Update on the IVIG experience

[Dedee]

Some of you may have read that the first day was really tough. Well, the second day was a repeat of the first. Not really sure why but she got really agitated and compative during the infusion and her Blood Pressure went up. Ended up sedating her both days. I am glad we did it in the office. I am afraid if it was in the infusion center they may have stopped it and sent her home (since they don't know her history of rages). In the office they stopped the infusion for a bit till the rage subsided and the pressure came down. Once she was calm we finished with no problem. Happened about the same time both days. She gave some IV benadryl and some more versed and she slept for the next couple hours. She has done fairly well since infusion. She has ran a low grade temp, had couple days of nausea, and yesterday she had a horrible headache. The only thing that really concerned me was the headache. It got pretty intense for a while and she couldn't stand any noise or light. Finally with some motrin and phenergan she slept for a few hours and it was gone when she woke up. She had a mild headache last night but cleared with motrin. She hasn't had any complaints yet today.

 

As far as behavior, I don't know that I could say that the changes would be due to IVIG or the steriods she got prior to treatment. There is definately a difference in behavior, but she always had improvement before when she got steriods, so I'm not sure if it would be the IVIG or the steriods they gave her prior to the infusion. I am really worried about the regression that some see initially with IVIG. For those who have experienced that, when did you first notice it? We leave next week to go to Florida for the three week intensive CBT program. I am praying we don't start seeing it then. So now we just wait I guess......

 

Dedee

Edited July 1, 2011 by Dedee

[butterflymom]

=

Edited October 8, 2015 by tampicc

[JAG10]

I agree with pandas16. Actually, there seems to be two categories post ivig. Some like pandas16 and my dd have some regression with the infusion and the improvement surfaces weeks later. Others have initial improvement that "lasts" X number of weeks, then fades to regression until the next infusion.

 

If you choose the multiple ivig route like we have, the regression at time of infusion is diminishing each time, I suppose as there are fewer and fewer bad antibodies to mop up. We are at a point where the regression is very mild ADHD type behavior. My dd11 had her 5th successive infusion yesterday and the day before. She keeps improving. She used to be out of sync and unaware of much of what was going on around her. Now she is snappy and I need to be very careful speaking near her bcs she picks up on everything. When we got home yesterday, she went swimming. She dove in the water like a typical girl her age rather than awkwardly falling in head first. She swam across the pool with these beautiful, effortless strokes rather than slapping the water and kicking like wild woman. She is becoming more and more neuro-typical....which when we talk about that last 10-15% for kids who have been sick for so long can be so hard to articulate, but we all know it when we see it.

[PowPow]

Regression is a sign that it is working and getting rid of the bad autoantibodies. You should want to see that. I had a HUGE regression with each autoimmune treatment I had. High dose steroids & IVIG It lasted for about 6 weeks each time then slowly got better- up to remission. The regression started almost immediately. Also to add from experience... headaches for me usually was usually the precursor to something awful.

 

pandas16: BOY AM I GLAD TO READ THIS!!! my 13 yo had IVIG 7 weeks ago and it has been TERRIBLE! We restarted prednisone (high dose) 3weeks ago and risperdal one week ago and we are finally seeing some improvement from the regression-- but still not really improvement from before IVIG. Whether it is from hitting week 2 of prednisone- always a magic number for us in the past-- or risperdal-- or all 3 things working together, we will never know--

 

Our doctor wants us to repeat mulitple IVIGs for a few months, but it has been so horrible with no relief I cannot imagine doing it ever again. thanks for giving me hope. Is this written somewhere scientifically or does some doctor go on record as believing this (regression means the IVIG is doing something?) my doc never really said that-- just that we need more.

thanks!

[SSS]

Actually, there seems to be two categories post ivig. Some like pandas16 and my dd have some regression with the infusion and the improvement surfaces weeks later. Others have initial improvement that "lasts" X number of weeks, then fades to regression until the next infusion.

