pandas can be cured only if it's treated early?

[croatianmum]

yesterday I had a long talk to immunologist doc. here in our country He was treating one 17 yo pandas boy. Tried IVIG; abx; Pex, had medicine for lyme and bartonella also...nothing was working, the boy didn't improve.he was better for a while but than again all his ocd and tics came back again.

 

This doctor opinion is: ONLY in a early stage pandas can be improved with abx and IVIG or pex. If you start treating pandas years after first symptoms, the children can not be helped. hi said that the brain damage is allreday to big to be fixed;it's permanent, and that there is nothing else to help..

 

Is it really so? Are there some sucsessfull stories in treating pandas years after first symptoms?

 

my son is 13; 2 IVIGs didn't helped him, so I'm really kind of hopeless, aspecialy after what this doc.told me

 

 

 

 

[PIK]

I never had tics but I had OCD starting age 14. I started taking antidepressants which helped until age 28 and then I got VERY sick. I am now on anafranil (clomipramine) which has helped my psychiatric symptoms. I have been well for the past 4 years. I still have elevated ASO. I am working with a rheumatologist on this.

[kimballot]

I can understand what the immunologist is saying, and I can appreciate his experience with another child, but I really do not think we are at a point where we can say definitively who will and who will not benefit from treatment. The only studies that have been done with PANS have been kids with clear-cut, first-time PANDAS (no co infections) or a few kids with first-time exacerbations from a virus or another type of infection (back in 1995). I do not believe anyone has studied older children who have had years of untreated exacerbations.

 

I am telling you this as my son is 16 and did not start treatment for PANS until age 13, despite a lifetime of chronic infection and repeated symptoms with each infection. He had many, many small exacerbations with sinus infections throughout his life, and has had two very large exacerbations - one was due to a severe hidden tonsil infection and one was due to a hidden infected sinus cyst. The first one took about 4 years before he was functioning at a "typical" level. The second one happened 4 years ago and he is just returning to school and starting to function this year. Each exacerbation takes a toll and, yes, leaves him with some residual problems such as handwriting or intrusive thoughts. I do believe that with early treatment he would have no symptoms at this point - and that is my prayer for future children.

 

I recognize that this is a chronic condition for my son and he will be managing his illness and his symptoms for the rest of his life. That does not mean that he cannot have a very functional and fulfilling life. Without treatment he would need to be institutionalized, I am sure.

 

So... is there hope for children with long-standing PANS? yes - I think so. Will they be cured? Perhaps not. Can they learn to manage their illness and function? I suspect the majority can and will - but we need more research to understand this disorder to have the best management possible. Should we stop treating them because they are well past their first exacerbation? Absolutely not. Whatever the cost of treatment in terms of time and money and frustration and quality of life... in the long run it will be nothing compared to the cost of NOT treating our kids in terms of time and money and frustration and quality of life.

[T_Anna]

I certainly hope he is wrong. There are many here that are seeing success in older children with monthly IV steroids an monthly 1gram IVIGs and sometimes immune suppressants like CellCept too.

 

My son also prob had this for years and we didn't notice until a year ago. We haven't been cured with PEX, IVIG or abx, but they have all helped, so we hope we will get him all the way back.

 

T.anna

[tpotter]

My 20 year old is doing great when modifying his diet, and working with an Ayurvedic doctor to repair his gut (70% of the immune system is in the gut.) It is very clear when he doesn't watch his diet, because he gets anxious, angry and confused. He was dx with Asperger's Syndrome when he was in the 7th grade (had symptoms before), and PANDAS at 15, and now we know it is PANS (including lyme and co-infections, + strep, etc.) IVIG helped with 2 very serious OCD issues.) But, the diet now is what is taking care of most everything else. My 17 yo is also doing great, using homeopathy. Herxing like crazy, but doing great. Got sick overnight when he was 8 years old, not diagnosed until 12 years old, and not seriously treated until 13 years old. Both my boys had 1 PEX, and about 7 IVIG treatments, plus years of abx. Yes, these treatments helped, but now, I am finding that the alternative treatments are helping. I don't know whether or not we would be getting this benefit if we had not taken the edge off things with the other treatments, but I do know that now, alternative treatments are helping way more. We are even off abx.

 

I don't know if this answered your question, but as KimBallot said, there's not enough research. Clearly, getting treatment early is a wonderful thing, but there's no question that older children can and do improve and are functional with treatment. BTW, my 20 year old is an engineering student at a major university. My 17 yo graduates this year, and plans to go to college. Neither was functional 4 years ago.

[philamom]

I didn't read the entire posts, but need to disagree. My 12 y/o had symptoms starting at 18 months. Age 5 had a major episode. Shortly after that learned of PANDAS. Few years later found out we were also dealing with lyme and bartonella. Not sure what actually came first. Anyway, if my daughter symptoms remained how they are today (and didn't get worse), I would be content. She is not 100% but sooo much better. We have done antibiotics and IVIGs. She used to flair with all illnesses, dental procedures, stress. These days her flairs are less intense and don't last as long. Except when she gets strep, and other major illness like flu...

