minimaxwell

We just did lVlG with UHC and dr. K last week. All the codes Dr. K provided to UHC were fine. If you told me which ones I would remember them. The J code which is for the actual lvlG was covered at 100%. not sure how much of the $2400 fee fo Dr. K I will get back. I did not have to give any money to Oak Brook Surgical. Call me if you have any question. 508.667.0574-Tiffani GOOD LUCK! Just curious ,was your child off abx when they got worse again?

Are you by any Chance talking about Dr. Wolfe or Dr. Fulbrigge?? I am always open to sharing/helping. feel free to call me 508.667.0574- Tiffani

We have seen many Docs. I trust Dr. T the most. i feel like he understands the "science" more than anyone else. He also disagrees with most of the docs who only treat w/Augmentin post lvlg. He prefers an abx cocktail depending what your bloodwork shows and what you are fighting. Our other docs are Dr. Geller, Dr. Jenike and now Dr. Walter.

This is the email I use for Dr. k mkovacevic@aol.com

Yes, it went well. She had it Thurs. and Fri. Dr. K gave her medicine like prednisone in her lV on Thurs. so she wouldn't get a headache. We flew home Sat. night and Sunday she woke with a raging headache and thought she was going to throw up. Vomit phobia is what consumes her life! She did not vomit,we gave prednisone and Motrin. She fell back to sleep and my husband and I anticipated a horrible ocd filled day when she woke up. Surprisingly she was fine when she woke up, nervous but not out of her mind like usual. We are seeing small shifts, crossing our fingers.

lol, no we did it w/ Dr. K. If we need to do it again I will do it w/ Dr. Walter.

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.

@ Kara BTW- I forgot to introduce myself- Tiffani Maxwell DD Drew is 17 PANDAS

@ Kara , can you please call me? 508.667.0574 I may be in meetings until 3:30 but please leave me a message if you get my vm. I have been working on putting together a team at MGH, let's coordinate and compare notes!

My dd17 had lVlG this past Thurs. & Fri. I have been chatting with a few other moms who are in the same situation. Can you please weigh in for us? We have all heard different things from our docs. THANKS!

Big hugs, I have been there too. I used to feel as if i was walking in a mine field around her. never knew when she was going to explode. If you have trouble getting more abx I would switch to a PANDAS specialist.

Hi patric, we loved the weather! Will you be at the conference in July? i plan on coming with 2 other MA PANDAS Moms. Would love to meet up with you. Best, Tiffani

I have been searching this forum and now I am even more confused. Would love some help on what to use. I know every child reacts in a different way. My 17 yr old DD was recently dx PANDAS. Dr. T told her no yogurt or cold cheese. Also no probiotic w/strep. Dr. K totally disagrees with all of this. After reading some posts and other research we have decided to stay clear of these -- just to err on the side of caution. About 6 months ago Dr. Dan Geller put her on Azith. This was at my suggestion- we did not have a dx yet from Dr. T. She lasted 3 weeks, terrible stomach distress everyday. She started the probiotic (50 billion,no strep the same day). After 3 weeks she discontinued, at that time she was not convinced she had PANDAS. A few months later we got into Dr. T who convinced us it was PANS (mycoplasma triggers). We started Augmentin and Biaxin. First day a little diarrhea again. Second day excruciating pain,ended up in ER. Was admitted for Acute Pancreatitis. Will never know what caused this, ..virus..infection or rare reaction to Biaxin. Then me met with Dr. K who suggested lVlG. Dr. T agreed. So off to Chicago we went. Just completed lVlG yesterday. So here is my dilemma.. Dr. K believes it all stems from Strep and gives only Augmentin. Dr. T says you need another abx to cover for Myco. Dr. K says to give Florastor for 14 days and then she will be fine. I would rather give her more support just don't know what to do. I was thinking about doing the Florastor and Pearls as well as adding in some Cultrelle and other Probiotics. thinking if I rotate in some others I can cover more ground. Also want to add in Doxy,thinking of waiting a few days to make sure she doesn't get sick from the Augmentin first. This forum has been a life saver for us. I will be eternally grateful for all the knowledge I have acquired here. Currently working with Dr. Jenike and Dr. Geller to make lVlG available for PANDAS kids in the Boston area. Crazy to me that families have to travel for this! That can be a whole topic itself Thanks, Tiffani

I agree with Tpotter. Good luck!

