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The outcome?


nomoz
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My 8 year old daughter currently suffers from PANDAS symptoms. I am extremely hesitant to do anything other than periodic antibiotics and therapy.

 

In doing research regarding IVIG and PEX, I am left to wonder the following -

 

IF these children get better with age (I have an 18 year old niece with PANDAS, and anxiety seems to be her last big symptom - she is doing 100 times better now than in her pre-teen and early teen years), why chance these procedures?

And is there anyone who has had 100% effectiveness - a total remission- from either IVIG or PEX? Or do the antibiotics need to continue? And if they do, do you wonder what's really working, the antibiotics or the procedure?

 

My niece tried different meds during her exacerbations,(really to no avail) but never had IVIG or PEX.. and she truly is doing remarkably well and currently on NO meds.

 

If my daughter needed IVIG, I wouldn't hesitate to make it happen for her.. but it just seems a temporary fix to a much more elusive and complicated problem.

 

Thoughts?

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My dd11 was hurting herself scratching and picking at her skin til it ulcerated, many scars all over her arms and legs. Restrictive eating was pretty scary too. She was only able to attend school on a cocktail of psych-meds and she barely got anything out of it. It's a matter of severity and the result of each individuals benefit/risk analysis.

 

So your niece improved when her period began? We are keeping fingers crossed between treatment and puberty dd's worst days are behind her.

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Jag 10-It is my daughter she is speaking of. The dramatic change came at 18 with no meds involved. As one of the Pandas docs said to me...IT DOES GET BETTER to a much more manageable degree with some flare ups.From my experience and this is just my take on it..The point we are at now the flare ups are so minor that meds would NOT be warranted. If you read Swedo's literature she mentions 50% of Panda's children outgrow it by LATE adolescence. I believe that we have been fortunate to have fallen into that 50%.

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Hopefully, the practicing docs and researching docs will continue to collaborate and collect data on all these kids. I wonder what the similarities, if any, are among those who grow out of it and those who don't?

 

I have no regrets on choosing IVIG for dd11, it was absolutely necessary. My dd7 is another story where her symptoms are mild, thus far, do not inhibit her functioning socially or at school...but we watch. At this point, the risk does not outweigh the benefit for her, so NO IVIG.

 

I used to think the whole "cure" debate was a matter of semantics, but I no longer feel that way. I don't think IVIG is a cure; it is a shot at greatly improving (maybe to the point of being asymptomatic) the quality of life for very sick children.

 

Praise God your girl is doing well now and free to become the woman God intended her to be.

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Jag 10-It is my daughter she is speaking of. The dramatic change came at 18 with no meds involved. As one of the Pandas docs said to me...IT DOES GET BETTER to a much more manageable degree with some flare ups.From my experience and this is just my take on it..The point we are at now the flare ups are so minor that meds would NOT be warranted. If you read Swedo's literature she mentions 50% of Panda's children outgrow it by LATE adolescence. I believe that we have been fortunate to have fallen into that 50%.

Thats wonderful to hear!!! May I ask if your daughter has had strep since turning 18? Are the minor flairs from viruses? Thanks!

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My 8 year old daughter currently suffers from PANDAS symptoms. I am extremely hesitant to do anything other than periodic antibiotics and therapy.

 

In doing research regarding IVIG and PEX, I am left to wonder the following -

 

IF these children get better with age (I have an 18 year old niece with PANDAS, and anxiety seems to be her last big symptom - she is doing 100 times better now than in her pre-teen and early teen years), why chance these procedures?

And is there anyone who has had 100% effectiveness - a total remission- from either IVIG or PEX? Or do the antibiotics need to continue? And if they do, do you wonder what's really working, the antibiotics or the procedure?

 

My niece tried different meds during her exacerbations,(really to no avail) but never had IVIG or PEX.. and she truly is doing remarkably well and currently on NO meds.

 

If my daughter needed IVIG, I wouldn't hesitate to make it happen for her.. but it just seems a temporary fix to a much more elusive and complicated problem.

 

Thoughts?

 

Nomoz -

 

If your daughter is able to function with periodic antibiotics and therapy, then you are wise to not move the level of IVIG or PEX. It is quite likely that you caught this quickly and as a PANDAS-literate Mom you will keep a close eye on things. Your daughter is fortunate and I truly hope you can continue this pattern. If you find that she takes longer to get back to baseline or that her exacerbations are so frequent that she does not get back to baseline in between, then long-term prophylactic antibiotics may be needed.

