browneyesmom

... my hubby and I going home & she will spend night with my ex, her daddy ... hope she does ok & gets some overdue sleep there...

Safely off plane, thank you all so much! My ex came to different airport to get us, taking us to original airport to get van now. Oh Linda, so sorry.... bless your hearts... praying you get home safely & soon.

Several flght delays & bumps... very hard on her.....so tired. She did not get all her meds either. On flight now... anyone... pls pray she is stable. Ty

Several flght delays & bumps... very hard on her.....so tired. She did not get all her meds either. On flight now... anyone... pls pray she is stable. Ty

Wendy, you are so sweet... we're fine, but bless you for making such a helpful offer!

It truly was our pleasure hanging out with your sons; we enjoyed them! Praying things improve for all of you soon! ♥

I enjoyed meeting your boys, Linda! Great to meet you as well; praying you have a safe flight back.

Nancy, great to see you again today. I really enjoyed meeting your DD & hope she has a great time tomorrow evening! We went to Whole Foods to grab some dinner... you were not kidding - AMAZING salad bar area!! We're back at the hotel now... with our cookies - hehe - and will fly home tomorrow. We're due back in 4 weeks for the next one; we have approval through August for now... Linda, it was so nice to meet you and your family today; your boys are adorable! I know today was a very long day for you, especially after last night's delay. I hope you came away with some good answers and are able to rest well this evening!

Yep... get a copy of those labs. My understanding is that it may alter WHAT they give him, but not that he can't get it at all. My DD11 has low IgA & IgG... just completed her second HD IVIG infusion today at Dr. B's infusion center. Her first was inpatient around Christmas.

Infusion went fine; they gave her 1.5g/kg, so a total of 45 grams Gammugard. We're due back in 4 weeks for another... I am completely exhausted, but just so relieved that she finally has a treatment plan!

Yay Linda! Stop by the infusion center when you get here! Nancy and I are both here with our DD's today.

Louise just called - she's approved! Yayyy!!!! :) We're getting checked out of hotel room & heading over to the infusion center! I'm going to get my daughter back!!!!!

I called the answering service back and asked them to have him call me.... we'll see if that gets me anywhere...

My DD11 was supposed to have IVIG today, if Dr. B's office could get it approved, so we stayed overnight - had a to go to a different hotel than the one we told them, but no calls on my cell yet. She just had another episode. I called the Darien number and was told they are not open until 2 pm... that the infusion center is open, but they don't have a phone in there. ??? Can anyone tell me how to reach them to find out if and when we are supposed to be there for IVIG? Thank you!!!!

No worries Linda... we're safe and sound, warm and dry - that is all that matters right now! The roads are getting really slick... there is a good 6 inches on the roads now - easy, maybe more. I hope his office will be open in the morning and we get approval for the IVIG from insurance to do this before we go home. She really needs it again. We are back at Doubletree tomorrow if we are here another night. I'm praying you get in here by tomorrow to get your boys in to see him! Please keep us posted when you can. Tami... what is PDA dough? Inbox me your email and I'll be glad to send you my list of questions. Some may not apply for you, so just ignore. Actually, the first couple pages are her symptoms. :/ She's about the same here as she is at home... just more irritable, but nothing like what we saw just before her hospitalization at Christmas, so I figure if we get through a day without calling 911, we're doing ok. PhilaMom, thank you so much for the tip about the top floor - we will check that out as we are members! ShadowTails, when my DD11 had IVIG at Christmas, she had 2g/kg over a period of two days - you can look at my older posts for more details about the infusions that I posted at that time. Each one took about 3.5 - 5 hours, 24 hours apart. Dr. B wants to try her at 1.5 g/kg and will "try" to run it over one day, but it will be an entire day, he said. If she does not tolerate it well or that is too long, we will need a second day. He told me that they pre-medicate... that should help prevent reactions & headaches. She did tolerate it fine at Christmas, so I'm not too worried about that part. They start an IV, run D5 prior, run the infusion and flush with D5 afterward. If you have more questions, just ask... or may want to post separate to draw more attention from others, if you need more info. I hope Haley improves. Nancy, it sounds like your DD's infusion today went really well and wow! She did GREAT on the fluids!! I'm so glad it went well for her, no headache and she actually got some rest... hope that is a good sign for where things go from here for her! Thanks for the tip on the CD 57 - I'll try to remember to ask him about that tomorrow, but certainly before we send it - today was rather chaotic when we met with him.

Got it! Thanks so much! I thought I saw something about Mon-Wed on the paperwork in the chaos of today! We'll have them drawn when we get back home.

I'm about to run out of the hotel to pick up some things, but wanted to offer this: If one of you could stay with your DD, perhaps the other parent might be able to take out your son for some dedicated time? You could swap who stays with which child... hope this helps. It is so difficult and I hope the IVIG helps her.

Ok, so Dr. B wants us to do IGeneX testing and he gave me a kit to have it done. I opened it and saw 2 tubes for a blood draw... umm... no blood draw set? I'm a nurse, but I need a needle to get blood in that tube! lol So, I guess I have to take her somewhere to get this done? What have others done with the IGeneX? Also, I think I saw something in there about only having it done/sent certain days? Any input would be appreciated - thanks!

Aww, that's sweet, Jill! I know the feeling about sounded old... a hs friend of mine lost her DH after almost 28 years of marriage last week. When I saw the actual number, I felt kinda old myself! ;p Oh... and Nancy... I see the CD 57 test on the IGeneX kit now, but he did not order that one for her. Yep, DD11 informed me Doubletree has a heated pool. I would have been happier to stay there another night - it's really nicer than where we are tonight, but this will be ok - the important thing is getting her well.

There is an aquarium in the area? Oh, how nice... maybe we'll go check out that .... and I love al types of food - the Thai place sounds good - thanks Kara!

hahahaa Jill!! They had cookies yesterday, were out this am and had warm, fresh ones this afternoon! Delicious!!

Hi Jill... yes, please get that pap smear done! I missed last year myself and 2 years of Mammograms! Ugh! ...and being a nurse, you know I know better! I had to go back for diagnostic on the Mammo, but it all turned out ok after diagnostic & ultrasounds.... hope all is well with you too! Ok, so for food... one of my favorite topics - lol: Doubletree has really good cookies!!! I guess everyone who has stayed there knows about those already! Bummer, we are not there now... they were booked & we had to move to another place once our flight was canceled and we found we'd be staying longer to try to do IVIG while here. We ate at Friendly's last night (she got to choose) and it was good. Dr. B's office gave us a couple of delivery menus and we had them deliver right to his office today while waiting for answers on the insurance approval for her IVIG. Gosh, can't even remember the name of the place now - they were both Italian delivery places. Bertuccis... thanks for the tip on that, Tami... we will need something this evening & tomorrow!

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!

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. ♥

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!