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We met with Dr. Paternack last week for a few hours. The visit was with my daughter and another Pandas family. Dr. Pasternack is a very kind man. He is the ONLY infectious disease doc that is willing to see Pandas kids. The problem is that he is not a PANDAS expert and is still learning.He is also extremely overworked. save your time and $$, Childrens Hospital Boston will not help PANDAS kids. @ Dan, i sent you a PM,feel free to call me. who is your PANDAS doc?

Dr. Geller put my daughter on Clompipramine for OCD.

Azith did nothing for my DD 17 except give her terrible stomach distress for the weeks she was on it. We also do probiotics. Finally she couldn't take it anymore and took herself off. Then we switched to Aug. and Biaxin,first day stomach pain again,second day she ended up in ER with pancreatitis. After that we decided to go straight to lvlG--best decison we ever made. She is almost 10 weeks post lvlG and approx. 60-70%better. she is already asking for another one . We will probably wait until the 4 month mark. She currently takes 500 aug. BID.

i found this very helpful and wanted to pass it along. I also sent them this message after making a small donation: Someone on the PANDAS/PITAND/PANS International FB page posted a video of the Immune System. It was very helpful. There are thousands of us PANDAS Moms who belong to many different PANDAS support pages. Would you be interested in making some Videos for PANDAS? I would help spread the word and get people to donate. I could also put you in touch with a PANDAS doc for you to talk to if need be. Perhaps if we all contact them they can help our cause? Thanks, Tiffani

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Dr. Jenike will do consults on adults.

I am planning on packing a picnic lunch,maybe we can have a support group meeting/lunch afterward? i plan on talking to Dr. Jenike before if possible or after. Let's meet at stage/speaker podium before 11:30 and then meet after for lunch.

No we have not spoken to Dr. K about this. I do not want to go back to Chicago and prefer to have it done locally if possible. My daughter is the one that is requesting it! we are lucky we have UnitedhealthCare which covers lVlG for PANDAS. I am guessing that due to your daughter's age and symptoms Dr K is advising another one -- since she is 70% right now. Our daughter (at 12) had IVIG last year, it has been a year of healing...however, she was about 90% within a few weeks initially. I am only speculating, but the age is of greater concern, I think. I think you will know--and honestly, if it was me, I would probably go ahead and schedule it, so it is possible if/when you decide.

Thanks so much for sharing,truly inspirational. After spending 4 hours today at Mass. General Hospital Boston discussing how to get lVlG for PANDAS kids this is exactly what I needed to hear. My DD17 is 9 weeks post lVlG with Dr. K and already wants to schedule another one. She was 70% improved but about a week ago she felt like she regressed slightly. I know this is a waxing and waning healing--my question to you smart PANDAS Moms is 'how long do you wait between lVlG's?? We want to get her to at least 90%.

Was wondering which doctors you use for this? Any feedback on dr. James greenblatt or dr. Lacava in MA?

Dear Coco, thanks for posting this. And thank you to Nancy d. for leading me to this post. We just found out that my DD is positive for one copy of C677t AND one copy of the A1298C. Her ped told me she was negative last month. today I picked up the lab results and was shocked! Her Glutathione was 678 range is 544-1228 Also high for Copper 198 range 70-155 Zinc was 93 range 70-150 Platelets 393 range 150-349 8 weeks post lvlG and doing well,about 70% improved. 2 recent cases of Pancreatitis which i now think is due to MTHFR. currently taking folic acid as per Dr. K. ,should I discontinue now before testing or is she getting any benefit from it? thanks in Advance, Tiffani

So sorry.. Boston Childrens Hospital is just as bad! I am thankful I have another option in Boston--Mass General is helping us.

I will be there!!

My dd17 "mentors" another PANDAS girl 11 who felt like she was the only one like this. My daughter Drew would be happy to speak/text/fb with anyone. Her email is Drewashleymaxwell@gmail.com. she does not check it everyday though. She is attached to her phone and FB as most 17yr olds are. Her fb name is Drew Maxwell.

Sorry, the reply got screwed up but you get the gist.

