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IVIG - did it help your child?


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I'm having some serious internal struggle right now. I will summarize my thoughts.

 

I strongly suspect lyme in my son, and we are doing Igenex testing on Monday -- if that's positive -- well I have more pondering to do. I have Lyme -- my Igenex came back very positive and I have been sick longer than my son has been alive. Thus, the reason for it being on my mind and also because of symptoms. However, symptoms can be similar to PANDAS. My reason for bringing this up is because IVIG already seems like a mixed bag from what I can see, but tossing lyme into the realm of possibilities makes it even more so.

 

My son responded AMAZING to steroids (actually he was a basketcase for 5 days during -- but amazing for 10 days afterwards). Then we came crashing with a big boom after they wore off.

 

Antibiotics seem helpful at first and then we plateau somewhere around 2 weeks and then hit a rough patch by week 3-4. I was trying to find a lyme cycle in this, which there may also be. However, I'm piecing together labs since December and then starting to get old labs/reports/charts from old docs and hospitals and I'm noticing that with absolute certainty strep has been an ongoing issue.

 

My son has low IgG (below range) and borderline low on a few subclasses. He failed strep. pn titers, but I'm not sure how much weight I give those as far as diagnsosis - though I understand it's a good ball to have in my court for IVIG.

 

We went down the psych road for nearly 2 years. Therapist, psychologist, psychiatrist, meds, even brief hospitalization and outpatient program thereafter. Nothing worked, meds made him WAY worse, except abilify at a very, very low dose that I was told I was seeing a "placebo" effect.

 

He has non-classic OCD symptoms, with things like food, his room, nobody can touch his things, if i pick something up off his floor it sets him off, only certain foods for breakfast, certain things for lunch, hoarding of food, etc. -- this all resolved for nearly a month when starting zithromax. Food issues are still holding much better -- son even said he doesn't have the urge to binge or sneak food anymore which was a big issue.

 

School work deteriorated to the point of honors class to d/f over period of weeks. After steroids and at beginning of zith treatment he caught up on missed assignements and handwriting greatly improved. This is waxing and waning now. One minute he is gung-ho about getting work done the next it's a war to get him to open his backpack and even attempt to do any homework.

 

He is also rage-y at times and beligerent -- which makes me lean more toward lyme/bartonella stuff. Would love feedback from PANDAS/PANS not related to lyme if you have experience on that.

 

bottom line is...steroids/decrease in inflammation and ibuprofen have been hugely successful. Zithromax which is also anti-inflammatory has been very, very helpful (discontinued all ibuprofen while on it) but the strep keeps coming back (on augmentin and zith now), even the damn dog has strep now and he clearly has immune issues along with it.

 

I hadn't really wanted to jump into IVIG - despite the fact he has two PANDAS cousins that responded well. I'm particularly worried that is Lyme is a factor it may send him overboard.

 

Though, I'm having a major internal struggle with the fact that he's 14 and I don't want to miss the boat on this if it could possibly help. The thing is, I see so many families have tried it and they are still here, still posting and not better. So, is it actually helping?

 

I know this topic can be heated, please - I am not looking for a fight, I'm genuinely on the fence with what to do and trying to weigh all possibilities and thoughts with how to help my son? Can we talk truthfully about if this is helping, and what your experiences have been and your thoughts on what you would do in my situation?

Edited by fightingmom
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DS actually recovered, seemingly fully, after his 2nd IVIG with NIH. Sadly, he got strep three weeks later while on prophylactic antibiotics and it all came undone. Nine months later, DS finally seems to be in a remission (four weeks, exactly, and no pandas symptoms whatsoever). No additional IVIG. Augmentin 875 twice daily for about the past five months, with a three week steroid taper thrown in a couple of months ago. DS does not have any co-infections.

 

We have heard from others that there is no sense pursuing IVIG if there are co-infections, until those have been successfully treated. Hoping people who have experience will chime in on that.

 

I think you need to trust your gut. You seem hesitant to pursue IVIG at this time. I wouldn't try to talk yourself into it. While DS did technically get better after two rounds of IVIG, we have no way of knowing if those results would have been lasting, had he not gotten strep. Some kids do great for a few months after IVIG, then the symptoms return.

 

We experimented with NAC and Omega 3 when DS was symptomatic, and did not have good results. But we have talked to others who said that, for their kids, those supplements made a huge positive difference. There may be other things you can try before heading down the possible IVIG path. Sending virtual hugs your way. I am keenly aware of how difficult it is to know if you are doing the right thing and how easy to second-guess yourself. It seems like you are very thoughtful and considering everything thoroughly. Wishing you a positive resolution sooner, rather than later. Best, Suzanne

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Thanks, I have experimented with NAC and Omega and other supplements over the past 2 years -- have seen improvement with zinc. I have been researching methylation and we are testing on Monday for MTHFR along with the Igenex, CD57 and some others that will hopefully give us more clues as to other issues.

