Partially asking..why are we treating Pandas and Mad!

[Fixit]

This is going to be long..and when I say pandas, I mean pitands too!!!

 

This is prompted by a recent conversation with someone very well versed in Pandas..and some recent posts…and if you are reading this…no harm intended….it just doesn’t make sense

Talking about difference between ts and pandas and lack of difference

So I asked do you really think there is a difference..response was yes..

Then was told that pandas is “pediatric” and recovery is expected after purberty…14-16 regardless of what you do in between!!!!!

WHAT???...if that is the case why are we spinning in circles..running, filling our kids with abx, herbs, steroids, ivig….

If that were the case and I was 90% certain DS would recover…would I be persuing ivig.pex????

 

Now lets go to ds…tics..dh…tics…on that alone dx would be TS

I’m say no…someone out there has to see what im’ seeing…illness..tics ..remit….So ds camk above normal..not super high, but not normal….do another camk even higher..i correlated strep to tics and remission with abx 7 years ago(doctors rolling their eyes all the while!!!!)… ….(I would like to test dh camk…but I begin to wonder if camk drops as you get older) just as in now I can’t find a a particular infection(maybe gut issue)just his sytem is in a hyper state and needs brakes

Dh still still gets strep…his brother has psorisi/arthritis..their mom lupus…dh only ticcer in the family and now my son…so if my son didn’t come along…would dh be more likely example of pandas not corrected…..Pandas/pitands run in families

 

I know someone(friend of a friend) with “ts”(not)…as child,,remembers one combo tic..a jump while giving the bird…as he gets older it completely all ts goes away….great…goes to college…becomes dentist…decides to open his own practice……remembers being pretty ill around that time…stressed…..starts uncontrollabley saying f word in middle of sentences..dx ts…he’s ok with taking drug..as it is only 1/10 of what an adult would take and completely takes care of that for him…so ok…but….he is only one in his family with this…but does that matter…(he said why don’t you just put him on X….he’s surprised when I want to find root cause….he assumes what works for him will work for all I guess….I WISH)..

 

Next story..PBS special a cpuple of years ago…ts people…not..

Young man in 22ish moderate tics…..turns out his dad “HAD” tics as a kid for a couple of years…but the went away…so now son is only one in family with tcs….all of the people on the program had overnight onset….another girl only one in family with pretty severe tics and another kid overnight onset

THat family of 7 with ts…they are the only ones with this weird gene(a histamine gene) out of 700 other ts patients….??not great evidenc e other than a histamine problem in that family

That gene maybe the cause of their condition as it has to do with histamines and we know allergies can trigger pandas…or it could mean they have pandas,which present as tics and this weird gene that doesn’t have squat to do with anything..or pandas and an allergy problem

And isn’t it true they are both on the same onset and betterment schedule///8-15 years old (in general with some outside that range….)

Isn’t it true no one knows if either will get worse or how much better ???

And just like a whole family can have psorysis, or arthritis..coudln’t a whole family present an auto immune condition like pandas too!!!!!

 

THE PROBLEM is..this condition is triggere by more things than i can think of, than with any other condition!!!!

so within one family..1 person gets triggerd by strep...another by myco p...another by parc...another by lupus..celiac..allergies..and then you can branch off from there

and God forbid you have 2 illnesses or a gut issue or an illness and celiacs!!

 

THE END!!

[saidie10]

This is going to be long..and when I say pandas, I mean pitands too!!!

 

This is prompted by a recent conversation with someone very well versed in Pandas..and some recent posts…and if you are reading this…no harm intended….it just doesn’t make sense

Talking about difference between ts and pandas and lack of difference

So I asked do you really think there is a difference..response was yes..

Then was told that pandas is “pediatric” and recovery is expected after purberty…14-16 regardless of what you do in between!!!!!

WHAT???...if that is the case why are we spinning in circles..running, filling our kids with abx, herbs, steroids, ivig….

If that were the case and I was 90% certain DS would recover…would I be persuing ivig.pex????

