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Onset Of Puberty and IVIG


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Because it scares the heck out of me and probably others to say 100%. We are close but I do not want to 'jinx' anything. I find I'm analyzing behavior now that is probably age appropriate!! Just the other day we had some mood liability.... I'm thinking OH NO. Well guess what, he was hungry.

 

I think a great pole question would have been do you have any REGRETs in your choice of IVIG as a treatment. What % of improvement do you feel your child achieved as a result of IVIG. Granted, we will always have treatment bias but again we saw huge improvements in areas we didn't realize were PANDAS. MOSTLY, he talks about being happy and having happiness in his heart.

 

-Wendy

 

 

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?

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My understanding after IVIG and ongoing antibiotics are no longer required every 'known' strep infection is treated aggressively with a full dose 14 day course of antibiotics. It is also my understanding that he has only had two patients relapse after 3 years of being symptomless. In each case the child had a series of events illnesses in advance relapse. Vigilance is key.

 

 

 

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

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One thing I'd really like to see regarding the results of IVIG treatment is a simple separation of results in kids who had some sort of immune deficiency (not just low-ish levels, but really what an immunologist would call an immune deficiency) vs. kids who did not. Are the kids who are improving dramatically with IVIG treatment the ones who were immunodeficient to begin with and who needed IVIG just based on their immunology results and infection history, regardless of PANDAS? Or is it the reverse? Or neither? And those whose situation was made worse after IVIG, were they immunodeficient orignally, or not?

 

There is some evidence that the state of being immunodeficient creates excessive levels of inflammation. At least in HIV, when the immunodeficiency comes into play, levels of inflammatory cytokines go way up, higher than in "normals". It's like given that the body isn't fighting infection well, it tries harder to stimulate the ole' immune system -- leading to an inflammatory state (and breached BBB.) So I can see a case where the root problem is immunodeficiency (could be primary, could be secondary due to damage from an early infection), which then causes problems both with ongoing infections and with excessive inflammation in response to infections. If the root problem is immunodeficiency and everything else is downstream of that, then it would make sense that treatment of the immunodeficiency would go a long way to a "cure," assuming that once the ID is treated the body figures out that it doesn't have to go so crazy with the cytokines any more. However, though I'm no expert on immunodeficiencies, I haven't seen anything to suggest that early treatment of immunodeficiencies actually "fixes" them. Some kids grow out of them, some require lifelong treatment...but barring stem cells or some such, I haven't seen anything to suggest that immunodeficiencies can be "cured" by treatment, without ongoing treatment. Perhaps the IVIG can take care of it until the kids grow out of it on their own? Or if the immune damage was just residual from an early infection (secondary immune deficiency), maybe it can fix that and then it doesn't come back again, assuming that the kids have matured enough in the mean time not to suffer the same damage again?

 

And if the immune system is healthy to begin with, what is the IVIG doing to help that we could expect to be permanent?

 

 

Our daughter was diagnosed with PANDAS 14 months ago. Her symptoms pretty much disappeared over 3 months post diagnosis. She had a slight increase in obsessive cleaning after receiving Flumist this fall (we will not administer that or a flu vaccine in the future). She still cleans a bit, but behavior is manageable. She is happy, healthy, well adjusted in school, enjoys her friends, and is making A's. We feel like we have her back. Our ENT prescribes a precautionary round of Augmentin when strep flares at her school and so far this has kept her strep free this year. I listened to the Chicago radio story on PANDAS and felt my stomach drop when Dr. K stated that IVIG needed to be administered before the onset of puberty which occurs at the approximate age of 10. Our daughter is currently 9 1/2. We don't feel that her symptoms warrant IVIG at this point. However, after hearing Dr. K's comment I am beginning to second guess our choice. There are so many different schools of thought out there and I'm not sure which is correct. Any thoughts on this?
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Not disputing whether it's a good idea or not, just whether it could theoretically be a cure. As I mentioned before, I don't think "cure" is necessary to have a very positive outcome. If life is good and management is minimal, then the difference is largely theoretical.