 

I'm hesitant to pursue IVIG in general -- only because if it makes him worse he will for sure wind up in a psych hospital. He's 14 - he's growing - in flares he can get violent and it would be detrimental to our family if we wind up there again. Though....I can feel the explosion coming away again...so...I'm stuck...do nothing and watch it come anyway, or take a chance and see?

 

I feel that IF we are going to do it, rather sooner than later. And, what we are doing isn't working -- for a few weeks it does, but then we fall again. And, I also am realizing how significant strep has been in the process all along. I knew it was an issue, but didn't realize until compiling more previous history and seeing yet more lab results with positive ASO (and that correlate with symptoms) how much of an issue it is. He is currently on 500 mg of Zith daily AND 875 mg 2x a day of Augmentin...still strep is an issue.

 

I'm most concerned with the possibility of Lyme complicating things when it comes to IVIG. I think if his Igenex comes back negative, I'll feel stronger one way or the other. I feel a sense of urgency trying to make some headway before he heads into high school at beginning of September. We barely skimmed through this last year of middle school -- coming from a honors classes and straight A's. And, He WANTS to be there again.

 

So, I feel as if this summer we need to make some major headway and have the opportunity to before going back to school, so I'm a little hot on the trail...which trail that is...is the bigger question.

 

As you stated, some kids do great for even several months and then symptoms return. I guess I'm trying to gauge if that's the status quo. It seems to be from what I can gather -- and if that's all it's giving us, is a few weeks to months, is there another benefit I am missing as to why we still do it? Is there a long term gain from it? That's what I am trying to figure out.

Edited by fightingmom
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IVIG definitely helped both my children...dramatically. And, we are dealing with Lyme in both. I believe it helped their immune systems to fight. We are still fighting infections, but neither of my children are anywhere near as bad as they were.

 

If your son is dealing with rages, I would really suggest that you check also to see if there is mycoplasma pneumonia, if you haven't already. It can cause rages. Also, EBV. Turns out, we are dealing with fluctuating mycoP IgG titers, and here is an article that was put (I think) on the lyme forum (or it could have been this one) that explains that fluctuating high IgG just indicates that the person is getting a relapse of a chronic infection. This makes complete sense, because I am the one with the fluctuating high IgM (and IgG), and when I get either a relapse or a new infection (which has happened several times), both my DS's rages come back. I pulled all his old lab work (4 years worth), and sure enough, the IgG's were fluctuating dramatically. Same was with his EBV titers.

 

But, back to your original question. Yes, IVIG helped my boys dramatically. I know of others, though, who didn't get help.

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my sonwent from 10% if that to 99% after 2 ivig with NIH.Nothing short of miraculous. Yourkiddo may qualify for the study.

 

He's too old. :(

 

See...now the miraculous change -- that's what I want to hear more of!

 

Remind me, how long has it been? Do you also know what the dosage was?

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IVIG definitely helped both my children...dramatically. And, we are dealing with Lyme in both. I believe it helped their immune systems to fight. We are still fighting infections, but neither of my children are anywhere near as bad as they were.

 

If your son is dealing with rages, I would really suggest that you check also to see if there is mycoplasma pneumonia, if you haven't already. It can cause rages. Also, EBV. Turns out, we are dealing with fluctuating mycoP IgG titers, and here is an article that was put (I think) on the lyme forum (or it could have been this one) that explains that fluctuating high IgG just indicates that the person is getting a relapse of a chronic infection. This makes complete sense, because I am the one with the fluctuating high IgM (and IgG), and when I get either a relapse or a new infection (which has happened several times), both my DS's rages come back. I pulled all his old lab work (4 years worth), and sure enough, the IgG's were fluctuating dramatically. Same was with his EBV titers.

 

But, back to your original question. Yes, IVIG helped my boys dramatically. I know of others, though, who didn't get help.

 

Here's the weirdest thing. My husband and I have extremely high mycoP titers --- Dr. B. told me yesterday that my husband's were the 2nd highest he ever remembers seeing! We were convinced it had to be triggering my son. Last weeks labs - which we got back yesterday reveal no antibodies to mycoP. Or atleast at levels considered negative. What the? Really? He's seriously not affected, or is his immune system so wonky, he's not making the antibody?