 

Now lets go to ds…tics..dh…tics…on that alone dx would be TS

I’m say no…someone out there has to see what im’ seeing…illness..tics ..remit….So ds camk above normal..not super high, but not normal….do another camk even higher..i correlated strep to tics and remission with abx 7 years ago(doctors rolling their eyes all the while!!!!)… ….(I would like to test dh camk…but I begin to wonder if camk drops as you get older) just as in now I can’t find a a particular infection(maybe gut issue)just his sytem is in a hyper state and needs brakes

Dh still still gets strep…his brother has psorisi/arthritis..their mom lupus…dh only ticcer in the family and now my son…so if my son didn’t come along…would dh be more likely example of pandas not corrected…..Pandas/pitands run in families

 

I know someone(friend of a friend) with “ts”(not)…as child,,remembers one combo tic..a jump while giving the bird…as he gets older it completely all ts goes away….great…goes to college…becomes dentist…decides to open his own practice……remembers being pretty ill around that time…stressed…..starts uncontrollabley saying f word in middle of sentences..dx ts…he’s ok with taking drug..as it is only 1/10 of what an adult would take and completely takes care of that for him…so ok…but….he is only one in his family with this…but does that matter…(he said why don’t you just put him on X….he’s surprised when I want to find root cause….he assumes what works for him will work for all I guess….I WISH)..

 

Next story..PBS special a cpuple of years ago…ts people…not..

Young man in 22ish moderate tics…..turns out his dad “HAD” tics as a kid for a couple of years…but the went away…so now son is only one in family with tcs….all of the people on the program had overnight onset….another girl only one in family with pretty severe tics and another kid overnight onset

THat family of 7 with ts…they are the only ones with this weird gene(a histamine gene) out of 700 other ts patients….??not great evidenc e other than a histamine problem in that family

That gene maybe the cause of their condition as it has to do with histamines and we know allergies can trigger pandas…or it could mean they have pandas,which present as tics and this weird gene that doesn’t have squat to do with anything..or pandas and an allergy problem

And isn’t it true they are both on the same onset and betterment schedule///8-15 years old (in general with some outside that range….)

Isn’t it true no one knows if either will get worse or how much better ???

And just like a whole family can have psorysis, or arthritis..coudln’t a whole family present an auto immune condition like pandas too!!!!!

 

THE PROBLEM is..this condition is triggere by more things than i can think of, than with any other condition!!!!

so within one family..1 person gets triggerd by strep...another by myco p...another by parc...another by lupus..celiac..allergies..and then you can branch off from there

and God forbid you have 2 illnesses or a gut issue or an illness and celiacs!!

 

THE END!!

 

you lost me girl, although it was very interesting reading!!!! LOL no really, I can see some of your points and understand the frustration!!!

[Megs_Mom]

So I'll respond to the "why are we treating" part of this post. For us, there are two very clear answers. One, our daughter (severe sudden onset OCD) was living a nightmare - I would not let her suffer for one week additional, nevermind 7 or 8 years. That would be a lost childhood. Two, I don't believe in an automatic remission at puberty. I think this may happen for some - but not for plenty of others. My guess is that many many women with postpartum depression or sudden onset OCD after childbirth are having a reaction to infection or inflamation that is untreated.

 

I completely understand your frustration - I often wonder why our child is not being seen as an "answer" for thousands more. Why do I feel like the solutions that worked for her are being ignored by so many doctors? What we have learned about mental illness seems so against everything I thought I knew before. Now, I warn my dh, if I ever go nutty, you better go to the ends of the early to find out what is wrong with me - don't accept "oh she is old" or "oh, she is under a lot of stress". Find the infection, find the parasite, find the disease - and get me treated!

[Fixit]

one of the things i'm asking is...what percentage of kids do they think will out grow this????

what about the percentage that dont???

i'm not sure if i got 90% as the correct number but pretty close...am i doing more damage in the mean time if he will heal on his own????????

what of tics being the last remainer and usually the hardest to get rid of going forward into adulthood and the brain closes up..

do these remaining symptoms get locked behind the adult brain's door?

whatever add/hd and most sensory stuff is gone..handwriting still crap..attitude great...(better than mine i think...actually i know)more flexible.but was never that rigid..

why does doc k say get thing done before they are 10 and definely before end of purberty?.............if these kids are going to recover...

i think...they don't know if they will recover then.....

and that what ties it to the (what some call)not pand/pits as it hasn't gone away but call it "ocd/ts"...because it does go into adulthood and they haven't figured out the locker combo yet...