 

 

*Funny, we have had 2 HD-IVIG, and we had EACH of these recoveries. The first one was the extreme difficult afterwards, and the 2nd one right after was the most beautiful 2 weeks I've ever seen.

I believe we have some lasting positives from the IVIG's that are here to stick:

No more exorsist rages, where my dd lost complete control of her body, just 'left' and was scarier than I've ever seen- that has not happened, nor close to it again, since IVIG's, and

OCD is not ruling her life.

I'm glad you got through the 2nd day, was wondering how it went--hang in there, you'll get through post IVIG, too- sending good thoughts---

[lmkmip67]

We are about 2 days out from our second IVIG with Dr. B. My son also gets very agitated during the treatment. But it could be due to roid rage, or the Benadryl (feeling tired also gets him going), or the treatment. I really have no clue. He doesn't need to be sedated. But he did get pretty grumpy this past time to where I was wondering if we should turn it down a bit. he came out of it though and now we are 2 days out. He had a headache that started last night and still has one today, but not as bad. It isn't slowing him down. I gave motrin and that seems to help. No nausea for him. he just keeps on keeping on. He skated in 3 hours of hockey camp yesterday and did great. I think it is different with everyone, but the nurses did tell us that a child will usually react about the same each time as far as how they feel. Dr. B also told us that we will see some turning back of the symptoms again but we should see less of it and it shouldn't last as long. We did see improvement starting right around week 6 after the first. he got a cold about 5 days before IVIG but did not develop vocal tics from the cold like he has in the past. Right now he is hyper, happy and hungry, because of the steroids. lol We are on a scheduled plan of ever 2 months right now. We wait and see how he does after each treatment. We were also told that if they react to illness they should react less and less as time goes on, and success is when he is 100% all time, even when he gets sick he should not react with PANDAS symptoms. I would expect to see some improvement again at about 4 to 6 weeks here with Ian. I am learning it is a wait and see kind of deal. You do have to be patient. IT does seem like most struggle with some worsening of symptoms at first, so prepare yourself and just accept that it may be a bit rough. It helps. But it does get better.

[mkur]

My son reacts at approx 8pm the day after IGIV. This makes the plane ride home difficult. Each time he has IGIV the reaction intensity and duration is less. Some of this reaction could be due to the steroid. He refused to take the steroid one time and got a major headache so removing the steroid is not an option. He is getting better so there is hope.

Edited July 2, 2011 by mkur

[tpotter]

*Funny, we have had 2 HD-IVIG, and we had EACH of these recoveries. The first one was the extreme difficult afterwards, and the 2nd one right after was the most beautiful 2 weeks I've ever seen.

I believe we have some lasting positives from the IVIG's that are here to stick:

No more exorsist rages, where my dd lost complete control of her body, just 'left' and was scarier than I've ever seen- that has not happened, nor close to it again, since IVIG's, and

OCD is not ruling her life.

I'm glad you got through the 2nd day, was wondering how it went--hang in there, you'll get through post IVIG, too- sending good thoughts---

 

 

My DS is from the category that got better immediately, then regressed up to the next infusion. This happened several times, and that, in part, is what led us to realize he still had infections that had not been gotten rid of. We did further testing, both laboratory and clinical, and found multiple other infections that we are now treating (ASO elevated, several co-infections, as well.) I do think the IVIG has helped him, overall, fight those infections, but IVIG will not get rid of infections if they are there...it just helps the body fight against them.

[SSS]

*Funny, we have had 2 HD-IVIG, and we had EACH of these recoveries. The first one was the extreme difficult afterwards, and the 2nd one right after was the most beautiful 2 weeks I've ever seen.

I believe we have some lasting positives from the IVIG's that are here to stick:

No more exorsist rages, where my dd lost complete control of her body, just 'left' and was scarier than I've ever seen- that has not happened, nor close to it again, since IVIG's, and

OCD is not ruling her life.