[LNN]

I'd be really turned off by and skeptical of a doctor who robbed you of your hope based on his experience of treating one older child who didn't respond.

 

Like some of my other "old timer" friends who've posted, my son took a long time to get well. We did Pex and 1 IVIG that made him worse, not better. He was sick for a year before we found a Pandas doctor who started treatment. But even then, we didn't get to the root of his problem (lyme) until he'd been sick for 2.5 yrs. We then did lyme treatment for 2.5 yrs (plus integrative treatments for nutritional/methylation/yeast problems). He's now a different kid - in all sorts of good ways.

 

In 3rd grade, he took an assessment test and scored very low normal range (93). in 5th grade (6 months ago) he took the same test and scored very high normal range (110) - a nearly 20 point swing on a test that's supposed to measure aptitude. His brain got well and now he's gone from a C- student to a B+ student. He was sick for 5 yrs but has no permanent "brain damage". He's healing and growing into the kid I always knew was trapped inside. is he still at risk for a Pandas episode? I'm sure the answer is yes. I don't think I'll breathe again until he's into adulthood. But he's making great strides forward and I just can't believe that any kid is a lost cause or that a parent should be told to just "accept" the "as is".

 

If in your heart you feel your son is more than what the outside world sees, then keep fighting. You've hardly explored all options. Don't let someone rob you of hope - ever.

[rowingmom]

I second LLM's opinion, and also disagree with your doctor.

 

Because PANS is not caught early doesn't mean all hope is lost.

 

Our daughter's PANS symptoms started in 2008. We didn't find the cause (bartonella) until 2011. We didn't use steroids or IVIG because they were not available (or financially doable) for us. We did use 2 years of multiple/combination antibiotics, and also addressed nutrition (Terry Wahls autoimmune paleo) and methylation (MTHFR deletion) with supplementation.

 

DD has gone from being unable to function in a classroom, being unable to follow simple repeated instructions and raging with frustration because of it to a B+, A student, capable of doing her own work and comprehending new concepts (math, science etc.) within the classroom setting.

 

Her ADHD, Asperger's, Tourette's and sensory processing disorder symptoms have all resolved.

 

It is possible, we are doing it. DD is not 100% (she does have some residual herxing with changing herbal protocols, and her bartonella titers are still positive), but has been 95% for the last 6 months off abx.

[3bmom]

I agree with everyone. Our bodies are amazing and with removal of layers of infections, given a chance it will go towards healing. You didn't mention valcyclovir/ valtrex. Has Herpes Viruses 1,2 and 6 been checked? That was a big piece of the puzzle for us.

[Broo100]

I have to agree. While my son had a bug flare that was quickly diagnosed and treated successfully, looking back he had several tics, eye rolling, blinking, etc for years that I just attributed to transient childhood tics. All of them are gone now after the treatments for strep and myco and only flare occasionally. It tells me that his body has always had a pandas reaction dealing with stress and infection.

[airial95]

I'll offer my story as a counter point. After doing an extensive family history, both of our PANDAS docs have told us that I most definitely had PANDAS growing up. Looking back, the pieces are all there - the chronic strep (6+ x per year until we figured out my sister was a carrier), things my parents thought were "quirky" at the time but were obviously OCD, even the frequent urination (resulting in some awkward and uncomfortable kidney tests when I was in Junior High). I even had a stubborn case of strep in 6th grade that required hospitalization and IV abx because they were worried about RF.

 

I was never treated for PANDAS - obviously - because it didn't "exist" at that time. Sometime in college, I outgrew the chronic strep, and what I would now consider an PANDAS-type reaction to being sick.

 

The one thing that has remained, as an adult, I was dx clinically with OCD. I (and our PANDAS docs) now thing that is a carry over from untreated PANDAS. Is it debilitating? No. I am a fully functional human being that unless you have seen my clean my house would not suspect I was OCD at all.

 

Do I think if I had been treated for PANDAS aggressively as a child I may not be OCD today? Maybe, maybe not. I always contributed my cleaning tendencies to being lazy as a kid while my mom kept an absolutely spotless house all around us, and when I moved out I hated living in filth as a result, realizing that our dorms/apartments were never going to get cleaned unless I did it. Even now that I know about the PANDAS, I still think that's what set off my cleaning OCD.

 

On a side note, I don't think that there has been any documented research on permanent brain damage associated with PANDAS. As a matter of fact, I think that most of the experts agree that actual brain damage is not the critical concern. Our docs have all told us, however, that the OCD and even some tics, may become "permanent" if untreated almost as "learned" behaviors. (Which is why in conjunction with the medical side, we also have done therapy with great success at breaking some of those OCD "habits" in our kids.)

[smartyjones]

hi said that the brain damage is allreday to big to be fixed;it's permanent, and that there is nothing else to help..

