The Irony of PANDAS

[Priscilla]

My daughter's OCD has given me OCD about PANDAS I have "meltdowns" anticipating a "meltdown" My "natural foods" kitchen contains a pharmacy In trying to get her back to "normal", I have become "abnormal" I call the "doctor" to tell them what treatment "I" want to try next

 

This is a nasty bugger of an illness, that will drag us all down. I am just focusing on the day when I can laugh about how scared I was to yawn! (One of my daughters triggers...) At least we are in this together, take a deep breath, and try to see the sliver of humor, just might help us keep our sanity for our children. Best wishes to all of you

[forjpj]

So true!! I look forward to laughter and peace (even for a few minutes)!!

[caring mom]

I too am guilty of everything you wrote. I'm glad that you at least have a sense of humor about it all...I've completely lost mine (along with my mind!!). Take care!

[matis_mom]

Talk about irony! My son's main symptom is contamination fears/excessive handwashing... Now in order to avoid getting strep (yet again!) I am driving everyone crazy making sure they wash their hands, don't share cups, etc.

My son's OCD has given me OCD and paranoia!!!

 

I think faith in God is the one thing that is helping me keep my sanity

 

Isabel

[cobbiemommy]

OMG, this is so me. Let me guess, not only do you tell the doc what treatment you want, but you cite the research studies that show its effectiveness? And you can use all the big words that the doctors use and know what they mean?? The cups and toothbrushes! I wish everyone would chime in with their changes they made to their life to keep PANDAS away. This is very therapeutic and entertaining to read.

 

I had to go see a psych myself, because I was having so much anxiety about my dear son's next meltdown. I am still not impressed with them! I joke that I caught my OCD from my son.

[nevergiveup]

I completely agree, now that my dd has found good care and great doctors, I thought I could let go and relax. Its been such a part of my life for so long, I still do not know how to give up the fight. I wonder if I will ever be the same again. I think not. I do try to let go as much as possible to be a good mom and find time to enjoy my truly brave and inspiring daughter. But in my spare time, I am still searching for answers and giving advise to others here on the forum.

[matis_mom]

I wish everyone would chime in with their changes they made to their life to keep PANDAS away.

I used to think kids would get over just about anything on their own, I was pretty laid back about things. Well, now I'm running to the doctor any time anyone complains of anything... Sigh...

My best friend is very well versed on just about anything related to health... now she is calling ME for advice!

And I totally got over the sticker shock with all the visits, meds, supplements, etc.

I've warned everyone in our circle to not come near us if they suspect strep. More than one get-together has had to be cancelled.

BUT, I have discovered I have awesome friends! They do get their kids checked out if they have a sore throat. If they suspect anything, or hear it's going around town, they let me know. Just the other day I was going to babysit for a friend and she declined because her kids were a bit out-of-sorts and they had been with someone who had strep a few days prior, so she chose to play it safe.

We are very, very blessed to have good friends, an understanding family, and awesome health insurance

[purple66p]

Wow! Too many to count. Here's a partial list:

OCD: Never let the microwave timer go off!

Separation anxiety: Since he sleeps on a mattress on our bedroom floor, let's just say we visit the spare bedroom a lot.

Anxiety: Stairs are good exercise!

Tics: Corner table at restaurants keep from disturbing others.

Scheduling: OT, Speech, Psychologist

Sensory: Always have a plastic fork handy.

School$$$: Started private school last year because public was just beating him up too badly. (This one really bums me out because we're having to cut back on how much we help our 2 kids in college. They'll pay for this with massive loan debt after they graduate.)

I could go on forever...

[PhillyPA]

Two sons with PANDAS. I have to laugh when I don't cry. My younger son would spit out all of his food in the sink. My older son would quickly rush to clean it up.

[sptcmom]

I used to be a huge yeller, yelled at all things I wanted to get done and generally loud- grew up with 5 brothers and huge extended family all in one house. Had to shout to get heard or get a word in edgewise!

Now,can't yell at all, DS gets panic attacks, thinks I'm going to put him up for adoption on Craig's list like daddy sold the old annoying lawnmower! LOL. So have learned to calm down, speak softer and just slow down overall. Any anxiety triggers DS and I can't forgove myself if I cause him to trigger. One day we will give them a good life back and join each other for PANDAS survivor moms cruise!

[dcmom]

Well at least we know we are not alone:

 

my poor dd had (still has minor) ocd about germs and sick people

but- if she gets sick she could have another episode (which I don't really tell her)

so- we work on not worrying if kids around her get sick, and encourage her to touch public door knobs, handrails etc

and I try to hide my constant sanitizing of our house, and constant fear of her being exposed to illness

 

I am now extremely neurotic about them getting a full night's sleep, and not overdoing our schedule

so much so that if we are out- once 7pm rolls around I get really agitated and want to get them home

 

I worry about what they eat- we try to eat mostly organic

I worry about the chloramine in our water

 

if the girls so much as look at me the wrong way, I worry that pandas is coming back

 

even my dh has started secretly diagnosing those around him (coworker's kids, etc) with pandas

 

Sigh.

[philamom]

I can't wait to have a colada on that cruise!

 

my dd has a fear of watching sneezes in movies & tv shows. Sometimes we hire a babysitter to go see a kids movie, just to tell her there's no sneeze in it. And we still have to bribe her to go see it!

 

I also can't cry, NEVER EVER! She will bang her head against the wall or try to run away. Can't even cut onions...she still thinks it's her fault.

 

Now, with the Lyme...I think every freckle is a tick. Constantly checking.

 

I think I'll switch that colada to a rum and coke!

[Priscilla]

you are all so wonderful, thank you for the replies, it is good to share a lighter side. I was afraid of offending anyone with humor, but I think it is necessary. Oh, and I will surely be on that cruise, margarita in hand

[thereishope]

I'm with you with the tick fear, philamom. I had to google an image of a tick, then I counted the legs and realized there were 8 like a spider. So, I had to ask my husband that grew up in WI if I would know the difference between a spider and a tick if I saw one. He assured me I would. I am searching for an Avon seller in the area to buy the bug stuff Lyme Mom recommended. And I know we have a deer living across the street in the yard of a foreclosed house.Oh, man, I never did good with bugs and now this...

Edited August 11, 2010 by Vickie

[KaraM]

Yes, I find it ironic that my daughters OCD focuses on her fear of getting sick...it's kind of justified, isn't it?