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Ds 13 responded to first IVIG with decrease in tics, rages, OCD and improved mood. Slowly all symptoms came back. Repeated IVIG and 2nd treatment did nothing. He had plasmapharesis 2 months later with amazing and much longer lasting results.

 

Dd10 had no improvement after IVIG but amazing results from plasmapharesis.

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Our Insurance covered the plasmapharesis with exceptiom of about $1000 copay per child. I think insurance ended up paying less than$10,000 with the negotiated rate. (have to look up,what they paid). Both had positive results / gains until dd returned to school and lost ground. We pulled her from school and she had with a steroid taper to help her return to where she was before. I think the plasmapharesis allowed the healing but being out of school helped her maintain the progress. Hope that helps.

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My dd17 is now 8 weeks post iVlG and is 70% better. lyme testing-quest western blot was neg. Was not able to do Igenex before iVlG and now I have to wait a few weeks more to test. I crashed the PAS conference 2 weeks ago in Boston. dr. swedo said her first choice is PEX,I was floored. I spoke with her at length afterward. I asked her if my DD got sick again is she saying I should be doing PEX? She replied "yes, but she will get better with lVlG too.'

 

We wasted so many years..did a few weeks of abx -no change. No cahange w/steroids or Motrin either. The ONLY thing that helped was iVlG. (btw, she never had tics--plenty of Anxiety/Panic/OCD.

 

She has gone to Prom (and going to another this weekend), rode on a school bus(short ride assisted with klonopin), driven with friends over an hour to the beach,got a job being a gymnastics coach(she is so happy about this). Stopped asking me over and over if she is going to vomit. Panic attacks way,way down. Going to school more often. No rages. Not sleeping in my room most nights. She looks healthier and happier. Depression totally lifted.

Still a work in progress...

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Our Insurance covered the plasmapharesis with exceptiom of about $1000 copay per child. I think insurance ended up paying less than$10,000 with the negotiated rate. (have to look up,what they paid). Both had positive results / gains until dd returned to school and lost ground. We pulled her from school and she had with a steroid taper to help her return to where she was before. I think the plasmapharesis allowed the healing but being out of school helped her maintain the progress. Hope that helps.

 

Very helpful, yes. Thank you!

 

My dd17 is now 8 weeks post iVlG and is 70% better. lyme testing-quest western blot was neg. Was not able to do Igenex before iVlG and now I have to wait a few weeks more to test. I crashed the PAS conference 2 weeks ago in Boston. dr. swedo said her first choice is PEX,I was floored. I spoke with her at length afterward. I asked her if my DD got sick again is she saying I should be doing PEX? She replied "yes, but she will get better with lVlG too.'

 

We wasted so many years..did a few weeks of abx -no change. No cahange w/steroids or Motrin either. The ONLY thing that helped was iVlG. (btw, she never had tics--plenty of Anxiety/Panic/OCD.

 

She has gone to Prom (and going to another this weekend), rode on a school bus(short ride assisted with klonopin), driven with friends over an hour to the beach,got a job being a gymnastics coach(she is so happy about this). Stopped asking me over and over if she is going to vomit. Panic attacks way,way down. Going to school more often. No rages. Not sleeping in my room most nights. She looks healthier and happier. Depression totally lifted.

Still a work in progress...

 

70% is a big gain for a 17 year old 8 weeks post IVIG. I'm surprised by Swedo's response, too. Glad you crashed the conference. Anything else you learned there that would be worth sharing?

 

We don't have tics either.

 

I really hope the relief lasts. If anything, at least you have confirmation now! Good for you for persisting on! I too feel like we wasted so many years.

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Well I will share this even though it may upset some. I recognize there are very differing opinions on abx and lVlG. How are we parents expected to figure this all out when the experts cannot even agree?

 

Dr. t has told me he feels that for some kids abx can do the trick. I also had dinner last night with a Board member of the IOCDF who agrees with this.

 

dr. K has told us that abx is only a band aid and lvlG is the cure. I asked swedo if she agreed with that and she said YES. I also told her that dr. k believes 90 something % of OCD is PANDAS- do you agree? She smiled and shook her head yes. She also mentioned that the autistic community is seeing great success with TSO therapy and one day might be helpful for PANDAS kids.

 

I also told Dr. Leckman that with his criteria my daughter would still not have a PANDAS dx. (sudden onset) He basically told me he understood and that they had to compromise.

 

BTW,last night I learned that Dr. Murphy NEEDS kids in her abx trial. There is a small stipend for travel and all fees once there are covered. This is good news for those families that cannot get abx from their local idiot peds. (rant over)

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