IVIG

[Doug]

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.

Please Keep us posted..I am so sorry that she is having such a hard time

Tracie.

[DaleS]

As of 1:00 our ds was still sleeping. She has now slept 21 of the last 26 hours. At least she is sleeping through the headaches.

[3boysmom]

I think it is time to face reality and come out of denial....Why have I been waiting to contact Dr. K? Because maybe we would be the ones that only needed some antibiotics and all would be fine. He is doing well...but for how long? Reading about IVIG scares the ###### out of me....but this is not an illness for wimps!

[wornoutmom]

So glad to hear she is finally sleeping! Hope you guys are catching up on some zzzs yourself!

 

 

As of 1:00 our ds was still sleeping. She has now slept 21 of the last 26 hours. At least she is sleeping through the headaches.

[donnahs]

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.

Hi Dale (and Mary) it's Donna. You finally talked me into checking out the parents forum. Your daughter has really affected me. I don't think I'll ever forget her or the visible pain you have been going through. I have tears in my eyes (yet again) just writing this. I am glad and privledged to have been a part of your daughter's progress back to the wonderful child that I heard about the last few days. I'm glad she's been sleeping. You ALL needed that. Take Care. Please know, if there's anything that you need, we will do anything we can to help. Keep your heads up. I really believe the end of this horrible roller coaster is in sight!

[DaleS]

Unfortunately, our dd is on a raging roller coaster again ever since she woke up. She did some things tonight that she has never done before (I won't go into the graphic details). With her long sleep, her abx schedule got messed up. Don't know if this is the cause or if it is Post IVIG Stress Syndrome (hopefully this acronym, however appropriate, won't stick). She is calm now but back to doing all of her OCD stuff (counting and tapping 3s, 7s, 15s, 31s, clearing her throat, etc.). She had a new swearing tick (every other word was damn) last night before her 15 hour sleep but that has not come back. This better get better soon.

[melanie]

Mr Mary

 

Hows she doing today? What is the md telling you.There is a definite increase of symptoms after the IV ,thats normal.I feel Im an IV expert weve had 8 so far.It gets better as long as it went correctly.Try Advil it helps with the rages .Music sooths the compulsions.

 

Melanie

[DaleS]

Unfortunately our dd is still raging today. It is difficult to get her to eat and take her meds although she took them better today than yesterday. The only good thing is she is sleeping a lot which limits her waking time in which she can abuse everyone in the house.

One week before our dd's IVIG, the whole family went to get their titers drawn. Everyone was within norm except mine which I found out today (ASO – 272 A DNaseB - 253. My doctor new they were above norm but was not concerned so he didn't call me until today. He didn't completely understand the situation we are in. I am on Aug 875 2x for 10 days now. Ironically, our DD has always though that I was the contaminated one in the house.

 

Can anyone give us their post IVIG experiences? How long did the raging and abusive behavior last?