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When I was waiting for acceptance letters into graduate school (18 years ago), I drove myself nuts checking the mailbox, internet, and voicemail....checking the phone..was it still working...something must be wrong, I should have heard by now?

 

Waiting for doctor's appointments that are weeks away can be torture. Waiting for test results or doctor's replies can be torture. Waiting to see how your kid is going to respond to treatment is torture. Waiting for anything important has always been very challenging for me, personally. I'll only speak for myself, but this issue is my mini-version of OCD. This is my child's health, happiness and well-being, I know it is crucially important, but I have to admit; I'm having difficulty getting it out of my head! And I work with school-aged special education children-I'm seeing it all over the place! I'm smart and mature enough to get through work (although that is where I'm typing from right now, shhh) and run my household, ect., but I am clearly preoccupied by this disease and getting my kid the right help. Thank God strep et. al does not throw me into complete dysfunction!

 

I have put myself on a behavior plan and maybe you can to. A great book (NOT about PANDAS) can be a wonderful distraction. Perhaps others can suggest a real page-turner they have read lately? Limiting your "research" time and, yes, time on the forum will help break the cycle, make you happier and help "wait" time go by more quickly. Pick a project around the house you've been meaning to get done, say organizing photo albums, clothing or your "junk/storage" room. Whenever you notice yourself drifting toward the internet, research; redirect yourself to your "go to" project. Limit the number of times you are going to let yourself talk to your spouse, family or friends about PANDAS per day and stick to it.

 

I don't want to offend anyone, but I suspect many of us have a little of our own mild OCD tendencies we've utilized on our children's behalf to not take no for an answer and persist on getting them well; but the flip side of this trait we must actively manage and not let life pass us by while we were busy waiting.

 

We want all the kiddos to get well and healthy. We want peace and some normalcy in our families' lives. Does anyone else have suggestions, strategies, ect. they have utilized to obtain some balance and keep all of this in check?

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Oh, I am not in any denial...I definitely have OCD tendencies:)

 

With my kids, I don't really have time to read. My book collection is Dora, Transformers, etc.

 

I do have a copy of "Ominvore's Dilemma" sitting in the living room that I go to if they are quiet. Not a suspenseful page turner, but interesting.

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JAG10- I am totally with you. I find, that when my kids get better, I am oh so better. We are in the midst of pandas right now (with the second child afflicted with this disorder). I can say that a decent book is my only escape....need something to occupy the mind.

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Great Post! I too am typing from work...suspect we are not alone...

 

When I'm at home, I try to compartmentalize my time on the forum, especially for after the kids are in bed. But they do see my on the PC far too often. PANDAS of course fills a lot of my thinking time - shower, drives to work etc. But when it gets out of balance, I force myself to turn the PC off. And I let the kids tell me when it's too much. They especially like it when I screw up and they get to hand out the punishment. In our house, we lose privileges for bad behaviors. So if I use a bad word or break a house rule, they can make me lose computer privileges the same way they lose TV time. It kills me and delights them!

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My husband and I just had this conversation this weekend!! Only he was making the point that my recent obsession has taken a toll on our time together. I'm pretty good about keeping the focus on the kids - but once they're in bed all bets are off! If you could see how I've transformed Buster's charting technique into a full blown interactive tracking spreadsheet you'd be amazed. (It't the geeky engineer in me - what can I say!)

 

Fortunately, my husband doesn't complain too much - he knows that I'm insane when it comes to the kids and that telling me to "relax" and not to worry so much about it would be like asking a fish to stop swimming.

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When I was waiting for acceptance letters into graduate school (18 years ago), I drove myself nuts checking the mailbox, internet, and voicemail....checking the phone..was it still working...something must be wrong, I should have heard by now?

 

Waiting for doctor's appointments that are weeks away can be torture. Waiting for test results or doctor's replies can be torture. Waiting to see how your kid is going to respond to treatment is torture. Waiting for anything important has always been very challenging for me, personally. I'll only speak for myself, but this issue is my mini-version of OCD. This is my child's health, happiness and well-being, I know it is crucially important, but I have to admit; I'm having difficulty getting it out of my head! And I work with school-aged special education children-I'm seeing it all over the place! I'm smart and mature enough to get through work (although that is where I'm typing from right now, shhh) and run my household, ect., but I am clearly preoccupied by this disease and getting my kid the right help. Thank God strep et. al does not throw me into complete dysfunction!

 

I have put myself on a behavior plan and maybe you can to. A great book (NOT about PANDAS) can be a wonderful distraction. Perhaps others can suggest a real page-turner they have read lately? Limiting your "research" time and, yes, time on the forum will help break the cycle, make you happier and help "wait" time go by more quickly. Pick a project around the house you've been meaning to get done, say organizing photo albums, clothing or your "junk/storage" room. Whenever you notice yourself drifting toward the internet, research; redirect yourself to your "go to" project. Limit the number of times you are going to let yourself talk to your spouse, family or friends about PANDAS per day and stick to it.

