Has anyone only gotten worse with IVIG

[LaurenK]

Today, I took my son to see a PANDAS specialist who did reccomend IVIG every 8 weeks while we go after the other infections. My question is, has anyone else here only gotten worse after IVIG?

[T_Mom]

Hey LaurenK-- I am sorry, I don't remember your story, has your son already had IVIG? From your post I cannot tell--if you are just asking, or saying he did get worse?

 

Our experience was that one IVIG treatment literally "re-set" our d essentially back to herself within 4 weeks post-IVIG.

 

She went from horrible, un-liveable, raging OCD and ODD to herself again thanks to IVIG (and we had been through a TERRIBLE year dealing with a cascading Pandas flair--after exposure to strep.)

 

We have only had good response -- yes, some ups and downs those first weeks but in the end, IVIG made all the difference.

[eljomom]

T.Mom---that is great to hear. Since you have been through it, and if I remember correctly (forgive me if it's a bit blurry), you waited to do it for quite a while.....would you have done it sooner for NON-debilitated symptoms? I still don't get how it is not recommended (not that I am sure I want it.....I have the same concern as LauraK) for kids who clearly are affected by pandas....tics, ocd...but to a milder degree at times...if it's the same process going on. This has been an ongoing question....so is she back to 100%? I have heard it only helps about 50% reduction in symptoms, which for some kids, I know would be beneficial.

[kimballot]

My son was very sick before IVIG and had been harboring a major infection for several years. When we did IVIG he had a major exacerbation - very similar to one he'd had 6 years prior just before we removed his tonsils. The exacerbation was horrible and scary and he is 14 so we had difficulty controlling him. It lasted for several months.

 

We continued IVIG every 8 weeks, consulted with a lyme doctor and with Dr. M in Florida. Each doctor offered something else to help us. Much of the improvement was probably time alone. I don't know if he had gains with each IVIG or if it was just the time away from the first IVIG that helped. Either way - he continued to improve VERY slowly. Problems were both physical (fatigue, joint pain, etc) and mental (OCD rituals, anger, rages, depression).

 

If I had to do it all over again the only thing I would do different is start IVIG sooner. This is the first year in his entire life that he has not had any sinus infections (his usual trigger). He is now a very calm, fun, and generally likable kid. It has been 11 months since his first IVIG (and he has had a total of 6 IVIGs so far). Last week he went to school for 5 days in a row for the first time in over a year. We celebrated. His grades are pretty poor - but he did a ton of work last week to catch up and I am hopeful he will start to keep up with the next marking period.

 

I think our experience is more severe and took much longer to resolve than most that I have read about on the forum... so please recognize that this is an extreme case. Also, please recognize that my son had the SAME type of exacerbation 6 years ago due to a chronic tonsil infection - and that was well before IVIG.

 

You can PM me if you have more questions - good luck with your decision.

Edited January 17, 2012 by kimballot

[T_Mom]

T.Mom---that is great to hear. Since you have been through it, and if I remember correctly (forgive me if it's a bit blurry), you waited to do it for quite a while.....would you have done it sooner for NON-debilitated symptoms? I still don't get how it is not recommended (not that I am sure I want it.....I have the same concern as LauraK) for kids who clearly are affected by pandas....tics, ocd...but to a milder degree at times...if it's the same process going on. This has been an ongoing question....so is she back to 100%? I have heard it only helps about 50% reduction in symptoms, which for some kids, I know would be beneficial.

 

 

I think that we waited much, much too long to try the IVIG--by the time we finally did it we had no choice. Our d was having to stay with friends due to her severe reactions to us at home. She had been exposed to strep and then her OCD came on with a rage--and morphed into severe ODD, (breaking items and attacking) she was most obviously not herself. We did try behavioral counseling, contracts, etc...prednisone burst and 3 different abx, it was beyond her control to control.

 

IVIG was the LAST thing I wanted to "try" but I am very thankful we did -- as it made all the difference. Regretfully--we 'lost' the year. Academically, the school knew by Oct.(2010) that something was very wrong w/ her (they contacted us.) They designed and started using an OCD checklist of behaviors daily across ALL of her teachers to chart behaviors. She was "un-gradeable" every single quarter of last year--due to failing grades which we all knew were because of PANDAS (written language, ability to write, focus, attention, OCD issues.) She refused to go to school, had to be carried at times to the car. Finally did IVIG in May of 2010.

