Jump to content
ACN Latitudes Forums

IV poll


IVIG dosage  

45 members have voted

  1. 1. Dosage

    • 1g
      4
    • 1.5g
      12
    • 2g
      2
  2. 2. How many IVIGs

    • 1
      8
    • 2
      4
    • 3 or more
      6
  3. 3. Cured?

    • yes
      2
    • no
      6
    • more than 50%
      5
    • more than 80%
      5


Recommended Posts

kelly,

I won't give a long response, but I just want to give one thought that I have....if you're boys are mild enough, it is my feeling (and only my feeling) that in a few short years, things will probably naturally settle down for them anyway. if they are not getting any kind of severe or even moderate exacerbations from strep right now, or even may not be getting strep as much, something tells me it probably will not likely happen in the future. this is not a blanket, true definite statemtent, its just my common sense talking. we know that many kids with tics (and I think that is what you and I mostly deal with, along with some other secondary issues) that seem to remit around the teen years. unless something really goes awry in their system (which would be not likely at this point, altho of course possible, but you know wht I mean)....than I would think (and hope, that's what I'm shooting for) that they will be pretty much okay in the long run. Even the kids who are getting these treatments are still not out of the woods, so really who knows. You'll have to make a decision and stick to it for the reasons that make sense to you. We still have problems here, but I, personally feel I don't want to tip the scale in the wrong direction, I just can't, its taken me a long time to accept what I have and see that my son is faring well (socially and otherwise) despite the tics and other problems. at some point, we hve to accept or take the gamble., and be realistic that the outcome may not be what you expect or hoped for.......only you can choose..... ....if my son was worse off, I might make a different decision.....

 

sorry, I was trying to go for 3 sentences, but ................ :)

Edited by faith
Link to comment
Share on other sites

  • Replies 42
  • Created
  • Last Reply

Top Posters In This Topic

Top Posters In This Topic

And by the way, I totally disagree that those who are supposedly cured are not on these boards or have moved on. (maybe some, but not all)...If they have moved on, and don't frequent these boards because their kids are well, I'm sorry, I don't buy it, because first of all, if they frequented this board for help and support and got it, I am sure they'd lurk around once in a while to give it back, especially knowing how desperate they were at one point. most of us (and most people these days) have their laptops glued to their knees on some days, so clicking here, there, and everywhere is a pretty simple task I would think.

 

Secondly, I see tht most of the discussion re ivig kind of started here on this board around a year or so ago....it hasn't been that long, so most that hve gone onto that journey by getting info from this forum are pretty much the same ones who've been around all this time still going thru stuff. I'm sure there are some who have gone away, but I don't buy that they left the country and have never looked back......

Edited by faith
Link to comment
Share on other sites

As far as the last statement regarding kids being asymptomatic off antibiotics, getting strep, developing symptoms, getting antibiotics and becoming asymptomatic again....you say that is pretty much close to cured. I say no, not close to cured at all in my opinion....just properly "managed." All I want to hear is Dr. K say that IVIG can "manage" a child....that is all he really has the right to say at this point!

 

I would agree that successful treatment means that even after the IVIG is long gone from the body, the child's immune response has been altered so that it can now manage (rid the body of) strep with the aid of antibiotics just like everybody else, but I don't think it means the first symptoms of that strep infection will only present as typical fever/sore throat and never neuro-psychiatric; and it sounds like that is what you are looking for in the word cure vs. successful. You want no evidence that PANDAS ever existed in that child.

 

It sounds like your risk/benefit analysis would indicate you should not pursue IVIG with such high percentages. When you read others write that all children deserve to be 100%, these are informal judgements and perceptions. My dd has scars all over her arms and legs from picking at her skin, she will never be 100%-it's unobtainable.

 

Advice? I think you pat yourself on the back that you're a proactive mom armed with the knowledge of exactly what to do if your boys start to decline. I think you look yourself in the mirror and say even though I'm blessed to have boys with minor symptoms, I vigorously work for progress to help kids like those who are hospitalized or home-bound from severe symptoms. I think that if you believe dr. K's use of the word cure is genuinely harming this community, you should respectfully share your thoughts with him in writing on how that word could be misinterpreted from his intended meaning.

