Onset Of Puberty and IVIG

[thereishope]

Does anyone know what Dr K's definition of a "cure" is and how long a child needs to be in remission before he considers them "cured".

 

I still think it goes into remission. I think that you can "cure" a child of each exacerbation, but the overall disorder is in remission.

 

Also, and I'm just thinking out loud, for those PANDAS cases Dr K sees, are most of them kids whose parents have tried antibiotics without success so they are the ones who need IVIG? Whereas, if a child repsonds to antibiotics given by a local dr, they have no need to see Dr K. Meaning, are his statistics an actual sample of the PANDAS population? yes, I know he's seen hundreds, but are those the hundreds who are not doing well?

 

My son has done well on antibiotics alone and because of that I have not felt a need to see a specialist like Dr K.

[LNN]

Dr. K says without IVIG, no cure. He has treated 500 patients. Have you and he spoken about this issue, compared notes and cases and figured out why you differ in this area?

 

I hate the word "cure" - it offers such hope, like you might be able to go back to that pre-pandas time and live happily ever after. Cancer survivors don't use the word. I think even if they stay in remission forever, mentally, they can never go back to a "before" time. Hopefully, our kids will get to that place of having no memory of this, but I'm not we parents ever will. I personally wish our doctors wouldn't use the term until there's been a very solid, published longitudinal study with extensive follow-up. Having a patient not come back to you isn't necessarily a "cure".

 

I agree with you, Alex, that the IVIG/pheresisquestions are the hardest ones we face. It has such heavy significance and consequences for the whole family (will it work, what sacrifices can we make to pay for it, what are the costs of doing it v. not doing it?) It's like having to pick a future for your child without enough information to know if you're making the right choice. I feel like I'm playing "let's make a Deal" with my son's life and we just might pick Door #3 with the boobie prize.

 

I strongly feel more across-the-board information needs to be known about every kid who undergoes IVIG or pheresis before you can say if they "work" or are a "cure". Many on this board tell stories that make you wonder why IVIG is successful for some but not others. What was the child's quantitative IG levels? How long were they sick? Are they immuno-deficient, have a specific antibody deficiency? Have other immune system abnormalities? What was the infectious trigger - just strep, other bacteria, viral? Does time of year matter - if you get IVIG during the summer and aren't exposed to school germs, do the new antibodies have nothing to do and so do nothing to "tutor" the body? If you're exposed to an infection a few weeks post-IVIG, do the new antibodies help protect you or does the infection screw things up before the new antibodies had a chance to fix things? Does it work like a vaccine - where you're not protected by a vaccine for a few weeks until your body has a chance to whip up a new batch of antibodies against the agent, but if you stay healthy, you're then good to go for years and years?

 

I'm in way over my head when I start talking about the immune system and IVIG. But I always feel like advocating for a treatment without looking backward at why it works sometimes and not others is just not being fair to parents who are facing big time decisions.

 

I know Dr K has extensive experience. I respect that he's earned his right to speak from that experience. But I get very nervous when anyone - pro or anti pandas - starts speaking in absolutes instead of on a patient by patient basis. There simply is not enough known or documented (IMO). In this aspect, I respect dr L's approach, which is very case specific. In her radio interview, she says that abx works for some kids and if you catch it early, that might be enough. That there's no one size fits all treatment. I know Dr K feels very strongly this is not the case. However, only you are the expert on your child. Follow your heart - it's your best guide right now.

 

Laura

[peglem]

LLM:

I know Dr K has extensive experience. I respect that he's earned his right to speak from that experience. But I get very nervous when anyone - pro or anti pandas - starts speaking in absolutes instead of on a patient by patient basis. There simply is not enough known or documented (IMO).

 

Exactly- my child has so many "extras". She's 15 and has been menstruating @ 5 months, and has been dealing with issues since infancy. But, it seems that each child has their own set of variables that create shades of treatment differences. I truly do not know what "recovery or remission" will look like in my child. I think its certain that her messed up development through infancy and early childhood is not going to magically reverse. But how much of her neurological presentation is due to aberrant development and how much is due to this autoimmune thingy she's got going on is impossible to tell, and I don't know how we will know if the autoimmune issue is resolved. What we have seen over the past 2 1/2 months of increased zithro is that the exorcist episodes have greatly diminished...so, I guess we can say those were caused by post infectious agents. We know she has immune deficiencies and it makes sense to resolve those with IVIG. Will lower dose IVIG every 3 weeks make that worse? If we could accomplish the same thing with a few high dose infusions, I would prefer that to doing infusions every 3 weeks. But what I can get is the lower, every 3 week infusions. As long as she continues to improve on the treatment course we're on- I'll take it.

[ShannonOtown]

Does anyone know what Dr K's definition of a "cure" is and how long a child needs to be in remission before he considers them "cured".

 

I still think it goes into remission. I think that you can "cure" a child of each exacerbation, but the overall disorder is in remission.

