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Pandas, where to go next
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amother




OP
 

Post Mon, Apr 12 2021, 10:12 am
My child had terrible rages and other clear symptoms of pandas . He’s been treated for over a year on antibiotics. Yea we have seen positive change but I feel stuck. Don’t know where to go. He shows at home ODD, it affects the whole family . But when u see him in school and any other time he seems completely normal and great. But I’m out home it’s different. I know those that are dealing with severe cases go to neurologist and all, but now he’s doing ok. It scares me what might be when the next flair comes. But I feel like if I take him to a doctor like this they’ll think I’m nuts. But really I know his behavior and few other symptoms just don’t make sense.
On top of that the ENT said the next step would be take out tonsils, even tho they look fine he said strep can be sitting there. So my mind thinks I’m gonna put him through a tough surgery bec of his behavior that others don’t even believe me ...... anyone who has had a moderate pandas case and have guidance please give some input. Thank you
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amother




Smokey
 

Post Mon, Apr 12 2021, 11:31 am
amother [ OP ] wrote:
My child had terrible rages and other clear symptoms of pandas . He’s been treated for over a year on antibiotics. Yea we have seen positive change but I feel stuck. Don’t know where to go. He shows at home ODD, it affects the whole family . But when u see him in school and any other time he seems completely normal and great. But I’m out home it’s different. I know those that are dealing with severe cases go to neurologist and all, but now he’s doing ok. It scares me what might be when the next flair comes. But I feel like if I take him to a doctor like this they’ll think I’m nuts. But really I know his behavior and few other symptoms just don’t make sense.
On top of that the ENT said the next step would be take out tonsils, even tho they look fine he said strep can be sitting there. So my mind thinks I’m gonna put him through a tough surgery bec of his behavior that others don’t even believe me ...... anyone who has had a moderate pandas case and have guidance please give some input. Thank you


I treated pandas naturally and saw a huge turnaround in my child, but it definitely had to combine with emotional work on my part to not get pulled in when her behavior triggers me and provide her with loving, yet fair parenting.

They say many times when pandas gets resolved the brain is already wired to certain behaviors and it needs to be dealt with separately.

Although, if he is sometimes uncontrollable, I would look into whether he is getting the right treatment or maybe it needs to be modified.
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amother




Blonde
 

Post Mon, Apr 12 2021, 11:38 am
amother [ Smokey ] wrote:
I treated pandas naturally and saw a huge turnaround in my child, but it definitely had to combine with emotional work on my part to not get pulled in when her behavior triggers me and provide her with loving, yet fair parenting.

They say many times when pandas gets resolved the brain is already wired to certain behaviors and it needs to be dealt with separately.

Although, if he is sometimes uncontrollable, I would look into whether he is getting the right treatment or maybe it needs to be modified.

How did u treat it naturally?? My son is so sick😢 Are you seeing someone that’s guiding you?
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amother




Floralwhite
 

Post Mon, Apr 12 2021, 11:39 am
This needs a holistic view- antibiotics, natural treatments, and support/ parenting support for you and emotional support for the child
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amother




OP
 

Post Mon, Apr 12 2021, 1:41 pm
So I guess maybe Now’s the point where I need to go to a psychologist or therapist with him to learn how to deal with these behaviors. Anyone you can recommend in Brooklyn? Also, how did u treat it naturally , my kid won’t eat healthy or change diet, he eats same few foods, can barley get him to take his meds can’t imagine vitamins and herbs.... any suggestions please welcome
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Jewishmom8




 
 
 
 

Post Mon, Apr 12 2021, 1:46 pm
yeah, I had to take my son to a psychologist.
It helped a lot.
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goforit




 
 
 
 

Post Mon, Apr 12 2021, 1:52 pm
I definitely believe you!