 

She started school this year and the teachers emailed to say she was an entirely different child. She has gotten A's and B's on everything this year, honor roll. She is able to concentrate and no sign of OCD at school nor at home.

 

You asked if she was "100%" -- I am not sure how to answer that. We can see that she is herself again, that we can sit with her, hug her, talk to her again--that she laughs, looks at me, has friends, she does not hit us, nor is she destroying items.

 

Most importantly she is able to be happy again (she reported that "Mama, I feel happy again" within the first 48 hours after IVIG. (I almost fell off the stairs we were sitting on.)

 

...is she 100%?

 

I would say yes, though I suspect she would not be wanting to "forget" last year--like she says she does, if she had not gotten sick.

 

I also suspect that some of her lingering obstinate reactions at times are related to those horrible times of last year. (Aren't we all affected by the crises we encounter...sadly, I don't think any of us have not been deeply touched and affected.) As w/ any major illness--a child may be treated and 'recover', for example from cancer, but the memories are still there.

 

We ARE thrilled with where she is -- I would say she is 100% herself again, at the same time we have all been profoundly affected.

Edited January 17, 2012 by T.Mom

[Kiera]

A quick question - for those who do ivig every 8weeks, is that high dose or low dose for immune deficiency? Thanks.

[peglem]

A quick question - for those who do ivig every 8weeks, is that high dose or low dose for immune deficiency? Thanks.

We do 1.5g/kg every 3-4 weeks for immune deficiency.

[LNN]

IVIG (we did only one) was a very negative experience for my son (7 at the time). He regressed horribly in many ways. After 10 weeks, he did pull out of the nose dive and stabilized. But I would not say we saw any gains at all. The one positive that came out of it was that both Pandas doctors we were seeing agreed that there had to be a reason - an ongoing infection - behind his response. They both agreed we should look into lyme and eventually we found other things (methylation, pyroluria) that, now treated, have made my son healthier than I think he's ever been in his life. It wasn't just Pandas, just lyme, but a perfect storm of several factors. IVIG wasn't going to fix these factors for him. So it wasn't part of our answer.

 

That said, I don't think IVIG did any lasting harm (except maybe for the lasting PTSD in mom). And we seem to be in a very small minority. So I don't speak up to dissuade you. As others have said, it can be a very positive experience.

[Concetta]

My son was very sick before IVIG and had been harboring a major infection for several years. When we did IVIG he had a major exacerbation - very similar to one he'd had 6 years prior just before we removed his tonsils. The exacerbation was horrible and scary and he is 14 so we had difficulty controlling him. It lasted for several months.

 

We continued IVIG every 8 weeks, consulted with a lyme doctor and with Dr. M in Florida. Each doctor offered something else to help us. Much of the improvement was probably time alone. I don't know if he had gains with each IVIG or if it was just the time away from the first IVIG that helped. Either way - he continued to improve VERY slowly. Problems were both physical (fatigue, joint pain, etc) and mental (OCD rituals, anger, rages, depression).

 

If I had to do it all over again the only thing I would do different is start IVIG sooner. This is the first year in his entire life that he has not had any sinus infections (his usual trigger). He is now a very calm, fun, and generally likable kid. It has been 11 months since his first IVIG (and he has had a total of 6 IVIGs so far). Last week he went to school for 5 days in a row for the first time in over a year. We celebrated. His grades are pretty poor - but he did a ton of work last week to catch up and I am hopeful he will start to keep up with the next marking period.

 

I think our experience is more severe and took much longer to resolve than most that I have read about on the forum... so please recognize that this is an extreme case. Also, please recognize that my son had the SAME type of exacerbation 6 years ago due to a chronic tonsil infection - and that was well before IVIG.

 

You can PM me if you have more questions - good luck with your decision.

[LaurenK]

Today, I took my son to see a PANDAS specialist who did reccomend IVIG every 8 weeks while we go after the other infections. My question is, has anyone else here only gotten worse after IVIG?

 

My son did great after the first but became worse after the second. Dr. T said that when you harvest antibodies from many people, you can get PANDAS antibodies. Just the luck of the draw. We are aggressively going after yeast now to repair leaky gut, in hopes that his immune system can recover as it is all effected in the gut. No yeast diet, nystatin 2 x a day, mega probiotics, capric acid...plus b12 injections, b6, calcium and magnesium. I'm so sick of this disease and being let down over and over again in our attempts.

