleendonny Posted February 14, 2012 Report Posted February 14, 2012 Hello, Noticed you were from MA. Us too I have not heard of her but I can feel your frusteration with CHB. I do see a neuroligist at CH Waltham who could be some help.... I think he goes by the strict PANDAS guidelines though. Has to be strep infection. PM me if you would like his name. He may be of some help. Is your IVIG scheduled for 3/1 or are you just meeting this doctor?
minimaxwell Posted February 15, 2012 Author Report Posted February 15, 2012 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
HanHan Posted February 16, 2012 Report Posted February 16, 2012 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
HanHan Posted February 16, 2012 Report Posted February 16, 2012 Hi Tiffiani, We are from MA too. We were thinking of trying to get an appoint. with Dr. K in Chicago for IVIG. I didn't know there was anyone in the area. Could you let me know how it goes with Dr. Walters. Also, was it hard to get an appoint. with Dr. Geller and did you have to pay out of pocket? Thank you. Susan
minimaxwell Posted February 17, 2012 Author Report Posted February 17, 2012 Hi Tiffiani, We are from MA too. We were thinking of trying to get an appoint. with Dr. K in Chicago for IVIG. I didn't know there was anyone in the area. Could you let me know how it goes with Dr. Walters. Also, was it hard to get an appoint. with Dr. Geller and did you have to pay out of pocket? Thank you. Susan 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.
patric Posted February 17, 2012 Report Posted February 17, 2012 Hi, My son had IVIg last June with dr. K. We could have had the treatment done elsewhere and possibly paid for with insurance. However, after much discussion my husband and I decided to go with a pandas expert. Dr K. said that while other doctors might be able to perform the IVIg, they will not know what to do for follow up. Boy are we glad we chose that route as we have needed that Follow up many times. In fact, every time my ds8 has gotten sick and had a flair up, Dr. K has been there with a course of treatment. Good luck with your decision!
KaraM Posted February 17, 2012 Report Posted February 17, 2012 Have you considered Dr. B. in Darien, CT. He's a little bit closer than Dr. T for you. From where you are, it's probably a 2 1/2 hour drive if you can go straight through. He has had enough IVIG patients that I believe he set up a facility specifically for it, so you would be in experienced hands. Kara
minimaxwell Posted February 17, 2012 Author Report Posted February 17, 2012 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.
colleendonny Posted March 20, 2012 Report Posted March 20, 2012 Tiffani, How did your appointmnet go? I was talking to my Sister in law today and she has a friend who has a sister here in MA. They see Dr. T and get IVIG from Dr. Walters. I know you have been advocating for services here in the Boston area, and we did discuss this at the SShore meeting last night. The woman I mentioned above has 2 PANDAS boys and they are also immunodeficient.
colleendonny Posted March 20, 2012 Report Posted March 20, 2012 Tiffani, How did your appointmnet go? I was talking to my Sister in law today and she has a friend who has a sister here in MA. They see Dr. T and get IVIG from Dr. Walters. I know you have been advocating for services here in the Boston area, and we did discuss this at the SShore meeting last night. The woman I mentioned above has 2 PANDAS boys and they are also immunodeficient.
minimaxwell Posted March 20, 2012 Author Report Posted March 20, 2012 My appt was great. Dr. Walter is interested in helping these kids but she feels she needs a team to help her. This is all new to her. I know she was going to be treating 2 other kids ,one from Dr. Geller and one from Dr. T. She offered to do it for my daughter but I had already made plans to go to Chicago. We had lVlG this past week. I asked dr. Walter if I could start sending other PANDAS patients to her and she said not yet. That being said , I would still send them She also had me draw blood before lVlG to use for future testing.
fightingmom Posted March 20, 2012 Report Posted March 20, 2012 I also wish we had options in Boston! We are in Providence and I can't even find a pediatrician that believes in PANDAS let alone be in board for treatment. Hope your appt. went well!
fightingmom Posted March 20, 2012 Report Posted March 20, 2012 We posted at the same time! You ha IViG with Dr. Walters? How did it go?
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