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amother




Blonde
 

Post Mon, Apr 12 2021, 10:30 pm
amother [ Dodgerblue ] wrote:
Dr sisser from ODA in Williamsburg. Worth traveling in for. 718-260-4640 to make an appointment

Edit: Sorry she’s not a psychologist, she’s a pediatrician who understands pandas and has helped us a ton in the past and currently. My son is doing well because of her.
She can refer you to a pans literate psychologist if you need.

What is her methodology? My son reacted terribly to antibiotics. He literally became psychotic. When we took him off it, he went back to his old ‘pandas’ self.
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amother




Blonde
 

Post Mon, Apr 12 2021, 10:30 pm
amother [ Smokey ] wrote:
On this site I saw people talking about leah green from supreme. 845 426 6004. She has years of experience dealing with pandas.

Saw a huge difference within 2 days of beginning treatment. Eventually I switched over to a different natural health practitioner who I was seeing for different reasons because I wanted to consolidate our care at one place.

Can anyone elaborate on this?
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amother




Dodgerblue
 

Post Mon, Apr 12 2021, 10:34 pm
amother [ Blonde ] wrote:
What is her methodology? My son reacted terribly to antibiotics. He literally became psychotic. When we took him off it, he went back to his old ‘pandas’ self.


How old is your son?
She really listens to the parent and customizes her suggestions accordingly.
We personally did not do a long course of antibiotics (yet). She gave me a lot of ideas for natural ways to try. I tried lots of stuff and stuck with the two or three that were working for my child.
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amother




Blonde
 

Post Mon, Apr 12 2021, 11:44 pm
amother [ Dodgerblue ] wrote:
How old is your son?
She really listens to the parent and customizes her suggestions accordingly.
We personally did not do a long course of antibiotics (yet). She gave me a lot of ideas for natural ways to try. I tried lots of stuff and stuck with the two or three that were working for my child.

He’s 7. Suffering so much.
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amother




Yellow
 

Post Tue, Apr 13 2021, 8:42 am
Can someone explain how their child was diagnosed with pandas and what are some common symptoms aside from obvious tics? I have 2 kids who are constantly getting strep and their behavior is very overwhelming and erratic.( hyperactivity, extreme mood swings, obsessions) I am currently using Precious Health of Lakewood and I'm wondering which( if any) doctor will try to help me with this issue.
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amother




Copper
 

Post Tue, Apr 13 2021, 5:37 pm
amother [ Yellow ] wrote:
Can someone explain how their child was diagnosed with pandas and what are some common symptoms aside from obvious tics? I have 2 kids who are constantly getting strep and their behavior is very overwhelming and erratic.( hyperactivity, extreme mood swings, obsessions) I am currently using Precious Health of Lakewood and I'm wondering which( if any) doctor will try to help me with this issue.
I’m not familiar with that office so I don’t know if they have anyone pandas friendly on staff but the way I did it is basically gathered all the info, went to my pedi, said my story, didn’t care if he believed me or not, begged for bloodwork (I came with a list of what I wanted, didn’t care if they gave me the crazy mom treatment) and then begged for 30 days of antibiotics. Thankfully the pedi was cooperative, and after that I had my answer for myself, so I was even more confident in myself and what was going on for my kid. We did that in conjunction with alternative treatment and have seen huge improvements bh. I find with drs you need a combination of knowing what you want, but not presenting it in a way that makes them feel defensive. More like play dumb, say I know I sound nuts but can you do it for me as a personal favor. Like that.

Symptoms we saw aside for tics were hyperactivity, aggression, rage, mood swings, very emotional, restrictive eating, not being able to fall asleep, fears, phobias, anxiety, ocd, separation anxiety, weird gait, enlarged pupils, stuttering, oppositional and defiant behavior. Some tics and ocd can be hard to catch in kids but it’s almost always there.
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amother




Firebrick
 

Post Tue, Apr 13 2021, 5:48 pm
My ds was 11 when he started out with typical OCD symptoms. Washing his hands a lot, using the bathroom a lot. He got to the point where he was going to the bathroom every 5 minutes. I begged him to try going 15 minutes between bathroom trips, and he couldn't. He also started a crazy diet, after a whole life of impulsive overeating.

Then he became so anxious one day that he was crying on the floor. I took him to our doctor, who believes in pandas. He did bloodwork, and then started him on antibiotics immediately.

Since then, he stutters terribly whenever he is exposed to anyone who has strep. We are seeing Dr. Sisser in Williamsburg now, because our old pediatrician was at a loss for how to help him further. She is amazing.
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amother




Gold
 

Post Mon, May 03 2021, 6:28 pm
How long did it take you ladies to see any results from antibiotics. My son is on Amxil for almost 4 weeks and I haven't seen any change.
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amother




Copper
 

Post Mon, May 03 2021, 6:32 pm
amother [ Gold ] wrote:
How long did it take you ladies to see any results from antibiotics. My son is on Amxil for almost 4 weeks and I haven't seen any change.
You need something stronger. If strep is your trigger, augmentin and azithromycin are your best bets. Are you doing anything else aside for antibiotics?
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amother




Gold
 

Post Mon, May 03 2021, 6:34 pm
amother [ Copper ] wrote:
You need something stronger. If strep is your trigger, augmentin and azithromycin are your best bets. Are you doing anything else aside for antibiotics?


