Has anyone's child 'outgrown' PANDAS yet?

[peglem]

But, doesn't Sammy still have problems when he gets ill? I thought that he would go back on the abx when he felt symptoms coming back.

 

I guess I look at the whole mental illness thing differently. It seems to me that mental illness is erroneously believed to be a diagnosis, when all it really is is a label given to a collection of symptoms. Like if somebody has a stroke- the stroke is the actual problem, or diagnosis- not the neurological manifestations of the stroke. I see my daughter's "autism" the same way- its not really a dx, just the name that has been given to her collection of symptoms. Its very frustrating to me when doctors do not try to find the source of symptomology, and just accept the symptoms themselves as the "diagnosis". When Allie's pediatrician talked with Dr. Cunningham and Dr. Latimer and looked at the research- it suddenly dawned on him that my daughter probably doesn't have autism- its been PANDAS all along. I corrected him- she does have autism, but autism is just her symptoms. PANDAS is most likely the cause. Also, if you look at page 11 of the Mouse Model paper- the researcher explains that the PANDAS mice exhibited behaviors that were autistic-like. Now, if PANDAS treatment is successful for my daughter, she will still be developmentally delayed because the actual developmental process was perverted by the PANDAS. But, I do see a chance for her to make strides in development, once the cause is dealt with. Does that make sense?

 

And I think its appropriate to link to this Turkish paper on 4 adults with untreated pediatric onset and a bunch of psychiatric "diagnosis" (what's the plural of that?), who had some measure of recovery with plasmapheresis:

 

http://www.turkpsikiyatri.com/en/default.a...icle&id=592

[Buster]

I have been so hesitant to respond to this post because it asks the question I worry deeply about... whether it all comes back...

 

Talk about my fear...

 

I truly think that PANDAS is going to be a watershed moment in the study of psychiatric diseases and change the entire discussion of the pathogenesis of OCD and tics.

 

Buster

[sf_mom]

I pray, I hope, I pray, I hope, I pray, I hope for my son's......... I cry for all the children have been misdiagnosed.

 

I too believe the same but I can't help but worry until this is a distant memory.

 

-Wendy

 

 

 

I have been so hesitant to respond to this post because it asks the question I worry deeply about... whether it all comes back...

 

Talk about my fear...

 

I truly think that PANDAS is going to be a watershed moment in the study of psychiatric diseases and change the entire discussion of the pathogenesis of OCD and tics.

 

Buster

[peglem]

I have been so hesitant to respond to this post because it asks the question I worry deeply about... whether it all comes back...

 

Talk about my fear...

 

I truly think that PANDAS is going to be a watershed moment in the study of psychiatric diseases and change the entire discussion of the pathogenesis of OCD and tics.

 

Buster

 

I hope you can take some measure of comfort in the fact that if it does come back you do know what to do about it now.

 

And, I think you're right about PANDAS & psychiatric disorders...I think it will open the door for research into causation. In fact, they've got Susan Swedo looking into autism now- teasing out subgroups and looking for commonalities w/in those groups. Personally, I think she'll find a group that has PANDAS, and I think she already suspects some kids with autism have PANDAS.

[dabel]

Peglem - I like how you look at things. Your whole explanation of the set of symptoms etc really makes sense. I am sorry that your child is having such a hard time. It is so difficult.

 

I thought I had finally found the answer for my son when he was finally diagnosed recently. PANDAS explains everything with him after MANY years of searching. I also thought that we could finally take care of this and give him back his childhood that has been ripped away from him by this thing called PANDAS. I know it is not the intention of other parents here to scare us newer guys but once you start reading and thinking about all of the info hear it is scary. Is there a cure? Will my child ever be okay? Is there a monster lurking within? Will it disappear for good? I still think that this is the proper diagnosis for my son but it is not as simple and straight forward as I thought it was a couple of weeks ago. I agree that this wave is going to change the world of psychiatric illness as we know it. Thank God! It is time that they start looking at the why and quite just throwing canned diagnosis out and multiple drugs w/o investigating the possible biological cause. Sorry to ramble but I am terrified!!!

[EAMom]

The turkish paper were all adult men with PANDAS. They had pediatric onset which was never properly treated as children.

 

Bronxmom2 think her PANDAS finally went into remission with pregnancy.

[thereishope]

I think it is our children who will help "determine" if people outgrow PANDAS. Some of these kids are begin diagnosed very early in the onset of this disorder and the families learn how to help keep it in check or treat it early. We are the hope for the future.

 

There are people who have OCD as children and outgrow it (as docs put it). Did these children have undiagosed PANDAS? Maybe. But their OCD is gone now w/o ever going to therapy or being on drugs.

 

There are parents on this forum who now suspect they had PANDAS as a child. And I use the word HAD. Yesterday, I had the lightbulb moment as I repsonded to a post about tonsils. I had tonsilitis a lot as a child. After awhile I didn't get swabbed for strep. But they put me on antibiotics for the tonsilitis (even though it is viral). I also had some childhood OCD and other problems. I wonder if my cousin's BDD may be a result of PANDAS since I have learned his sister was a strep carrier throughout childhood. Autoimmune disorders are rampant in my family.Once I start putting the pieces together, I wonder. Could I have had it? But, now I am ok.

 

Sorry for my rant. I need to believe it will get better. If it doesn't completely go away, it will hopefully not be as bad when they are adults. Right now, I will continue to believe it will be a memory for us. But do so, with doubt, worry, and wonder lingering on the side.

