First IVIG coming up...why am I stressed?

[MissionMama]

DS 11, first (debilitating) exacerbation hit us like a freight train on 10/25... pediatrician, immunologist, psychiatrist, phone consult with Dr. Kevocavic.... Amazing results from 5 day steroid burst (now losing ground...) "highly likely" results from Cunningham Panel just received.

 

Immuno ordered another 5 day steroid burst to stop the attack on the brain for now, we await call from scheduling but will have IVIG infusion either Thursday (Happy New Year!) or next Tuesday 1/7.

 

Shouldn't I be elated? Why do I feel stressed out....filled with (false) hope.... Isn't this what we have been waiting for?

 

Any information, encouragement, support is very much appreciated.

 

Kristi

Edited December 30, 2013 by missionmama

[DsMom]

I am PMing you. This is really positive news!

Erin

[Hrosenkrantz]

I understand why you are stressed out. I was very worried before our first IVIG.

[qannie47]

I know how you feel. I went from elated that my ds was going to get the miracle IVIG to stressed about, "what if it does not work?". My advice, there is no point in putting your energy into what you don't know at the moment, or have any control over anyway.....let that go. Embrace your faith that something good is going to come of this. Put your energy into the positive, Best of luck!!!

[Teri]

I am floored that you are already ready for IVIG. We are two plus years with non-stop abx - combo abx, two steroid tapers, endless Motrin , and we are again in a flair. I have to admit .... I'm jealous. Praying it works out for you!

[MissionMama]

Thanks to each of you.... it is never-ending, such a roller coaster....as is proven yet again as I got another call with the news that IVIG won't be this week, they are still doing some "research" with the dosing - as it is higher than what they typically use in kiddos with immune issues - you know, the "normal" kind of issues that are "real". HA. Actually, I totally get it, I am just joking about the "real" part as I know many of you have fought that battle a lot - and trust me, people like me that have had such a condensed journey to get to this point, thank you immensely. Our regular immuno is out this week and when our ped called their office he talked with the on call partner in the group who is not familiar with PANS/PANDAS at all. He initially looked at the labs (cunningham) and my son's chart notes it was a no brainer for him to order the IVIG, until he realized that the dosing is much higher than is typical for his patients. He wanted to consult with neuro, wait for our main doc to get back next week to make sure everyone was on the same page.... could this be the start of the run around? I am choosing to hope not....

 

Wish us luck.

 

Kristi

 

PS. Teri - I totally get it. I realize how long many, if not most, have had such a longer road than my measly 2 months of purgatory...and I feel for each and every one of you/us that struggles daily. I pray for all of us.

[SSS]

Hi- the IVIG high dose is a big deal (what makes it 'work'), sure you know that...

 

Going through a medical procedure was the scary part for me. Needles, medications, amped me up with anxiety for her, had to pull out my best actress skills, coupled with the worry could she handle it?

She did! Kept the IV thing-y in her arm overnight, too, as to not get re-stuck.

Congrats on 'catching' PANS so fast-

Hang in there, if we could get through it, so can you :-)

[1voice]

My daughter is four and has had two IVIG treatments. Two weeks after the first treatment ALL of her symptoms were gone. The whole process was pretty smooth. My daughter did get sick and vomit the day after because of a bad headache. I think the home nurse gave the treatment too fast. She did not get sick after the second infusion because it was given slower over the course of five hours.

[PowPow]

1voice,

how long has it been since she has been symptom free?

EXCELLENT .

 

how long had she had symptoms?

just interested since she is so little.

[JakeTyler]

I'm a little confused on IVIG. Is it supposed to reset the immune response and be a cure, or just a way out of a bad exacerbation?

[Hrosenkrantz]

me too -- im also interested in the story of anyone who says they are symptom-free (the holy grail!)

[JPdad]

I'm a little confused on IVIG. Is it supposed to reset the immune response and be a cure, or just a way out of a bad exacerbation?

Bump for an answer. I am also curious about this.

[qannie47]

IVIG: Both. Can bring a child out of an exacerbation and in the long term help to mature the immune system in the big picture/long run....They say that with IVIG, a child will still have flares, but as the immune system matures/heals, flares will/should be less intense and shorter induration. Truly, I don't think anybody has all the answers, but this is the best they got.

[airial95]

My son just had his 5th infusion, my daughter her 3rd. It has been a game changer for us. Prior to IVIG, my son would recover to about 85-90% - with lots of residual OCD, however, he was still getting new strep infections, even while on full strength abx/combo abx. That's when we tried IVIG. Headache/nausea after first infusion, but within 48 hours he was eating, dressing himself, brushing his own teeth, and wanting to play with friends. He was 100%. Nothing short of a miracle.

 

He has regressed 7 weeks post infusion each time, so we are on an 8 week schedule (his most recent infusion was last week). A month ago - both he and his sister got strep. While the flares absolutely SUCKED after being practically symptom free since April (just a few bumps the week before each infusion), they were no where near as severe as they used to be. He would be functional a majority of the day, with brief "episodes" here and there that would usually subside within an hour or so. Nothing like pre-IVIG.

 

Tips: HYDRATE, HYDRATE, HYDRATE. Start pushing fluids a few days before (also helps start the IV to be hydrated), and keep them coming through the infusion and for a few days post infusion. It really does help keep the side effects at bay. He had some side effects after the first 2 infusions, and now practically nothing - sometimes a small headache (motrin kicks it) if he hasn't continued to hydrate post infusion.

[airial95]

Oh, and I get the second guessing. When we decided to go forward with IVIG, we were functional, attending school every day, about 80-85% recovered and had finally found an abx combo that seemed to be keeping the strep at bay. We decided we had to make a choice about whether "good enough" was what we really wanted for our son. And we were terrified. It took us over 3 years to make the decision to do IVIG for our son...wish we did it sooner (which we did for my daughter the first time she had a strep induced flare that didn't clear with 30 days of abx as they had in the past for her).