 

That being said... for many of our children, PANDAS symptoms were either so severe or occurred over such a prolonged time that the child became non-functional. For many children, antibiotics and therapy do not offer a return to a functional level. For some of our kids, the autoimmune response has taken a firm hold and is unrelenting - even with antibiotics and even after the infection has cleared. For some of our kids, their immune systems are deficient and are not producing enough antibodies to fight infection, so the exacerbations come one after another.

 

Children are supposed to grow physically and mentally during their first 18 years. Any illness that causes backsliding in development or puts the child at a stand-still for a long enough time is detrimental.

 

The NIMH has said that IVIG and PEX should only be considered for "severe" cases and I agree. I think, though, that the definition of "severe" depends on the family and the age of the child.

 

I hope that one day all children with PANDAS will be recognized and treated early on so that most children will be able to function through their teenage years with periodic antibiotics and therapy. That would be terrific! :)

Edited by kimballot
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philamom-my daughter as a small child has had a history of throat infectons and continues to now. She was never swabbed when she was younger because ear infections always accompanied the sore throat and an antibiotic was always prescribed. She has not tested positive for strep lately but she still has high myco levels. I must add that my daughter was a very severe case and 3 times since the age of 10 she needed to stay with family for an extended period of time. She was disfunctional in her home envirorment and she perceived me as her trigger. It was a difficult time and it is hard for me at this time to rehash those days..Maybe someday I will be able to share....time heals. I must add that if someone 8 years ago had the knowledge I do now I WOULD have done pex in a heartbeat and been able to save a childhood.

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I must add that if someone 8 years ago had the knowledge I do now I WOULD have done pex in a heartbeat and been able to save a childhood.

 

I think that boils it down right there. While we all hope that our children will recover and "outgrow" this someday, as we have reason to believe - I think the question of whether or not to use IVIG and PEX, and when, ultimately comes down to quality of life. If the child is non-functional, of course it may be a no-brainer - but for other cases, there's no easy answer.

 

My son is one of the worst cases our pediatrician has seen (he's treated several cases, but is by no means an expert) and the youngest case Dr. Murphy has seen confirmed. The question of IVIG/PEX comes down to his quality of life. Is it ###### on us - sure, but even at his worst, we had to weigh the risks/benefits.

 

Off abx for almost 2 months now, we've backslid a bit, but he's still functioning - even managed to go to a birthday party yesterday afternoon without issue (of course there was a slight meltdown on the way home - but what 3 year old DOESN'T do that after leaving a birthday party :) ) Right now - he seems to be happy, and he's not missing out on any thing that "normal" kids do. Is OUR quality of life impaired? Absolutely! We deal with the majority of his OCD - which revolves almost entirely around food, so there's at least one meltdown a day, usually at dinner time. But is that enough for us to consider what we call "the big guns"? Just so we can have a pleasant dinner?

 

It's a very personal choice that's unique to each family and the quality of life they are looking for for themselves and their kids. There's no right or wrong answer.

 

That being said - about 2 weeks after we got dx and we learned more about PANDAS and the treatment options, my husband started a savings account for IVIG/PEX if and when we may need it. We're hoping we'll be able to use the fund for a romatic getaway in a few years instead!

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I must add that if someone 8 years ago had the knowledge I do now I WOULD have done pex in a heartbeat and been able to save a childhood.

 

I think that boils it down right there. While we all hope that our children will recover and "outgrow" this someday, as we have reason to believe - I think the question of whether or not to use IVIG and PEX, and when, ultimately comes down to quality of life. If the child is non-functional, of course it may be a no-brainer - but for other cases, there's no easy answer.

 

My son is one of the worst cases our pediatrician has seen (he's treated several cases, but is by no means an expert) and the youngest case Dr. Murphy has seen confirmed. The question of IVIG/PEX comes down to his quality of life. Is it ###### on us - sure, but even at his worst, we had to weigh the risks/benefits.

 

Off abx for almost 2 months now, we've backslid a bit, but he's still functioning - even managed to go to a birthday party yesterday afternoon without issue (of course there was a slight meltdown on the way home - but what 3 year old DOESN'T do that after leaving a birthday party :) ) Right now - he seems to be happy, and he's not missing out on any thing that "normal" kids do. Is OUR quality of life impaired? Absolutely! We deal with the majority of his OCD - which revolves almost entirely around food, so there's at least one meltdown a day, usually at dinner time. But is that enough for us to consider what we call "the big guns"? Just so we can have a pleasant dinner?

 

It's a very personal choice that's unique to each family and the quality of life they are looking for for themselves and their kids. There's no right or wrong answer.

