browneyesmom Posted January 26, 2011 Report Posted January 26, 2011 We have our first appt with Dr. B Wednesday morning. I have been working on a list of questions the last few days - it's 2 pages long! Yikes! Any last minute input from anyone about anything I want to be sure I don't forget? Thanks everyone... you've been such a help to us!
Tamistwins Posted January 26, 2011 Report Posted January 26, 2011 Bring snacks and prepared to wait a long time.
browneyesmom Posted January 26, 2011 Author Report Posted January 26, 2011 Ooo... really? We got some granola bars this afternoon & they will be in the car... thanks for the tip, Tami! Both my husband and my ex will be there also... might have to send out one of them for food! lol I hope not too long as we do have a flight home in the afternoon. I now have 3 pages double-spaced of questions for him.
3boysmom Posted January 26, 2011 Report Posted January 26, 2011 We are headed to our Houston airport and headed to CT. We have an appointment on Thirsday morning with Dr B for. All 3 boys. I hope you have a positive experience to post! Good liuck....prayers to you, Linda
NancyD Posted January 26, 2011 Report Posted January 26, 2011 Linda, please stop by at the infusion center to say "hi". I will be there for day 2 of DD's infusion. I met Denise today. Snow is getting bad here. Already have 3" on the ground and they are expecting another foot. Safe travels. Nancy
3boysmom Posted January 26, 2011 Report Posted January 26, 2011 Stuck in Atlanta airport with a cancelled flight and next flight is tomorrow. We will not be there in time for the appointment, hoping for a rescheduel
browneyesmom Posted January 26, 2011 Author Report Posted January 26, 2011 Oh gosh, Linda... so sorry to learn that! We, on the other hand, are stuck up here. Our flight was canceled due to weather and Dr. B is trying to get IVIG approved through our insurance. They won't have an answer until tomorrow. So, we're here overnight to wait and see... might be able to get an infusion tomorrow. Our appt with Dr. B was very good, overall - pretty much went as I anticipated it would. Here is a quick update: Dr. B wants to run more tests: cbc, chem, myco, ASO & Anti-DNAseB, IGeneX... & watch LFT & porphyrins. High dose IVIG every 22-28 days until about 90% improved, then maybe every 8 weeks. Prognosis very good!! Praise God!!! :-D ♥♥♥ He is trying to get insurance approval for IVIG while here; won't know until tomorrow - he has availability. Flight canceled due to weather, lost hotel room; but, found another. Other PANDAS cases here today.... Nancy with her daughter, who we talked with for a while and we met another PANDAS mom with her daughter in the hotel lobby while we were trying to find another place to stay tonight. We're all settled into another place now. I liked Dr. B very much. He was able to answer my questions, instead of the other way around... that was great!
browneyesmom Posted January 26, 2011 Author Report Posted January 26, 2011 Hey Nancy... how did you post this morning? Does he have wifi at the infusion center? I didn't know that - I'll bring my laptop tomorrow, if he does. Oh, maybe you were using a different device... I remember now that your daughter had one. So nice to meet you today & I hope the rest of the infusion went well. ♥
NancyD Posted January 26, 2011 Report Posted January 26, 2011 Denise, it was great meeting you too. Your DD is adorable! I have my iPhone so I was able to post but they do have wifi so bring your laptop. We are back in our room now and DD is in bed resting. Hopefully we'll see you tomorrow. 3boysmom, I am so sorry to hear you are stuck in Atlanta and will miss your appointment!! Nancy
3boysmom Posted January 26, 2011 Report Posted January 26, 2011 He is going to get us tomorrow if we can get there, but at a different tme
browneyesmom Posted January 26, 2011 Author Report Posted January 26, 2011 Yay!!!! I thought they'd try to get you in there! I hope you get a flight up here! He was really good, Linda! .... and Tami... lol... you were right - we got there a little before our appointment and he was running late, so we went to chat with Nancy and her DD. He got there about 1/2 hour later, but was very generous with his time and answering my 4 page of questions once we got into his office, where he brought us to talk. Honestly, I feel hopeful about really getting to the bottom of this and getting it resolved for the first time in a very long time. I am so glad we came up here!
JAG10 Posted January 26, 2011 Report Posted January 26, 2011 Hi Nancy and Denise Thank you for posting they have WIFI at Dr.B's center, that is good to know! My dd11 has an Ipod touch which you can get a free texting app, but it only works with wifi (this was my compromise since EVERYBODY else in her 5th gr class has a phone.) Actually the fact she wants to text at all is testament to how far the first IVIG has brought her closer to her typically developing peers and willingness to participate in written communication Dd11 has her 2nd IVIG next Wed and Thursday, her first was 9 months ago in Chicago. About an hour ago, the phone rang and the caller ID read BCBS I panicked.....did they revoke approval??? No, it was an autocall reminding me to get a pap smear, whew! But perhaps I should take the hint, dd is getting better, I know her best days are ahead and the worst is behind her....now I need to start taking better care of myself!!! Please post if there are any decent eats you find near the center or Doubletree. I looked in the forecast and see snow showers next Tues as well; we'll be driving from Phila; about 3 hours. Thanks! Jill
Tamistwins Posted January 26, 2011 Report Posted January 26, 2011 Hi we really liked Bertuccis, they have good salads and fresh bread, pizza, even fish is good. Something for everyone. They give some PDA dough for kids to play with.
KaraM Posted January 26, 2011 Report Posted January 26, 2011 If you like Thai food, there is a good restaurant across from the Maritime Aquarium downtown NOrfolk. We ate there after a visit to the aquarium, then drove about 10 minutes to the Doubletree. Please post if there are any decent eats you find near the center or Doubletree. I looked in the forecast and see snow showers next Tues as well; we'll be driving from Phila; about 3 hours. Thanks! Jill
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