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Posted on: Fri, 01/13/2006 - 7:25am
TNAmom's picture
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Joined: 11/29/2005 - 09:00

Hi Julie.
I apologize. That may not have been a terribly helpful comment. I just meant whatever seems to set her off, try to minimize. Take all possible stress away from her.
But of course it is her own brain setting things off, not external things, and God knows there is no rhyme or reason to it. Her brain is on a rapid skip pattern right now. She seems to be plagued with the "bad thoughts" form of OCD. I have not personally had to deal with that one with in my child. She's more of the contamination phobia, health-obsessed (and allergy obsessed) type.
I feel for you entirely however, because I know how horrific it is to see a beautiful fun-loving little girl change into a terrified ghost. It is an awful, awful experience.
Lots of hugs, lots of reassurance, and as little pressure as possible. She may have to be pulled from school for a while until she is stronger. Difficult, I know, if you work outside the home.
What is the course of action? Have you been lined up with a therapist yet? Any talk of SSRI medications to accompany the antibiotics?
--Lori

Posted on: Fri, 01/13/2006 - 8:12am
Gail W's picture
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Joined: 12/06/2001 - 09:00

TNAmom, I'm amazed that you zeroed in on this so quickly. I had never heard of PANDAS, and learned a lot. Thank you.
julieneaman, I just wanted to say that I hope things improve for your daughter. This sounds terrifying, I can't imagine. You are a strong mother for dealing with this so lovingly.

Posted on: Fri, 01/13/2006 - 9:17am
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[url="http://www.emedicine.com/emerg/topic518.htm"]http://www.emedicine.com/emerg/topic518.htm[/url]
General Disclaimer: I am not offering advice in any manner or form. I do not guarantee the accuracy, currentness, or content of the link in this post.

Posted on: Sat, 01/14/2006 - 1:28am
julieneaman's picture
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Joined: 01/11/2004 - 09:00

Thanks for all the info everyone. TNAmom, Please don't apologize. You've really been so helpful. I really appreciate it!
Well, she's had 3 doses of anitbiotic. She slept last night. I'm feeling a little optimistic b/c she was able to eat this am and even practiced her viola for about 5 minutes. She is still having thoughts, but it doesn't seem quite so bad today. Her thoughts are all self-doubt re being disrespectful, lying, cheating, sinning.
Her treatment plan is to see how much the antibiotics help before beginning therapy or other drugs. Her dr. and I are really hoping for the best here. If the ocd persists, I will certainly consider any and all therapies.
TNAMom, I'm sorry you are dealing w/ this, too. It sounds like you really have a good handle on how to manage, though.
MommaBear, thanks for the link. I caught it last night. There are some pretty scary therapies being suggested, but like I said I'd consider anything that might help if need be.
Thanks so much again for listening and the help. You guys are great!
BTW, I didn't realize I posted this in schools. I meant to post it in Off Topic. If anyone knows how to move it, feel free.
Julie

Posted on: Sat, 01/14/2006 - 2:24am
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Quote:Originally posted by julieneaman:
[b]
MommaBear, thanks for the link. I caught it last night. There are some pretty scary therapies being suggested, but like I said I'd consider anything that might help if need be.
[/b]
your welcome. My family is just garden variety OCD. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] It's just part of who my family is. I mean, [i]I have my way of doing things.[/i] And I tend to perseverate.
My husband, on the other hand.....just does. and does. and does. and does. We compliment each other. In some odd way I have yet to discover. We have a rule in our house. Ask a question more than five times (while receiving an answer each time) or you will either be ignored, or..... you better not depend on the answer your getting. Or the folk around you might just break out in song. Each time, even. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
My cubs? We have lots of collections, and it's no clique, there's a lot of stuff [i]lined up in our house[/i]. Although it is sort of stereotypical, and not really true to who we are, except I can really relate to the "double coaster" thing, I just love the "Monk" show.
No advice, we're a bunch of goofs. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
but which link were you talking about? the second link/reference was on "Scarlet Fever".
------------------
"The only other people we know are Greeks, 'cause Greeks marry Greeks to breed more Greeks, to be loud breeding Greek eaters."

