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-> Children's Health
amother
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 Thu, Feb 14 2019, 1:43 am
anyone who could even think of saying just wait till they outgrow it has never experienced a child with pandas. I don't know what would have happened to us and my poor son if we would not have have found out. I daven that no one has to experience this and those that do should know its pandas.
my child who by nature is quiet and well behaved turned into a violent monster who we had to restrain. my husband was not able to go to work. my other children would cry at night because he was basically ruing our happy family and they were embarrassed to have friends over. He became so full of rage and violent.
It took us months to figure out what he had.
after 3 weeks of antibiotics I saw that he was slowly coming back to me. we are now about 8 months in. we have mostly great days now but there are still real effects like anxiety and occasional rage and he is seeing a psychologist.
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amother
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Thu, Feb 14 2019, 6:40 am
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I didn’t read through all the posts but got though half of them. It’s important for those who post and state their opinion against pandas, to think twice. Unless you actually had a pandas child . You can’t imagine the drastic change over night. The calm happy great student and child who turns into a ball of tics, anxiety, food aversion and rages... you can’t understand the thousands of dollars if not more where these families go for help to get to the bottom of it. When we got the diagnosis of pandas and it’s treatment, we were monitored and when things weren’t getting better we were sent to a psychiatrist as well. It wasn’t just my pediatrician suggestiong pandas, we went to a pandas specialist. Until you’re living with a child like this, please think before you state your opinion . Treatments all go hand in hand. Antibiotics isn’t always the answer for oandas but that’s the first route . When my child at first stared it we saw drastic change within 3 days!
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FranticFrummie
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Thu, Feb 14 2019, 8:02 am
Just curious, has anyone removed tonsils in a child as a way of helping PANDAS go away?
I don't think DD ever qualified for a clinical diagnosis of PANDAS, but in kindergarten she had 5 verified cases of strep in one year. She was whiny, unhappy, argumentative, defiant, and generally kvetchy morning, noon, and night. She also didn't sleep well.
I figured it was because she was overtired, and fighting off the strep, and generally being a 5 year old.
I finally took her to a top ENT. He took one look at her tonsils and said "WHOA! How does she breathe?"  In his 30 years of practice, he'd only seen about 10 cases of tonsils as bad as hers, so out they came.
Within 48 hours, she was sweet, sunny, cooperative, loving, and a delight to have around. It was unbelievable. I thought they'd given her a full personality transplant! She also never got strep again, and almost never gets colds.
IMHO, tonsils are evil, and should be removed ASAP if the ENT says so. Don't delay, it can only help.
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amother
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Thu, Feb 14 2019, 8:46 am
| FranticFrummie wrote: | Just curious, has anyone removed tonsils in a child as a way of helping PANDAS go away?
I don't think DD ever qualified for a clinical diagnosis of PANDAS, but in kindergarten she had 5 verified cases of strep in one year. She was whiny, unhappy, argumentative, defiant, and generally kvetchy morning, noon, and night. She also didn't sleep well.
I figured it was because she was overtired, and fighting off the strep, and generally being a 5 year old.
I finally took her to a top ENT. He took one look at her tonsils and said "WHOA! How does she breathe?" In his 30 years of practice, he'd only seen about 10 cases of tonsils as bad as hers, so out they came.
Within 48 hours, she was sweet, sunny, cooperative, loving, and a delight to have around. It was unbelievable. I thought they'd given her a full personality transplant! She also never got strep again, and almost never gets colds.
IMHO, tonsils are evil, and should be removed ASAP if the ENT says so. Don't delay, it can only help. | Some pandas specialists recommend T&A as part of treatment. Some respond well, some don't.
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amother
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Thu, Feb 14 2019, 8:48 am
| amother wrote: | My child had very disturbing tics. Outrageous ones that were getting worse and worse.
I asked the dr if it could be pandas. She tested for step, and our came out positive!
DC was on abx for at least a month, and bH cured. | The fact that the tics went away with antibiotic treatment is very telling.
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FranticFrummie
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Thu, Feb 14 2019, 9:56 am
| amother wrote: | | Some pandas specialists recommend T&A as part of treatment. Some respond well, some don't. |
I know that you mean "tonsils and adenoids", but T&A means something very different in the secular world. 
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amother
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Thu, Feb 14 2019, 9:58 am
| Quote: | | IMHO, tonsils are evil, and should be removed ASAP if the ENT says so. Don't delay, it can only help. |
What a weird statement. Would Hashem create us with an "evil" body part? (And I'm not talking about Milah which is a mitzva.)
In your daughter's case she may have met the criteria for tonsillectomy. Fifty years ago it was routine to remove every kid's tonsils but after further research they found most of those surgeries were unnecessary. Now there are strict criteria for who needs tonsillectomy.
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ra_mom
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Thu, Feb 14 2019, 10:03 am
| FranticFrummie wrote: | Just curious, has anyone removed tonsils in a child as a way of helping PANDAS go away?
