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My kid has PANDAS, AMA
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amother




OP


Post  Sun, Sep 15 2019, 12:58 am
Title says it all.
Ask away...
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amother




Smokey


Post  Sun, Sep 15 2019, 12:59 am
What made you suspect PANDAS?
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amother




Babyblue


Post  Sun, Sep 15 2019, 1:00 am
Do you also feel like people judge you/insinuate that you are blaming all his behavior on the diagnosis and not addressing his issues the “real” way?
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amother




Bronze


Post  Sun, Sep 15 2019, 1:17 am
How are you dealing with the PANDAS?
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amother




Chocolate


Post  Sun, Sep 15 2019, 2:54 am
My kid has it too. He was diagnosed with it from three different doctors. His personality changed quite drastically about 2 years ago during the time that he had a silent strep infection with only strange behavioral symptoms. He went from a confident, sweet, super compliant and attentive boy to one with bouts of rage, fears, tantrums, aggressive behaviors, hyperactivity, irrational thinking and random physical complaints. So sad to watch and live with, especially the fact that everyone wants to believe its his choice to act so unstable. For some reason, they try so hard to make connections between his behavior and what they see around him. What's so hard to understand that his brain, something they can't see, is sick? The differences from his good moments and bad moements are so drastic that it's obvious to me that something is taking over his brain. I have to be honest, I can't say that I do not lose it with him sometimes; his behavior can truly be so hurtful and it often seems purposeful. Only afterwards is it obvious it's not. It's almost like he has Alzheimer's sometimes with his bouts of confusion, random rage and shifts in personality. He often asks if he's good. Poor, poor kid. He is good and has a special soul. This illness is what's bad.
Bh after much medical treatment (years of antibiotics, T&A surgery and IVIg) his real self is returning but I have cried many, many tears and feel so isolated. No one wants to believe the truth. They don't have to live it, we do and he and his siblings. The least others can do is listen and give support as they would to any parent of a sick child. Thank you for the opportunity to share. That felt cathartic!
How is your child? I know every child can present differently which further makes this illness so confusing and misunderstood. How did your child present? Is he getting better? Refuah shelaima! I am with you.
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amother




OP


Post  Sun, Sep 15 2019, 1:14 pm
amother [ Smokey ] wrote:
What made you suspect PANDAS?


I didn't suspect at all. My child was always slightly anxious (years and years), not major behaviour issues at all, always pickyeish eater etc.

He randomly started repeatedly asking about death and how he would die if he got dehydrated and he would faint and die...over and over and over again. He was going to the toilet every five minutes literally. He ended up in hatzalah having a panic attack in middle of school on a very hot day from.his fear of dehydration/fainting/dying.

I didn't suspect pandas though I had heard about it cuz I thought it was mostly behaviour issues.

We had pediatricians well visit the next day. He swabbed positive for strep and he told us wbo it pandas. He prescribed month of antibiotics and our journey began. Antibiotics was a drop in the bucket of his treatment. His pandas got WAY worse before we got the right treatment.
The school refusal, anorexia, memory loss, loss of motor coordination (couldn't write in straight line), Alice in Wondelrand syndrome (where your eyes perceive size differently), severe rages and violence, severe insomnia, suicidal thoughts and depression, was traumatic for all.

He is being treated by a neurologist at Columbia. And bh he is doing way better this year almost a year and half since diagnosis. But as it is a autoimmune disease, we will be dealing with this for a while...

Looking back at his notebooks now, I see his handwriting changing many years ago over the course of the year...meaning he has had panda for a while which we didn't know. Mild pandas until the next undiagnosed/missed strep infection exploded it into severe pandas
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amother




OP


Post  Sun, Sep 15 2019, 1:19 pm
amother [ Babyblue ] wrote:
Do you also feel like people judge you/insinuate that you are blaming all his behavior on the diagnosis and not addressing his issues the “real” way?

Especially family members...
Until the ones who choose to come come over for a day and night and they never say that again.
It's a life of hell.
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amother




Bronze


Post  Sun, Sep 15 2019, 7:55 pm
He is being treated by a neurologist at Columbia. And bh he is doing way better this year almost a year and half since diagnosis. But as it is a autoimmune disease, we will be dealing with this for a while...
[/quote]

Do you mind sharing which neurologist? I’m currently going through this with my DS and am at a dead end I’m treating it. It’s so painful Crying
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amother




OP


Post  Sun, Sep 15 2019, 8:09 pm
amother [ Bronze ] wrote:
He is being treated by a neurologist at Columbia. And bh he is doing way better this year almost a year and half since diagnosis. But as it is a autoimmune disease, we will be dealing with this for a while...


Do you mind sharing which neurologist? I’m currently going through this with my DS and am at a dead end I’m treating it. It’s so painful Crying[/quote]
Dr. Wendy Vargas
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amother




OP


Post  Sun, Sep 15 2019, 8:19 pm
amother [ Bronze ] wrote:
How are you dealing with the PANDAS?

