Chicago help

[norcalmom]

Hi all,

We finally had our call with Dr K and are scheduled for ivig in Chicago. I am making travel arrangements. My biggest question is what day should I depart from Chicago? The day after the ivig or two days after? I'd hate to drag a vomiting kid with a splitting headache through car rental returns and security, not to mention a 4 hour flight.

 

Does anyone have a recommendation on where to stay? We have office visit on weds, ivig on thurs and friday..then depart on either saturday or sunday (depending on your input). I assume his office and the ivig site are near each other?

 

My husband will stay behind with our daughter, so I am on my own with ds. Any input appreciated. I'm quite anxious about the whole thing.

 

Norcalmom

ps - on top of this we aren't actually going straight home..we are going from Chicago to two weeks "vacation". It was planned months ago. We are visiting family so it is OK - but I'm really terrified of the "turning back pages". I am preparing for the worse and setting expectaions that ds will be very irritatble and sick from his treatment.

[mama2alex]

When are you going? We will be out there next Wed - Sat. I struggled with the same decision. In the end we booked flexible tickets on Southwest, with a scheduled return of Saturday afternoon (IVIG is also Thurs and Fri). So if he's doing well Saturday morning, we'll plan to go as scheduled. If he's feeling bad, we have the option of postponing the return flight.

[tapiash]

Hi all,

We finally had our call with Dr K and are scheduled for ivig in Chicago. I am making travel arrangements. My biggest question is what day should I depart from Chicago? The day after the ivig or two days after? I'd hate to drag a vomiting kid with a splitting headache through car rental returns and security, not to mention a 4 hour flight.

 

Does anyone have a recommendation on where to stay? We have office visit on weds, ivig on thurs and friday..then depart on either saturday or sunday (depending on your input). I assume his office and the ivig site are near each other?

 

My husband will stay behind with our daughter, so I am on my own with ds. Any input appreciated. I'm quite anxious about the whole thing.

 

Norcalmom

ps - on top of this we aren't actually going straight home..we are going from Chicago to two weeks "vacation". It was planned months ago. We are visiting family so it is OK - but I'm really terrified of the "turning back pages". I am preparing for the worse and setting expectaions that ds will be very irritatble and sick from his treatment.

 

Hi There

I will share with you are experience last week. My son had a 2g infusion. It was done all in one day. I know its not very typical but that is how my doctor ordered it. We had an awesome day and night but the next day was a nightmare. He woke up in the morning screaming and vomiting. He was very sensitive to the light we stayed in a dark hotel room all day. It wasn't until the end of the day that we could finally turn on the tv. I literally thought he was going to die. He was yelling take me take. Not sure where he wanted to go but I was assuming somewhere to take the pain away. We pre and post treated with ibuprofen and steroids. This past week he has been very tired. He takes a nap every day.He is not eating much either. Once again he is very irritable with a low frustration tolerance. While he was on steroids those were some of his gains. It is manageable but it is till a bummer. OCD is better. I haven't seen much change. I think your son will be fine but honestly I would fly back immediately after ivig. What I have read from others is typically side effects happen the next day. When we have our next IVIG, we will travel 4 hrs home the same evening. There is no way I want to get stuck again in a hotel room with a screaming child. I felt so helpless and praying I never have to experience anything like that again.

Edited July 22, 2010 by tapiash

[sf_mom]

We always left the following morning after treatment with no problems other than being SUPER HYPER... I hear the Hyatt is nice but plenty of hotels near by the surgical center. Courtyard by Mariott, Westin, Holiday Inn to name a few. There is always the hotel the surgical center recommends for $65.00 a night. Its a very basic hotel (sorry I forgot the name) but its quite and we always got a room on the top floor in the back so we could be off in our own little corner.

 

I recommend Capri's if you like Italian food.

 

Good Luck to the both you!!!

Edited July 22, 2010 by SF Mom

[danddd]

norcalmom, and mama2alex,

 

did the dr. have you do the 5 day prednisone and 2 week observation first?

that is what we are doing now, and i am anticipating flying for in ivig too.

how long is the wait when you scheduled the ivig?

i hope it all goes well and smooth, good luck!

 

danddd

[Tenacity]

Hello!

 

Naturally, there's no "one-size-fits-all," but, in case it might be of any help:

 

We are 3 months post-IVIG with Dr. K. We stayed at La Quinta (upon the helpful advice of another PANDAS mom on the forum). No frills, but comfortable, friendly, inexpensive, lobby breakfast, and very close to the Oakbrook Surgical Center where IVIG is administered. (There are lots of other choices, which you can explore through the AAA website. If you do pick La Quinta, be aware that it is set back behind other commercial buildings, so you have to watch the addresses and look out for a small roadside sign.)

 

Our son did suffer headache and vomiting the morning after he completed his two-day IVIG. Per Dr. K's advance instructions, we phoned him to report what was happening, then administered a steroid prescription the doctor had asked us to fill and have on hand. We weren't sure we would be able to fly home that day, but in the end we pulled it off. The steroids helped, my son was brave, and we carried bags with us in case there might be more vomiting (although, thankfully, there wasn't).

 

You could wait an extra day to fly out -- but what if the second day-after is worse than the first? Follow your best instincts, be prepared to make adjustments if you have to, and GOOD LUCK!...

 

Tenacity

[Doug]

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

[mama2alex]

Yes, he had us do the 5 day course of pred and we had good improvement from that. He also checked my son's circulating immune complexes. We had our first IVIG last December and my son was 75% better for a couple of months. Then he got a mystery illness in early May, lost most of his gains and stopped going to school. We are now working with a DAN doctor in our area to address any and all chronic/underlying/colonized infections. Hopefully, these two approaches together will give us a lasting recovery.