[matis_mom]

SO I have spent most of my stolen moments this afternoon looking at childhood schizophrenia. On schizophrenia.com there is a lot of good info. They also mention all the different illnesses that should be ruled out before you get to a schizophrenia diagnosis and they actually mention PANDAS on there.

 

But for some of us who have super extreme cases, I am wondering if it is possible that we could get a PANDAS diagnosis when there might be something else/in addition to the PANDAS diagnosis. Things are so incredibly bad over here that I am just wondering if there is even more to this than "only" PANDAS. I have no idea if it is schizophrenia or if there is actually anything else. Maybe we just have one of the most extreme cases...

I guess there is no simple answers for any of our kids, we all seem to have more than one "front" in this war. But, I would recommend you read the book "Gut and Psychology" (or is it "Gut and Psychology Syndrome"?) I can't remember the name of the author, but if you google it or look for it on Amazon you'll find it. It has a yellow cover with a road sign pointing in all directions, what a metaphor! The reason I recommend it is because it mentions schizophrenia, and how gut problems play into it. I think reading it will give you great hope, as the premise of the book is that if you fix the gut so it can send the right "food" to the brain, the brain will start working just fine. If we look at all these symptoms as signs of chemical imbalances, the answer is to fix the "chemical factory" i.e, the gut, so that instead of sending toxins it starts sending the right stuff to the brain. It is a lot more encouraging than having someone put your child in a little box and trying different psychotropic drugs. Don't give up!

What we are finding with our son is that is not just a matter of treating the strep, there is so much more that needs to be "fixed"! It is daunting and discouraging to see there is a long road ahead, but we'll have to be patient. There is a history of mental illness in my family (my aunt is schizophrenic, mom is bi-polar/manic-depressive and is doing great on lithium), so I am determined to see that my son does not get to that point. I know there are some hereditary factors you can't do anything about, but I'll do all I can to make sure he is as healthy as he can be to face whatever genes he's been dealt

 

Praying that things settle down for you, and that you find the right docs for your child.

 

Isabel

[dcmom]

Isabel- Can you elaborate a little more on the gut issues....

[faith]

Just to make you all laugh (or maybe not ), I have spoken to Dr. Trifilletti on the phone and he said he thinks that the person that "The Exorcist" was based on probably had PANDAS as a child. ... and he was serious. I don't really recall that story, but I think it was a book first and he was saying that alot of the symptoms can be very crazy and he really thinks it looks like it could have been PANDAS. of course they probably embellished it for the movie, but I know I've heard one parent post here that they would be "open to an exorcism"....

 

I think he also was treating someone who is around 19 now and is for the most part is doing well. I'm guessing she may have been part of the original study, don't know for sure, but the time frame fits.

 

Faith

[EAMom]

I will now look at demonic possession in a whole new light!

[Megs_Mom]

I will now look at demonic possession in a whole new light!

 

Early on, my husband was trying to explain the dramatic difference in our child in a matter of weeks, and he said "it's like she is possessed, I don't mean that in a serious way, I just don't know how else to describe it". I was really cranky with him at the time, but it was the best word to explain the different child we found ourselves with. I am just grateful that her 3.5 year old episode resolved, or we would likely also have been labeled with autism. How else do you explain a child that will no longer interact with any other kids, and just sits paralyzed in place by fear. Really makes me concerned for so much of the spectrum.

[EAMom]

Yup...and it makes me concerned about all the kids that are diagnosed as "bipolar"....how many of those are undiagnosed PANDAS?

[thereishope]

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Edited October 18, 2016 by vickie

[matis_mom]

Isabel- Can you elaborate a little more on the gut issues....

Hard to elaborate on scientific terms, but I will try to paint a basic picture in layman's terms...

 

Your gut process the food, breaks it down, and it gets absorbed through the intestinal walls and into your bloodstream, to be taken to the rest of the body so that each cell can do it's proper job. If your gut is unhealthy, the rest of your body will either not get the proper building blocks for whatever they need to do (lack of the right raw material), or they will get the wrong thing altogether (namely, toxins). If you are giving your brain the "wrong" food, it will work "wrong". There are so many aspects of why and how this happens, it is a bit mind-boggling. But these are some of the things that play a role: leaky gut, diet, allergies, intestinal flora, heavy metals, etc, etc. This all gets compounded by the fact that the gut also houses 80% of your immune system, so if it's not working properly, you are open to a host of other problems, and are simply not able to deal with things the way a healthy person would.

 

I need to borrow that book back from my friend and maybe I can post something a bit more helpful! The doctor that wrote the book has an autistic son who pretty much was cured by addressing the gut issues. She also mentions other "diseases" like ADD, ADHD, and schizophrenia. I don't remember if she mentiones PANDAS at all, as I read this book a while back and we did not have any issues back then (or at least I did not know we did!)

 

Anyway, I would recomend both "Gut and Psychology" and "The Ultramind Solution" as both deal with brain problems as a symptom of something else being out of balance. They both see mental issues as something that can be healed, rather than the old-school thought of saying "You just HAVE such-and-such, you'll always have it, and here are some pills that might help you deal with it, but they may or may not work, and here is the list of side effects."

 

I myself am caught between

a) following our current doctor, who is taking a holistic approach and looking at EVERYTHING,

OR

just treating the neuro-psychiatric symptoms NOW and dealing with the rest later

 

I can see improvement so far in my son as far as energy and overall health go, but his anxiety is still high, we've had a few flare-ups later, and it seems with each flare up another obsession is added to the list! So, we are seeing Dr. Latimer tomorrow and we'll take it from there.

 

This is so hard!

 

Isabel