Not panicking--just asking other IVIG experiences

[SarahJane]

Hello. I've not been on the forum as much lately after our ds(6)'s IVIG (Nov 18 & 19), but I have been reading (and doing a bit of posting too). We have seen really good IVIG results for our ds(6)...not at 100% but such a big improvement, so we've been having a bit of normalcy (whatever that is). Amazing! BUT.... The past few days, we've been seeing what I guess is a "flipping the pages backward" response. He's homeschooled, so there's not been any exposure to other kids (a/k/a germ factories). We have been going out a little but still mostly stay at home to reduce exposure. We made a day trip this past Wed to see family (hadn't seen anyone since Sept...the weekend I found out he had strep). AND to top it off, my dh has been sick for the past month+ (likely mycoplasma tho' dr didn't run test) & on/off abx to try to treat it...off when meds run out & on when he goes to get more since he's still sick. So obviously, ds has been exposed to my dh's illness & likely other things during our few trips out shopping or whatever.

 

I'm mostly just looking for a shout out from someone else who did IVIG for their kid. Wondering if a flipping back at 6-7 weeks post-IVIG was indicative of anything else or if the storm was weathered & things got better again. I know from reading past posts that some people didn't even see relief until this point or later. And believe me, what we're seeing is still tame compared to a full-blown exacerbation. We were just really spoiled. He showed residual symptoms and a few new things (as can happen) the first week that mostly cleared by the 2nd week...the past 4 weeks have been good. Then this past Wed on our visit to WV, I noticed some stuff...Thurs it was still there...Fri still there...Sat still here (and we see a little more each day or we're just looking harder for it). I had put him on a different fish oil on Wed after not giving it to him for about a week or so. I doubt that's the culprit but didn't give it today & will lay off it for a few days to see. (I also wondered if the fish oil did something positive but caused negative effects...like reduced inflammation which made him whack out a bit while the brain adjusts. Just seems that it wouldn't work that quickly tho'.) He's also on 250mg zithromax daily & a multi-vitamin with immune boost. I have done probiotic every other day...there were a few days I forgot tho'. Did the spit yeast test this morning, which just sat on top of the water...so I'm not thinking yeast. If he's fighting something off some bacteria, we'd likely NOT see the symptoms of it due to the zith (so if mycoplasma, I don't know if we'd see signs of it--I read somewhere that mycoplasma has a fairly long incubation period & is contagious for a long time too). He has been sniffly, so it could be a cold, which in that case the virus would just have to run its course. He does have allergies, but I don't give meds except for Benedryl at bedtime some nights (with a side effect of drowsiness ). Family members are VERY aware of our germ fears & would have stayed away if sick (actually one of my sisters did stay away due to possible illness, so I didn't get to see her--bummer).

 

I know that IVIG isn't considered a success/failure until 12 weeks with Dr. K. We have been very pleased so far. And like I said in the topic title, I'm not panicking but am concerned a bit. Looking to like-minded individuals for reassurance/advice/etc....

 

Thanks!

Sarah Jane

 

P.S. We only did the immune panel prior to IVIG. I knew he reacted to strep (low titers). Figured if mycoplasma was there that the year of zith would get it. Didn't do Lyme testing because it didn't seem to be indicated, but I've read parts of Cure Unknown & am sufficiently freaked out tho' & aware of its pervasiveness. (NOTE: Another really good read is Osler's Web. I kept getting so mad reading it that I'd have to close the book for a few minutes, or my husband would find me muttering & ask what was wrong & accidentally launch me into a whole rant that he couldn't escape.)

[Guest fr88]

I had IVIG as a child. I have PANDAS. IVIG was the most GOD AWFUL experience of my life. I WILL NEVER do it again. Other people have had great experiences but I am against it for 3 reasons.

 

1. It's not the cleanest way to treat PANDAS- You are putting other peoples antibodies in you. They screen the blood for the diseases and infections that they KNOW about. I wonder how many bacteria are out there that haven't been recognized yet. How many viruses? How many parasites?