 

I think we scheduled about 2 1/2 weeks out, but Dr. K was at the D.C. conferences so that may have pushed out our date. Our IVIG starts one week from today.

 

Hope the steroid burst goes well for you!

 

norcalmom, and mama2alex,

 

did the dr. have you do the 5 day prednisone and 2 week observation first?

that is what we are doing now, and i am anticipating flying for in ivig too.

how long is the wait when you scheduled the ivig?

i hope it all goes well and smooth, good luck!

 

danddd

[norcalmom]

Thank you all so much!! We are scheduled for 5th and 6th of August. Mama2Alex - looks like we will miss each other. Bummer. Anyone else going to be there then?

 

All great feedback. Thank you for sharing your stories. As horrible (and scary) as it might be to be alone in the hotel room, I think I will feel more comfortable being next to the surgical center and in the same state as Dr K than several states away. Sounds like it could be the longest day of my life wherever it happens (tapiash's expereince - yikes!) - at least I'm now prepared for what it could be. I think we will plan to stay for the extra day, but fly Southwest so I can leave earlier or later if I need to, and I might make sure I can get a one bedroom suite or something that day if I need a little more space the next day, a place that has room service, and bring plenty to do for the 7 hours it may take. Got it!

[tapiash]

Thank you all so much!! We are scheduled for 5th and 6th of August. Mama2Alex - looks like we will miss each other. Bummer. Anyone else going to be there then?

 

All great feedback. Thank you for sharing your stories. As horrible (and scary) as it might be to be alone in the hotel room, I think I will feel more comfortable being next to the surgical center and in the same state as Dr K than several states away. Sounds like it could be the longest day of my life wherever it happens (tapiash's expereince - yikes!) - at least I'm now prepared for what it could be. I think we will plan to stay for the extra day, but fly Southwest so I can leave earlier or later if I need to, and I might make sure I can get a one bedroom suite or something that day if I need a little more space the next day, a place that has room service, and bring plenty to do for the 7 hours it may take. Got it!

 

I will be praying for you. It really helped me knowing there could be side effects and what to expect. All kiddos react differently but having a general idea was helpful. As bad as it was, we survived and you will too. Thankfully it was over in one day. Keep us posted. How old is Alex?

[Kristy S]

Hello!

 

Naturally, there's no "one-size-fits-all," but, in case it might be of any help:

 

We are 3 months post-IVIG with Dr. K. We stayed at La Quinta (upon the helpful advice of another PANDAS mom on the forum). ....

 

 

Hi Tenacity.. since you are 3 months out did it work? We are planning on doing IVIG with Dr. K if he will take us. Or phone consult is on July 28th. How long did it take to actually get in to do it from the time of your phone consult? I'm terrified..new here too so maybe after reading more I'll feel better.

 

Thanks!

 

Kristy

[Tenacity]

Don't know yet! We're still fumbling our way through the tunnel!... (Some good things are happening, but they're still nowhere near good enough.... I too am terrified, but I do have hope!... )

 

So glad you found this forum. I am relatively new to it myself, since we only got the PANDAS diagnosis this past winter, although my son had been seriously sick for over three years. But I've learned a lot and taken a lot of comfort from the things I've read and the exchanges I've had.

 

Bear in mind that no one -- not even the most knowledgeable and experienced of the specialists -- fully understands this disease spectrum, the complicated underlying pathogeneses, and the complicated immunomodulatory treatments. So no one can tell you with absolute certainty exactly what the right course is or predict exactly what the outcome will be. But M.K. is a special doctor, indeed! Smart, kind and respectful, experienced, dedicated, no-nonsense.... Consulting with him is a big step in the right direction!

 

The true clinical PANDAS specialists are few and far between (you can find their names on this forum), and yes, their schedules are full, and there may be a wait to see them or to receive treatments. (If the wait is terribly long, you might express interest in coming sooner, if there should be a cancellation.)

 

Good Luck!

 

Looking forward to hearing more from you!

 

Tenacity

[norcalmom]

Hi Danddd-

No. We did not do the prednisone burst. My son is 11 years old, and Dr K said that at his age it has mixed results. also, didn't have to do the circulating complexes test - Perhaps there is something about some of the kids existing blood work that is having him ask for that test. I did ask him if we needed that test or mycoplasma - and he said no.

We had already done an immunity panel which included IgG, IgA, IgM and the 4 sublasses - I know you absolutely need that before ivig. He asked for it after we scheduled our appointment with him, and reminded him he already had it in his package of my son't medical files we send before our phone conference.

 

We wanted to schedule the ivig w/him during our conference - but he didn't want to do that. He wanted us to think about it, and to try to get someone to do it locally .he said his talents are in diagnosing the disease, and that administering the ivig is something that can be done anywhere and he would consult w/immunologist in california to follow his protocal if we could find one that would do it. We spent several days looking and couldn't find any one. although there is a doctor in petaluma CA that will start treating pandas kids in mid to late august - they aren't totally set up yet, so weren't in position to schedule it.

 

So, we talked with him on 14th, he confirmed the diagnosis and then we looked for immunologists in out area for a week. We emailed him on 20th to say we couldn't find anyone, and on weds he emailed back and said he could do it for us Aug 5 and 6th. Either we got lucky and there was a cancellation or he is squeezing us in because I also told him that we have a vacation planned aug 8-24th and were desperate to do it before that.