First day of 1.5g/kg IVIG completed

[melanie]

Well, its only been 2 days since we completed the 1st high dose IVIG. I expected really bad...and we've had a bit of bad stuff, but overall, this is much better than she reacted after the 2nd low dose IVIG. I can keep her pretty even tempered w/ ibuprofen, tylenol, and valerian root, as long as she gets something to eat @ every half hours. We've had several outbursts of aggression, but they are short. I can handle this!

 

 

great sound promising hope this works...whats the plan every how many weeks till the next one?

 

melanie

[peglem]

Well, its only been 2 days since we completed the 1st high dose IVIG. I expected really bad...and we've had a bit of bad stuff, but overall, this is much better than she reacted after the 2nd low dose IVIG. I can keep her pretty even tempered w/ ibuprofen, tylenol, and valerian root, as long as she gets something to eat @ every half hours. We've had several outbursts of aggression, but they are short. I can handle this!

 

 

great sound promising hope this works...whats the plan every how many weeks till the next one?

 

melanie

We're supposed to do another one in 4 weeks.

[melanie]

Well, its only been 2 days since we completed the 1st high dose IVIG. I expected really bad...and we've had a bit of bad stuff, but overall, this is much better than she reacted after the 2nd low dose IVIG. I can keep her pretty even tempered w/ ibuprofen, tylenol, and valerian root, as long as she gets something to eat @ every half hours. We've had several outbursts of aggression, but they are short. I can handle this!

 

 

great sound promising hope this works...whats the plan every how many weeks till the next one?

 

melanie

We're supposed to do another one in 4 weeks.

 

 

And Latimiere set that up with your immunologist right.Im soposed to see her June 4th I dont think shes going to convience my md to increase the dosage.So I dont know why Im going to go,

 

Melanie

[peglem]

Well, its only been 2 days since we completed the 1st high dose IVIG. I expected really bad...and we've had a bit of bad stuff, but overall, this is much better than she reacted after the 2nd low dose IVIG. I can keep her pretty even tempered w/ ibuprofen, tylenol, and valerian root, as long as she gets something to eat @ every half hours. We've had several outbursts of aggression, but they are short. I can handle this!

 

 

great sound promising hope this works...whats the plan every how many weeks till the next one?

 

melanie

We're supposed to do another one in 4 weeks.

 

 

And Latimiere set that up with your immunologist right.Im soposed to see her June 4th I dont think shes going to convience my md to increase the dosage.So I dont know why Im going to go,

 

Melanie

 

Not exactly. The immunologist here said he would do IVIG IF it was recommended by Dr. Latimer. She did recommend, but only specified a dose because I asked her to. She recommended 1g/kg. The immunologist ignored her recommendation and decided to rx small dose, standard for immune deficiency. When we had problems with that, I couldn't get an appt. w/ her reg. immuno because he was all booked up. So, we got in to see his brother at the same practice, who told us he'd reviewed Dr. Latimer's recommend, but the literature on PANDAS treatment said 1.5g/kg. So, we said, "yes sir"

[trggirl]

Peg, do you know what literature said 1.5g/Kg for PANDAS? I am only aware of the IVIG/Plasma exchange study that used 2g/Kg done over 2 days. That one must have slipped by me.

[saidie10]

wow that sounds tough. i hope tomorrow is better. i hope and pray for you that each day gets better

[peglem]

Peg, do you know what literature said 1.5g/Kg for PANDAS? I am only aware of the IVIG/Plasma exchange study that used 2g/Kg done over 2 days. That one must have slipped by me.

I'll go look for it. Its really literature on autoimmune disease in general, and higher dose being anti-inflammatory vs. pro-inflammatory low dose. I think we had a thread on it a while ago. I'll see if I can find it.

[peglem]

Peg, do you know what literature said 1.5g/Kg for PANDAS? I am only aware of the IVIG/Plasma exchange study that used 2g/Kg done over 2 days. That one must have slipped by me.