He is on daily antibiotics (2 different ones) and daily Motrin. He has had one IVIG treatment and will probably need another soon.
At certain points (if his flaring gets too violent etc) we put him on Prednisone taper over a few weeks and that works wonders as well.
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trixx




 
 
 


Post  Sun, Sep 15 2019, 9:41 pm
Have you considered or done a diet change to address the autoimmune aspect of it?
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amother




Saddlebrown


Post  Sun, Sep 15 2019, 11:14 pm
Just going to put it out there my ds had pandas and clyndomicn knocked it out every time it cames back bh. I know it doesn't work for everyone. Dr Schulman brushed off this suggestion until the ent decided before ivig to give it a shot. Miricals. (Btw when he was on it his symptoms went through the roof. That's a good sign)
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amother




Bronze


Post  Sun, Sep 15 2019, 11:17 pm
amother [ Saddlebrown ] wrote:
Just going to put it out there my ds had pandas and clyndomicn knocked it out every time it cames back bh. I know it doesn't work for everyone. Dr Schulman brushed off this suggestion until the ent decided before ivig to give it a shot. Miricals. (Btw when he was on it his symptoms went through the roof. That's a good sign)


Did the ENT decide to try clindamycin or you asked to try it after researching it for pandas? Also which ENT is this?
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amother




Saddlebrown


Post  Mon, Sep 16 2019, 2:16 am
amother [ Bronze ] wrote:
Did the ENT decide to try clindamycin or you asked to try it after researching it for pandas? Also which ENT is this?


The ent suggests it. It was Dr. Goldsmith.
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amother




Tan


Post  Mon, Sep 16 2019, 2:38 am
Was it diagnosed through bloodwork ? Ours came back negative for PANDAS through bloodwork but my son has all of the symptoms. We are trying this week to treat his tics and underlying strep bacteria with homeopathy. We'll give it a month and see how it goes. I delayed doing antibiotics because I don't want to play with his gut if his issues are neurological. The doctors suspected PANDAS when I asked about it but each one I went to didn't really want to treat it as such. Not one of them liked the idea of long term antibiotics.

He has ADHD, anxieties, fears, bites nails down really low, tics for years already (facial mostly but also neck, shoulders, feet and hands), erratic behavior, cursing a ton, bouts of rage with violence which he's always sorry for after, started wetting bed again at night after years of being pretty dry, all sudden onset from after undiagnosed strep (no fever or throat pain but tested positive and a few rounds of antibiotics later still had positive test.) He is really the sweetest kid with the biggest heart and special soul and it kills me to see him with behavior like this. I still think his case is mild compared to other cases I read about. I really fear it getting worse. It affects his schoolwork but still has tons of friends and is a popular kid and great at sports. I'm in Israel and would appreciate getting a recommendation of a good dr for PANDAS here.
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amother




Cerulean


Post  Mon, Sep 16 2019, 1:27 pm
My ds also has pandas. It showed up in bloodwork. I suspected when he suddenly became extremely anxious one day, to the point that he was crying on the floor. (He's 11 years old.) He was also using the bathroom every 5 minutes and suddenly on a major diet.

B"H he is on antibiotics since August and he is back to his usual self. But the one day he missed the antibiotics because we needed a refill, the anxiety returned, though not as severely as during the summer.

I thank Hashem every day when my son smiles and acts as he should instead of worrying and crying all day as he did for a few days during the summer.
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renapl




 
 
 


Post  Mon, Sep 16 2019, 2:04 pm
We discovered my son had pandas a year ago. He had raging violent behavior and he practically forgot how to read. We took him to dr Schick in highland park nj. He is officially a chiropractor and functional neurologist but he does a lot of interesting wholistic stuff. BH he is a different child. Helped so so much. We had to go every week for months . But was worth it. I would venture to say he’s cured but always scared to say....Iwe haven’t gone in 3 months and haven’t need to BH. Would definitely recommend to anyone dealing with pandas
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amother




Bronze


Post  Thu, Sep 19 2019, 2:25 pm
Thanks OP for starting this thread! I feel like PANDAS is so isolating. I tried making an appt by Dr. Vargas but she’s not taking new patients. They had me schedule an appointment with another doctor in the group who they claim deals with PANDAS too. We went yesterday n I can’t stop feeling down since then Crying This doctor was so nasty, didn’t let me talk, he basically interrogated me for an hour n then claimed my DC just has Tourette’s. He didn’t let me explain why I feel the tics are from PANDAS! I know that not all tics are PANDAS but he should have at least listened to what I have to say n rule out any brain inflammation. Instead, without asking me if I’m ok with the plan, he wants me to keep track of DC tics and come back mid November.
I feel like if it’s PANDAS then why not treat the brain inflammation n not just treat the tics! Get to the root of the problem and not just put a band aid on it Banging head I am soooo frustrated
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amother




Gray


Post  Thu, Sep 19 2019, 3:28 pm
my son has pandas too.
it has been a long 2 years from when he finally got diagnosed but he is so much better bh
we did blood work and they found it there.
he has so many of the same symptoms described here.
the anxiety and rage. the bathroom every 5 minutes. the irrational behaviors. very scary like where did my sweet good boy go. but BH now he is back.
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amother




Bronze


Post  Thu, Sep 19 2019, 3:46 pm
amother [ Gray ] wrote:
my son has pandas too.
it has been a long 2 years from when he finally got diagnosed but he is so much better bh
we did blood work and they found it there.
he has so many of the same symptoms described here.
the anxiety and rage. the bathroom every 5 minutes. the irrational behaviors. very scary like where did my sweet good boy go. but BH now he is back.


Which doctor are you using to treat it?
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