 

2. Caused a HUGE PANDAS exacerbation. There are other ways to treat PANDAS without that.

 

3. IVIG may need to be repeated in some cases in order to be effective.

Edited January 9, 2011 by fr88

[kimballot]

 

P.S. We only did the immune panel prior to IVIG. I knew he reacted to strep (low titers). Figured if mycoplasma was there that the year of zith would get it. Didn't do Lyme testing because it didn't seem to be indicated, but I've read parts of Cure Unknown & am sufficiently freaked out tho' & aware of its pervasiveness. (NOTE: Another really good read is Osler's Web. I kept getting so mad reading it that I'd have to close the book for a few minutes, or my husband would find me muttering & ask what was wrong & accidentally launch me into a whole rant that he couldn't escape.)

 

Sara Jane -

 

I am wondering if your son had any immune deficiencies prior to IVIG. Several families with immune deficient kids are reporting a return of symptoms after about 6 weeks (some longer, some shorter).

[SarahJane]

No immune issues showed--all within range. I'm still thinking it's a flipping back of the pages. We've seen small things during the past 4 weeks but not days where they were present (but I know that can happen), & it's not present all the time either. We are still able to still reason with him, which is a very good sign IMO. It's nothing like where we were prior to treatment. Just wondering if anyone else had weeks of good, then a glitch, then back to good. Actually, 2 days prior to symptoms showing, he did something good that he hadn't done since April or May (wrote a 32 page story with illustrations). So I think we are still okay...just concerned. Plus, he's almost 7, so some things could even be age appropriate, but we'd been so bad for so long that this time post-IVIG has been really nice. Will see how he's doing today.

 

Thank you

[ExpatMom]

Hi SarahJane,

My son had his first IVIG in August. Initially, first couple weeks, his symptoms were worse. He also had a lot of side effects from the IVIG such as headache, vomiting, etc...However, after a couple weeks he made remarkable improvements. This however was followed by the usual "up and down" pattern of good days and bad days. The bad days though were nothing like the bad days we experienced before the IVIG. I too started to question and despair that maybe the symptoms would get worse or that my son would not improve again. Sometime around 12 weeks though, he settled into what has so far been a pretty stable recovery. He has some days when he will experience some mild anxiety, but he is able to cope with it. We are now almost 6 mos. out and he is leading a pretty much "normal" life again. Every day I wake up wondering if this will be the day something changes, but as time goes by, I become more and more optimistic. IVIG was rough yes, but so far it has changed my son's life in a way that no amount of medication, CBT, or anything else ever has. He now has a chance at a normal life. I pray it continues. Best of luck to you and I hope this helps. Let me know if you have any other questions or you just need some "moral support".

 

P.S. AT this point, when my son has a mild return of symptoms, I can usually tie it to someone in the house being sick or my son having a mild cold etc...At that point, my son is usually put back on high dose antibiotics for a time and the symptoms resolve. It is more difficult to do this in the beginning as the periods of ups and downs are more frequent and overlap.

[SarahJane]

THANK YOU ExpatMom! I'm so happy to hear good news on here. Glad your son is doing well. I'm not sure how long you'd been in PANDAS prior to IVIG, but getting to "normal" is such a feat. We saw some more "stuff" last night, but ds went to bed early (which meant I got to go to bed early!) He woke up early but so far is in good spirits. I can sometimes tell in the morning what kind of day it's going to be by whether or not he's talking, and he was chattering away this morning & giggling too. So...I believe that it could have been a reaction to exposure since my dh has been sick for so long. Or ds was sniffly for a few days, so maybe a cold virus caused the blip. Or maybe a solar flare caused it. Who knows since it's PANDAS! I did take him off the new fish oil caps (had been giving him an icing formula b4)...seems strange to me that he'd react to that tho' but maybe? When you have good days and then there are hiccups, it's hard not to get kinda freaked out (even if you know that it can happen during this period after IVIG). Thanks again for recognizing my panic (even tho' I was trying to mask it) and relating your story.

 

I'm curious. What's your high dose of abx? We're on daily 250mg for ds(6 and about 46lbs). This is what I have been on the whole time since IVIG. Dr said we won't even consider every other day until 3 months. I don't know that my son could handle anything higher due to age/weight.

 

P.S. He's in the other room right now singing a song from a Scooby Doo episode. "Tell me, tell me...where you been hidin'...." The TV's not on either...just singing & playing. Cute.

Edited January 10, 2011 by SarahJane