I'll go look for it. Its really literature on autoimmune disease in general, and higher dose being anti-inflammatory vs. pro-inflammatory low dose. I think we had a thread on it a while ago. I'll see if I can find it.

 

Here's the thread. It has references to quite a few papers:

http://www.latitudes.org/forums/index.php?...ig+inflammation

[trggirl]

Thanks Peg!

[Mary M]

It took both my dh and myself to get her to the lab today to get the Cunningham test drawn. Do the docs who do IVIG ever use versed or something similar to calm the pt in order to get teh IVIG done?

 

My daughter was on 30mg! of valium this morning when we had the tussle over getting in the van! The immuno who ordered Allie's IVIG told us that her pediatrician would have to be in charge of pre-medication. Since we already have an "as needed" valium rx that we used to fly her to DC and back- we just use the same dosing strategy that got her on the plane! And we use emla cream for the needle stick. It takes 10mg of valium to do a blood draw, unless she's in exacerbation, then it takes 20. I don't like that I've had to resort to this, but, if she didn't need the valium, she also wouldn't need these procedures that she takes it to get through.

 

 

You are amazing. I so appreciate that you've shared your experience with me. Our dd used to "hide" her symptoms really well in front of others but she is losing that skill these days. I will check with the ped and Dr K as to having a standing order in the event we need it for IVIG.

[Mary M]

Well, its only been 2 days since we completed the 1st high dose IVIG. I expected really bad...and we've had a bit of bad stuff, but overall, this is much better than she reacted after the 2nd low dose IVIG. I can keep her pretty even tempered w/ ibuprofen, tylenol, and valerian root, as long as she gets something to eat @ every half hours. We've had several outbursts of aggression, but they are short. I can handle this!

 

 

You give us all hope. May the light at the end of the tunnel shine brightly for you over the next few days/weeks as you push through this.

[peglem]

So, just 4 days out. I gave lots of ibuprofen over the weekend and some valium or valerian when she really needed. This AM she was pretty ragey- but communicative, too. We usually do not get both. Very difficult getting her to school. But, after the 1st hour or so of school (according to teacher), she had a fantastic rest of the day. Lots of laughs and fun! This is her last week of the regular school year, so its a more relaxed week. But, I picked her up after school to take her to the doc. and she did great! She's been terrific all this afternoon and evening, w/o ibuprofen or anything! She's been a bit mommy-clingy, but no rages! I hope she's really turned the corner here and not just the tip of a sawtooth!

[melanie]

So, just 4 days out. I gave lots of ibuprofen over the weekend and some valium or valerian when she really needed. This AM she was pretty ragey- but communicative, too. We usually do not get both. Very difficult getting her to school. But, after the 1st hour or so of school (according to teacher), she had a fantastic rest of the day. Lots of laughs and fun! This is her last week of the regular school year, so its a more relaxed week. But, I picked her up after school to take her to the doc. and she did great! She's been terrific all this afternoon and evening, w/o ibuprofen or anything! She's been a bit mommy-clingy, but no rages! I hope she's really turned the corner here and not just the tip of a sawtooth!

 

YEA!!!!

[Mary M]

So, just 4 days out. I gave lots of ibuprofen over the weekend and some valium or valerian when she really needed. This AM she was pretty ragey- but communicative, too. We usually do not get both. Very difficult getting her to school. But, after the 1st hour or so of school (according to teacher), she had a fantastic rest of the day. Lots of laughs and fun! This is her last week of the regular school year, so its a more relaxed week. But, I picked her up after school to take her to the doc. and she did great! She's been terrific all this afternoon and evening, w/o ibuprofen or anything! She's been a bit mommy-clingy, but no rages! I hope she's really turned the corner here and not just the tip of a sawtooth!

 

What good news...a little relief can go a long way...and it may mean some true recovery is forthcoming.