LOL, no I actually work for lululemon athletica! It is all the yoga that keeps me sane. My parents always told me I should have went to medical school. I am just an angry mom who started learning about PANDAS and got pissed off. I made it my mission to make treatment available to all children (not just the ones that can afford to travel and pay out of pocket) then I found out my DD had it too. So now I spend time trying to advocate and educate other docs . My daughter was a patient of dr. Geller and Dr. Jenike. I have circled back with them as well as the laundry list of other docs now that we know what we are dealing with. Yes, thank you so much!! I have tyremedous respect for Dr. Geller and Dr. Jenike ,they are doing amazing work for the PANDAS cause. I also sent out the PSA's to every school in my district. PM me if you want a copy of what I send. You seem to have a lot of ties to many doctors. Do you work in the medical field?

My brother is getting his Masters in Government Public Policy. He is required to see this! Another great one is 'Under Our Skin" Still fuming over this one. OOPS-- SAT night.

My brother is getting his Masters in Government Public Policy. He is required to see this! Another great one is 'Under Our Skin" OOPS-Saturday night.

Well I will share this even though it may upset some. I recognize there are very differing opinions on abx and lVlG. How are we parents expected to figure this all out when the experts cannot even agree? Dr. t has told me he feels that for some kids abx can do the trick. I also had dinner last night with a Board member of the IOCDF who agrees with this. dr. K has told us that abx is only a band aid and lvlG is the cure. I asked swedo if she agreed with that and she said YES. I also told her that dr. k believes 90 something % of OCD is PANDAS- do you agree? She smiled and shook her head yes. She also mentioned that the autistic community is seeing great success with TSO therapy and one day might be helpful for PANDAS kids. I also told Dr. Leckman that with his criteria my daughter would still not have a PANDAS dx. (sudden onset) He basically told me he understood and that they had to compromise. BTW,last night I learned that Dr. Murphy NEEDS kids in her abx trial. There is a small stipend for travel and all fees once there are covered. This is good news for those families that cannot get abx from their local idiot peds. (rant over)

My dd17 is now 8 weeks post iVlG and is 70% better. lyme testing-quest western blot was neg. Was not able to do Igenex before iVlG and now I have to wait a few weeks more to test. I crashed the PAS conference 2 weeks ago in Boston. dr. swedo said her first choice is PEX,I was floored. I spoke with her at length afterward. I asked her if my DD got sick again is she saying I should be doing PEX? She replied "yes, but she will get better with lVlG too.' We wasted so many years..did a few weeks of abx -no change. No cahange w/steroids or Motrin either. The ONLY thing that helped was iVlG. (btw, she never had tics--plenty of Anxiety/Panic/OCD. She has gone to Prom (and going to another this weekend), rode on a school bus(short ride assisted with klonopin), driven with friends over an hour to the beach,got a job being a gymnastics coach(she is so happy about this). Stopped asking me over and over if she is going to vomit. Panic attacks way,way down. Going to school more often. No rages. Not sleeping in my room most nights. She looks healthier and happier. Depression totally lifted. Still a work in progress...

So happy for you!! You are in good hands with Dr. L my dd17 went undiagnosed for 11 years. Dr. T diagnosed her end of Jan. we are now 8 weeks post lvlG and she is 70% better. So glad you are getting rid of tonsils,IMHO all these kids need them out.

So sorry you are going through this. You ped is ignorant- walk away from the practice, don't worry about getting in trouble,it is a non issue. What state are you in? Which PANDAS docs are you seeing? Hopefully you can find a local ped that is PANDAS friendly . There are lists on Saving Sammy/Beth Maloney's site as well as on PANDAS Network. BTW- you don't need a Strep connection. Perhaps you can share some info with your ped when you leave...the white paper ...there is lots to print out and leave with them. Also,get a copy of your childs medical records ,you need to start a folder.

Dr. Geller had told me about Dr. Pasternack. We have an appt next friday. The receiptionist says they treat PANDAS.. The ENT at Mass Eye and ear who is very PANDAS friendly is Dr donald Keamy. He took out my friends son's asap as soon as he heard PANDAS. (btw, this child never showed signs of strep yet tonsils were very scarred from strep)