 

I don't want to offend anyone, but I suspect many of us have a little of our own mild OCD tendencies we've utilized on our children's behalf to not take no for an answer and persist on getting them well; but the flip side of this trait we must actively manage and not let life pass us by while we were busy waiting.

 

We want all the kiddos to get well and healthy. We want peace and some normalcy in our families' lives. Does anyone else have suggestions, strategies, ect. they have utilized to obtain some balance and keep all of this in check?

 

In recent weeks, I've come to the conclusion that I have to limit my search/research time which is why I check the updates to the board quickly once or twice per day but don't spend all day on it. It is, at best, an oppressive disease. We have been homebound with immovable separation anx for almost 3 months. There are very few moments of mental escape as the evidence of a crashing kid, crashing career and crashing finances are everywhere. Three weeks ago, I resolved to make no move from a place of fear. My days are spent exploring options only when they truly resonate in my gut and head. I busy myself around the house and spend copious amounts of time daily in meditation and prayer. I use inspirational books, cds, websites, etc. I remind myself that he has recovered from this before with far less knowledge than we currently have. In an effort to contain the costs of spring planting (which brings me so much joy), my older daughter and I planted seeds into homemade seed trays last week. (total cost, practically zero) Since it's still cold outside they have been left to sprout in my bedroom by a window. I look at them daily to remind myself that despite my inability to see progress, progress is taking place. Sure enough, yesterday the first green bean, morning glory and black eyed susan plants became visible, proving that point. That said, there are moments (sometimes hours) in almost every day when I cannot imagine how we'll overcome this, when the reality of it is simply smothering. I am but human and when this happens, I do my level best to know the moment will pass and direct myself to a book, cd or website until I can direct my own thoughts in a more healthy way.

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JAG10- I agree 100%. My problem is I believe the old saying 'knowledge is power'. The more knowledge I have on this disorder, the more I feel comfortable and in CONTROL. I know that it is a sign of OCD, being in control, but it's how I deal daily and reading the forum make me feel that I'm not alone.

 

Unfortunately I have no doctors in my city that I can run to with questions. My family has no idea what the disorder is about. I haven't really shared with outside friends, because frankly it's too much to explain. And my husband is on board, but has not desire to research or read like I do... so it's me and the internet.

 

When I finally find peace and get some normalcy in my life... my 2nd child starts presenting symptoms.

 

We're all in the same boat. <_< I could never do this without you all!

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ShannonOtown-

 

Are we living the same life?

 

I also need knowledge to feel a bit of control. And control is really hard to feel with pandas. I don't think that is ocd for me- more of the typical oldest child syndrome.

 

I am lucky enough to live near Dr L, and try to see her frequently. But, frankly, this is a disorder where I think the parent needs to know as much as the doc.

 

My family is VERY supportive, but knows nothing about pandas, ocd, autoimmunity, etc- so no help in that sense. (although my dad did just give us the $26k to get dd pex- which was awesome) My husband is totally on board, but does no research, (chides me a bit for being always on the forum), doesn't read any books I give him, and is happy just to go along that way. I also haven't confided much in friends, because not long before this happened we moved to a new city (where I knew no one, and didn't have the chance to make any really good friends) and it is a hard thing to talk about on the phone, to someone you only speak to every few weeks.

 

AND, just when I was starting to breathe easier that dd, Julia, was going to be okay- her older sister had an acute onset of pandas!

 

I am sorry you have a second child with symptoms. In some way, that was so much harder for me than the first. Maybe because I knew right away what it entails. Maybe because I was already tired.

 

Anyway, it is good to know I am not alone (even though I wouldn't wish these troubles on anyone)....

 

 

 

 

 

JAG10- I agree 100%. My problem is I believe the old saying 'knowledge is power'. The more knowledge I have on this disorder, the more I feel comfortable and in CONTROL. I know that it is a sign of OCD, being in control, but it's how I deal daily and reading the forum make me feel that I'm not alone.

 

Unfortunately I have no doctors in my city that I can run to with questions. My family has no idea what the disorder is about. I haven't really shared with outside friends, because frankly it's too much to explain. And my husband is on board, but has not desire to research or read like I do... so it's me and the internet.

 

When I finally find peace and get some normalcy in my life... my 2nd child starts presenting symptoms.

 

We're all in the same boat. <_< I could never do this without you all!

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Mine is pretty healthy now, and I am still here! I can't give any advice, as when I was in the midst of things, I barely slept for the researching. Of course, I didn't have this forum at the time, to speed up the process. If I had known then.... I agree with the feeling of loss of control. I've found much relief in helping others - so that is something to add to the list. Helping another parent, even in a small way, fund raising - all those kinds of things give me a little bit of my control back. I also think a lot about the Serenity Prayer, and try to consider my efforts/research in terms of that. But really, I must admit that when the worst comes into your life, struggling to understand it seems like the only rational thing to do. I love to read, but for about a year, I could not read anything unrelated to autoimmune illnesses. I just couldn't concentrate. I think I knew my daughter was really doing well when I finally read a great mystery again.

