Preparing for IVIG #1- need any helpful advice

[momaine]

You do need to bring your own Advil and Benedryl for when you leave the office. They need it every 6 hours.

 

You can order take out and some places deliver. We did that the first few times. We always bring a friend for her and she doesn't mind staying now that she is better. We get take out or I go to the grocery store nearby and pick up stuff to make a simple lunch or breakfast.

 

We usually eat a good breakfast at The Sugar Bowl so she has something solid in her stomach before all her medications.

 

We bring a big bag of games. Things that don't take up a lot of space. Cards, dice games, and a few board type games that can be played on a tv tray. We also bring our lap tops so the kids can go on facebook.

 

Dd sometimes naps depending on how she is doing because the Benedryl wipes her out.

 

Other than drinking plenty of fluids and bringing a swim suit for the hotel pool,that's all I can think of. My dd tends to get headaches a few days after ivig if she isnt' careful about drinking lots of fluids.

[mom md]

I know every family's journey is different but for us doing IVIG was the best thing we ever did. He is 10 and away for two weeks at summer camp. If you had told me two years ago he would be doing so well I would not have believed it. I can truly say he is back to normal. He has had 4 total IVIGs but the last one in April was done as a preventative treatment rather than due to symptoms. He will have another treatment in October to hopefully carry him through the winter. The IVIG has not only brought us to our current baseline but significantly improve his immune system.

Helpful tips...hydrate, hydrate, and hydrate. The only time we had an issue was when he went in for his treatment dehydrated. He ended up with a migraine for 4 days. He always goes on a steroid taper for a week sround his treatment starting 2 days before. He is pre-medicated also with benadryl and pepcid. We also use emla cream before his IV just to prevent the pain of the stick.

I know I have not posted much but that is because we are in a really good place. I know even if my son relapses and it comes back the IVIG has worked each time and each relapse is much less symptom wise. Best of luck!

[Buster]

What we did see was a dramatic falloff of symptoms post-IVIG for approximately 6 months. Then when there was a fever, symptoms would return. Not disasterous like the last time, but say 40-50% of last time. These would subside, but there was a baseline drift. I guess the way I'd say our case went was if 100% was the worst, we got about 90% back when daughter went on azith, then when got sick again, baseline moved up to about 20% (i.e., 80% better than worst). Then sick again, baseline moved up to 40%. We did IVIG again, returned to about 10% for about 6 months. Then when sick, baseline shifted up again.

I'm sure you all have checked for other co infections because you have so involved with all of this research through these years. ... How is your DD now? Will you be doing more IVIGs? Is she still on Antibiotics?

 

Our history is that March appears to be the bad month for us. We think this is because dd11 gets sick in February.

 

We will likely do another round of IVIG as we've had good results from prior IVIG's (one in 2009 and one in 2010). In the prior 2 IVIG's we saw 80-90% improvement. This is roughly similar to the results in some cases of Swedo's original study where she found children with acute symptoms and PANDAS consistent OCD symptoms had a 58% improvement one month out from before treatment and a 68% improvement one year out(i.e., this was by no means the cure-all, but there was sustained improvement in these very acute children).

 

One of the better papers (meaning understandable) on why IVIG likely works is here : http://bloodjournal.hematologylibrary.org/cgi/content/full/115/9/1663

 

My summary of the paper is that they think IVIG works by either:

1. Saturating all the Fc receptors on the APCs so APC never presents the auto-antibody
   
2. Binding to a suppressor mechanism (currently unknown) that prevents the APC from presenting any auto-antibodies
   
3. Binding to Fc receptors on the endothelial cells so auto-antibodies have no place to attach and die
   

 

I think it is (a) -- namely that the APCs are saturated and never get around to presenting the auto-antibody and hence the cycle stops -- but who really knows.

 

On the concept of co-infection, there's a lot to consider there. The literature seems quite compelling that Sydenham Chorea is a sequela to an untreated GABHS infection. There's something going on when the immune system can't clear the particular antigen. Perhaps this is what is happening in Lyme too -- the original antigen just can't be cleared. Perhaps it isn't co-infection as much as an inability in some people to clear the original antigen. The immune system does strange things when it goes into "backup mode".

