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[greeneyes48072]

Well I think it went pretty well. Dr K said he was one of the more boring IVIG's he's done-not too much as far as side effects. He was super nervous, of course, there was some drama putting in the iv, but I'm sure that's normal for kids. Then his only problem during the IVIG was a temp that fluctuated up and down from about 99.9. The morning of the second infustion Dr K indicated that he saw no facial tics and his pupils were dramatically smaller (couple of vocal tics remained). Today, first day after, he has had a pretty bad headache, but the advil takes care of it. Has also had a bit of a sour stomach, but not too bad-threw up once. He has been in a really good mood, but I don't know if that's the IVIG or not (he's been pretty moody during blow ups). Still no facial tics today, but the two vocal ones are still there, but less frequent (a nose sniffle and asthma like gasp). I will update again in a couple days...

[T_Mom]

Greeneyes, thank you for keeping us updated-- It is good to hear that you are already seeing some improvements--we will continue to hope for more as the days progress--

All the best to you all--

TMom

[michele]

I am so happy to hear about your procedure! Glad to hear all went well. Please keep us posted as time passes. I am hoping to get the IVIG in July for Andrew from Dr. Latimer so any advice or information would be appreciated. All the best.

Michele

Greeneyes, thank you for keeping us updated-- It is good to hear that you are already seeing some improvements--we will continue to hope for more as the days progress--

All the best to you all--

TMom

[greeneyes48072]

I would recommend following Dr K's protocol to a T. He does things in a way to be very careful and avoid any major side effects. I even had some tests ran prior on my own. Checked for IgA, to make sure he had them (people without it can have a very very bad reaction to IVIG), also had him see a cardiologist and had his kidney function tested. As far as Dr K's ways, he uses a particular brand of IG for a reason, I would make sure to use the same brand. He gives the kids benadryl and tylenol to start, some saline before and after each session, I would follow his speed and amounts-broken into two days as well...I hope that you are able to get it as you hope! And that it does well for him! Thank you guys for everything.

[peglem]

I would recommend following Dr K's protocol to a T. He does things in a way to be very careful and avoid any major side effects. I even had some tests ran prior on my own. Checked for IgA, to make sure he had them (people without it can have a very very bad reaction to IVIG), also had him see a cardiologist and had his kidney function tested. As far as Dr K's ways, he uses a particular brand of IG for a reason, I would make sure to use the same brand. He gives the kids benadryl and tylenol to start, some saline before and after each session, I would follow his speed and amounts-broken into two days as well...I hope that you are able to get it as you hope! And that it does well for him! Thank you guys for everything.

My daughter has low IgG and low IgA, so does that mean she is not a candidate for IVIG? Or is there a way to increase IgA?

[greeneyes48072]

According to a local immunologist I sopoke to, she said as long as long as they have some IgA, they are fine (we didn't speak about IgG, but I'm guessing it would be the same). She said the problem is when they have absolutely no IgA, because if the body has no IgA, it would see the IgA in the IG serum as a foreign substance and the body would attack it, so she said levels didn't matter, just needed some...

[ShaesMom]

[.

My daughter has low IgG and low IgA, so does that mean she is not a candidate for IVIG? Or is there a way to increase IgA?

 

 

IMO--You need to speak with a very informed medical doc before you do IVIG because from what I've read the low levels of antibodies (unfortunately, I don't remember exactly which antibody it is) increases the risk of an anaphylatic allergic reaction.

[michele]

Okay this really scared me about the reaction. I really got a hard time from my mom today about the safety of this whole IVIG process, She is saying we better not treat him as a guinea pig and try risky things on him that could cause longterm complications. Like my grandma got a blood disorder when getting blood transfusion. How risky is the IVIG? Those who had the IVIG done last fall, how are your kids now? Are they symptom free or does the PANDAS return with rexposure? Did it work with one IVIG or do they need it multiple times? Why are so few Dr's doing the procedure?

 

Michele

quote name='ShaesMom' date='Jun 29 2009, 10:08 AM' post='34482']

[.

My daughter has low IgG and low IgA, so does that mean she is not a candidate for IVIG? Or is there a way to increase IgA?

 

 

IMO--You need to speak with a very informed medical doc before you do IVIG because from what I've read the low levels of antibodies (unfortunately, I don't remember exactly which antibody it is) increases the risk of an anaphylatic allergic reaction.