Link to comment
Share on other sites

Debbie.....what were your kids symptoms, and, how bad, when you got IVIG for them? What does Dr. B say about IVIG? Cure? How did he get insurance to cover it?

 

Thanks!

 

My son's symptoms pre-IVIG were symmetrical touching, constant finger playing and toe wiggling, fears at bedtime, turning full circle in the middle of walking straight, stepping over cracks between rooms, excessive hugging, throwing back kisses, repeating words and phrases, episodes of rapid eye blinking, lifting his shoulders to touch his ears, stomach aches and jaw pain. He was significantly worse before he started antibiotics one and a half years ago (that list of symptoms goes on and on).

 

My daughter's pre-IVIG symptoms were eye blinking and rolling, nose scrunching, mouth opening, torso tics and compulsive hair playing/twirling. Her tics were relatively mild compared to how she was years ago.

 

I have not specifically discussed whether IVIG is a cure with Dr. B. I don't think anyone can give me an accurate answer on that right now...only time will tell. For now, we just needed to work on getting the symptoms to go away.

 

I was fortunate that my insurance covered IVIG for an in-network physician without prior authorization, so no diagnosis code was needed. However, my son would have qualified because he failed the pneumoccocal titers blood test.

Link to comment
Share on other sites

Melanie,

This poll can be confusing. Some have had one time ivig's other one high dose followed with monthly one gram doses. Some have had several high doses with no followup monthly. Some just low monthly doses with no high dose. Some a one time low dose. I can say my dd is more on the protocol of Danny. Seeing improvement. I have talked with three mothers now whom do monthly ivig for immune deficiencies at one gram per month and all have seen improvement.

 

 

 

2 cured and two at 2g.Who are you??
Link to comment
Share on other sites

Faith,

 

You know, Dr. K did tell us not to worry so much about the tics....he didn't seem concerned with them....he said the tics go away. He was more concerned with my boys behavior, how they were doing in that area. If that is the case, then IVIG for my older son wouldn't be necessary, as Dr. K predicted. He only has tics that range from zero to moderate. Moderate episodes only rarely, and very briefly....... he is usually at a 1 or 2 in a scale from 1 to 10, but, right now he is dang close to 0. So, for him, if the tics go away, then, no concerns there. His behavior is good....no anxiety or ocd....just some ADHD type behavior in the initial episode...that is gone now.

 

My younger son is the one I worry more about. Besides tics, he has the behavior stuff.....the ocd, anxiety, etc. He is mild right now, but, some anxiety seems to always be there. Dr. K said for him, he would most likely need IVIG. He also said that the anxiety stays (if you don't get IVIG!) I suffer from anxiety and it STINKS! I don't want my boy to have to deal with it for the rest of his life....that is where I am stuck with him. Would IVIG get rid of the anxiety??? Who knows?? Anyone?

 

Debbie.......PLEASE keep us posted on how your children do with IVIG. Your son sounds alot like my younger son (symptom wise).

 

 

Am I crazy.......? :) Am I the only one on here, that, when initially reading Dr. K's site, was ready to jump all over IVIG because he uses the word "cure" on his site in regards to IVIG? Am I the only one who feels the word "cure" should mean exactly that?

Edited by P.Mom
Link to comment
Share on other sites

Alright, Kelly- now I'm crazy! You've got me looking up the definition of "cure" (i used to like that band)

 

remediation of, alleviation of, successful treatment of (there goes my idea)

 

Anxiety is no little deal, but only you can be the judge of where he stands. Did it go away with a steroid trial? How does he handle school or sports pressure? Any perfectionism? As I mentioned to you, my dd7 has mild symptoms, anxiety being the main one. The difference is I see her against the backdrop of her older sister, the no-brainer for treatment. Maybe as my older one gets less and less symptomatic, I'll become more and more anxious about the younger one's anxiety :)

I don't think the puberty milestone should make you feel rushed. I can see Dr. T's point about monitoring until/unless there is another episode.

