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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBookOur helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 


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Drastic improvement after flagly


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12 replies to this topic

#1 tracyree

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Posted 22 June 2012 - 12:42 PM

I'm posting in hopes of helping someone else's kiddo out there.

DS has had pandas since 3. He had sudden onset compulsive urination that lasted 3 weeks. He endured many medical tests and was written off as having pollakiuria. I came across pandas online, demanded a strep culture and it came back positive. OCD stopped within 24 hours of starting antibiotics and no strep symptoms whatsoever.

Over the years we've had exacerbations resulting in a few tics and OCD behaviors. These things always cleared up with antibiotics and it was thought his pandas was "managed"

Thing is, DS was never the same are that first onset. He had no eye contact, was always irritable, lacked social awareness, lacked empathy, lacked self care skills... Lots of subtle things that added up to an Asperger's diagnosis at age 5.

I've always questioned that diagnosis and felt in my gut that his issues were biological in nature. I went with the Asperger's diagnosis as it's easier for the school to understand and it was given by very very reputable evaluators.

Last summer DS has his tonsils out and has been strep free since. All the behavioral issues persisted except for tics and OCD, I was coming to accept the Asperger's diagnosis and resigning myself to the fact that this is what he is. Irritable, explosive, distant, inappropriately silly at inappropriate times....

In May DS was treated with omnicef for ear infections. Following those antibiotics he had terrible diarrhea for a month. His DAN doctor put him on Flagyl for the diarrhea.

A week into Flagyl and he was a completely different child. TYPICAL!!! He's suddenly doing things he's NEVER done. Normal eye contact!!!! Pretend playing, mind blindness vanished, easy going, empathetic .... It's absolutely amazing.

I really can't express the change in him. Two months ago I received some bad news and wept openly in front of him for an hour. Not once did he notice. Didn't ask me what was wrong or acknowledge it in any way. Two days ago I stubbed my toe and said "ouch" under my breath. MY CHILD rushed to my side, asked me what happened and hugged me in sympathy, telling me he was sorry I had hurt myself. HOLY SWEAR WORD!!!

Coincidentally, DS was scheduled for a dyslexia screening this week. The examiner quickly ruled out dyslexia, saying he obviously reads way above grade level. She spent the rest of the day with him and said she doesn't see him having Asperger's. We wont get her final evaluation for a week, I can't wait to see what she says!

I know this may be fleeting, but he's been "with us" two weeks now. I'm enjoying every moment and know he may be gone again as soon as a virus invades his delicate system. It's very bittersweet seeing him this way for the first time. Our days used to be spent in frustration from waking until bed. It's been nothing but pure joy for the last two weeks.

DAN is putting him on vancomycin just to be sure and wipe out the rest of the assumed c diff.

I'll keep you posted. Hope this helps. Maybe rotating flagyl in with these kids that are on antibiotics so often could be the key for a lot of us??!!

Edited by TracyRee, 22 June 2012 - 12:51 PM.



#2 tpotter

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Posted 22 June 2012 - 06:53 PM

This is beautiful. Thank you for sharing.

#3 eamom

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Posted 22 June 2012 - 09:43 PM

wow

#4 EmilyK

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Posted 23 June 2012 - 02:32 AM

amazing :)

mom to ds1 age 8 PANDAS/PANS since 9/2010; a house of 4 with myco-p


#5 trggirl

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Posted 23 June 2012 - 05:46 AM

Thank you for sharing!

#6 kthomas

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Posted 23 June 2012 - 09:14 AM

Thank you for sharing. So happy for you and your family.
Thankful and appreciative of this forum and the parents that take the time to share their experiences.
DS9 has had PANDAS since 2010.

#7 kiera

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Posted 23 June 2012 - 09:30 AM

Thanks for sharing! Just wondering (since my ds has had a litany of diagnosis since age 2 also) do you think the antibiotics caused the c. diff. alone, as I'm presuming your ds had symptoms prior to pandas diagnosis and starting abx? Or do you think maybe the c. diff was there prior and abx made it worse. My son has the opposite problem of constipation so I don't think any c. diff.

#8 tracyree

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Posted 23 June 2012 - 12:24 PM

My son had no symptoms before pandas onset beyond a little sensory sensitivity and sleep issues He changed completely after pandas. From birth until about age 5 1/2 he was mellow and easy going. If anything, maybe his symptoms were how un-typical toddler like he'd been. (never tantrumed, always did as he was asked...)

After pandas diagnosis we were able to stop symptoms the firstvfew years and no lasting issues. Aftter the first few years all the irritability and difficulties started. Looking back and seeing how the flagyl effected him, it probably was all the antibiotic use causing a lot of the problems?

#9 tracyree

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Posted 24 June 2012 - 04:13 AM

Diarrhea returned, mouth wiping tic returning. Starting on vancomycin today.

Eye contact remains!

#10 Fixit

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Posted 24 June 2012 - 04:57 AM

TR, what a wonderful experience. So happy you could see your full child.
I have a freind that has seen improvement/remittance of autism symptoms with abx. But once the abx stops things return. I am trying to get her to read this site. And told her she needs a longer course of abx
I am going to forward your story to her.

Per some pan dr's i have heard that you may want to stay on flag, vanco, or clindamysin for a month or 2 or more. we see great results with those abx also. Also do not to taper off of these particular abxs, so that you dont build resistance. I have been hesitant to stay longer than 2 months due to resistance build up to those particular abx.

i also believe you can have c.diff and be constipated. not all people are the same as we know. also just a little c.diff for these kids could be a problem as they are so sensitve to whatever my be i

Please be sure that you are giving hd probiotics of varying types, particulaly Saccharomyces boulardii. But not give SB with anti-fungals due to die off effect.
Here is a pretty good article that talks about some of the types and what they might be good for. Also check out Great Plains site to see what they recommend for see Diff in regards to probiotics.

http://articles.cnn....es?_s=PM:HEALTH

#11 norcalmom

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Posted 25 June 2012 - 03:19 PM

wow wow wowow!! So happy to hear your son is getting better after all these years. And Fixit - thanks for the great probiotic article!

#12 tpotter

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Posted 26 June 2012 - 02:49 AM

wow wow wowow!! So happy to hear your son is getting better after all these years. And Fixit - thanks for the great probiotic article!


Just showed it to DS, who we know has gut issues, recurring c-diff, and now as a college student, is overloading himself with sugary drinks (aargh!) We've had multiple discussions (well..mostly me doing the discussing,) and I showed him this yesterday. He had actually stopped drinking the stuff for about 2 weeks while we ruled out candida, and is now back to drinking it all again. Clear difference in behavior on and off the stuff. Last night, he couldn't look me in the eye for 5 seconds, he's super loud, and he's barely eating again.

#13 tessakrista

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Posted 29 June 2012 - 09:16 PM


wow wow wowow!! So happy to hear your son is getting better after all these years. And Fixit - thanks for the great probiotic article!


Just showed it to DS, who we know has gut issues, recurring c-diff, and now as a college student, is overloading himself with sugary drinks (aargh!) We've had multiple discussions (well..mostly me doing the discussing,) and I showed him this yesterday. He had actually stopped drinking the stuff for about 2 weeks while we ruled out candida, and is now back to drinking it all again. Clear difference in behavior on and off the stuff. Last night, he couldn't look me in the eye for 5 seconds, he's super loud, and he's barely eating again.

how do you know your ds has gut issues? What are the symptoms and the tests we can use to determine that?




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