 

That being said - about 2 weeks after we got dx and we learned more about PANDAS and the treatment options, my husband started a savings account for IVIG/PEX if and when we may need it. We're hoping we'll be able to use the fund for a romatic getaway in a few years instead!

airial95,

 

I agree 100%

 

Do you have any idea, generally, if your pediatrician and Dr. Murphy think that antibiotic prophylaxis is not necessary with PANDAS?

 

-----------------------------------------

nomoz,

 

If I was 100% sure IVIG was a cure, then regardless of my daughter's symptoms, I would do it. However, I believe like most of the posters in this thread, it is an intervention to help the children who can't get back to a baseline. For my family, based on that belief, it isn't worth us pursing right now.

 

I define a cure as being, a child who contracts strep (or other sickness), responds to a regular 10 day course of antibiotics, and has no increase in PANDAS symptoms at all. Also, I define it as not needing an antibiotic prophylaxis.

 

I will continue to use prednisone and antibiotics as long as they are effective. But many days and nights, I questioned if I was denying my daughter the best chance at recovery by putting IVIG on the shelf.

 

I believe that it all comes down to how severe your child is, and not everyone needs to rush into IVIG or PEX -- it's a determination only your family and doctors can make.

Edited by Kayanne
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Kayanne,

 

My pediatrician does think that in some cases prophylactic abx is necessary. I've never directly asked Murphy the question, but I know she's supports long term abx. Both of the doctors, however, also push for taking them off the abx from time to time to a) give their system a little rest from some of the side effects and B) see if the abx is necessary to maintain the progress.

 

Dr. Troufexis (one of the other Dr's in Murphy's office - we LOVE her, and so does my son) took us off the abx in December since we had been on close to a year to see what happens. We back slid - for sure, but not to the extent we thought we would. We've been lucky to avoid exposure since he's been off (knocking on copious amounts of wood right now) and backslid from about 85% to 75% with OCD being our primary issue. She wanted to keep him off for 2 months if we could, and we go back next week for a follow up. At first we were considering keeping him off longer, but in the last week he's come up with two new tics (his only other tic has been pretty dormant for a while) and a few new OCD things - like making us repeat "staged" conversations in a very particular way and hopping from tile to tile in the kitchen - clapping 3 times after each hop. We haven't seen an increase in the rages or tantrums (thank God - again knocking on wood) but I think we're going to go back on the abx next week!!

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Just my two cents here, i hope you don't mind.

 

I believe that first of all, everyone is different. every child developed pandas for their own body's unique reason, and each has their individual strengths and abilities to overcome it.

 

Sure, some kids with pandas may outgrow it, and maybe even 50%, as suggested in this string.

 

But to suggest that we use that as a global approach to pandas, just see if the child outgrows it, scares me. For some kids, the inflammation begins to damage the basal ganglia cells and may create a chronic lifelong untreatable inflammatory process.

 

if kids just outgrew pandas, we wouldn't all be on this forum. some kids may not even survive to outgrow it, and their suffering as young people and devastation of losing a normal childhood to illness, along with the massive stress on family life, goals and diminishing hope for happiness, well, how good can all that turn out?

 

In our practice, we have the privilege to be currently working with / treating several older children with pandas, who were never treated or never treated fully. By older children, i mean, in their 20s - 22, 25,26, 28 (they are SOMEBODY'S children - and all of them are still living at home with their parents, btw).

 

Granted, these wonderful kids may have had severe cases to start with. But its not pretty. They are suffering daily, and are unable to fulfill the life they had hoped for, up to this point. We do have hopes for them, that we can help. But it has shown me that to just sit by and hope that our kids outgrow it, or to have that be a physician's policy in their practice - well, it may be right for some people, and just not right for everyone.

 

i don't mean to be scary, and i don't mean that our kids won't be happy and healthy. and i certainly don't mean that if you are a child with pandas on this forum that you won't get better or that life won't go your way. Everyone is unique!! and if you're on this forum you are already showing that you are extraordinary!!!

 

i just mean, we have to have our eyes wide open. i would hate to just go along like, oh it will work itself out, and then find out it doesn't and that i missed the window when taking action would have been effective.

 

I already torture myself with how much earlier i shoulda/coulda caught this thing when DS first had symptoms, and how I could have possibly alleviated years of suffering on all of our parts, not to mention probably avoiding bankruptcy and oh, maybe i'd still be married.

 

Sorry to be a downer, maybe i'm just tired.