Link to comment
Share on other sites

Am I crazy.......? :blink: Am I the only one on here, that, when initially reading Dr. K's site, was ready to jump all over IVIG because he uses the word "cure" on his site in regards to IVIG? Am I the only one who feels the word "cure" should mean exactly that?

 

Kelly --

 

You're nowhere near crazy. You're asking a legitimate question; it's just that nobody here can answer it except possibly Dr. K.

 

From having met with him only once, I do think he truly means "cured" in the pure sense of the word. He told us the IVIG essentially "reboots" the body's immune system, and that only IVIG can do this. He has said that he doesn't consider Sammy Maloney to be "cured" because he still reacts to strep with PANDAS symptoms and must take a course of abx again when exposed; if truly "cured" via IVIG, then the body would respond "appropriately" to an exposure to strep and, with a standard course of abx (10 days), the immune system would behave normally, the strep would be defeated, and there would be no "hyperactivity" of the strep antibodies which leads to the inflammation and PANDAS behaviors.

 

But as JAG has suggested, maybe you should just ask Dr. K. outright. We were very direct (dare I say, "skeptical"?) with him on some issues, and he was patient and straight-forward with us in response. But this was not a question we asked, in so many words.

 

As for the puberty question, I know I've read that Dr. K. feels that IVIG should be conducted prior to, or, at the least, more than one IVIG is likely to be required. That's another question I've not clarified with him at this point, but I certainly will should we find ourselves going down that path more distinctly. Interestingly, for what it's worth, our DS is 13 and was 13 at our appointment with Dr. K., and there was not a single mention of puberty, time constraints, prognosis for effectiveness of a single IVIG, etc. He didn't once even suggest that "timing was of the essence" or anything of that ilk. Not sure if that's because he was reading us, from the questions we were asking, as unlikely to move quickly in this regard, no matter what he might say, or if he was saving that information for if and when we look to move forward.

 

Cured. That's a loaded word, for sure. And is it IVIG that cures? Or is it IVIG and time? Or is it IVIG, time and another 12+ months of abx? Or, is it possible that time and abx alone can achieve the same ends? And chances are, the answer is different depending upon each kid's specific profile. If your child has other immune deficiencies, like Melanie's, then IVIG seems like an inevitable piece of the puzzle, no? But if, like my DS, the immune system appears to be in full swing with the single exception that he appears to have an "allergic reaction" to strep, is IVIG an absolute requirement? Don't know. :unsure:

Link to comment
Share on other sites

So by "appropriately" does that mean they will get a fever and sore throat if they never did before?

 

Otherwise, with no change in behavior, how would you know to give all these asymptomatic of strep kids the 10 day course of abx?

Edited by JAG10
Link to comment
Share on other sites

From having met with him only once, I do think he truly means "cured" in the pure sense of the word. He told us the IVIG essentially "reboots" the body's immune system, and that only IVIG can do this. He has said that he doesn't consider Sammy Maloney to be "cured" because he still reacts to strep with PANDAS symptoms and must take a course of abx again when exposed; if truly "cured" via IVIG, then the body would respond "appropriately" to an exposure to strep and, with a standard course of abx (10 days), the immune system would behave normally, the strep would be defeated, and there would be no "hyperactivity" of the strep antibodies which leads to the inflammation and PANDAS behaviors.

 

That is what i think he means as welll.....

and not in regard to what doc k is suggesting...but on my own...when i posted that mayybe you are cured if you could go 1 year ..

if you could go 2 years w/o a relapse ..i would say you did it!!!! meaning the system is doing its job..partially from doing preventative maintanence and letting the body heal so it can do its own work.......i think we can get these kids bodies to do that!!!

Link to comment
Share on other sites

peglem--your story...there are no words...to have her cuddle and have hope...what more can any of us ask.