 

Also, and I'm just thinking out loud, for those PANDAS cases Dr K sees, are most of them kids whose parents have tried antibiotics without success so they are the ones who need IVIG? Whereas, if a child repsonds to antibiotics given by a local dr, they have no need to see Dr K. Meaning, are his statistics an actual sample of the PANDAS population? yes, I know he's seen hundreds, but are those the hundreds who are not doing well?

 

My son has done well on antibiotics alone and because of that I have not felt a need to see a specialist like Dr K.

 

Vickie,

I total agree with you. My first email at 2am on a Sunday was to Dr. K, after I came across this forum website and final figured out my son's 3 year crisis was called PANDAS. Dr. K emailed back and wrote my sons symptoms sounded like PANDAS and he needed IVIG asap because he was 11 1/2 years old. Of course I was totally beside myself... what to do?? Long story short, my son is doing great after abx... he was not an extreme case and hopefully will never need to go the IVIG route.

 

I think those that travel the road to Dr. K are the extreme cases. So his 'cured' statistics are extremely skewed, since he doesn't see those patience that get treated with abx.

 

My son is doing great, but I know he is not cured... I used the word 'remission' too. There is not a day that goes by that I don't see him through PANDAS glasses and look for the symptoms and quirks that go with this disorder.

 

I do feel we are on the edge of a breakthrough and can't wait till a cure is available... or at least better understood.

 

 

Shannon

[sf_mom]

Well said LLM.

 

Its tough decision and why I think important to have a 'formal consultation' with your child's medical history in hand with Dr. K before even attempting to understand why he thinks this particular juncture 'puberty' is important. Especially, if his comments are worrisome to you. Ask him directly his % of successes with just antibiotics, his % of successes with IVIG (number of typical treatments required), what he views as a cure, what his views on plasma exchange and why he prefers IVIG (he has done both treatments in the past), etc so you can make an educated decision based on his 'current' expertise with PANDAS and YOUR child's medical history.

 

Unfortunately, sometimes his e-mail correspondences can be clipped and often direct.... I know talking with him directly is your best bet and a much different experience than e-mailing. I'm sure others who's children have been treated by him can attest to the same.

 

P.S. Dr. K felt my son's PANDAS was mild. We have seen huge improvement in areas we didn't believe were related PANDAS. He still has a few symptoms and responsive to strep but he is only 8 weeks post his last treatment. We are hopeful that he will have a full recovery. Is he cured....... who knows and as a result I pray every single night.

 

-Wendy

[P_Mom]

I know Dr. K has said first hand he has not followed up on the majority of his patients....so, I am curious as to how he can claim "cure" with IVIG for a certain percentage of the kids he treats?? I personally do not know of any that have received IVIG from him and have been cured. Cure to me is after IVIG, you go off the antibiotics after a bit...then you get strep, and even with no antibiotics you get no PANDAS symptoms with the strep....zero. I haven't heard of that yet. I have heard of children improving 100% after IVIG, however, these children are are long term antibiotics.......are they cured??????

 

I have a friend whose son did IVIG with Dr. K, and, if she hadn't contacted Dr. K to update...he would never had checked to see how he was doing. It has been over a year and he has not done follow-up on him. And, the IVIG was no cure for him.

Also, the patients on his web-site were followed for a short period of time....a year tops...and, these kids were on proph. antibiotics all the while....yet, he claims cure. It SEEMS to me the more likely scenario is IVIG brings the child into remission faster than antibiotics, and, perhaps more completely...but, for how long???? It just bothers me a bit because people are selling their houses to get this "cure" that MAY not exist. Oh, I do want to believe it, but.......

 

 

Wanting to hear from Pixiesmommy...her daughter was doing well post IVIG and just recently got strep....I don't know if she was on antibiotics or not.......I know some symptoms were emerging the last time she posted.

[momto2pandas]

I agree with you about remission. I pray that there are indeed cures for children that retrain the immune system and make it completely go away, but having had remissions of nearly 10 years myself only to have had a sudden episode or two before going back into remission -- and having seen my grandmother go back to having true anorexia nervosa in her 80's after a 70-year remission -- I am skeptical about "cure" until we have watched people for a lifetime.

 

That having been said, "remission" is not so bad -- having an episode every 10-70 years isn't perfect but few people experience perfect health or psychological histories over such lengths of time. As Sammy even said on his TV interview, yeah he gets symptoms againw when he gets sick, but he takes abx and they go away. So what.

 

I also agree with your other piece about bias in his patient group. I'll bet there are a whole bunch out there who go quite long stretches, if not indefinitely, doing well enough on antibiotics, antidepressants, or whatnot that they it doesn't make sense to travel, pay out of pocket, etc. to seek specialty care unless they're starting to see things really go downhill and suspect they may need something more aggressive.

 

 

Does anyone know what Dr K's definition of a "cure" is and how long a child needs to be in remission before he considers them "cured".