I don't think DD ever qualified for a clinical diagnosis of PANDAS, but in kindergarten she had 5 verified cases of strep in one year. She was whiny, unhappy, argumentative, defiant, and generally kvetchy morning, noon, and night. She also didn't sleep well.
I figured it was because she was overtired, and fighting off the strep, and generally being a 5 year old.
I finally took her to a top ENT. He took one look at her tonsils and said "WHOA! How does she breathe?" In his 30 years of practice, he'd only seen about 10 cases of tonsils as bad as hers, so out they came.
Within 48 hours, she was sweet, sunny, cooperative, loving, and a delight to have around. It was unbelievable. I thought they'd given her a full personality transplant! She also never got strep again, and almost never gets colds.
IMHO, tonsils are evil, and should be removed ASAP if the ENT says so. Don't delay, it can only help. |
For someone with chronic strep, it helps keep the PANDAS flare ups at bay.
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FranticFrummie
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Thu, Feb 14 2019, 10:07 am
| amother wrote: | | Quote: | | IMHO, tonsils are evil, and should be removed ASAP if the ENT says so. Don't delay, it can only help. |
What a weird statement. Would Hashem create us with an "evil" body part? (And I'm not talking about Milah which is a mitzva.)
In your daughter's case she may have met the criteria for tonsillectomy. Fifty years ago it was routine to remove every kid's tonsils but after further research they found most of those surgeries were unnecessary. Now there are strict criteria for who needs tonsillectomy. |
I said IMHO and listen to your doctor.
Do you always take everything literally?
I was hoping that the hyperbole would be obvious.
If you have tons of friends, I hope you didn't weigh them all and add them up.
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amother
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Thu, Feb 14 2019, 10:50 am
There is so much I want to say as a Pandas parent, so here goes.
-if you have never had a child change overnight from brilliant, loves life to a raging anorexic cant step foot out of the house monster, HOW DARE you say it is bad parenting.
Treating PANDAS involves a 3 pronged approach:
-finding infectious or viral trigger and getting long term antibiotics to treat it and prevent recurrence.
-taking anti-inflammatorieskeep motrin and turmeric to bring down inflammation in brain and resolve crisis flares (motrin calms my violent son within half hour...if it was psych caused it wouldnt)
-immune therapies like ivig and steroids to calm down autoimmune disease (my son has never been calmer in 9 months than when on steroids, we haven't dont ivig yet)
To say the least, we were on a good path and were finally making progress while on steroids and tried the recommended prozac (within days he was in full blown flare, suffering panic attacks again and having OCD thoughts that hadn't shown up since starting antibiotics 9 months ago). I have ZERO issue with taking meds to control emotional behaviour.
But like if someone would tell me when I was way depressed that I needed psych meds when bloodwork showed that I have hashimotos thyroiditis which causes depression, it would have been a TRAVESTY.
Finding the source of emotional symptoms should be first and foremost for any doctor or psychiatrist first and foremost.
PANDAS kids dont just show up with OCD, tics, ODD and anorexia, emotional symptoms. They have physical symptoms to when flaring like huge dilated eyes, their handwriting becomes crazy and they have bathroom issues as well.
Like any autoimmune disorder, they have periods of flaring and periods of calm.
Every time someone is sick or getting sick, their immune system goes crazy and the attacks their brain causing major behaviours issues (this would show up in schools especially which sre hotbed of germs and sickness)
My sons bloodwork clearly shows markers for autoimmune disease. He will now be categorized as Autoimmune Encephalitis. Brain inflammation caused by misdirected immune response and treated heavily. Would you be telling someone with type 1 diabetes that he needs psych meds? Someone with rheumatic fever that effects his heart not to take the recommended long term antibiotics?
There is major research going on in Columbia University and Stanford trying to find the exact autoantibody responsible for this and maybe which strain of strep is causing so much psych issues. It would make sense that a certain strain of strep is causing these symptoms and more kids are getting diagnoses with it cuz strep is way catchy.
Btw, my sons infectious trigger is NOT strep but mycoplasma pneumonia. And his immune system is so out of whack, that his titers dont even show up on bloodwork (other bloodwork shows that he is very low on certain iggs)
All of you naysayers, SHAME on you for putting parents and kids like us down...SHAME...
If my son had CV a brain tumor causing all these symptoms would you also be parent shaming?
Encephalitis is REAL. And depending where your brain is inflamed, that's where symptoms will show. Pandas effects the part where emotions and movement is controlled. It is no wonder that these poor poor kids (and yes, adults can get autoimmune disease from strep, like rheumatic fever so why not pandas), cannot control their behavior, anxiety etc...they. ant help it, their BRAINS are inflamed!
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amother
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Thu, Feb 14 2019, 11:03 am
| amother wrote: | | As another poster wrote, many people, who are fine and healthy, would test positive for strep if everyone were randomly tested. That's partially why PANDAS is controversial. |
THe poster you quoted wrote that her child was cured of his tics with a month of abx. So what does this have to do with testing healthy people?
See why we PANDAS parents can't even talk to the non-believers? You don't even listen to what we're saying.
