IVIG

[DaleS]

We are in Oak Brook Surgical Center right now. Our DD is about 1 hour into IVIG with Dr. K.

 

She is not taking it well. She is having a lot of sensory issues with the IV tape, the hair cap, gown, etc.

She is extremely agitated. She isn't even laughing at Dr. K. This is going to be a long 2 days.

[peglem]

We are in Oak Brook Surgical Center right now. Our DD is about 1 hour into IVIG with Dr. K.

 

She is not taking it well. She is having a lot of sensory issues with the IV tape, the hair cap, gown, etc.

She is extremely agitated. She isn't even laughing at Dr. K. This is going to be a long 2 days.

Ahh, sorry she's having such a tough time with it. Praying that she adjusts to the procedure and it helps her a lot!

[Fixit]

just said a little prayer too..

can they give her a valum or something????

[DaleS]

She has calmed down a little. Still having OCD issues but not as agitated. My DW is getting her food now. Hopefully she will eat. Two more hours to go, today.

[memom]

Thinking of you. One more hour to go.

 

Ellie

[melanie]

Thinking of you guys let us know.

[JAG10]

Hopefully, the hard part is behind you. Crossing my fingers she sleeps through tomorrow!

[Doug]

Hang in there!!! Dr.k was sooo wonderful with our Daughter

I am sorry that she is not takeing it well

but I DO know that you are in good hands with him

is Launa her nurse? she is great tell her and Dr.k Hello

from the Patrick's in Colorado,

Tell her I will send more movies when we can.

Keep us posted...

 

Tracie&Doug

[Worried_Dad]

Hang in there, Dale. Our PANDAS son did 3 rounds of IVIG at OBSC with Dr. K. On Day 1 of each 2-day procedure, he told me he couldn't do it and that we had to go home. After Day 1 of the 2nd round, he insisted he could not go back for the 2nd day and we wound up spending that whole night in the hotel room without sleeping... but we made it through Day 2.

 

The good news: Dr. K and the OBSC staff are absolute experts at dealing with the unique challenges of PANDAS children. They always find a way. And - on the positive side - our son always did much better on Day 2 than Day 1.

 

Here's hoping Day 2 is smooth as silk for you, and that IVIG leads to dramatic improvement!!!

 

 

She has calmed down a little. Still having OCD issues but not as agitated. My DW is getting her food now. Hopefully she will eat. Two more hours to go, today.

[bubbasmom]

In St. Louis we were able to find a hemotologist at a cancer treatment center to do IVIG. They do chemo infusions all the time for kids. There's no 'gowns' not like a hospital or anythng. They stay in their street clothes, get it started then roam around this amazing place full of video games, arts and crafts, video games, eat, drink, one had their birthday party there while getting infused! Much more relaxed atmosphere, made it very easy on my son. He just pushed his IV pole around whereever.

[forjpj]

Good Luck!! Keeping you in my prayers!!

[DaleS]

Day 2

Dragged our daughter kicking and screaming to OBSC. We were expecting the hotel to call the police on us this morning. Our dd doesn't want anything to do with either of us so Dr. K and the OBSC staff is taking care of her now (we have Donna not Launa). She has been relatively calm, took the medication they gave her, and now she is sleeping with less than 2 hours to go. Hopefully she will be good after she is done.

 

Tell Patrick that Dr K says hi.

[norcalmom]

Thinking of you! Good luck. You are good parents (even though the hotel staff is calling child protective services as I write this!). Some parents just need to have more mettle than others - you've go it. Keep us posted.

[Mary M]

Thank you everyone for you support. Been home almost two hours but dd is still in the car. She slept 4 of the 4.5 hour drive home but now has had nothing to eat or drink since late last night. We have food and drinks in the car for her but she hasn't touched any of it. We are just sitting here watching the car. Only you guys would understand that that is not crazy. She was horrible when the infusion was over. Didn't want to leave the facility. Donna was amazing. Dr K loved her horrible behavior making us believe that it was a sign things were working. Every time I think this has gotten more surreal, something even more bizarre occurs. But on the a lighter, more positive note, the new tics from the last few days seem to have dissipated. So the rolloer coaster keeps on rolling...

[DaleS]

The headaches and nausea have started. She is now 8 hours post IVIG. We (and when I say we I mean my dw since my mere presence send her into a rage) are having a difficult time getting her to drink, eat, or take any meds. Both of them are out in the car now so I have no idea what is happening.