Sorry, I meant azithromycin 311 mg.

Didnt start anything else.
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amother




Copper
 

Post Mon, May 03 2021, 6:35 pm
amother [ Gold ] wrote:
Sorry, I meant azithromycin 311 mg.

Didnt start anything else.
We personally saw the biggest difference with augmentin. Are you tracking symptoms really really carefully? Have things gotten worse? If yes it could be here/die off.
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amother




Gold
 

Post Mon, May 03 2021, 6:38 pm
amother [ Copper ] wrote:
We personally saw the biggest difference with augmentin. Are you tracking symptoms really really carefully? Have things gotten worse? If yes it could be here/die off.


thats really hard on stomach. Should I ask to switch. Not sure theyve gotten worse, but they havent gotten better.

what do you mean by this ? If yes it could be here/die off.
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amother




Copper
 

Post Mon, May 03 2021, 6:41 pm
amother [ Gold ] wrote:
thats really hard on stomach. Should I ask to switch. Not sure theyve gotten worse, but they havent gotten better.

what do you mean by this ? If yes it could be here/die off.
We never had stomach problems with augmentin, but you could add in a probiotic. If things got worse, you could be experiencing symptoms from the bacteria dying and releasing toxins as they are digested and eliminated from the body, also known as a herxheimer reaction, herx for short. Also, do you know which infections you’re dealing with? That can help you figure out which antibiotics will work best.
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amother




Gold
 

Post Mon, May 03 2021, 6:47 pm
amother [ Copper ] wrote:
We never had stomach problems with augmentin, but you could add in a probiotic. If things got worse, you could be experiencing symptoms from the bacteria dying and releasing toxins as they are digested and eliminated from the body, also known as a herxheimer reaction, herx for short. Also, do you know which infections you’re dealing with? That can help you figure out which antibiotics will work best.


He had this tonsil removed when he was 4 for repeat strep or strep that wouldn't go away for 6 months at least.

He now 9.5 and his behavior is really nuts. Has been going on for years but the last few months have been disastrous.
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amother




Gold
 

Post Mon, May 03 2021, 6:48 pm
amother [ Gold ] wrote:
He had this tonsil removed when he was 4 for repeat strep or strep that wouldn't go away for 6 months at least.

He now 9.5 and his behavior is really nuts. Has been going on for years but the last few months have been disastrous.


Can I ask where you live? and which ped helped you?
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amother




Copper
 

Post Mon, May 03 2021, 6:50 pm
amother [ Gold ] wrote:
He had this tonsil removed when he was 4 for repeat strep or strep that wouldn't go away for 6 months at least.

He now 9.5 and his behavior is really nuts. Has been going on for years but the last few months have been disastrous.
It could still be strep elsewhere in the body, but a whole slew of other infections can cause the same group of symptoms. Have you tested for Lyme and coinfections with a specialty lab? Mycoplasma, coxsackie, hhv6, cmv, ebv? Does he have signs of yeast overgrowth? Is there known mold exposure? What symptoms are you seeing?
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amother




Copper
 

Post Mon, May 03 2021, 6:57 pm
amother [ Gold ] wrote:
Can I ask where you live? and which ped helped you?
When we were in Bklyn Dr. Feldman from Dr. Bulmash’s practice was helpful. But I had to tell him exactly what I wanted. Which labs, which antibiotics. I did my own research. We’ve paid lots of money for specialists too. But at the end of the day, it’s me and my own never ending research, self treating, advocating for my children that have helped the most.
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amother




Gold
 

Post Mon, May 03 2021, 7:00 pm
amother [ Copper ] wrote:
It could still be strep elsewhere in the body, but a whole slew of other infections can cause the same group of symptoms. Have you tested for Lyme and coinfections with a specialty lab? Mycoplasma, coxsackie, hhv6, cmv, ebv? Does he have signs of yeast overgrowth? Is there known mold exposure? What symptoms are you seeing?


Symptoms are aggression, rage, screaming, impulsive. He was tested for pandas, I do not know what his numbers were but doc reported blood is positive for pandas.
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amother




Copper
 

Post Mon, May 03 2021, 7:03 pm
amother [ Gold ] wrote:
Symptoms are aggression, rage, screaming, impulsive. He was tested for pandas, I do not know what his numbers were but doc reported blood is positive for pandas.
Bloodwork isn’t diagnostic for pandas. It doesn’t really matter what the numbers were. If I were you I’d be testing for other infections. Are you interested in supplements that can really make a difference? What about diet changes?
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amother




Gold
 

Post Mon, May 03 2021, 7:08 pm
amother [ Copper ] wrote:
Bloodwork isn’t diagnostic for pandas. It doesn’t really matter what the numbers were. If I were you I’d be testing for other infections. Are you interested in supplements that can really make a difference? What about diet changes?


I'm interested in supplements if they can make a difference. Diet changes will never work with way he is now. He has his limited foods that he eats and will not eat anything else.

which infections should I test for the ones you stated above? Are they treated differently?
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