I'm glad you got through the 2nd day, was wondering how it went--hang in there, you'll get through post IVIG, too- sending good thoughts---

 

 

My DS is from the category that got better immediately, then regressed up to the next infusion. This happened several times, and that, in part, is what led us to realize he still had infections that had not been gotten rid of. We did further testing, both laboratory and clinical, and found multiple other infections that we are now treating (ASO elevated, several co-infections, as well.) I do think the IVIG has helped him, overall, fight those infections, but IVIG will not get rid of infections if they are there...it just helps the body fight against them.

 

 

 

Are you referring to Lyme disease?

Last year, and again last month, I did extensive testing on my dd for heavy metals- all the tests indicate she has a burden of mercury in her body (which makes sense, given her exposure the mercury, starting with the Hep B vaccine they gave her the day she was born, which in 2005 contained mercury, then fully vaccinated thereafter.)

My current line of thinking is I will never get her immune system back on track with mercury embedded in there---

by the way, my dd6 does not test on the autism spectrum.

[Dedee]

My daughter is mostly PITAND. She was positive for Myco P. Although her strep titers were slightly elevated in the beginning also. We re-tested her strep titers the day we started IVIG and found out on Friday they had returned to normal but still treating the Myco P. I am assuming there is still underlying infection since she was so high on her Myco P titers. She has been on antibiotics for two months, but my understanding is it can take up to 9months or more to clear systemic myco p. When I spoke to a lyme doctor about testing for lyme he said she was already on what he would treat her with anyway so to proceed with the IVIG. She seems to be recovering well. No more headaches. Behavior seems to be about the same as pre-IVIG. Had a couple of good days and now seems pretty much status quo. So we wait....

[Minnesota Mom]

I am so happy to hear that regression is common after IVIG. My son just had IVIG 1-1/2 weeks ago and his symptoms have increased.

 

 

Some of you may have read that the first day was really tough. Well, the second day was a repeat of the first. Not really sure why but she got really agitated and compative during the infusion and her Blood Pressure went up. Ended up sedating her both days. I am glad we did it in the office. I am afraid if it was in the infusion center they may have stopped it and sent her home (since they don't know her history of rages). In the office they stopped the infusion for a bit till the rage subsided and the pressure came down. Once she was calm we finished with no problem. Happened about the same time both days. She gave some IV benadryl and some more versed and she slept for the next couple hours. She has done fairly well since infusion. She has ran a low grade temp, had couple days of nausea, and yesterday she had a horrible headache. The only thing that really concerned me was the headache. It got pretty intense for a while and she couldn't stand any noise or light. Finally with some motrin and phenergan she slept for a few hours and it was gone when she woke up. She had a mild headache last night but cleared with motrin. She hasn't had any complaints yet today.

 

As far as behavior, I don't know that I could say that the changes would be due to IVIG or the steriods she got prior to treatment. There is definately a difference in behavior, but she always had improvement before when she got steriods, so I'm not sure if it would be the IVIG or the steriods they gave her prior to the infusion. I am really worried about the regression that some see initially with IVIG. For those who have experienced that, when did you first notice it? We leave next week to go to Florida for the three week intensive CBT program. I am praying we don't start seeing it then. So now we just wait I guess......

 

Dedee

 

 

 

Regression is a sign that it is working and getting rid of the bad autoantibodies. You should want to see that. I had a HUGE regression with each autoimmune treatment I had. High dose steroids & IVIG It lasted for about 6 weeks each time then slowly got better- up to remission. The regression started almost immediately. Also to add from experience... headaches for me usually was usually the precursor to something awful.

[Minnesota Mom]

My son had a similar response from IVIG. I'm wondering how your son is doing now? How long did it take for the symptoms to fade out after IVIG?

 

 

 

 

 

 

My son was 5 at the time of IVIG, and had the migraine-like headache with vomiting for one night. We saw an immediate worsening or "flipping back the pages" starting the day after the infusion was over. WE had daily and hourly increases and rapid changes in tics and ocd behaviors. It was extremely difficult for two weeks and then slowly got better.

 

many children are much better by about 2 to 3 months out. .. .can you delay the CBT program until the time your child will likely be better?