IV poll

[P_Mom]

Someone on here (1 person) posted their child was cured with IVIG!! I would like to hear more about that.......

 

Everyone is in a different boat with PANDAS.....and I understand those who say they are only looking for improvement, and that cure does not matter to them, however, it does matter to me.

 

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!

Edited June 10, 2010 by P.Mom

[Kayanne]

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.

 

I'm so happy for your family!! I pray that you will continue to see healing!

[Fixit]

I said my prayer for your daughter....

i am glad things are progressing...

and remember per Nancy D said it took her 2 1/2 months to see an improvement with both ivigs

i think she said they were about a year apart......

easier said then done...i have NO patience...i hate this ride

[ajcire]

I haven't done ivig and am not considering it for my child but if I did, I don't think I would be able to put a percent on how much better or worse from it he was because he goes through times when he is better than others... so if it takes months to see results I would have no way of knowing if it was the IVIG or him waxing and waning due to whatever causes the waxing and waning.

[melanie]

well althought the waxing thing is true there are definite changes due to the IVIG.

 

Melanie

[melanie]

It does seem the 1 person who was cured was the 2,0g dosage (im guessing)

[P_Mom]

Who is that? This cured person....please share more!

[ajcire]

.

Edited June 10, 2010 by ajcire

[JAG10]

Someone on here (1 person) posted their child was cured with IVIG!! I would like to hear more about that.......

 

Everyone is in a different boat with PANDAS.....and I understand those who say they are only looking for improvement, and that cure does not matter to them, however, it does matter to me.

 

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!

 

These are good, legitimate questions, but likely unobtainable at this point. By cure: You are looking for children, diagnosed with PANDAS, treated with IVIG, followed up by at least a year of abx, then off abx for an extended period of time (years) who despite re-exposure to strep remain assymptomatic of any PANDAS symptoms.

 

These folks could be hard to find via poll for a couple reasons. Some treating docs don't want to take the risk of taking them off abx. (not only bcs of the child's health, but many parents make a huge financial investment they don't want to risk having to repeat) reducing the pool of possible responders significantly. Also, the children you are looking for, by definition, are years post PANDAS symptoms and their parents are probably not on here like those who are problem-solving. Why would they be? Even in caring about the cause, you're not motivated like you are when trying to get your kid healthy; you naturally move on.

 

These kids are all over the map; current age, age at onset, years symptomatic, severity, symptom cluster, immune system status, vaccinations or not, co-existing disabilities, co-existing infections, cognitive status, diet, other medications, siblings; pandas, non-pandas, possible pandas, none. In a poll, all we know is that they are a fruit; we don't know if they're an apple, kiwi, strawberry or pineapple.

 

Is there enough information gathered to draw any conclusions about the cure question? It doesn't seem like it. Aren't there a lot of diseases that have this debate? Are you cured of hepititis or is it just "no longer detectable?" Perhaps cured is a word that is too emotionally charged? If these kids have toll-receptor vulnerability that get overloaded, can you cure that overload but assure overload will never happen again?

Maybe some PANDAS kids receptors get overloaded very easily and others not so easily but they came across the right collision of nasty bacteria? Maybe the "assymptomatic with and/or without abx support" will be a more obtainable question for science to answer? If years post IVIG, an assymptomatic child is off abx, becomes exposed to strep, exhibits neuropsych behaviors, then when the infection is treated w/abx is again assymptomatic... what's that? Pretty close to cured?

[melanie]

Well,all I really wanted to know was about the people on the site now.This isnt a scientific poll ,I do IVIG with my son every 21 days and am not planning on stopping.I just want to know for my own info whos doing what and how they are doing.

 

I cant find any information on other patients Im assuming the ones that arent here are cured.

Melanie

[ajcire]

I would definitely not assume that just because they aren't here that they are cured.

 

I think it was more just that nobody on here currently could really select cured unless they have gone a very long time after IVIG with having been re-exposed to strep without having any symptoms.

[P_Mom]

Jill.....I would think, being that Dr. K, L and T have been treating these kids for a decade, on average, that if they kept records on these kids, they would indeed have enough info. and time to find out what happens after these "cured" kids get IVIG or PEX, go off antibiotics, and then get strep. I know Dr. K takes the kids off antibiotics after a year....so, he should have that info. IF he has done proper follow-up on these kids.

 

And, if it is a temporary cure, or, partial cure, why does he not say that? Why does he say "COMPLETE cure of the condition?"

 

Right, there is not enough info. kept by these docs over the long haul to claim cure......that is where I get caught up with Dr. K's statement....and it doesn't help my anxiety at all to hear him say that....only makes it worse!

 

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! Do you know how many parents that go to his site are getting IVIG for their kids hoping for a cure because of his statements? I bet dozens, and dozens! And I do know that some know better and realize that IVIG is most likely temporary, and, they are happy with that.

 

Sorry if this upsets people or is disagreed with by many....but, don't we deserve the truth????

 

And another thing that bothers me......I feel huge pressure to get IVIG for my kids before they hit puberty because Dr. K says it becomes ineffective afterward! Dr. L and Dr. T say that is NOT the case....but, it is a parents natural tendency to err on the side of caution, right? So here I am, with two mild boys, wondering if they need IVIG, wondering if it will "cure" them or bring them to absolute 100% (there is not really anywhere else they can go...improvement would make them 100%, I assume, they are currently at 97% and 93%, I'd guess)...and, on top of that...feeling alot of pressure to do it NOW or my chances will be shot.....my older son is 10/12.

 

Dr. Cunningham stated that Cam Kinase burns out with time regardless of treatment....she says that IVIG is not necassarily needed for these kids! UGH!! Who to believe ? What to do? I know it is an easy decision for the kids that are in crisis and not coming out of it.....but, what does one do in my situation? Any advice?

Edited June 10, 2010 by P.Mom

[P_Mom]

OKAY, ANOTHER CURED response. Please, those 2 that posted that....please share your experience. It is very important to us all! And we would all LOVE to hear about it!

[melanie]

2 cured and two at 2g.Who are you??

[Fixit]

i would have said that between my sons episodes...he was cured...it was like a miracle i took for granted each and every time....

with that said...it doesn't seem as though strep is his enemy the last 2-3 years...it is some other illness, as no pos strep info, but complete remission per abx...so my so may have out grown, the strep thing...

now i think, i have to heal him,(in our regards, stop the overdrive system as i think i have gotten rid of what may have been infecting him) so that what ever is going on, isn't doing what ever its doing anymore as his brain matures to fight off these things on their own,,,,

i know that doesn't answer any scientific question...but i think it's a matter of trying to heal them as much as possible, so this new wiring doesn't get locked behind the doors as the brain shuts its doors (as the brain solidifies) if that makes sense

 

i think waxing and waning is different from the experience of ivig...with those 4 beautiful days i had in march as an example..i would not pursue further treatment if he could have held that state.....

now all his markers are just pointing auto immune issues..camk, urinary neoptrens,there was somehing else scott mentioned..it is just fight itself(no attacker)

 

i have not done ivig... i wish and continue to hope the things i am doing in the mean time do more...and if we do ivig we will be in a better place before going in and he wont have as much to fight

and i think if ivig works i could see 100% too if i can keep him at his healthest state, and when i know of infected people, keep him away...

and i would guess if you can go 1 year you are close,,,if you can go 2 i believe you did it!!!!!

 

just sharing my thoughts....i am freaken scared!!!!! to do it...to not do it......

 

 

I would definitely not assume that just because they aren't here that they are cured.

 

I think it was more just that nobody on here currently could really select cured unless they have gone a very long time after IVIG with having been re-exposed to strep without having any symptoms.