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I'm definitely guilty of "PANDAS obsession." On the flip side, though, without that constant research quest (and this forum) - and if we'd followed the local medical advice - my son would be in an institution now and living in virtual Hades emotionally. Sigh....

 

I know we all need to cut ourselves slack and relax sometimes. But - if our healthcare system wasn't so dysfunctional - we would all have a local doctor doing this research, networking, phone consults with out-of-state experts, etc., on our child's behalf. But docs can't charge for research time... and we haven't found any professional "healthcare advocates" who will do the legwork so we don't have to.

 

If I lived next door to Dr. K, Dr. T, or Dr. L, I think I'd be a much mellower person!

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So many great ideas! What an amazing group of folks!

 

One of the aspects of PANDAS that is exhausting is. ironically, its hopefulness. I mean, if our children became totally debilitated and we knew that was the way it would always be, we may be devastated, grieve the child we thought they were to become, but eventually grow to accept. Some of you may be familiar with the Welcome to Holland poem. But with PANDAS, you intermittently get to see that child you thought they would become, the static clears and you see them and then lightening comes and brings back the static. So, we remain on the exhausting mission of hope that we can finally be rid of the static.

 

"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

 

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

 

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

 

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

 

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

 

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

 

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

 

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

 

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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Jag10-

 

That is a beautiful essay, but I just have to say this:

 

 

ALL OF OUR KIDS ARE GOING TO ITALY!! We will get them there! We may have a layover in Holland, it may be longer than we like, but we will not stop until our kids are basking in the Mediterranean sun!

 

 

 

(Just had to say it, sorry....)

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dalle tue labbra alle orecchie di Dio

 

From your lips to God's ears! (in Italian, of course :blink: )

 

I just meant the jetlag between the two is exhausting. We cannot grieve and then accept because that is not the journey intended for our kids. Each of us... we are so brave, committed and tenacious.

 

 

 

 

Jag10-

 

That is a beautiful essay, but I just have to say this:

 

 

ALL OF OUR KIDS ARE GOING TO ITALY!! We will get them there! We may have a layover in Holland, it may be longer than we like, but we will not stop until our kids are basking in the Mediterranean sun!

 

 

 

(Just had to say it, sorry....)

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Jag10-

 

That is a beautiful essay, but I just have to say this:

 

 

ALL OF OUR KIDS ARE GOING TO ITALY!! We will get them there! We may have a layover in Holland, it may be longer than we like, but we will not stop until our kids are basking in the Mediterranean sun!

 

 

 

(Just had to say it, sorry....)

 

Beautifully said, dcmom!

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OMG! You took the words right out of my mouth. Our 1st appt with Dr K is March 31st!!! I am a newbie. My son is 8 and was diagnosed with PDD-NOS when he was 5. Three weeks ago our lives took a 180!!! Could this be what my kid has? So now all I do si look at these posts ask questions, research and go absolutely insane obsessing about it all. I feel your pain. Lets try to stay calm. Yea right!

 

 

 

When I was waiting for acceptance letters into graduate school (18 years ago), I drove myself nuts checking the mailbox, internet, and voicemail....checking the phone..was it still working...something must be wrong, I should have heard by now?

 

Waiting for doctor's appointments that are weeks away can be torture. Waiting for test results or doctor's replies can be torture. Waiting to see how your kid is going to respond to treatment is torture. Waiting for anything important has always been very challenging for me, personally. I'll only speak for myself, but this issue is my mini-version of OCD. This is my child's health, happiness and well-being, I know it is crucially important, but I have to admit; I'm having difficulty getting it out of my head! And I work with school-aged special education children-I'm seeing it all over the place! I'm smart and mature enough to get through work (although that is where I'm typing from right now, shhh) and run my household, ect., but I am clearly preoccupied by this disease and getting my kid the right help. Thank God strep et. al does not throw me into complete dysfunction!

 

I have put myself on a behavior plan and maybe you can to. A great book (NOT about PANDAS) can be a wonderful distraction. Perhaps others can suggest a real page-turner they have read lately? Limiting your "research" time and, yes, time on the forum will help break the cycle, make you happier and help "wait" time go by more quickly. Pick a project around the house you've been meaning to get done, say organizing photo albums, clothing or your "junk/storage" room. Whenever you notice yourself drifting toward the internet, research; redirect yourself to your "go to" project. Limit the number of times you are going to let yourself talk to your spouse, family or friends about PANDAS per day and stick to it.

 

I don't want to offend anyone, but I suspect many of us have a little of our own mild OCD tendencies we've utilized on our children's behalf to not take no for an answer and persist on getting them well; but the flip side of this trait we must actively manage and not let life pass us by while we were busy waiting.

 

We want all the kiddos to get well and healthy. We want peace and some normalcy in our families' lives. Does anyone else have suggestions, strategies, ect. they have utilized to obtain some balance and keep all of this in check?

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