 

I didn't do the survey because nothing fit. But my 15 yo daughter who we think has had this since infancy, had 2 very low dose (standard for immune deficiency) <.5mg/kg. One in March and one in April. She was a bit worse after the 1st one, then much, much worse after the second one. We did a 7 day steroid burst shortly after and things improved slightly. In May we had 1.5mg/kg, again with a slight improvement, but I was still kind of freaking out because prior to the 1st IVIG we had 3 months of wonderful (relatively speaking). So, we repeated the abx regimen that brought us our 1st real remission in many years- rifampin/augmentin. This we had used last December, and until we saw the results, we didn't know how good my daughter could be....we saw some early childhood development beginning, that had been disrupted when it should have happened. A few days after finishing that combo, about 3 & 1/2 weeks after the HD IVIG, she suddenly snapped back to terrific- so I don't know if it was the IVIG or the abx that did the trick.

But tomorrow and Friday(okay, really today) we're doing another 1.5mg/kg. I'm going to hold on this time, if I see exacerbation, and just wait it out- unless it goes longer than about 4 weeks.

 

I have to tell you, seeing your 15 year old finally sharing a smile with you and relating to you, seeking you out for comfort when its never happened before....learning to say mom, wanting to be cuddled...

Well, I don't care if its just managing the disorder instead of a cure- its much more than I had before, when everything was completely unmanageable and there was no hope.

Link to comment
Share on other sites

So by "appropriately" does that mean they will get a fever and sore throat if they never did before?

 

Otherwise, with no change in behavior, how would you know to give all these asymptomatic of strep kids the 10 day course of abx?

 

Good question, thanks. I'll try to remember to ask it specifically if and when we get back to Dr. K. Or maybe someone with a more immediate opportunity will ask it sooner.

 

I'm thinking, though, that the answer would be "yes." Since you're introducing a pooled blood product with, theoretically, the "healthy" immunoglobulin of some 1,000+ other persons, all in the interest of "retraining" and "rebooting" your kid's immune system, then it should respond "typically" as opposed to "atypically" to infectious stimuli, no? So, if a majority of the population, when infected with strep, has classic sore throat symptoms, then I guess the new-and-improved PANDAS kid should, also.

 

But, more importantly, if the immune system is corrected by the procedure, then the antibodies won't go into overdrive anymore, causing all the trouble. They'll come out to fight, then get quieted by the abx and fade away: no "self attacking self," no molecular mimicry, no long-term inflammation.

Link to comment
Share on other sites

Jill, :lol: I looked up the definition, too! (before you even said you did) :blink:

 

Regarding anxiety with my son....after a steroid burst, he was so calm, until he got Pertussis. He handles school with no problems and has no special accomodations........no issues that I am aware of....no concerns from his teacher. He is an over-achiever for his grade....I think the little guy missed less than 10 points total in all subjects the whole year!

He plays baseball and does well with that too...no problems or issues. He just tells my he feel "bothered" all the time. :(

That bothers me! Perfectionism....yes, a little, but nothing that concerns me.

 

 

Mom with ocd son....thanks for telling me I wasn't crazy....I needed that! ^_^

 

Fixit.....my kids are 3 years out from their "episode"....they are no way cured........that dang PANDAS is just below the surface.....keeping held at bay by keeping strep away with antibiotics.

 

Peg...your story is indeed touching and I am so happy for you and your daughter.

 

So, everyone........I know Marci Linchtenwalter, Jamie's Mom, said that since Jamie has been a teenager and off antibiotics, he has gotten strep again...just recently actually. Remember, she just managed his PANDAS with Amox. until he was able to go off....like Sammy. No IVIG, steroids, Pex. Anyway, I asked if he got his PANDAS symptoms (tics, ocd...did you see her video clip) when he just recently got strep...she said NO! Just that he was really run down for a bit. So, is that a child growing out of it as a teen????

 

I am actually thinking about letting my boys go off antibiotics for a bit this summer.......their symptoms do not escalate off them......maybe just a couple of weeks or so.....give their tummies a break and pump them with probiotics. Now, that may be crazy........right? :unsure:

 

And, where are those people that voted "cured" for thier kids? You really need to please tell us your story!

Edited by P.Mom
Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share


×
×
  • Create New...