colleendonny

Nope. Not with 3 boys, lol. I only have 1, an 8 year old. lol What time were you there? We were there at 10 a.m. Oh, we had an appointment at 11am, but were there at about 10:30. Must have just missed you. Yep, we went in about 10:20 and left likely when you were in. How funny! May I ask what you are seeing Dr. W for? PM me if you want. If I am being nosy, tell me to shhh! I'll PM you

Nope. Not with 3 boys, lol. I only have 1, an 8 year old. lol What time were you there? We were there at 10 a.m. Oh, we had an appointment at 11am, but were there at about 10:30. Must have just missed you.

Strange..... Were you there with three boys today to see Dr. W? If so I saw you

Hi, I'm not sure if I will be much help but I will try. Lyme and co infection symptoms can come and go in cycles. This may be worth looking into. We tested through IgeneX. Basically you call them, they send out a kit. You go to your pedi, they sign it and collect your sons blood. You pay up front, about $750, and hope insurance will cover some. They would reimburse you. IgeneX would send you the required forms to submit. Also for a doctor... We see Dr. Bouboulis in Connecticut. I'm not sure how far he is from you, but he does accept BCBS. And he is a PANDAS specialist. He books many weeks out, so if you are interested, I suggest you make an appt. and cancel if you decide to not go. I hope I was some help! I'm sure some more knowledgable will chime in:) Hope you get some answers soon.

Oh, no. I'm sorry. I do not have much advice, bit maybe you could set up a phone consult with Dr. B or one of the PA's? I'm not sure if insurance covers the phone consults... Does your DD have Lyme? What area do you guys live in?

Glad to hear of another who loves Dr. M!! I think the 3 hour ride every few months will be worth it I'll meet you on Monday

Yes,.it is Dr. M. I am excited to meet him as he sounds like a wonderful doctor. My concerns with Dr. J are his age as well. I trust that he is an excellent doctor, but who is to say the the doctors that are currently working with him now will be just as excellent? I would love to see both but it is just not in our funds. Are you coming to the Hanover meeting? I would love to chat with you more!

I hope bcbs covers some of ours!

Thanks Nancy, I'm going to send you a PM. I have been meaning to do so for a while. Newburyport is over 2 hours away from us

Both that I contacted called back. One isn't accepting new patients amnd the other is and she just happens to take only BCBS, which is what we have. The speaker is she is about 1 1/2 hours away, but its definitely worth a shot to me. I just want to help her with these thoughts that she has and let her know she is not alone. Someone other than me telling her that may convince her and help her feel better about it. I'm.still not sure how ERP works for intrusive thoughts... Maybe she would try CBT first?

Thanks. Laura, I checked the site, thanks. I can't believe I live in the Boston area and there are only 2 that fit the criteria in a 50 mile radius! They both say they accept private insurance... I'm guessing that really means pay out of pocket...

Hi all, Was wondering something. We have been seeing Dr.B. We have seen him once in December and once in January and will see him again on the 29th. My DD also has ehrlichiosis and a suspicious IgeneX test results for Lyme. I'm assuming Dr.B will refer us to Dr.J, whom I already have an appointment with. But there is another LLMD in the area who I would like to see that I have an appointment scheduled with. I'm leaning more towards the other LLMD integrative doctor. But I still don't want to not see Dr.B. I would be worried that with PANDAS in the news so much lately that he will eventually not be able to see new patients. And I don't want to be stuck not having a PANDAS doctor who is so knowledgable about the disorder. Does anyone see Dr. B and see an LLMD who is not Dr.J? I'm just wondering if he would be willing to work with another LLMD. And again, if one doctor doesn't agree with another doctors efforts with treatment options, how does one know which route to go? I'm confused

I can relate with you on this. As a matter of fact, I just sent out an e-mail 2 nights ago to my mother, Mother in Law, and Father in Laws. I just feel as if they are skeptical. They wonder why on Earth I would travel to CT, when I have Children's Hospital Boston around the corner. I sent them the PANDAS website, along with some youtube videos, and the link to this forum. I guess I will just have to wait and see if they are intersted enough to read. I am like you as well. My daughter's symptoms are fairly "mild", as compared to others, but hey, I still react. And with a lot of emotion. But when it's your kid, and you know something is wrong, there is no wat to under react, in my opinion. No one knows your child like you know them. If you see a change, keep pursuing until you find an answer that you truly believe in. Hang in there.

I know there are lots of PANDAS parents here from MA. I'm wondering if anyone can reccomend a great person for CBT and/or ERP for my DD5. Preferably one who will take insurance. Thanks so much. Colleen

Thanks everyone. I know my biggest issue with disciplining, especially with PANDAS DD, is consistency. I also have a 2 1/2 year old and an 8 month old, so I just feel so overwhelmed these days.I know, no excuse.I am definitely going to look into that book. Today was tough as well. She just likes to fight with me and ignore simple requests. I wonder how she will be when she is 15?! Anyway, thanks again for the advice. I'm going to buckle down and come up with a program and share it with my husband and others who are involved with Kayleigh so we are all on the same page. I think I'll post another thread about CBT and ERP in MA. I know there is many from around here.

That was a good article. I'm happy to see it was from Parents. I wonder if it was published in their magazine as well?

Hi all.Looking for some advice on DD5. She is currently on Augmentin and Azithromycin. Her biggest PANDAS issues are intrusive thoughts, though not debilitating, and ODD. These symptoms are still here, and haven't gone away, since catching PANDAS early and treating them. How come these haven't went away? She says that they are constant... They do not seem to intefere with her lifestyle. And lately, she has been so defiant. Not so much in preschool, or to her grandparents, but to my husband and I. It seems as if anything I say, her reply is "No." I brush her hair, she screams and tries to run from me. I mean, these are things that we can definitely manage now, but I'm having a hard time understanding why they are still here... She does have ehrlichiosis and suspicious IgeneX results. We see an Integrative LLMD, but it's not until April. I'm not sure what abx they use to treat ehrlichiosis, but do you think this is why I am still seeing symptoms? Because the underlying infection may not be clear? Also, how do you punish your PANDAS preschooler for the defiant behavior? Sometimes I'm not totally sure if it's PANDAS ODD or typical 5 year old girl sassiness...

Hi Kara, I might be able to go. I usually work on Saturdays so it may be tough because I'm not very close to Salem. I'll PM you or send you an e-mail for the info. Thanks

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?

I think it sounds like PANDAS as well. I recommend looking for a PANDAS specialist in your area. You can go under the pinned threads to look for doctors who have helped. What state do you live in?

I'll be there! It will be my first time. Do you live in the south shore?

I will pm you back

I will pm you back

I do not have much information for you but if you are looking for an allergist/ immunoligist who is a PANDAS doctor, you could call Dr.B, who is all 3. I hope you do get some answers soon. Personally I have a tough time understanding TS. I believe there is an underlying reason for most medical issues, TS being one of them. Especially when you can pinpoint when symptoms started. Hang in there.

Thanks Kara, I agree that her testing does look suspicious. Thanks for posting back. I have an appointment with 2 LLMD's. I just need to choose one. Did you get my email last week? Was wondering of you had a meeting set up for this or next month?