First day of IVIG was tough....

[Dedee]

We are doing our IVIG at the Doctor's office. She does IVIG for PANDAS and Autism patients and says she is very cautious when doing HD IVIG. We had to sedate my daughter to get the IV in. Gave her IM Versed. She always goes nuts anytime she has to get blood drawn or any sort of medical procedure. Versed works well for her. The IV went well and she got her pre meds and hydration. About 2 hours into the IVIG she started crying saying she wanted to go home and see her brother. We tried to calm her, offering to call her brother, but she just kept getting agitated. They let us get her up and walk around a little since she seemed so restless. Tried to watch a movie, play a video game but she just got worse until she started trying to pull out the IV and was screaming and fighting to go home. I ended up holding her down in my lap while she was screaming and fighting. After about 20 minutes they stopped the IVIG because her blood pressure had gone up so high and they gave her benadryl and more sedation. She calmed down after about five minutes and fell to sleep. After a few minutes of sleeping her blood pressure started to come back down so they started the IVIG back very slowly and increased it over time till we were finally able to complete it. She slept the rest of the infusion. It was very scary. She was horribly irritable on the way home and we took her straight to bed. This morning she seems the same as pre-IVIG. We leave in a few hours for final dose. I am extremely anxious. All I can think about is that extreme rare chance of stroke. Has anyone had this happen during infusion? Is she getting to much? She ended up getting it over six hours. She is getting 2grams/kg over two days, so she gets 1gram/kg per day X 2 days. I understand this to be the PANDAS high dose protocol. They are doing 250cc of hydration before and after infusion and also benadryl and steriods before each infusion. She was starving after we were finished and ate more than I have ever seen her eat before she went to bed. I gave her motrin last night and this morning. Any thoughts or suggestions? I am worried and confused as to what this could mean. Very concerned about today's infusion.

 

Dedee

[peglem]

Did she have anything to eat during the infusion? My daughter snacks all day through the infusion. And hunger does trigger rages for her. Could it have been the coming down from the versed?

[Dedee]

She ate a huge lunch before we left but we probably should have taken more snacks. We are going to try that today. I do believe that Versed withdrawal contributes like you said. Anytime she is really tired she rages easily. There just isn't any other way to get an IV in her. It takes four people to hold her down and then the nurse to start the IV. It is so traumatic and breaks my heart. Some children get used to going to the doctor and having medical procedures. But for her, it's traumatic every time. I try to give her control over situations, but her idea of control is to run out of the room....lol. I just pray she grows out of it. There is still time...she is only seven.

[SSS]

We brought a lot of snacks and drinks, gave throughout- also the benedryl helped.

I am sending you good thoughts---hang in there---get through today, and you are done---

I also squeezed myself right next to my dd6 in that chair-brought comfort object (her blanket)

So sorry----

[peglem]

She ate a huge lunch before we left but we probably should have taken more snacks. We are going to try that today. I do believe that Versed withdrawal contributes like you said. Anytime she is really tired she rages easily. There just isn't any other way to get an IV in her. It takes four people to hold her down and then the nurse to start the IV. It is so traumatic and breaks my heart. Some children get used to going to the doctor and having medical procedures. But for her, it's traumatic every time. I try to give her control over situations, but her idea of control is to run out of the room....lol. I just pray she grows out of it. There is still time...she is only seven.

My 16 year old still has trouble with needles, and we still need versed to even get an xray or ct scan- its an anxiety thing. I wonder if they's be willing to taper the versed down so the withdrawal is more gradual- that's what I do w/ valium, which we still use for every IVIG. But, I'm the one who gives that, so I have more control over administration than you do with versed.