-anon to protect my child's privacy
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FranticFrummie
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Thu, Feb 14 2019, 11:13 am
 to all the PANDAS parents.
Those of us in the Chronic Illness forum really get where you're coming from, but I think it's even harder when it's your child.
It's hard to tell what's worse. Watching your child struggle and suffer, or being told that there's nothing wrong with them. Worse yet, being told that you are at fault somehow. Such a nightmare, I wouldn't wish it on anybody (except maybe a couple of really rude doctors.)
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amother
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Thu, Feb 14 2019, 11:54 am
| amother wrote: | THe poster you quoted wrote that her child was cured of his tics with a month of abx. So what does this have to do with testing healthy people?
See why we PANDAS parents can't even talk to the non-believers? You don't even listen to what we're saying.
-anon to protect my child's privacy |
How do you know the tics were caused by the strep infection? How do you know they were resolved by antibiotics? The fact that the tics stopped after her ds took antibiotics does not demonstrate cause and effect.
We know how antibiotics work to help the body fight bacterial infections. It's been observed and replicated in double blind studies.
My understanding, and please correct me if I'm wrong, is that the same is not true for PANDAS.
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amother
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Thu, Feb 14 2019, 12:30 pm
| amother wrote: | How do you know the tics were caused by the strep infection? How do you know they were resolved by antibiotics? The fact that the tics stopped after her ds took antibiotics does not demonstrate cause and effect.
We know how antibiotics work to help the body fight bacterial infections. It's been observed and replicated in double blind studies.
My understanding, and please correct me if I'm wrong, is that the same is not true for PANDAS. |
What I am saying is, there can be multiple triggers for brain inflammation (which is causing tics or OCD etc). It needs three pronged approach. Autoimmune disease is a tricky thing...
Some kids their trigger is flu or ebv and they need long term anti viral ALONG with anti inflammatories and monthly ivigs... some kids need ritumixab (a chemo drug) to kill the antibodies causing damage.
Pandas isn't JUST tics...it has multiple symptoms...(my child can become suicidal when flaring, steroids and motrin help him become a calm loving kid again, not just antibiotics. Right now, he is on antibiotics for preventative measures. We need to concentrate on anti inflammatories and immune modulators to try to get him in remission)
Pandasnetwork.org is a website to look at for more information and multiple STUDIES, showing cause and effect. (Fyi, they do recommend very small dosing of psych drugs (like a quarter of smallest dose) until infection and resulting inflammation is down.
However, they do say, that in PANDAs kids, psych meds can make them much worse, and many many many pandas parents have found that to be true)
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aricelli
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Thu, Feb 14 2019, 12:34 pm
This is a lot of info for me to process... I only want to say “hugs” to everyone with a suffering child- for whatever reason. Though I dont know enough about pandas and dont know the feeling of having a child with that, I do know the feeling of friends and doctors not believing me... looking at my childs behavioral and emotional issues and saying “all is good” or “he’ll outgrow this without help” when my mommy instincts say otherwise.
Good luck to you all
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amother
Scarlet
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Thu, Feb 14 2019, 12:39 pm
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What antibiotic was your kid on (The long term >6 month regimen)? Is it always Azithromycin?
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amother
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Thu, Feb 14 2019, 3:21 pm
| amother wrote: | How do you know the tics were caused by the strep infection? How do you know they were resolved by antibiotics? The fact that the tics stopped after her ds took antibiotics does not demonstrate cause and effect.
We know how antibiotics work to help the body fight bacterial infections. It's been observed and replicated in double blind studies.
My understanding, and please correct me if I'm wrong, is that the same is not true for PANDAS. | If hundreds of parents report that their kids developed a whole bunch of neuropsych symptoms, then they took antibiotics and the neuropsych symptoms went away, then when they went off antibiotics they neuropsych symptoms came back, and then when they went back on antibiotics the symptoms went away again, and round and round again, does it really matter if there were double blind studies done to confirm this? If you were one of those mothers, you would know. The change is unmistakeable. You don't need double blind studies to tell you this. So what if it's off-label use of the drug? You know how many drugs are used off-label?
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amother
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Thu, Feb 14 2019, 3:22 pm
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Seagreen amother I'd love to know who your dr is and who diagnosed your kid with autoimmune encephalitis, and what blood markers your child had for it.
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nchr
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Thu, Feb 14 2019, 3:33 pm
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I think you also need to understand about 1 is 2,000 kids have pandas. That means its more likely to birth a child with atypical genetalia resulting in a doctor to come and determine gender (1 is 1,500 or 2,000) than for a child to have pandas.
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amother
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Thu, Feb 14 2019, 3:42 pm
| nchr wrote: | | I think you also need to understand about 1 is 2,000 kids have pandas. That means its more likely to birth a child with atypical genetalia resulting in a doctor to come and determine gender (1 is 1,500 or 2,000) than for a child to have pandas. | Actually Dr. Susan Swedo, lead pandas researcher at NIH, actually puts the statistics at 1 in 200.
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