 

I'll leave the it's all the same no matter your presentation or dx, alone for now...even though i touched on it in my last statement...

i'm looking for real answers...

there is no one to talk to but us....

unless someone can afford to talk to each of these docs for extended hours...get their real thoughts, not just the ones they need to say to keep their liscense>>>

 

and please forgive me if the tone ever comes out wrong...typing doesn't get the influctuation across....

i'm not really mad at the person who made the original statement...it just doesn't compute..and why am i , we doing this stuff to our kids, besides getting some relief...but going the big guns like pex, ivig.pherisis...if they think pandas is a seperate entity and 90% of the kids will have complete remsiion on their own....

 

that would have left the turkish men in their 20s..dx with ts with that dx....but realized there was prior infection and got remission with phersis.....

[Fixit]

THANK YOU

thank for some answers and thank you for the support and wonderful explanation of what i'm trying to say!!!!!

 

 

So I'll respond to the "why are we treating" part of this post. For us, there are two very clear answers. One, our daughter (severe sudden onset OCD) was living a nightmare - I would not let her suffer for one week additional, nevermind 7 or 8 years. That would be a lost childhood. Two, I don't believe in an automatic remission at puberty. I think this may happen for some - but not for plenty of others. My guess is that many many women with postpartum depression or sudden onset OCD after childbirth are having a reaction to infection or inflamation that is untreated.

I completely understand your frustration - I often wonder why our child is not being seen as an "answer" for thousands more. Why do I feel like the solutions that worked for her are being ignored by so many doctors? What we have learned about mental illness seems so against everything I thought I knew before. Now, I warn my dh, if I ever go nutty, you better go to the ends of the early to find out what is wrong with me - don't accept "oh she is old" or "oh, she is under a lot of stress". Find the infection, find the parasite, find the disease - and get me treated!

[Kay]

I hear everything you are saying. My daughter is 19 we are past puberty and we know Pandas started when she was very young to a degree (of course did not recognize any problem then, this is hindsight) Really went into full swing at age 17 after being exposed to confirmed case of strep.

 

I don't know what else to say. I hear everything you are saying, we are as frustrated as you.

[Fixit]

THank you.thank you for hearing me...

..i am sorry your daughter is going throught this..and then to have such presentation later....terrible...

i weep.....

 

I hear everything you are saying. My daughter is 19 we are past puberty and we know Pandas started when she was very young to a degree (of course did not recognize any problem then, this is hindsight) Really went into full swing at age 17 after being exposed to confirmed case of strep.

 

I don't know what else to say. I hear everything you are saying, we are as frustrated as you.

[Megs_Mom]

Horrible as this is, we are on the forefront of understand about PANDAS/PITAND and about mental health causes and cures in general. That is VERY frustrating when you are experiencing it in your home. Guessing at what the best treatment is, has not been a happy process for us either. I am learning by trial and error and by trying to keep an open mind as to what may be next. In the meantime, what you are really asking is "where is the research"?! Until the research is done, we will not have answers to the great questions you are asking. I am really delighted that so many parents are forming organizations and pressing for research and for education.

 

I wish I would win the lottery. I know what I'd do with it now. Research, research, research.

 

THANK YOU

thank for some answers and thank you for the support and wonderful explanation of what i'm trying to say!!!!!

 

 

So I'll respond to the "why are we treating" part of this post. For us, there are two very clear answers. One, our daughter (severe sudden onset OCD) was living a nightmare - I would not let her suffer for one week additional, nevermind 7 or 8 years. That would be a lost childhood. Two, I don't believe in an automatic remission at puberty. I think this may happen for some - but not for plenty of others. My guess is that many many women with postpartum depression or sudden onset OCD after childbirth are having a reaction to infection or inflamation that is untreated.

I completely understand your frustration - I often wonder why our child is not being seen as an "answer" for thousands more. Why do I feel like the solutions that worked for her are being ignored by so many doctors? What we have learned about mental illness seems so against everything I thought I knew before. Now, I warn my dh, if I ever go nutty, you better go to the ends of the early to find out what is wrong with me - don't accept "oh she is old" or "oh, she is under a lot of stress". Find the infection, find the parasite, find the disease - and get me treated!