Posted on: Sat, 01/14/2006 - 3:14am
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I developed OCD after a strep infection in college. I have to check, check and check things again....I refuse to take drugs and have done well with behavior modification therapy.
My niece was diagnosed last year (also at age 8) with OCD. She sees a pediatric psychologist and is on medication. She did exactly the same kinds of things your daughter was doing. It was extremely upsetting for our fmaily as it does tend to come out of the blue. I sympathize with what you are going through.
She has been on the meds and going to therapy for about a year. Sometimes she will have little breaks where her symptoms become really bad again. In those instances, her medication will usually have to be adjusted. Most of the time she is just fine now.
OCD is a chemical imbalance in the brain and has been found to run in families with a history of alcoholism.
Take care and I wish you and your duaghter the best.
Jaime

Posted on: Sat, 01/14/2006 - 4:11am
MommaBear's picture
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Joined: 09/23/2002 - 09:00

Quote:Originally posted by AJSMAMA:
[b]OCD is a chemical imbalance in the brain and has been found to run in families with a history of alcoholism.
[/b]
warning: rant on.
not meant as offense, but personal bias: but I just loathe statements like this. I've found OCD to encompass a [i]spectrum[/i] of descriptions. Anywhooooooooo, trying to think if there is any history of alcoholism in our family. Nope, but there is of "Autism".
However, that said, the few drinks my hubby and I share (pre-pregnancy) usually happen over a conversation discussing the effects and physiological properties of alcohol. Can't help it. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] I do tend to overthink the pathway that sip takes as it enters the digestive system. (or so I've been told). [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
Do I deny that some people with OCD are "alcoholics"? No. I don't even know if you are talking about a causative relationship between the two. I mean, alcoholism causing OCD, or OCD predisposing one to alcoholism. Moot point to me. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
"Chemical Imbalance"? Wouldn't know. I've never taken any medications related to one. I've been told I have *excellent* coping skills. That I'm perseverant. That I'm like-able (I've even had complete strangers hug me for something or another I've said or done----had to fight the urge to possibly wipe kissy spit from my cheek and wash my hands---long enough to enjoy the moment [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]---but hey, isn't that just life? Or maybe it's just me.
Oddly enough, (or not) my oldest child who has "Autism" and is very similiar to his hubby and myself wrt to "OCD" was recently re-evaluated by the school district. I was told he has *excellent* coping skills as well and "better than most highschoolers".
My youngest? Well, he's only 6, (on the "Autism" spectrum---was in "Early Childhood" for nearly 3 years-- but nope, he's managing just fine. [i]and no meds besides occassional seasonal induced asthma or allergies[/i].
Letter I recently received in response to a post "Early Childhood" checkup. [img]http://uumor.pair.com/nutalle2/peanutallergy/cool.gif[/img] :
[i]"Dear Mrs. XXXXXXXX,
I wanted to let you know that I have taken the time to observe (my cub's name) during class as well as social times. He is truly doing a great job and we are proud of him. During my classroom groups, he is chosen by friends to be partners and many of the children say very nice things about him when we play compliment giving games.
(My cub's name) does a very nice job during centers in the classroom and during the lunch hour. It is true that at times he does prefer to be alone, but he does not deny his peers at school in anyway. He is accepting of when they want to play and he joins group activities. Overall, it seems that he is doing a great job at school.
I hope this information helps you. Please let me know if you have any questions. I think (my cub's name) would benefit and enjoy Park District programs, as well as some play dates if these are options. He is truly a great kid!"[/i]
Lord, I know. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
I rarely explain myself (sick of it by my age), but I just read some things sometime that strike a deeply buried chord within me and I can't help but say [i]something[/i]. (OCD?---just joking) Hope you understand.
I mean, sometimes, and not offering advice, I completely understand why some parents might hide their child's medical conditions or otherwise from people. Although I'm absolutely not condoning it, I just [i]understand[/i]. I mean, I've seen "normal" and I can't say I'd trade places. but no advice, just me. KWIM?
Go Figure.
He's never taken prescription meds or "OTC" meds besides those for his Asthma, Allergies, and the occassional antibiotic. [i]It's never been mentioned by his Pediatrician either.[/i]
Anywhoooooooooo sorta like the statement about
[i]"it is very hard to see a beautiful, sensitive, bright, articulate girl be reduced to this non-functioning shell."[/i]
I'm not a non-functioning shell. I've always been who I am. I've been told I'm "bright, articulate,"........and [i]beautiful[/i]. [img]http://uumor.pair.com/nutalle2/peanutallergy/tongue.gif[/img] [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
Do I understand these "conditions" and my feelings or personal experience with them might not be shared by everyone and that situations on the spectrum may vary? [i]Of course.[/i] I just *need* to mention other situations. KWIM?
"Autism" runs in my family as well.
I'm still considering whether I want to expose my family to a study that investigates a genetic link. I mean, I ask myself: [i]why[/i]? This is territory one carefully treads. At least from my perspective. I mean, [i]it takes all kinds[/i]. I mean, *I* don't see the "Autism" in my family as a [i]flaw[/i]. I don't see our OCD (comorbid thing) as a [i]flaw[/i] either.
Rant off. but OnT as far as I'm concerned.
General Disclaimer: I am not offering advice in any manner or form. ABSOLUTELY NOT. Just describing what works *for me* and my highly personal, individual and possibly unique situation. Can't speak for others. Individual Mileage May Vary. And not even sure I'd take up that letter on the playdates *or* the Park District. But who knows.
edited to move my disclaimer to the [i]bottom[/i].
[This message has been edited by MommaBear (edited January 14, 2006).]