 

If we think that PANDAS is similar to OCD sequela in Acute Rheumatic Fever, then it is likely that PANDAS is a genetic disorder. Apparently about 3-6% of the population is genetically succeptible to ARF/SC. Beyond this genetic predisposition, they need the right strain, they would need to go untreated for GABHS, and about 30% of those would get ARF and about 20% of those would get OCD and/or SC.

 

We do keep our daughter on prophylactic azithromycin, but have concluded that this at best minimizes the reaction but does not stop an infection or reaction. Antibiotics don't kill bacteria, they just help the body's own immune system kill the bacteria. So what we think is happening is our daughter gets colonized when exposed to GABHS, her body has an immediate response and produces the antibodies and the cycle begins.

 

 

Buster

[3boysmom]

What we did see was a dramatic falloff of symptoms post-IVIG for approximately 6 months. Then when there was a fever, symptoms would return. Not disasterous like the last time, but say 40-50% of last time. These would subside, but there was a baseline drift. I guess the way I'd say our case went was if 100% was the worst, we got about 90% back when daughter went on azith, then when got sick again, baseline moved up to about 20% (i.e., 80% better than worst). Then sick again, baseline moved up to 40%. We did IVIG again, returned to about 10% for about 6 months. Then when sick, baseline shifted up again.

I'm sure you all have checked for other co infections because you have so involved with all of this research through these years. ... How is your DD now? Will you be doing more IVIGs? Is she still on Antibiotics?

 

Our history is that March appears to be the bad month for us. We think this is because dd11 gets sick in February.

 

We will likely do another round of IVIG as we've had good results from prior IVIG's (one in 2009 and one in 2010). In the prior 2 IVIG's we saw 80-90% improvement. This is roughly similar to the results in some cases of Swedo's original study where she found children with acute symptoms and PANDAS consistent OCD symptoms had a 58% improvement one month out from before treatment and a 68% improvement one year out(i.e., this was by no means the cure-all, but there was sustained improvement in these very acute children).

 

One of the better papers (meaning understandable) on why IVIG likely works is here : http://bloodjournal.hematologylibrary.org/cgi/content/full/115/9/1663

 

My summary of the paper is that they think IVIG works by either:

1. Saturating all the Fc receptors on the APCs so APC never presents the auto-antibody
   
2. Binding to a suppressor mechanism (currently unknown) that prevents the APC from presenting any auto-antibodies
   
3. Binding to Fc receptors on the endothelial cells so auto-antibodies have no place to attach and die
   

 

I think it is (a) -- namely that the APCs are saturated and never get around to presenting the auto-antibody and hence the cycle stops -- but who really knows.

 

On the concept of co-infection, there's a lot to consider there. The literature seems quite compelling that Sydenham Chorea is a sequela to an untreated GABHS infection. There's something going on when the immune system can't clear the particular antigen. Perhaps this is what is happening in Lyme too -- the original antigen just can't be cleared. Perhaps it isn't co-infection as much as an inability in some people to clear the original antigen. The immune system does strange things when it goes into "backup mode".

 

If we think that PANDAS is similar to OCD sequela in Acute Rheumatic Fever, then it is likely that PANDAS is a genetic disorder. Apparently about 3-6% of the population is genetically succeptible to ARF/SC. Beyond this genetic predisposition, they need the right strain, they would need to go untreated for GABHS, and about 30% of those would get ARF and about 20% of those would get OCD and/or SC.

 

We do keep our daughter on prophylactic azithromycin, but have concluded that this at best minimizes the reaction but does not stop an infection or reaction. Antibiotics don't kill bacteria, they just help the body's own immune system kill the bacteria. So what we think is happening is our daughter gets colonized when exposed to GABHS, her body has an immediate response and produces the antibodies and the cycle begins.

 

 

Buster

 

I think you are correct about that theory. I also believe that some children are responding to other illnesses and vaccinations because they either -NOW have a messed up immune system or already had a genetic messed up immune system and so their immune system did not respond correctly to some of the vaccines (live virus ones included). Many of these kids seem to have had ear infection problems. Dr.L and Dr. B. believe he had strep in his inner ears.

 

Also, my mom's dad had MS, my sister has systemic lupus, my husband's mom has rheumatoid arthritis, and......my husband has(had-passed) an Uncle with Saint Vitas Dance- Sydenham Chorea. Dr. L said that our PANDAS son also had S.C. and that he would not be a candidate for the YALE study because of that reason.

