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PANDAS - if your child took zythromax or other antibiotics
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amother




Lavender
 

Post Wed, Mar 03 2021, 4:27 pm
amother [ Babyblue ] wrote:
So there's no clear path you would recommend, after all that??
Every child is individual. They have different causes, different triggers, different disease pathologies and different genetics. So they will respond differently to different interventions. For best results tailor interventions to your child’s specific needs.
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amother




Lavender
 

Post Wed, Mar 03 2021, 4:27 pm
amother [ Taupe ] wrote:
Oy. Have any of you tried more standard behavioral therapies?
Behvaioral therapies will have a very, very limited effect on an inflamed brain.
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amother




Sapphire
 

Post Wed, Mar 03 2021, 5:37 pm
I suspect my child may have one of these brain inflammation sicknesses, as behavioral therapy and all of the most perfect parenting techniques have not made any inroads in his behavior. My son is 9, and continuously hits his siblings for no reason or very bizarre reasons, has many ocd type behaviors and tics, is extremely sensitive with a lot of sensory disintegration, and has many bizarre anxieties and fears. He is a very quiet, introverted child with low self esteem at school, and wild and out of control very often at home. He is clearly distressed by his own behavior but does not seem to be able to stop and shows only rare instances of self control. I am not sure if he is suffering from adhd or some sort of lingering inflammatory illness. He was once hospitalized as a nine month old baby for a strep infection that originally presented with no symptoms and then caused the right side of his body to become swollen and inflamed. He received intravenous antibiotics, and then oral antibiotics at home, and then seemed to get better. The doctors had never seen such a strep presentation and were baffled. I still wonder about that time, and its effect on my child... Please advise me on how to advocate for him with the pediatrician, as I am pretty sure I will hear "well, did he recently have strep? No? Well, then it can't be Pandas.". I really would like him tested before I go the adhd medication route.
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amother




Silver
 

Post Wed, Mar 03 2021, 5:42 pm
I would definitely do bloodwork for strep titers. Tics and anxiety is classic pandas...so a trial of motrin 3 times a day for a week to see if the behaviours get any better.
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amother




Babyblue
 

Post Wed, Mar 03 2021, 5:46 pm
amother [ Lavender ] wrote:
Every child is individual. They have different causes, different triggers, different disease pathologies and different genetics. So they will respond differently to different interventions. For best results tailor interventions to your child’s specific needs.

It doesn't sound like your child was helped. That's really horrible. Pandas is so unknown and almost impossible to treat.
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amother




Floralwhite
 

Post Wed, Mar 03 2021, 6:25 pm
Reading through this thread makes me appreciate that my son took antibiotics, not sure which one but nothing too strong for only 2x10 days and about a year later 3x10 days. I had no idea what pandas was, he had an eye twitch and asked my pediatrician for an eye dr referral. She said let’s check for strep first. Regular test came back negative but blood test came back positive.
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amother




Aquamarine
 

Post Wed, Mar 03 2021, 6:37 pm
My kid was on zithromax for a good few months. Then we slowly and gradually we weaned him off it. Then dr Schulman recommended he take turmeric in a jelly form. His tic bh disappeared with some time and every time he has a strept he has the tic again.
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amother




Aquamarine
 

Post Wed, Mar 03 2021, 6:38 pm
amother [ Sapphire ] wrote:
I suspect my child may have one of these brain inflammation sicknesses, as behavioral therapy and all of the most perfect parenting techniques have not made any inroads in his behavior. My son is 9, and continuously hits his siblings for no reason or very bizarre reasons, has many ocd type behaviors and tics, is extremely sensitive with a lot of sensory disintegration, and has many bizarre anxieties and fears. He is a very quiet, introverted child with low self esteem at school, and wild and out of control very often at home. He is clearly distressed by his own behavior but does not seem to be able to stop and shows only rare instances of self control. I am not sure if he is suffering from adhd or some sort of lingering inflammatory illness. He was once hospitalized as a nine month old baby for a strep infection that originally presented with no symptoms and then caused the right side of his body to become swollen and inflamed. He received intravenous antibiotics, and then oral antibiotics at home, and then seemed to get better. The doctors had never seen such a strep presentation and were baffled. I still wonder about that time, and its effect on my child... Please advise me on how to advocate for him with the pediatrician, as I am pretty sure I will hear "well, did he recently have strep? No? Well, then it can't be Pandas.". I really would like him tested before I go the adhd medication route.