So sorry you are going thru this. When i read your post it reminded me of my daughter when she was younger(now 17). I told her I wanted her opinion and started reading it to her. She said "That was just like me!" I asked her to explain it to me and she said "Mom,it's the OCD. If you don't have the feeling of something being just right it can make you irritable. You feel like all this emotion builds up and you are going to explode" I hope this helps. I used to wonder if it was ODD too. Now I think it was just part of the OCD. My husband and I used to say we felt like we were constantly walking in a mine field. BTW, most of the time she was a very sweet child but the rages were crazy. Her therapist taught me you cannot reason with them when they are "storming,you need to wait for it to pass." I used to go to my room and lock the door to get away from her. This very sweet little girl would actually break the lock and get to us. So hard to ignore it when they are out of control. Feel free to PM me if you ever want to phone chat.

We met with Dr. Kovasevic today http://webpediatrics.com/practice.html he believes almost all TS is actually PANDAS. I would get your daughter on abx ASAP,IMHO. So sorry you are going thru this. This site has helped us tremendously. Please keep us updated.-Tiffani

Contact Diana from PANDAS Network,she is in CA and may have some ideas for you. they are also on Facebook. http://pandasnetwork.org/

. My dd is scheduled for lVlG with Dr. K this Thursday. Today I started thinking about Lyme as a possible co-infection for her. She is tired all the time. Dr. T dx her as PANS myco as her trigger. He tested her for Lyme but it went to Quest so it was negative. I am driving myself crazy tonight. Should I test her for Lyme before lVlG with Igenex? Does insurance cover this usually? Thanks, Tiffani

. My dd is scheduled for lVlG with Dr. K this Thursday. Today I started thinking about Lyme as a possible co-infection for her. She is tired all the time. Dr. T dx her as PANS myco as her trigger. He tested her for Lyme but it went to Quest so it was negative. I am driving myself crazy tonight. Should I test her for Lyme before lVlG with Igenex? Does insurance cover this usually? Thanks, Tiffani

Thanks for all the input, truly appreciate it. My dd is scheduled for lVlG with Dr. K this Thursday. Today I started thinking about Lyme as a possible co-infection for her. She is tired all the time. Dr. T dx her as PANS myco as her trigger. He tested her for Lyme but it went to Quest so it was negative. I am driving myself crazy tonight. Should I test her for Lyme before lVlG with Igenex? Does insurance cover this usually? Thanks, Tiffani

Dear LLM, Thanks so much. I think my DD has been dealing with this for 11 years. Hard to remember exactly. There have certainly been times when she has been better ,ie more functional. Sometimes I think it is easier to tell with the kids who have tics. see does not have any. My friends child sees tics go away with abx and or motrin and steriods. Unfortunatly we did not see any changes with these.Looking forward to seeing what lVlG can do for her ocd/aniety/panic.

We got our ped to call in a Gap exception so our insur. company covered both Dr. t and Dr. K. Basically have to say there is no PANDAS specialist in our area to treat our child. We are lucky b/c we have United Health which is PANDAS friendly. Perhaps others can weigh in how to get these Dr's covered . Also, dr. T and Dr. K both do phone consults. I would start with dr. T.

Seems to me sometimes bloodwork supports this yet it does not meet NIMH. For as much as they know,they still don't know. I am so thankful I have found this Forum, I am learning so much yet have so much to learn.

NYT should be ashamed of themselves. How about some real reporting next time??

Study not up and running yet. It will be abx azithromycin. I think it is the same as Dr. Murphys in Tampa,