 

I will let you all know how things go...thanks again, Linda

[sf_mom]

Since we've been dealing with Lyme... I thought I'd post a short little video on how the inflammation process works with these types of chronic infections. They know the spirochete is actually in the brain tissue so you can imagine what goes on. Then there is the lingering neurotoxins and bacterial lipo proteins that need to be cleared. I 'imagine' that some of these strains of strep or stubborn forms of strep are not too different with a similar process occurring.

 

Its worth the 7 minute watch even if you are not dealing with Lyme/co-infections.

 

 

-Wendy

[browneyesmom]

Hi Linda,

 

Since we've met, you know most of our story. I just posted an update on us.

 

It sounds like you've already made your decision for IVIG for your eldest. Most have already given good input here - plenty of fluid before, during and after IVIG. I used to buy bottles of juice to keep at the infusion center so she would have something she was willing to drink during infusions. Yes, be sure to have Ibuprofen and Benadryl on hand to give after infusion. Check with the nurses about if you should pre-medicate with anything. If he does not tolerate the rate, ask them to slow it down - they will likely do this on their own, IF he has trouble. They increase gradually and watch them. Bring snacks so he has food during infusions as well, since they take several hours to complete.

 

Don't expect miracles the first day or for them to be steady. Healing is still going to be episodic. He will have good and bad days. Overall, it takes time to see improvement. I have generally read for those who only need the one infusion (no immune deficiency, like my daughter has), it takes about one year to return to baseline.

 

You're in my prayers; hope all goes well.

 

Best,

Denise

[sebrown1126]

My son had IVIG at age 8, three years after getting PANDAS. I wish we would have done it sooner.

 

We had an extremely rocky time post IVIG. He threw up every 15 minutes for 24 hours. We gave Benadryl and Motrin around the clock, when he could keep it down. Limited steroids, but we did some. He had a killer headache.

 

The rocky period lasted a few weeks, then tapered a bit so we'd get some peace, and then we'd get another wave of bad behavior. Turns out, it was just the antibodies dying off. Evidently, the body doesn't kill them off all at once, and so, like others, we had a bad period post IVIG, then at about three weeks, then eight, then 12. We just gave Benadryl to get through it.

 

I did question right after the IVIG what we had done, and it was horrible to see my son so sick. I've since read that a big reaction like that is great....beacuse it shows the IVIG is doing it's job and killing off those nasty antibodies.

 

My son has begged to go to the ocean (his obsession) for four years. We could never even take him to a restaurant, much less get on a plane. He is now doing so well that we are taking him to the ocean next month.

 

His anger and rage are gone, the obsessions are gone too. He never had tics. We had worried that he wouldn't live independently, or he'd hurt or maim someone with the rage episodes. We now have hope that he has an independent future.

[JAG10]

My son had IVIG at age 8, three years after getting PANDAS. I wish we would have done it sooner.

 

We had an extremely rocky time post IVIG. He threw up every 15 minutes for 24 hours. We gave Benadryl and Motrin around the clock, when he could keep it down. Limited steroids, but we did some. He had a killer headache.

 

The rocky period lasted a few weeks, then tapered a bit so we'd get some peace, and then we'd get another wave of bad behavior. Turns out, it was just the antibodies dying off. Evidently, the body doesn't kill them off all at once, and so, like others, we had a bad period post IVIG, then at about three weeks, then eight, then 12. We just gave Benadryl to get through it.

 

I did question right after the IVIG what we had done, and it was horrible to see my son so sick. I've since read that a big reaction like that is great....beacuse it shows the IVIG is doing it's job and killing off those nasty antibodies.

 

My son has begged to go to the ocean (his obsession) for four years. We could never even take him to a restaurant, much less get on a plane. He is now doing so well that we are taking him to the ocean next month.

 

His anger and rage are gone, the obsessions are gone too. He never had tics. We had worried that he wouldn't live independently, or he'd hurt or maim someone with the rage episodes. We now have hope that he has an independent future.

 

Full of tears here. I just know your son is going to LOVE playing in the ocean. One of my favorite things to do of all time is to watch my girls play in the surf. The pure joy on their faces is priceless. I hope you thoroughly enjoy the trip as much as he will.