 

I still think it goes into remission. I think that you can "cure" a child of each exacerbation, but the overall disorder is in remission.

 

Also, and I'm just thinking out loud, for those PANDAS cases Dr K sees, are most of them kids whose parents have tried antibiotics without success so they are the ones who need IVIG? Whereas, if a child repsonds to antibiotics given by a local dr, they have no need to see Dr K. Meaning, are his statistics an actual sample of the PANDAS population? yes, I know he's seen hundreds, but are those the hundreds who are not doing well?

 

My son has done well on antibiotics alone and because of that I have not felt a need to see a specialist like Dr K.

[dcmom]

I am also wanting to hear from those who have had IVIG, and are truly 100%. Are they here?

[KeithandElizabeth]

I have spoken with 2 families recently, who are not on this forum, and who have wonderful IVIG success stories.

 

One family did IVIG 2 years ago and their daughter is now doing wonderfully and does not have any PANDAS issues. She said it did take a good year of healing after the IVIG. Her daughter has remained on antibiotics.

 

Another family who I have corresponded with via email did IVIG 2 years ago. Their son was extremely severe and had pulled out all of his hair. They also said that it took a good year to completely heal, but that their son went off antibiotics after the one year mark and even had a normal illness, without symptoms, recently.

 

In terms of this forum, PANDAS Chicago and Amy S have had wonderful IVIG healing stories. Diana's son is doing well.

 

Again, I think that 99% of the people on this forum are the families who are still in the thick of things. At least, this is what I am hoping.

 

Elizabeth

[P_Mom]

Right...I hear that all the time....but, these kids are on antibiotics. That is my point... "cure" would be No antibiotics, no symptoms with strep. I haven't heard one yet. I wish I had!! I have also spoken to the Mom you were referring to whose son pulled out his hair. It is my understanding he still has anxiety issues...however, Yes, good results, but, can any of them claim cure?? Has he gotten strep with no symptoms and no antibiotics?? That is what I am getting at.

[T_Mom]

After dealing with over 2 years of angst now over the "do we" or "don't we" decision re: more aggressive treatments...

I come to the conclusion that for each there may be a time of decision at which point we must choose to do something that makes us uncomfortable.

 

For us, the ( in our opinion, very benign) steroid burst was suggested by more than one doctor early-on--and we were too cautious, I was afraid, and waited too long (a matter of 2 weeks.)

 

When we did it, it was miraculous in effect. In our d's case we then had to grapple with what to do next...

 

I learned that I was not comfortable with doing nothing--My line of decision was that as long as there was obvious progression week to week (albeit slow at times) but as long as there was a lessening of symptoms we would stay-the-course.

If something changed, we would seek another avenue.

[Worried_Dad]

I agree, Laura. We've done 3 rounds of IVIG with Dr. K, and it helped (especially the 1st one), but I could not call it a cure. Without the high-dose augmentin, I don't know where we'd be right now.

 

Don't get me wrong: we love Dr. K. He's great with the kids (only doc my son enjoys seeing), his heart's in the right place, and he's just naturally an upbeat, optimistic person. I think he genuinely believes in the curative power of IVIG and has had many successes with it, especially with younger children. But - personally - I'm more inclined to believe in remission vs. cure and just pray our son will follow Sammy Maloney's trajectory. If we can get him back to something approaching baseline where he has a happy, relatively normal life and can go to college and chase his dreams, we'll be ecstatic!

 

 

I hate the word "cure" - it offers such hope, like you might be able to go back to that pre-pandas time and live happily ever after. Cancer survivors don't use the word. I think even if they stay in remission forever, mentally, they can never go back to a "before" time. Hopefully, our kids will get to that place of having no memory of this, but I'm not we parents ever will. I personally wish our doctors wouldn't use the term until there's been a very solid, published longitudinal study with extensive follow-up. Having a patient not come back to you isn't necessarily a "cure".

[KeithandElizabeth]

Good point about getting strep after IVIG without antibiotics. So, if this is what you mean by "cure" then I don't have these answers.

 

Maybe SF mom can chime in with what Dr. K's thoughts are on this since he must have some experience with these children getting strep after they are done with antibiotics.

 

SF Mom, has Dr. K ever addressed this issue with you?

 

Elizabeth

[P_Mom]

Just to clarify.......I also respect Dr. K and know that he is genuinely caring and doing his best to help these kids....where would many of us be without him? I would just like to hear of one TRUE cure with IVIG.....just one!!

 

 

Elizabeth....I don't think anyone has this answer...that is the problem.

[momto2pandas]

I did that poll on IVIG outcomes a little while back and I don't recall anyone saying that they had gotten a 100% result on IVIG. Most mentioned quite some improvement, but no-one claimed cure if I remember correctly.

 

I am also wanting to hear from those who have had IVIG, and are truly 100%. Are they here?