[Fixit]

Can some panda/pitand parent come to my house and hold me..and tell me the answers....

i am having a bad day...it is torture to watch him.....i think he is soooo tired of it...

he's been asking to stop all the pills...he says mom...it's not working....he has said "nothing is going to work...can'twe just stop"

and yet i see him tiredof the tics.....

that's why i want pex....to see some relief and to have hope even if it eventually fails to want to keep fighting!!!

[justinekno]

Aren't we treating (i.e., IVIG) because this is an auto-immune disease and therefore it can trigger other diseases later in life, even if the initial PANDAS is in remission? My mom died at the age of 63 from an autoimmune disease (a big piece of it was that she didn't have insurance at the time and got ZERO decent healthcare but that's another story ). A dr recently asked me if I wanted to be tested to see if I would get this disease later in life. My quick response was no but then he said if I was positive, I could have IVIG and decrease my chances of getting it. It got me thinking of the power of IVIG and the reasons we do it, or at least consider it. It's kind of like playing god but hey, if I can save my child or myself, even later down the line, then I am all for it.

 

This is going to be long..and when I say pandas, I mean pitands too!!!

 

This is prompted by a recent conversation with someone very well versed in Pandas..and some recent posts…and if you are reading this…no harm intended….it just doesn’t make sense

Talking about difference between ts and pandas and lack of difference

So I asked do you really think there is a difference..response was yes..

Then was told that pandas is “pediatric” and recovery is expected after purberty…14-16 regardless of what you do in between!!!!!

WHAT???...if that is the case why are we spinning in circles..running, filling our kids with abx, herbs, steroids, ivig….

If that were the case and I was 90% certain DS would recover…would I be persuing ivig.pex????

[justinekno]

I love this comment!

 

Now, I warn my dh, if I ever go nutty, you better go to the ends of the early to find out what is wrong with me - don't accept "oh she is old" or "oh, she is under a lot of stress". Find the infection, find the parasite, find the disease - and get me treated!

[Fixit]

would you mind sharing what she had???

if not that's ok...

i wish i could get approval for ivig....i'm hoping boubiooluse can get me approval..

more important ..wether i get approved or not i want pex/pherisis....i'll do side jobs if i have too...

[norcalmom]

I've asked myself some of those same questions. Unfortunately there is no longitudinal study, or even a survey, to see what best treatment for pands long term

 

It comes down to a few things for us.

1) I want ds in the 90%(?) that out grow it a puberty. If antibiotics and IVIG increase those odds, I'm in.

2) DS is under incredible amounts of stres just trying to function like a normal person, perform in school, etc. What kind of harm might that stress do to him over time? What about his self esteem? What if he starts to self-medicate? What if it becomes too much and he becomes depressed or suicidal? Middle school is tough enough without pandas. Can you imagine with it?

3) For ds it isn't just tics. The tic that sent us to the doctor in the first place is the least of our worries now.

4) What if I take the "do nothing" approach and he ends up in the percentage that don't go into remission at puberty. How could I live with myself?

 

Of course, there is the risk that I do more harm witht he antibiotics and IVIG than without. I've used every possible bit of information I can get my hands to try to weight the risks and benefits. And, for our son, I beleive the risks of antibiotics and IVIG are worth taking. The risks of doing nothing, scare me more.

 

If it were just a tic, I don't think I would medicate unless the tic were interfering with his functioning or casusing pain, or emotional issues for him. It's all the other stuff - the tantrums, the nightmares, the inability to copy things from the board in school, his compulsion to look into the sun, his anxiety level...the list goes on.

[justinekno]

She had Scleroderma. She was between jobs when she got sick so she couldn't get insurance. I know there are people who have this disease and are doing ok so it doesn't have to be fatal, but it certainly can be, especially without the right treatment.

 

would you mind sharing what she had???

if not that's ok...

i wish i could get approval for ivig....i'm hoping boubiooluse can get me approval..

more important ..wether i get approved or not i want pex/pherisis....i'll do side jobs if i have too...

[Megs_Mom]

I have also told 2 of my friends that they need to get there butts down here if he listens to the doctors in this situation! No lie!!!

 

I love this comment!

 

Now, I warn my dh, if I ever go nutty, you better go to the ends of the early to find out what is wrong with me - don't accept "oh she is old" or "oh, she is under a lot of stress". Find the infection, find the parasite, find the disease - and get me treated!