Sleepless in South Bend

[billn]

Thank you for your encouragement, on up days it's fairly easy. It has been a long day. My daughter cried grievious hurt tears during "counseling" when her counselor wouldn't submit to her OCD requests. She has such deep deep grief that she doesn't usually let out from the loss of her mother and the frustration of pandas making the world so fearfully hurtful. I wish the system of well-meaning practitioners could be as quick to administer IVIG as CBT. I wish somehow we parents and the practitioners could experience the world from their viewpoint to better understand how to help them while they are inflamed.

 

My special thanks to the people at Moleculera Labs for taking time to listen to me and give me links to support sites.

 

I just read about Tessa Gallo at the Stanford site, the pans suffer mis-diagnosed as bipolar, and find it yet another incident of how things are slowly being improved for treating these children.

 

I will keep you posted how things go in Detroit with Dr. Chugani. Having spoken with his people I get the impression they really care about pandas as well.

Edited August 14, 2015 by billn

[WorriedDADNMOM]

Best of luck to you. God bless you and your family.

[billn]

I now have a prescription for IVIG, which I believe is the next step in treating my daughters autoimmune encephalitis.

 

Dr. Harry Chugani and the other doctors working with him were knowledgeable, patient and sought my participation in the interview. At this point I believe the money I spent to get the Cunningham panel may be the best investment of my life. Her credentials and the data cut through all discussion and made it a very simple conclusion to move on with IVIG.

[billn]

Going in this morning for IVIG, dd11

(Taking deep breaths, thinking goid thoughts)

 

Wish us the best

[billn]

If incidence of pandas is as high as 1:40 among white males

 

Then IVIG plasma donated from 1000+donors contains how much pandas antibodies?

 

What am i missing here?

[billn]

Two days of infusion done, gamunex-c 5% 800ml bag using nimh flow protocol.

 

No problems during. Some nausea 3hrs after getting out, and migraine.

 

Any oils or help for this?

Edited August 23, 2015 by billn

[billn]

Migraines seem to be over, day 5 post IVIG.

[mmiglio]

How are her other symptoms?

[billn]

She is getting up earlier, 6:40 this morning, compared to 9:00 or so before.

 

She can get into and out if the car more quickly with less ritual frustrations.

 

She seems more relaxed and seeking social engagment, seeking to affirm me.

 

But what do I know, it is just day 9

[billn]

My daughter had a nice Labor Day weekend at grandparents with the couple days at the beach. But she wouldn't take the antibiotic because they were only providing water and she gags on the Augmentin requiring Apple juice or milk to get it down.

 

I learned about this three days into her holiday and strongly urged her and them to restart the twice a day antibiotic. When she got home after day six I found she'd only had four doses and had a sunburn. She also was in a bad bad pandas flare.

 

I've got her back on meds she's getting better and I hope this didn't screw up the ivig.

Edited September 12, 2015 by billn