 

Because it scares the heck out of me and probably others to say 100%. We are close but I do not want to 'jinx' anything. I find I'm analyzing behavior now that is probably age appropriate!! Just the other day we had some mood liability.... I'm thinking OH NO. Well guess what, he was hungry.

 

I think a great pole question would have been do you have any REGRETs in your choice of IVIG as a treatment. What % of improvement do you feel your child achieved as a result of IVIG. Granted, we will always have treatment bias but again we saw huge improvements in areas we didn't realize were PANDAS. MOSTLY, he talks about being happy and having happiness in his heart.

 

-Wendy

 

 

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?

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[DebC -

 

I've talked with 3 girls and 1 boy that have outgrown this at puberty and 4 girls who have not (now ages 21 to 25).

 

I talked with Dr. Swedo in Washington DC a few weeks ago and she said in her estimation (no one has tracked the cases) that is a 1/3 will outgrow just with help of antibiotics; 1/3 need IVIG; 1/3 will carry it into adulthood.

 

She never tracked kids with IVIG or just antibiotics. She feels Dr. Cunningham's CamKinase tells the story that the person's autoimmune system is overreactive and has a problem dealing with strep. It makes sense to do a immunological workup to see if there are weaknesses in the IGG's, etc etc, etc.

 

You're right - it is uncharted territory and I am TRYING to get the darned doctors to review the 200 cases I've compiled. But Swedo has failed me at the moment.

 

What I can see is this: Some kids HAVE to HAVE IVIG because antibiotics begin to fail over time. It seems to excerlate healing. The children I do know that are older and are on antibiotics only - are not well-adjusted kids - tend to be more anxious and fearful and loners. BUT IF YOUR DAUGHTER IS FUNCTIONING HAPPILY - there is a mom I can connect you with who has a similar daughter; doing well --- then, maybe you'll be just fine.

 

No one has followed these kids over a very long period of time. I can just connect you with a lot of moms and you'll have to use your wisdom. Let me know. pohlmandiana@yahoo.com

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In regards to my ds i dont thing and the numbers don't seem to show and immune defiencey...

i think it was that one set of shots after a feaver and many repeated streps in early childhood....and since i'm not chasing a big immune problem..more the naggy,like trying to get sh9ue off your shoe....

 

But my question is does anyone know if they are using stem cells....i don't have my DS saved but i have my other 2 boys at viacord.

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Cure is a strong word, but it is the word Dr. K uses on his website. Here is the quote.

"IVIG appears to be the treatment of choice for PANDAS. In properly diagnosed cases IVIG treatment can be expected to result in a complete and lasting cure of the condition in a significant number of cases."

 

The question is did Dr. K come to a statement like this lightly or did he arrive at this conclusion after years of treating this disease? Again, he has the most experience treating PANDAS. Maybe he tried for years to get kids to full remission using antibiotics alone and in his judgement it didn't work.

 

When we first did a phone consult with Dr. K last year, we had provided him with a health history that included a period several years ago when my son developed severe separation anxiety and was having intrusive thoughts. We were new to PANDAS and until that moment didn't realize that this previous episode was actually a milder PANDAS exacerbation. Through Dr. K's extremely perceptive questions, we realized that even though we went on with life as the first episode faded, my son never truly returned to his old self. He was more anxious, needed a few rituals in his life to feel comfortable and was not as lighthearted, and probably some other stuff we aren't even aware of. I think for those parents who are convinced that their children have recovered from PANDAS from antibiotics alone, it is important to ask yourself some hard questions like, is my child an anxious child, is my child talkative, is my child comfortable around adults or children they don't know, is my child easily irratable, does my child have limited interests that they focus on excessively. I'm sure Dr. K could ask even better questions since he's smart and this is what he does. Even among docs who treat PANDAS there are those who would say these kids start out predisposed to anxitey and OCD. More likely I think is that these kids have had previous mild PANDAS episodes from which they never truly recovered.

 

For me the question is, is mostly recovered good enough? If I was confident that my son had fully recovered and was truly functioning at his full potential from antibiotics alone, I absolutely would not have done IVIG. But for me, mostly recovered and funtioning well would not have cut it if I new there was an avenue that provided the hope of greater gain.