 

Nancy

 

We have seen Dr. Bouboulis and he said that there are so so many antibodies that it is unlikely that my son would just get a "PANDAS" batch of auto-antibodies. We are concerned because my son does have Lyme and Mycoplasma. We are worried about a big herx reaction.

[LaurenK]

Kimballot, how exactly are you dealing with the Lyme and how long were you told that Lyme treatment would take??

Edited January 17, 2012 by LaurenK

[kimballot]

Kimballot, how exactly are you dealing with the Lyme and how long were you told that Lyme treatment would take??

 

First off - my son has never had a strong positive test for lyme - despite lots of looking. However, when we put him on a "lyme challenge" protocol prior to a round of testing (flagyl & Doxicycline), we saw an improvement in his OCD symptoms and more energy, and his CD57 was low, which can be indicative of lyme (CD 57 is not reliable in kids, but he is 14 and adult sized- so we took this into consideration). The lyme doctor believes he has an underlying lyme or coinfection as does the immunologist. I believe he has some sort of underlying infection, and I can't say exactly what it is. All docs we have seen have recommended he remain on antibiotics for several years, so I decided to do the antibiotics that also work on lyme.

 

He is currently on doxycyline and azithromycin. He has also been on tindamax in the past, but had much fatigue with tindamax. I would like him to go on tindamax again as it is a cyst buster, but we had to suspend it for a while so he could get up and get to school everyday.

 

He is also on several supplements to help his immune system, decrease OCD and increase energy including inositol (recently added and saw HUGE improvement in OCD symptoms), CoQ10 (given at night - time released - really seems to help him get out of bed in the morning), fish oil, calcium-magnesium, vitamin B, vitamin C, multi vitamin, D3 (these levels were low in his blood), acidophilus and saccharomyces boulardii. He also takes a small dose of ritalin on school days.

 

We were told it would take 9-12 months on average to see improvements with the lyme treatments. I believe the doctor said she looks for a 2 month window of good functioning before she starts to taper down the antibiotics...(which could take more than 12 months to accomplish) but I could be mistaken on that. At the time we had the conversation my only thought was "please let me see some improvement"... so I don't recall exactly what the criteria was for ending treatment. We started the doxy / azith combination in September and I would say that we've seen slow improvement each week since.

 

I also need to add that he gets IVIG every 8 weeks and has not had any infections in the past 11 months - as opposed to chronic severe sinusitis prior to that.. so I am sure that the IVIG coupled with the antibiotics warding off new infections is also a very huge part of his recovery.

Edited January 17, 2012 by kimballot

[LaurenK]

The antibodies in IVIG are all different types from hundreds of donors. It's not unrealistic to think some could be the antibodies causing the PANDAS reaction. Obviously the dose of IVIG wouldn't be all PANDAS antibodies, but since PANDAS is grossly under diagnosed, it is possible to get some in the mix. Dr. B does a great deal of IVIG per patient in his IVIG suite in his office. Dr. Swedo believes two should do it. Our first was great, our second made things worse. I wish with all my heart that we stopped at one. Just my humble opinion.

 

Nancy

 

 

Did you do a follow up IVIG in case it was just a bad batch of autoantibodies?

[EAMom]

Kimballot, how exactly are you dealing with the Lyme and how long were you told that Lyme treatment would take??

 

However, when we put him on a "lyme challenge" protocol prior to a round of testing (flagyl & Doxicycline), we saw an improvement in his OCD symptoms and more energy, and his CD57 was low, which can be indicative of lyme (CD 57 is not reliable in kids, but he is 14 and adult sized- so we took this into consideration).

 

Yes, it is so hard to say, esp. since flagyl and doxycycline are both anti-inflammatory so in theory, would have helped PANDAS.

[EAMom]

Today, I took my son to see a PANDAS specialist who did reccomend IVIG every 8 weeks while we go after the other infections. My question is, has anyone else here only gotten worse after IVIG?

 

My dd has not gotten worse with IVIG (had 3x , 6mo to 1+ year apart) aside from the first 1-2 weeks post (turning back the pages). She is pretty good now (probably not 100%) and her last HD IVIG was this summer.

 

I also wish we had pursued IVIG sooner (didn't do until 1.5 years after PANDAS was diagnosed). But I also think it was important that we had time to "discover" Azith (several months after diagnosis). I don't know if IVIG would have been as helpful if we were just on Amoxicillin.

Edited January 20, 2012 by EAMom