Posted on: Sat, 01/14/2006 - 5:39am
julieneaman's picture
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Joined: 01/11/2004 - 09:00

DD does seem to be doing a little better this afternoon. She watched a movie and was able to get through most of it and she played a little bit. I know it doesn't sound like much, but believe me just seeing her do some of her regular things is giving me much hope!
Thanks again for all responses. I didn't read about the link w/ alcoholism, but it doesn't apply to us anyway. I was reading about it being an autoimmune response in some way which makes me think . . .She had an especially bad bout w/ lyme disease a few years ago and it took years for symptoms to abate. We found the bulls eye and treated immediately, but she still had these bad symptoms lingering. Related? Maybe. At this point, it doesn't help me or her to get better.
MommaBear, I think I hear where you're coming from. If the OCD in your family isn't causing anyone pain, why treat? If that's what you're saying, I can't agree more.
Julie

Posted on: Sat, 01/14/2006 - 6:08am
TNAmom's picture
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Joined: 11/29/2005 - 09:00

Julie,
I am delighted to hear that today has been a good day for your daughter.
Perhaps for some people, OCD - or what they believe is OCD - is not so terribly disruptive. But for our two girls, it is obvious that the illness has been a devastating event.
Rocking my daughter in my arms while she sobs with hunger because she is starving herself again (the food is poisoned), or hugging her tight and trying to convince her that she is all right as she screams in fear, having just noticed that the veins in her wrist are blue and that means cancer... this is trouble. Serious, devastating, terrifying trouble. It cannot be lived with, it cannot be incorporated into our lives, it cannot be permitted to continue.
There is no beauty, no joy, and no laughter in life for a family driven to this extreme by OCD. And there are no hugs for a child who won't let anyone near her due to fear of germs, not even those who love her most.
My daughter takes Zoloft, and I think it just might have saved her life. It certainly saved her sanity, and mine. When we attempt to wean her off the drug this summer, hopefully the cognitive-behavioral therapy will have given her the coping mechanisms she will need to handle flare-ups with her OCD.
My best to you and your lovely child, Julie. One day at a time.

Posted on: Sat, 01/14/2006 - 8:45am
MommaBear's picture
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Joined: 09/23/2002 - 09:00

Quote:Originally posted by TNAmom:
[b]
Perhaps for some people, OCD - or what they believe is OCD - is not so terribly disruptive. But for our two girls, it is obvious that the illness has been a devastating event.
[/b]
I understand that, but please don't challenge my situation. I have compassion for yours.
"Disruptive". Does OCD have to be perceived as disruptive to be "OCD"? By who? Is that like saying "Autism" isn't autism (or fill in the blank) unless it's perceived as "disruptive"?
Honestly? The most disruptive moments have been when persons have tried to fit my children into a mold they weren't cut out for. I'm not making any judgements as to how others choose to handle the plate they have in front of them. Just asking that people [i]don't assume that I or others involved are either obviously mistaken...[/i] or not doing it *right* just because I don't something or other. Or perceive something a certain way.
I mean, someone the other day kept telling me the back scratching my cub enjoys so much was "therapeutic brushing". I'm like, maybe it is to you, but to me, I'm just scratching my cubs back. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] I mean, fingers were around a lot longer than brushes, yes? But for some reason, they were very invested in calling it "therapeutic brushing". I just called it back scratching. Maternally it felt *right*, and obviously my cub was ok with it, or he wouldn't request it.
Interestingly enough, this person started questioning whether or not my cub fell on the "Autism" spectrum or not. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] I mean, because I didn't consider the "back scratching" something out of the ordinary? I mean, [i]therapeutic/a therapy[/i].
Speaking of things I loathe.....I was listening to the radio station the other day about a fundraiser for Autism. Among a litany of "abnormal" behaviors they described "lining things up". LOL! Guess my whole family should be committed. (sarcasm intended). All I can say is it's a good thing our basement is 2500 square feet. [img]http://uumor.pair.com/nutalle2/peanutallergy/cool.gif[/img] Personally, I've never considered it "abnormal" just something some people in my family enjoy doing. I'm telling ya, it sure came in handy when my husband built a brick retaining wall. Around three fourths of our entire house. In less than two days. (twinge of sarcasm, but hey...) Maybe I'm waaaaaaaaaaaaaaay off.
General Disclaimer: I am not offering advice in any manner or form. Just describing my own personal, highly individual, and possibly unique situation. IMMV.

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