Jump to content
ACN Latitudes Forums

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


Recommended Posts

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.

 

Thanks norcla....the thought of doing nothing scares me too

 

ds does get pain from his tic quite often..and occasional bruising.....i think it makes it hard for him to read...and he already doesn't like reading..(math guy)..

on a side note..he used to have to use a colored overlay to track ...the difference in fluency with andw/o is amzaing....(white paper causes a glare)

they are pretty intense...constant and the vocals...though he has a couple of friends going into 5th...what will happen...the coolness factor is getting more intense w/o being a freak...i love him and it's hard to be around....and what if it gets worse....its pretty bad now on the tic scale i would say he's a solid 7 going 6-8...(9-10 being incmpatiated or worse vocals.)...

 

what if i get ivig and it makes it worse....i almost can't make it through today...let alone tomorrow or the rest of this week...

making it to our appointmen with Doc L and B...are all i've got and keeping me together right now..

 

I am not really aruguing the point of trying all i can...but ds is tiring of this....

i am trying to say, all the conditions listed on this ACN board...are pitands,pandas varients...not seperate....just different expressions of an autoimmune trigger condition....

 

another problem/concern...is like Kay is experiencing....older onset.(so to speak)..we already know these kids are suseptible....(makes me think of people who have"ts" not..onset later in life30s 40s and noone fiugures it out...but that would better than your youth and young adulthood when i think life can be harder..

 

i agree with you...i'm trying to clarify...if swedo.docs k,b,t,l and who ever think this will resolve why are we not getting the counseling as parents to make us relax...

because all ocd and ts and pandas are the same...and they don't know who will get better, who will fully recover...Sammy would have endup in a mental institute...who has ever been let out of there because they out grew mental illness????

 

I realize I AM MAD...that its taken this long....This long for anyone to listen to me personally..and this long to get the medical community to take it as a possiblity,,,,,

especially when i put the 2 together 7 years ago...and my son is now in this state and didn't need to be!!!!!!!!!

Link to comment
Share on other sites

I think if everyone would completely remit past puberty, we wouldn't have such a big "mental health" industry. I think remission after puberty depends on a lot of things. What that equation is, I don't know. But we all pray our kids fit it. I do wonder if girls have a better chance at remission after puberty than boys (if left untreated).

 

Why do we treat? Well, if you have seen your child suffer like most of us (including you) have, that question would never be asked. Of course, you should treat. It's not an option. For those of you who have had multiple exacerbations, you see how they can worsen and how symptoms can vary. Just because your child may "only have tics" now doesn't mean that will always be the case. God knows how many suicides may be the result of this disorder. This disorder and the results of it can really spiral into bad, dark places. Act now to avoid that in the future at all costs. We don't mention it on here but I cannot be the only one that thinks that.

 

I can see how your son can just be tired of this. Of course he is. Our kids are the strongest people I know. They have fought more and are stronger than most adults who have lived full lives. Just tell him how so many of us are in awe of his strength and how you have confidence he can overcome this. You will overcome it too!

 

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!!

Edited by Vickie
Link to comment
Share on other sites

If it helps any - my son yells at me too. He tells me I don't know what I'm doing - I'm stupid, an idiot, and that he doens't want IVIG or blood tests, they don't help and I'm a fool to think they will. When I hear that sometimes I think he is right! But I NEVER think I will cave to that kind of thinking. I'm going to fight this thing, and if he is too tired or weak to fight it, I'm going to help him (or make him - kicking and screaming). 11 year olds that have pandas are not capable of making decisions for themselves. They are capable of complaining and whining and nagging you until you tell them they don't have to take their antibiotic.

 

Alot of kids have it far worse. Parents too. He doesn't have terminal cancer. He can walk and play and have friends. He goes to a normal school. He doesn't have to do hours of OT per day, or take any medicine beyond an antibiotic. Things could be worse. I've read alot of posts on this forum. There is always worse. It broke my heart to read LaurenJohnsonsMom recent post saying that Lauren has an older brother, that they had to send away to live with grandparents (many miles away) in order to keep the smaller children (and no doubt themselves) safe from his rages. They want him to get evaluated for pandas and get IVIG (he didn't go into remission)- but he is 18 now, an adult that makes his own decisions. He doesn't want to go. This was under a thread about rages and how to control them.

 

At 11 my son occassionally has "tantrums" (when I swallow food in front of him it plays over and over in his head and makes him very mad at me) he hasn't gotten physical (yet). But he has slammed things around, called me names and thrown things. He is almost my size - what will happen when he is 6'2" like his cousin (age 13), and I can't restrain him? When the hormones kick in on top of the pandas?

 

I have read about "turning back the pages" but I haven't read that anyone regrets the decision to do IVIG long term. There are several threads on the subject.

Link to comment
Share on other sites

THank you Vickie and Norcal...and all

 

i need to hear it from those who understand the dynamics, the picture, the possibilities

my hubby is supportive but wonders..and when ds argues about taking his stuff....

 

i think you guys can hear my anguish

true there are worse........and i am extremely concerned of what's coming..

there have been times ds could not walk because of his tics and we have carried him..we asked him if he wanted a wheel chair of course he said no...

then it got relatively better...and now here we are...take me back to relatively better!!!

 

i'm tired

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...