 

please, if you are not familiar with it, look up the concept of the neuroplasticity of the brain. I do believe it is the overriding theory of the function of the brain, in today's world.

and I think there is only more to come in the future -- NIH is likely getting ready to spend lots of $$ on the BRAIN initiative (hopefully) and I think they will only find more to support this concept.

 

there are a couple of good books not related to pandas, but about the brain -- one is the Evolve Your Brain, that discusses this. The other is a little different, called My Stroke of Insight -- a neurologist who had a stroke and although she did have some permanent changes to her brain, how she embraced them and found them very valuable even though different from her previous functioning.

 

furthermore, I believe there is simply not enough research, studies following cases, etc done on pandas to make such a statement.

 

our personal story -- ds was diagnosed early but persisted with with symptoms after initial 100% remission on abx. I say he was sick from ages 4.5 to about 7 or 7.5. so, fairly 'early' treatment but still a number of years that his brain was under attack. he is very healthy now without ivig, pex nor long term abx. we have treated with an integrative MD using homeopathic remedies.

[croatianmum]

wow..

 

I'm so glad You and Yourr children are feeling better now.

 

It's just that my son had his first strep when he was 1,5 yo; and than the other strep at the age of 6 resolved with pandas ( I belive it's PANS).He had his worse time at the age of 8, but at the time he was treated for Tourettes.

finally, when he was 11, he got the dx for pandas and got his first IVIG.

 

it took us almost 5 years to come to the right way.

 

My son's ocd is very mild, (he is also cleaning his room every evening but - honestly I don't mind this at all - don't find this disturbing in any way )

 

His problem are his tics; and this one very loud squeeking tic is the worst.

 

So, after beeing on abx for 16 month (the last 4 month on Hd abx); after no help with steroids (made him a LOT worse); after having 2 IVIGs with little or no sucsess; I'm beginning to think - if it's too late for him? this doc story is something I was affraid of.

 

I know our bodies are different, and everybody reacts differently, but I'm just so sad because nothing seems to work for him.

 

Offcourse, I will not give up, I will not stop fighting; and I will try to do anything..it's just that I don't have so much fate like I used to have.

 

I don't expect him to be cured 100%; but, if only this tics would get a little bit better so he can walk arround whiteout this scream it would be great.

 

well, i's a long journey still in front of us..thank You for help and for beeing supportive, it makes things easier when You have someone to talk to

[MomWithOCDSon]

It is probably stating the obvious to say, "The younger, the better." Still, based on our own experience, I am far from convinced that older children are more difficult to "cure" because of any kind of permanent "brain damage" or anything of that ilk.

 

My son likely suffered from the age of 3. He was diagnosed with "regular OCD" and treated with therapy and SSRIs beginning at ages 6 and 7, respectively, and we didn't successfully acquire a PANDAS diagnosis or treatment until he was 12 and had his worst exacerbation ever. Augmentin XR brought him back from the brink, and over time, helped give him back his life. We didn't rely solely upon the medical intervention, however; he worked hard with ERP, and we continue to support his functionality with therapy, supplements and a low-dose SSRI.

 

Similar to Kimballout, I feel certain my son will contend with some residual issues for some time to come, if not permanently. But I don't feel that's a result of "brain damage." Rather, it's a result of the neural pathways he built for contending with his anxiety and OCD all those years to the extent that some of his behavior has become almost habitual. He designed rituals to help himself cope for all that time prior to our finding PANDAS, and shaking them after 6+ years is really tough. Some of it is like breathing for him . . . they've become a part of who he is.

 

But that is a far cry from where he'd fallen at 12, when he became so ill he was entirely dysfunctional. He couldn't sleep, couldn't eat, couldn't walk, couldn't talk, couldn't shower, couldn't learn, couldn't play . . . couldn't do anything. Institutionalization was next on the options list, had we listened to the conventional doctors we'd been relying upon for the previous 6 years. But we couldn't do it . . . thank God!

 

And then, thanks to "Saving Sammy," we found PANDAS and abx. Within a few months, he was back in school. And now, 4 years later, he is happy, healthy, excelling in school, sleeping wonderfully, hanging out with friends, looking into colleges, etc. He's not 100% OCD-free, and I'm not convinced he ever will be. But he will be able to live in the world, to interact successfully with it, to live independently. And he still might eventually beat even the more stubborn, hanger-on OCD, too, as he matures emotionally and mentally and finds more reasons and rewards for summoning the resolve and courage to chuck the last of those behaviors in favor of the better things in life.

 

In the words of Winston Churchill, "Never, never, never give up."

[rowingmom]

So, after beeing on abx for 16 month (the last 4 month on Hd abx); after no help with steroids (made him a LOT worse); after having 2 IVIGs with little or no sucsess; I'm beginning to think - if it's too late for him? this doc story is something I was affraid of.

 

Which infections was your doctor treating with 16 months of abx? Which abx did he use?

 

Sorry, I'm not able to remember everyone's treatment protocols like I know some here can .