Did he always have this behavior or is it new?
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amother




Lavender
 

Post Wed, Mar 03 2021, 7:17 pm
amother [ Babyblue ] wrote:
It doesn't sound like your child was helped. That's really horrible. Pandas is so unknown and almost impossible to treat.
why doesn’t it sound like my child was helped? These things helped a lot.
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amother




Sapphire
 

Post Wed, Mar 03 2021, 7:29 pm
amother [ Aquamarine ] wrote:
Did he always have this behavior or is it new?


We have struggled with his behaviors since four years old. He constantly interrupts and switches the topic in a conversation. He talks obsessively about wrestling and violence and war. He has many anxieties, social and otherwise, for example he is afraid to be on any floor of the house by himself and would rather hold it in if he desperately needs the bathroom then go downstairs by himself if the upstairs bathroom is occupied. The tics and OCD behaviors come and go, with new ones appearing and old ones receding. The one constant tic/OCD thing is his need to secretly walk up to anyone that "slighted" him (and a slight could be brushing past him accidentally in the hallway) and give him/her two little potches. It is very compulsive and he is not comfortable unless he does this, since four years old. There is something about his behaviors that make me feel he cannot control them, and behavior modification therapy does nothing. It's like treating the symptoms and not the cause. Bit no one has been able to help me, and something tells me not to just get him on ADHD meds.
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amother




Lavender
 

Post Wed, Mar 03 2021, 7:33 pm
amother [ Sapphire ] wrote:
We have struggled with his behaviors since four years old. He constantly interrupts and switches the topic in a conversation. He talks obsessively about wrestling and violence and war. He has many anxieties, social and otherwise, for example he is afraid to be on any floor of the house by himself and would rather hold it in if he desperately needs the bathroom then go downstairs by himself if the upstairs bathroom is occupied. The tics and OCD behaviors come and go, with new ones appearing and old ones receding. The one constant tic/OCD thing is his need to secretly walk up to anyone that "slighted" him (and a slight could be brushing past him accidentally in the hallway) and give him/her two little potches. It is very compulsive and he is not comfortable unless he does this, since four years old. There is something about his behaviors that make me feel he cannot control them, and behavior modification therapy does nothing. It's like treating the symptoms and not the cause. Bit no one has been able to help me, and something tells me not to just get him on ADHD meds.
This definitely sounds like pandas. You need to get to a pandas literate dr.
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amother




Babyblue
 

Post Wed, Mar 03 2021, 7:33 pm
amother [ Lavender ] wrote:
why doesn’t it sound like my child was helped? These things helped a lot.

Because you can't point to a specific regiment and did 20 things which means it kept going on and you still don't know what helped. I have experience with this. There is no answer to pandas. Everybody grasps at straws. Wish there was a cure and real regiment. I'd be the first in line to grab any answers.
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amother




Sapphire
 

Post Wed, Mar 03 2021, 7:39 pm
amother [ Lavender ] wrote:
This definitely sounds like pandas. You need to get to a pandas literate dr.


Please help me. How do I go about doing so? Thank you.
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amother




Lavender
 

Post Wed, Mar 03 2021, 7:47 pm
amother [ Babyblue ] wrote:
Because you can't point to a specific regiment and did 20 things which means it kept going on and you still don't know what helped. I have experience with this. There is no answer to pandas. Everybody grasps at straws. Wish there was a cure and real regiment. I'd be the first in line to grab any answers.
All of them helped at least a little. Her baseline is much improved. Can’t compare behavior to what it was before treatment. None of it was a cure. Not even 7 months of antibiotics. Next up to try is classical homeopathy.
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amother




Lavender
 

Post Wed, Mar 03 2021, 7:48 pm
amother [ Sapphire ] wrote:
Please help me. How do I go about doing so? Thank you.
Where are you located and are you willing to spend money?
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amother




Sapphire
 

Post Wed, Mar 03 2021, 7:59 pm
amother [ Lavender ] wrote:
Where are you located and are you willing to spend money?


Philly, yes
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amother




Lavender
 

Post Wed, Mar 03 2021, 8:01 pm
amother [ Sapphire ] wrote:
Philly, yes
https://pandasnetwork.org/us-p.....VANIA
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