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Does anyone have a reference for this? Also, when Swedo says 50% outgrow it....is this 50% of treated PANDAS kids (abs, IVIG, PEX etc) or 50% of kids regardless of if they are treated? My gut instinct it that a child who's PANDAS is treated aggressively when young are more likely to outgrow PANDAS (and have a normal childhood). (I also get a strange feeling that GIRLS are more likley to outgrow this than boys....the turkish study was all boys, for example.)

 

As far as IVIG...we've done it 2x (at9 years, and almost 10). Our dd had her first big PANDAS explosion at 7.5 years (anorexia), but likely had lower grade symptoms (handwashing/urinary stuff) since age 4. Right now she's doing great (5th grade), I'd say 95%...but we don't dare take her off Azith. (or Prozac for that matter). Also, she continues to have learning issues (that's lots of stress for her and us) that likely stems from PANDAS (math facts, handwriting, spelling, speech). In hindsight, IVIG was not a big deal (okay finances are put aside, and insurance did pay for us). And, we've also spent thousands of dollars (and countless extra hours in school work/stress) in OT/educational testing b/c of these likley PANDAS related learning issues. And she has accomodations in school (which adds to her stress, b/c she is embarassed about having to use a math multiplication card at school). So, I wonder if (we knew about PANDAS sooner) and even done IVIG at age 7.5 years (instead of waiting until 9) if things would be different?

Edited by EAMom
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(I also get a strange feeling that GIRLS are more likley to outgrow this than boys....the turkish study was all boys, for example.)

 

/quote]

 

 

Hey....quit saying that! :lol:

Not very encouraging for a Mom of two PANDAS boys to hear. :unsure: I do know of several boys whom have 'outgrown' PANDAS. One such boy was never treated at all because they didn't find out he had PANDAS until he already came around and by that point...no meds were necessary. He was very severe and homebound with severe OCD and rages for 3 years. No meds what-so-ever...parents did not want to medicate. Plus, so far this year, it looks as if my older son MAY be in the process of "outgrowing" it. His last flair of tics was in June...this is the longest he has been tic/symptom free. He has not had a flair since then, over half way done with school, and 3 bouts with illness under his belt with no increase in tics..... 1 stomac bug with fever and 2 URI's. He had ALWAYS flaired with any illness before since onset in 2007 when he was 7...he is now 11 years old.....almost as tall as me (5'5")....110 lbs (him.. :P) .....and starting puberty. I am extremely hopeful for him...but, very cautious of course. I am soooo far from saying he is "over it" (if we can even ever say that...hopefully we can some day)...nor am I, or his doc, ready to take him off proph. antibiotics any time soon. We don't want him to get strep and loose his gains. Hs is only on 250 mg Augmentin daily. When exposure is high, I give it twice a day. Last night at a school event, I found out one of his best buddies and classmates had strep 3 weeks ago. I would have never known....there was no increase in anything with him. (and this is just on 250 a day...had I of known strep was in the classroom...I would have been doubling it) This is even more encouraging. I am hopeful that I can report him getting through a whole school year without any symptoms....it will truely be a milestone....somethng we have been hoprfully waiting for for 4 years. Prayers welcome. :D

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Thanks, everyone, for your much valued opinions. My heart goes out to all of you.

 

I'm certainly not saying I wouldn't consider IVIG - my daughter has extreme rage issues when she is symptomatic - but I guess I was just really wondering if anyone saw a REALLY big change post IVIG, and it seems to be the case only some of the time.

 

My daughter tested + for lyme last year, and three months after biaxin, tested -. She also had high mycoplasma levels during this period. She had already had her tonsils out at this time. But I remember well it to be one of her most serious exacerbations.

 

I am just really afraid (maybe we all are) to do the wrong thing, or to cover up symptoms with Tenex, or Zoloft, etc, and miss the autoimmune part.. or to overdose her little body on antibiotics... or to do IVIG only for it to possibly screw up her system more.. I'm just afraid - she's 8.. It's really easy for docs to give advice, but it's much harder as a parent to allow your child to be an experiment. Does that make sense?

 

My God, truly, all I want is for this to just go away. It's caused more stress on my marriage than I ever thought possible - not even sure if it's salvagable at this point - it's caused my 4 year old a world of havoc to witness and sometimes be the victim of, and it's caused a beautiful, bright 8 year old child a very large load to carry.

 

I see a few of you do other meds... I guess maybe Tenex isn't so bad???

 

I don't know.. seeing my daughter when symptomatic, noticing her very pronounced red under-eye circles and pale countenance, it makes me wonder if lyme didn't do a number, and maybe if IVIG IS a necessary step in her recovery.

 

Can I ask the IVIG parents, did your child test positive for lyme???

 

Thanks again to all of you!! This forum is truly a blessing.

Noelle

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