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Q_is_my_world

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  1. Q_is_my_world

    First week with a child who likely has PANDAS

    Finally got all the bloodwork back and Doc is 100% sure that it's PANDAS. Bittersweet because it is AWFUL that my pefect little child has to put up with this bullshit when it's already hard enough growing up in this world, BUT nice to know what it is so we can go about eradicating it from her life with the help of her doctor. She's shown slight improvement just over the last few weeks. Not sure if she's just coping better with being under attack by her thoughts, or if the antibodies are leaving and relinquishing their grip on her brain. I'll post some blood numbers for those who are interested. Her meds now are: Amox Azith Acyclovir Ibuprofen Marine Algae Probiotics Essential Oils She's seven and takes more effing pills than an 80 year old. PANDAS=BULLSHIT. Still, have a nice day and I sincerely wish all of you strength and progress with your struggles.
  2. Oh my God, what a nightmare. I have no advice or help to offer, but I just feel so sorry that you parents and those poor children have to go through this. I don't know how you cope and remain functional. I just wish you the absolute best and pray that your children recover.
  3. Q_is_my_world

    First week with a child who likely has PANDAS

    Met with our pediatric neuro today. We liked her a lot and thinks it is likely PANDAS. She decided to keep our girl on daily Amox indefinitely and the azithromycin every other day. We are already doing immunity boosters, probiotics and ibuprofen which she told us to continue. She's ordering a huge amount of blood tests and we volunteered to go ahead with the Cunningham panel. She is still way OCD. She is able to keep a lot of her comments in when in public, but when she's home it comes out like a fire hose. Ex-wife and I are shocked by the contents of her thoughts. Anything from germs, to peoples' appearances to sex. Things we have no idea where she would have heard. Remember, she's 7?!? Weird.
  4. Q_is_my_world

    First week with a child who likely has PANDAS

    Day 14 of her augmentin. Day 2 of ibuprofen and she's been on the immunity booster and a couple other supplements for a few days. No improvement. No major worsening though, for which we are grateful. I am so grateful that this board is here and so grateful for the internet in general. When I started looking for an answer to why my perfect little angel daughter was going crazy in front of me, I searched "Sudden OCD". PANDAS came right up. Again, I'm not sure that is what we're dealing with (there is a slight chance there are some thyroid issues), but with this occuring during the same timeframe as the strep infection it is really looking that way. Imagine what parents would have to have gone through without the internet. So I wanted to thank all of you for your posts and support. We meet with the PANDAS neuro on Thursday. I'll update at that time.
  5. Thanks very much Nurse! Yeah our Peds leaves a little to be desired. We convinced her to keep our girl on Amox. til at least our meeting with the neurologist. By that time she will have been on Abx for 3 weeks. You are very accurate about her obsession and her compulsion. What a horrible thing for her to have to endure ): She is slowly getting worse, but not drastically. She's starting to be a little aggressive. What really freaked us out was a mention of killing herself. She's only 7, can't imagine where she even heard that ?!?
  6. We are now in week 2 of DD's OCD which began suddenly, likely due to PANDAS. She is 7 and obsessing over words. Particularly; dumb, stupid, fricken, damn. They attack her thoughts all day and night. She is constantly confessing that she's thinking these words. We have appointments with a PANDAS expert and a therapist but not until next week. We've also started her on some natural supplements. Last night I bought and started to read to her a highly recommended book on OCD for children. I wanted to die dropping her off at school today to go and fend for herself. Her teacher said she hasn't been a disruption (yet), but she cries about the words that continue to "attack" her when she gets home. Does anyone have a child with this version of OCD? I keep hearing OCD is all fear based. I can't make that connection with her behavior. Do you think this is OCD? What can we do to make her experience less traumatic ?!? Please help.
  7. Q_is_my_world

    First week with a child who likely has PANDAS

    Thank you all so much. I'm sure you remember when the symptoms first showed up in your children...confusion, sadness, despair. That's where we're at. And we're desperate. I'm kind of hoping it is PANDAS because at least we'd have a target to shoot at. Our pediatrician talked to our Pediatric Neurologist (Dr. Melanie Alarcio) who specializes in PANDAS and got her to agree to move our appointment up 2 weeks. We will be seeing her now on March 12th. Last night was a lot more about wanting to say, "crap, doodoo, stupid, dumb", etc.). Almost manic. Poor girl. I purchased the book referenced above at B&N and today we'll pick up some Animal Parade Kids Immune Booster chewables (turmeric) and Buddy Bear Digest chewables (n-acetyl). We had bloodwork done and Strep swab done last night at the hospital. Strep was negative and the only level of concern was that her thyroid numbers were outside of the lines. When we meet with the PANDAS doc on the 12th she'll want to do bw so we can follow up then. Please keep suggestions coming and know that we really appreciate your support. Your experiences and that you share them are invaluable to two scared parents and one scared kid.
  8. Q_is_my_world