 

Again, what I'd really like is for Dr. T and Dr. K to compare notes and see why they have a different opinion on this. Alex

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For me the question is, is mostly recovered good enough? If I was confident that my son had fully recovered and was truly functioning at his full potential from antibiotics alone, I absolutely would not have done IVIG. But for me, mostly recovered and funtioning well would not have cut it if I new there was an avenue that provided the hope of greater gain.

 

Again, what I'd really like is for Dr. T and Dr. K to compare notes and see why they have a different opinion on this. Alex

 

I totally agree that "mostly recovered" is NOT ENOUGH. However, I do think a small percentage of children can get FULLY back to their baseline with only antibiotics and/or steroids.

 

In my mind a cure means that the child will be positive for strep, not have ANY increase in symptoms and NOT have to take antibiotic prophylaxis until adulthood...and they would respond to the "typical" 10 day treatment of antibiotics for that strep infection.

 

So, if Dr. K could tell me that was his definition of a cure, then I would seriously consider IVIG. However, my daughter's symptoms fully abated after her use of steroids as prescribed by Dr. Latimer (who also has treated many of these children)--even though...as I look back and realize that yes, she probably had a minor PANDAS episode at about 3 1/2 years.

 

So here we are again...strep hit our house...PANDAS daughter kept testing negative (was on pen vk prophylaxis) but we saw her symptoms ramping up (slowly over a few weeks...that's how it happened last time for us too). We caught this even earlier than last year...the school continues to report that she is doing fine.

 

After one week of prednisone, we are seeing some gains, and I am confident that she will be back to us FULLY again. If not...I feel confident that Dr. L will be with us for the next level...Plasmaphersis or IVIG..which ever as a family we decide.

 

It is entirely reasonable to try antibiotic and/or a month of steroids first.

 

ALL treatment options should be on the table. It is up to each family to decide which routes to take. I am just very grateful that Dr. Latimer offers all of them, and I hope that she is also going to be "comparing notes" with the other doctors at the Autism One conference.

 

~Karen

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Just want to add a little:

 

Remission or cure- I think that IVIG and maybe pex have the potential (but I am not totally convinced) to "reset" the child and immune system back to where they were prior to triggering strep episode. To me that would be enough of a cure to warrant the risk. I think the prophylaxis is separate- because if there is a genetic vulnerability- there is probably no cure to that, and pandas could potentially (but not necessarily) be triggered with a future strep.

 

My question is are the kids really reset with ivig? My dd had pex- and initially she was 110%. She got the flu, which caused a relapse that we "managed" with steroids. She is now holding at 95%. She does hit minor bumps for a couple of days when exposed to strep. Will she continue to improve over the next year, so that I can finally say she is 100%? Would she get to 100% with IVIG? I am not sure. Where are the parents whose kids are 100%? I mean, we are thrilled with Julia's progress, and she is happy as a clam- but I would have to be up front to other parents and say: some of that darn ocd was sticky... She hasn't developed any new ocd issues, but a few of the ones she had, are still annoying to her.

 

This may become clearer to me with my older dd. She was absolutely NOT hit with pandas until she was 8 1/2. So much of her (former) personality was the opposite of pandas junk. She just had pex. Since I had so long with her healthy, I will really be able to see what lingers post pex. Since she is the older one- if we feel she is not where we want (or headed there), we will seek ivig with her.

 

I agree with you, Alex. It is really impossible, as a parent, to sit by and not let them live to their potential. Life is hard, anyway, they don't need ocd, and anxiety to make it more difficult for them. PLEASE- keep me posted on how your son is doing post ivig (I really hope you can be thrilled with the results, and are able to relax and live with less worry)- we may be there in 6 months if we are not happy on the progress she makes...

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re Dr. K:

I agree with the others that said he likely has biased patient sample (the kids that didn't respond to abs are willing to travel to Chicago for treatment). I also wonder if Dr. K would have more anti-biotic "cures" (or remissions w/out IVIG) if he were more aggressive with Azithromycin (which would get a mycoplasma co-infection, or certain strains of strep) and/or more regularly used high (Saving Sammy) doses of Augmentin, and perhaps later longer doses of pred (a la Dr. Latimer).

