Doug

And NO titers or pos for strep. Our dd never tested high for anything

Yeah!!! I am happy to hear good news. Tracie

Thanks everyone I will Let Doug email him he has a better way with words then I do.. Dr.K wont tell us now I dont think, so we will need to bring it up in a couple of months to him and then see what he thinks. Tracie

Ok we are hitting the 6 month post ivig mark and our dd is doing AWESOME.. so my Question is for everyone that has been to Dr.k What happens after a year?? does he keep you on abx's say 3 times a week?? I will email him at some point and ask but I just wanted to toss that out to our PANDAS family to see what you all think. Tracie

We were able to get a it partially covered. He is a great deal cheaper than getting it done in Colorado by Dr. Tom Smith

Hello, we stayed at the Holiday Inn it is just a few mins away from the Surgical Center. It has a indoor pool and room service we needed the room service on the 2 night we were just to tired and dd wes starting to get sick but she wasen't bad just a headach and a little bit of getting sick,but nothing to bad. We went 2 days early and stayed 2 day's after this was our "Vacation" (HA HA) But we just wanted to be sure she was ok when we did leave and I wanted dr.k there as a JUST IN CASE. A GPS IS A MUST Bring something to do when you are getting IVIG dvd player,movies,books,music,computer.. you get it?? there is nothing to do but sit and wait and wait and wait bring in snacks,or you can leave and bring food in I will pm my cell phone # please feel free to call I am in Colorado I hope this helps Tracie

I am so happy for you.. you will always watch her and hold your breath forever our dd is almost 6 months post ivig and I am so nervous for her to start school again she started in kindergarten last year got sick again the first week and never went back sooo we will try again this year. Tracie

you're making perfect sense and we think about that a lot. For us, it was the re-occurence of anorexia symptoms that made the choice easy. I think the points of exacerbation cause the choice points in treatment, not the calms between the storms. I am hoping we have years of calm before any other storms -- Everyone could use the break. Yep,my dd 5 then stoped eating she said everything tasted like paint. we had just had enough of it,called Dr.k on we were off to Chicago a week later. Tracie

All I know is that we will forever be greatful for Dr.k and Diana Pohlman the last 6 months have been the best in 2 years for our dd Dr.K thinks that you need both IVIG and abx's together does it work for all kids? probably not that would be to easy.. but it was a great start for us. our dd NEVER NEVER NEVER tested + for strep BUT Dr.k said it he thinks it started in her ears she had at least 15 or more ear infections in 2&1/2 years. Why&How??? we will never know the reason. Our dd could change in the morning and wake back up into the H**L that she had been I pray not, I pray for all of us. Tracie

Hi I just wanted to know if Dr.Cunningham has been given her money yet? and if she is going to keep in contact on what research she plans on doing? I hope everyone has a good day,I know it is hard with our kids but we still need to try.. Tracie

no - i don't think the questions are stupid - just not sure my brain can comprehend the answers. regarding the use of the word 'stupid'. i was telling my dh about this post -- becasue he so loves it when i retell conversations from this forum -- and ds, 8, told me that i lost two gems b/c i used "the s word" as he calls it and my kids are not allowed to use that word. hmm - do as i do - hmm I don't have a answer to this because it is all over my head..all I know is IVIG has worked for my dd she is 6 as far as saying the "s" word.. I LOVE IT..my dd is not aloud to say it,but sometimes we ALL feel that way I know PANDAS has made me feel stupid,I am glad my husband understands it,he did all of the research and I did all of the mom stuff to keep her happy. Tracie

That is just a wonderful way to start the day take one day at a time,and just think about all of the great day's to come my dd never did that,she was just different after about a month back to herself,mabey because she was only 5? and she did not really know what was going on in her brain and with it getting better she just went with it? Questions Questions???? Tracie

This is GREAT advice! The only thing I would add, is to listen to his VoiceAmerica interview before your appt. Get his basic lecture for free fresh in your head and you will be better able to recognize when he is going down that road. So many parents... he has to assume you don't know anything unless you keep the specific questions coming. This is awesome advice thank you all so much!!!! Where do I find the VoiceAmerica interview? Yes, I would like to know that also

If you can... go a couple of day's early and try to stay a couple of day's after so you can have Dr.k there with just a phone call away. and rent a GPS if you rent a car it is a must Our dd wasn't that bad as long as I was with her,she did great on the plane and she didn't understand eveything that was going on,we just told her that we were going to go and get special meds for her to make her feel better my husband was more freeked out on the plane than she was Anyway yes he will not feel good after the treatments our dd felt fine a couple of day's later so we are glad we stayed over a couple of day's. As for the Hotel we stayed at the Holiday Inn it was nice and it is only 5 minutes away from the surgical center,and it had room service I am not a fan of room service because it is expensive BUT you will be in no mood to go out and eat something and bring something to do!!! while the ivig is going.. laptop,dvd player with movies ,books, games,and snacks,you can go out and get something for lunch and bring it back in. I hope this helped pm us if you need more info Tracie&Doug

I would stay home!!!!!! after all of the money and time with having ivig I know we can't keep out kids in a bubble BUT you can keep them in it for a while you need to give the brain time to heal if he get's strep right away you will just be back in the same boat and you need to think about if there are other kids in the home that could have it but haven't had any signs of it yet.(untill you get there) BUT that is just my thinking Tracie

Yeah!!!! keep us posted on when she will get her check.

Brandy... Just relax listen close to him,he is kinda hard to understand BUT,we think he is the best. he was so good with our dd when she did her ivig Tracie

Yep,all of our kids should be PANDAS Doc's some day

I agree, and tpotter and I can both advise you to not waste your time with CHOP! I think we all need a back up plan on what to do when we can't get a hold of any doc's on the meds that our kids take.

I don't blame you..having a calm house for once is a great thing.. Tracie

Thank's I have had the best sleep in the last 4 day's then I have had in 2 years

I love good news !!! I do believe that there is hope for all of our kid's Tracie

So the side note should be per the couple of threads... NO Dairy(calcium), No Mag, No probiotics, NO Bentonite clay......2 hours before or after abx.....is that the list??? Yes calcium is his key word...

Actually laughed out loud when I read this !! Tracie- Did he give a reason why at all ? he said because of the calcium in it also he said to space out the multi vitamin's also for the same reason.. I am glad this made you laugh today!!! we all need it

He said because of the calcium and he also said not to take the multi vitamins to close with it(because of the calcium) space them out also.