    New Parents: Advice From the Trenches

    I AM a new parent to this. Your advice is really valued and well received. Thank you.
  9. 7 y/o daughter had strep about two weeks ago. She had it for a few days before we caught it and got her some antibiotics. Then about a week later we noticed her reporting back to us every now and then these insignificant stories of something that she touched, or the way she walked. 7y/o girls are a strange lifeform anyway so we didn't pay much attention. But, she has been getting progressively worse. And here's where my question comes in. She doesn't have any tics. Or any rituals per se, but she is suddenly a different person and I would say she is fighting this compulsion to report strange things. We kept a log last night for a couple hours so docs (and you) could look at it. Could this be PANDAS? Is this behavior (below) indicative of OCD? Really looking for support. We live in Phoenix and have an appointment with Dr. Melanie Alarcio in 3 weeks, but in the meantime we're freaking out. We are considering pulling her from school and getting home instruction until we get a handle on it. We don't want her to disturb the class, and moreso don't want her to get picked on or feel alienated. 5:29: "momma since I was (something about her finger) I was doing something like this (shows me wiping hands on thighs) 5:31: in rapid succession... "I keep rubbing my thumb and finger together I don't know why" "I keep rubbing my forehead I don't know why" "Is it okay if I put my feet in the table bc I was doing that" "I keep rubbing my nose I don't know why" 5:32: "Momma I keep doing this (runs I and shows me her snapping/rubbing her fingers together) Immediately, "I keep rubbing my legs" "I keep rubb "I keep thinking this is my middle finger when it's not" (shows me other finger) "I keep rubbing my eyebrows like this" 5:37: continued with momma I did this relation to wiping things on hand etc. 5:38: momma when I'm done with the tissues do I set them on the table and hen bring them over Momma I keep itching the bottom of my nose 5:41: momma I had a crust on my ??? And something about the floor Momma I did this... (Showed me a tissue and how she folded it and rubbed her hand down it) and rubbed it like this 5:44: I have crust on my hand from my booger so I put it in the garbage 5:48: ALL AT DINNER IN TWO MINUTES gravy keeps getting on my fingers, something about touching the iPad, I keep kicking wherever I get gravy on my fingers, I accidentally dropped gravy, a tiny piece of gravy is in the table can I have a napkin, I keep doig this and itching my ear, I keep itching my ear and rubbing it on the napkin and rubbing my ears, right now I was itching my lip and keep putting it in my mouth, I keep biting right here 5:57: I got a crumb on my foot somehow, I just licked my wrist, now I got sauce in my elbow and middle finger, 5:59: I just wiped my mouth bc milk was on it, I keep licking this (watermelon), I keep itching all around I'm so itchy 6:01: momma a seed was off of the (shows strawberry) and I ate it 6:04: something about messy and wiping it, for some reason I keep doing this (wiping nose), I keep doing this (moving tongue side to side). 6:09: I'm scraping all over me I keep doing this and this (wiping nose with napkin), I keep doing this (shows me fingers again, rubbing them kinda like snapping), 6:10 I accidentally had strawberry juice on my hand and I actually did that (shows me wiping her hand on Ollie's shirt) because I don't know why 6:13 I keep scratching under here, back of neck under hair, I have a seed right here (shows me strawberry sees on thumb) 6:17 I got gravy on my hand right here, I licked the end (of the spoon) bc of the gravy, I keep getting gravy all over, a I just did this , touched that (shows me touching her shirt) 6:22 Ollie's shoe just touched me like that (shows me on the bottom) 6:25 I kinda had a crumb here so I went like that, momma I keep doing this (wiping nose) 6:30: doing things with blanket, almost wiped boogers out of nose, keep doing this (wiping nose), I keep doing this (touching shirt), I'm so itchy, 6:37: I'm putting my feet on the table, is it okay if I put my feet on the table? Momma I did this (wiping shirt on mouth) almost got boogers and I keep doing this and this, moving shirt around 6:41 momma I keep doing this (showed me her feet) I keep tipping this badly of cars with my toe 6:45 I keep stepping on this dinosaur, I had a crumb in my mouth and I just ate it or it fell on the floor and I was doing this (scratching the sides of the mouth/face) 6:49 I was doing this (showing me her fork on the edge of the plate) and it may have touched the table, when I was doing this (holding plate) I got syrup on my fingers 6:50 momma I need milk and when I was waking back I was waking back like this, Momma I just kicked the balloon like that 7:02 I just stepped in water and I'm wiping my toe on the floor, I'm wiping my hands like this, 7:13 ever since mrs minor said keep the word "stupid" in the box it keeps popping into my head and I want to let it out 7:19 I think a little spit may have gotten in the book 7:24 for some reason the word dum dum is in my head and I can't get it out, every time I say a sentence in my head it ends in dumb dumb and I don't know why For some reason at school I wanted to cry. (I asked why) and she said bc she felt bad that I'd didn't know who called (she tried to call daddy from school to wish a happy bday but called me on accident and hung up) When I said thank ou you it ended In Dumb dimb I don't know why that word is in my head Those words are taking over my body I don't feel good
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