When we had similar the ent said before he takes out tonsils he gave us clindamycin. While on it DC was insane but was a huge difference after. Worth a shot.
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amother




OP
 

Post Mon, Apr 12 2021, 2:09 pm
The tonsils were completely fine tho he just said next step is taking them out bec strep could be hiding there
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goforit




 
 
 
 

Post Mon, Apr 12 2021, 2:24 pm
amother [ OP ] wrote:
The tonsils were completely fine tho he just said next step is taking them out bec strep could be hiding there


I was told exactly the same.
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amother




Firebrick
 

Post Mon, Apr 12 2021, 2:29 pm
My ds's tonsils were removed when he was 3, and he got pandas anyway at age 11. He has flare ups whenever he is exposed to anyone who has strep.
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English3




 
 
 
 

Post Mon, Apr 12 2021, 2:30 pm
Strep can be healed with apple cider and honey one teaspoon each diluted with a half cup of water. Not sure it will cure pandas. But it got my huge tonsil to shrink completely in 10 days. I used to get hospitalised BC I would develop a huge abscess on it. BH I have not had a single incident since
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amother




OP
 

Post Mon, Apr 12 2021, 2:31 pm
Any psychologist recommendations in Brooklyn that understands pandas
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amother




Azure
 

Post Mon, Apr 12 2021, 2:51 pm
My child was similar to yours. Most of the time he was able to hold it together in school, but at home he was nuts.
We thought the tonsillectomy would cure pandas, but it only helped a little. We tried a lot of things including long term antibiotics, IVIG and natural supplements. We had a lot of steps forward then steps back. Every treatment started with nice results until they wore off. Strep exposure set him into a flare.
It took many years, but bh he is doing so well now. I can still tell when he has strep exposure, but I usually wont treat him.
It was a very hard point of our lives, and no one really understood what we were going through. He wasn't "special needs", but I wasn't able to go to leave him with a regular babysitter if I wanted to go out at night.
Dr. Susan Schulman is a big PANDAS expert, but I'm not sure if she is seeing patients now that she made aliyah.
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ra_mom




 
 
 
 

Post Mon, Apr 12 2021, 2:56 pm
First step is to remove the tonsils. ASAP. I'm sorry I didn't do that earlier. This will stop new flares - the ones that happen every time he has a strep infection.

Then he needs treatment for what's going on now. If he's not getting better on antibiotics and having raging symtpms you should get him IVIG intravenous immunoglobulin treatment. It usually isn't covered though by insurance.
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amother




Ruby
 

Post Mon, Apr 12 2021, 3:11 pm
amother [ Firebrick ] wrote:
My ds's tonsils were removed when he was 3, and he got pandas anyway at age 11. He has flare ups whenever he is exposed to anyone who has strep.


My kid never got a PANDAS diagnosis but had behavioral issues whenever they had strep or even if anyone else in the family had strep.
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amother




Smokey
 

Post Mon, Apr 12 2021, 3:34 pm
amother [ Blonde ] wrote:
How did u treat it naturally?? My son is so sick😢 Are you seeing someone that’s guiding you?


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.
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amother




Dodgerblue
 

Post Mon, Apr 12 2021, 3:42 pm
amother [ OP ] wrote:
Any psychologist recommendations in Brooklyn that understands pandas


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.
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mom of three bh




 
 
 
 

Post Mon, Apr 12 2021, 3:47 pm
dodgerblue can you pls pm me I would love to ask you some specific questions
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amother




Copper
 

Post Mon, Apr 12 2021, 6:17 pm
If your son is still raging he still has unresolved medical issues. A psychologist may be helpful, but there is no way this is residual. And therapy doesn’t stick very well when the brain is inflamed. I would keep peeling away the layers and treating root causes. Have you done anything other than antibiotics? Have you looked for and treated all underlying infections aside for strep? Tested for Lyme and coinfections with a lyme literate provider? Are you ready to tackle diet and gut health? Eliminating gluten and corn was a huge rage reducer here.

We’ve been on this road for 5 years now. If there’s one thing I wish I could tell all pandas parents it’s that no single dr or provider will save you. You need to learn everything you could about your kid and their condition, and pursue the treatments you want. There are some wonderful drs out there with wonderful protocols, so many different angles to pursue, but at the end of the day there is no gold standard, what works for one won’t work for another, and you and your kid are the only ones who really know what your reality is like and are ready to go to the ends of the earth to fix this. Sorry if this is discouraging, but it’s the truth.
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amother




Magenta
 

Post Mon, Apr 12 2021, 8:39 pm
My dd age 7 has pandas.

We took out her tonsils when she was 3...

She is now on amoxicillin, doing much better
But when anyone around her has strept she flares up big time.

My dr told me that when anyone in family has strept to give this dd 3 tsp motrin 3x day for 3 days. it helps the inflammation.
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