[dcmom]

Michelle- You definitely need to talk to your do, but: There are MANY docs doing IVIG, just not for pandas. It is not an experimental therapy at all, it is only "experimental" for pandas because there haven't been enough studies.... (and unfortunately there may never be...)

[ShaesMom]

Michele,

 

I meant in no way to imply that IVIG is dangerous or risky overall but I do know that some people are more prone to allergic reactions because of other issues going on within their bodies (ie. a certain immoglobulin deficiency).

 

IVIG is a very common procedure. Some individuals with specific immune deficiencies receive IVIG monthly. It is also used to treat MS and AIDS patients in addition to many other immune disorders and diseases. If you have never googled it you should give it a try.

 

Our local allergy office does IVIG in their office (we live a smaller community in Nebraska 250,000) and also our hospital.

 

Have you met with an Immunologist in your area regarding your daughter's low IGG and IGA levels? This may make the process of getting IVIG approved by insurance a whole lot easier. There is an immunodeficiency disorder called Selective Iga Deficiency and another called Common Variable Immune Deficiency for those with low Igg levels. Check out the website www.primaryimmune.org and click on publications. Look for a purple and blue publication called "Patient & Family Handbook" Read chapters 1, 2, 4 & 18.

 

We were given this publication last week by our Immuno to read. We just found out through some addt'l bloodwork that our dd7 does have an immune deficiency and that her B lympocytes do not work properly. This is good news for getting IVIG approved by insurance but means we are likely looking at a long term issue rather than an one time fix with IVIG for the Pandas.

 

If you haven't already seen an Immuno--make an appt and further explore her immune system.

 

Sam

[greeneyes48072]

Well, not going as well as I would have liked, but Dr K said it can take 7 to 12 weeks to see full effect. Tics increased Tuesday and are still at the increased level even today. I'm hoping to see them drop off any day...

[michele]

More tics scares me. My sons eyes are rolling and he is grabbing his bottom and up on his toes already more then ever. How is the anxiety? What improvements have you seen.

 

Michele

 

 

Well, not going as well as I would have liked, but Dr K said it can take 7 to 12 weeks to see full effect. Tics increased Tuesday and are still at the increased level even today. I'm hoping to see them drop off any day...

[Kayanne]

Okay this really scared me about the reaction. I really got a hard time from my mom today about the safety of this whole IVIG process, She is saying we better not treat him as a guinea pig and try risky things on him that could cause longterm complications. Like my grandma got a blood disorder when getting blood transfusion. How risky is the IVIG? Those who had the IVIG done last fall, how are your kids now? Are they symptom free or does the PANDAS return with rexposure? Did it work with one IVIG or do they need it multiple times? Why are so few Dr's doing the procedure?

 

Michele]

 

Michele,

Dr. Latimer told me that she does the procedure in the hospital, and it is safe.

 

Greeneyes, I'm glad the procedure went really well for you. How is you son now?

[greeneyes48072]

Not sure what to think right now. I know back when we did the steroid burst, his results were delayed until day 5 of the burst. So I'm hoping that the same is true here. He was in a really good mood Sun and Mon. His bad attitude/defiant behavior came back Tues, and has remained every day since. Here I'll just copy and past my week update I emailed to Dr K:

 

Sunday-tics less, in good mood, only visible tics were a nose sniffle and squeak/asthma like gasp. In good mood, but fairly hyper.

 

Monday-tics even less, only a nose sniffle this day. Still in good mood, still hyper.

 

Tuesday-tics increased, yelling/loud talking tic returned. Not so hyper, but kind of a nasty attitude.

 

Wednesday-tics still increased, still has nose sniffle, squeak/gasp and yelling/loud talking. Still has bad attitude.

 

Thursday-tics still increased, still has all three, sniffle, squeak/gasp, yelling. Still has bad attitude.

 

Friday-nose sniffle has stopped, but still has the squeak/asthma like gasp and yelling/loud talking. Also saw a few mouth opening tics. Still has bad attitude.

 

Saturday-so far (as of 11am) still has squeak/asthma like gasp and yelling/loud talking. No sniffle tic seen since Thursday. Have not seen mouth opening tic yet, but only been awake three hours so far. Not sure about attitude yet, no defiant behavior yet today...