 

re our (Buster and my) own dd UPDATE: That said, our dd (now 9.5 years) did end up needing IVIG in August 09 (despite 250mg/day Azith long term). Undoubtedly she was/is a more severe case...hx full-blown anorexia nervosa/OCD/mild tics, high PANDAS range CaM kinase ll when not in an exacerbation, with the highest CaM Dr. C has ever seen (above high SC) after H1N1 exacerbation in June 09.

 

As far as how our dd is doing now. I definitely wouldn't consider her 1x IVIG (2gm/kg over 2 days) to be a cure. She did very well for many months, possibly b/c of no strep exposure that we know of and no major illnesses. In early Feb. 10, she got sick with a cough and 1 day fever (100.5--nothing super bad) and has been in a "mild" exacerbation ever since. She has been more irritable (comes and goes), has questions about food and is more restrictive in her eating (fairly subtle compared to Spring 08), doesn't want to play with the neighbors (so less social), has started touching her back/ribs from time to time, wants to stand while eating (she started sitting after IVIG). I don't think she's lost weight (she's 58) but she should be gaining b/c she's growing and she does look thin. On the bright side, nothing is "full-blown" and she is able to go to school, and for the most part is happy.

 

As far as our plan: She doesn't appear to be "recovering" from this episode on her own. She continues on 250mg/day Azith, advil, 10mg/day prozac. We hope to resubmit blood to Dr. C. soon and then try to convince the "local docs" to repeat IVIG. Our psychiatrist does agree that is what she needs. We are willing to travel to Dr. K. if we can't get IVIG locally.

 

Steroids would be another option, but I am leary since ther has been so much illness going around school (and our house!) and she didn't have a dramatic reponse to her original "burst" (benefits took 2 weeks to kick in and then she only improved for 1 week).

 

I know Dr. K had said at one point that the Anorexia cases are more likely to need a repeat...so just b/c 1x IVIG didn't work for us, doesn't mean it won't work for others.

 

I suppose what makes me nervous is if she is still so vunerable with a non-strep illness, what would happen if she actually got strep (or was exposed)?

 

And all my comments may be premature...since she only had IVIG in Aug. 09, and she is still within the 1 year "healing period".

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EAMom...that cough....have you outright asked the ped if it could be Mycoplasma? For my non-PANDAS son that was his only symptom and they did a clinical dx of Mycoplasma. If by any chance that's what she had, a change in antibiotics, like Biaxin, might help.

 

Granted, I don't live anywhere near you, but my ped did say that he's seeing a lot of it. Then he started to mumble something about because of H1N1 and a very bad allergy year.

 

The school did have a lot of coughing cases and mycoplasma is contagious.

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EAMom...that cough....have you outright asked the ped if it could be Mycoplasma? For my non-PANDAS son that was his only symptom and they did a clinical dx of Mycoplasma. If by any chance that's what she had, a change in antibiotics, like Biaxin, might help.

 

Granted, I don't live anywhere near you, but my ped did say that he's seeing a lot of it. Then he started to mumble something about because of H1N1 and a very bad allergy year.

 

The school did have a lot of coughing cases and mycoplasma is contagious.

 

We kind of wondered that but dd's been on so much Azith...I would think that would eliminate any Mycoplasma? Maybe not? We figured it was viral.

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Here you go..

 

http://www.latitudes.org/forums/index.php?...ic=7255&hl=

 

I tried to be careful how I worded it. So it looks like 3 kids were on Zith, found out they had Myco P, switched to Biaxin then saw improvement.

 

With my non-PANDAS son, I thought the cough was a result of allergies since my PANDAS son had a sinus infection from what the ped believed came from allergies. I brought my non-PANDAs son for a strep test since he was exposed and instead left witha script for Myco P.

 

If by any chance it is Myco P, it was said on here a steroid could worsen it. So, it is worth ruling it out before a possible burst.

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