Why PANDAS? | Imamother

chams

Mon, Oct 11 2021, 12:28 pm

Someone on here pointed us towards pandas and it was a savior. The doctors did not point it out and I was sure there was something wrong. I did not know of pandas. Now that the Dr we were seeing did not believe in pandas and I know all of the symptoms my daughter was a clear cut case. Sudden, overnight and many other symptoms that are clearly only with pandas.
Simply because a Dr didn't believe in something my family had to be turned upside down until my dd received the right medication and is back to herself.
I feel like we lived through a neis after the year we had to go thru.
1 in 200 children with pandas is alot of children. So if you have a child with sudden change, and all of the right symptoms please explore pandas before your life is turned upside down.
On the other hand I have seen a friend whose child was clearly on the spectrum looking for something medical to blame and so tried to think it was pans or pandas. Only after testing everything did they finally get the diagnoses aspergers.
I often see these type of families are often in denial or blinded about their childrens behavior. This child had behaviors for years and not the right symptoms but often it is hard to face that your child is on the spectrum or adhd. But you must for the child's sake so they can get the right help.
I am not judging I know it's hard. I'm just advocating to know the symptoms and get your child the right help they need.

amother

Jean

Mon, Oct 11 2021, 12:31 pm

amother [ Eggshell ] wrote:

Ok. Again you're lumping all parents together.
My child never had tics, never had a stutter, no ocd.
He's a intense child who struggles with change and control and rules. He is stubborn and willful and can tantrum for a cookie for an hour and can be stubborn and willful and not give up and figure out the puzzle that is way above his age level.
And yes parenting has helped a lot. The explosive child, and learning about Respectful Parenting.
He's still stubborn and intense. But you and others would rather me run around looking for autoimmune, PANS, flaming brain, spending a fortune of money and end result will still be a stubborn and intense child who's siblings resent.

But what if the end result will be a less stubborn and headstrong child? When my child started being unreasonably stubborn and willful and tantrum in gi read and implemented the explosive child, the whole brain child, unconditional parenting and took A course in gentle and respectful parenting. It helped a ton for me not to get into power struggles with my child, empathize with them, co regulate with them. But it wasn’t enough. So I treated them for brain inflammation, and today they are without a doubt less stubborn and intense, which I consider a good thing.

amother

Eggshell

Mon, Oct 11 2021, 12:35 pm

amother [ Jean ] wrote:

Key words are unreasonably stubborn.
Just because I don't think he's being unreasonably stubborn doesn't mean I don't need or want advice.

amother

Jean

Mon, Oct 11 2021, 12:42 pm

amother [ Eggshell ] wrote:

Key words are unreasonably stubborn.
Just because I don't think he's being unreasonably stubborn doesn't mean I don't need or want advice.

Ok. My apologies for giving unsolicited advice. I will try to bulldoze less in the future.

One last thing, you said your kid doesn’t have ocd. Tantrumming for an hour for a cookie *is* ocd.

LovesHashem

Mon, Oct 11 2021, 12:45 pm

People don’t like being told it can ONLY be PANDAS and ADHD does not exist because it’s an overwhelming idea.

It’s basically telling anyone with a child with ADHD that they’ve made mistakes their entire life, and if they had enough money and energy and REALLY cared about their kids they’d try the 100 different therapies and diets and different things in order to get rid of this beast that can be taken away.

amother

Jean

Mon, Oct 11 2021, 12:55 pm

LovesHashem wrote:

Nothing to do with caring. Only to do with knowledge. My only intent is to share and educate because I myself am so grateful other mothers educated me, I don’t know where my life or my children would be without my tribe. Not at all intending to shame or blame or guilt or judge, we all have way more of that then we need. But if it’s not appreciated, then I’ll stop.

amother

Mintcream

Mon, Oct 11 2021, 1:13 pm

amother [ Jean ] wrote:

Ok. My apologies for giving unsolicited advice. I will try to bulldoze less in the future.

One last thing, you said your kid doesn’t have ocd. Tantrumming for an hour for a cookie *is* ocd.

Or not

My brother who tantrummed the loudest went on to do the most awesome things. He’s headstrong and knows what he wants and when he wants the cookie he WANTS his cookie.

Only now he knows how to get it without the tantrum.

amother

Eggshell

Mon, Oct 11 2021, 1:18 pm

amother [ Jean ] wrote:

Ok. My apologies for giving unsolicited advice. I will try to bulldoze less in the future.

One last thing, you said your kid doesn’t have ocd. Tantrumming for an hour for a cookie *is* ocd.

For a 10 year old? Yup.
For a 3 year old, it's within reasonable behavior that is annoying to deal with yet can be worked and taught with, not medicated away.

ra_mom

Mon, Oct 11 2021, 2:15 pm

amother [ Eggshell ] wrote:

The problem is the pushing PANDAS etc when it's NOT overnight.
My 5 year old is difficult. Doesn't sleep well. Gets angry quickly and intensely.
But he was always like this. He was an intense 2 week old and 2 month old and 2 year old.
I actually don't think he has enough markers for ASD or ADHD.
But when I ask for advice, people throw PANDAS at me.
But he never changed. He was always intense. I need to learn and he needs to learn how to live with that intensity and turn it into a propellant that will help him, rather than wasting his entire childhood and all my money chasing treatments and medicines and supplements to try to change his nature.

I agree with this 100%. Pandas is real but it's not the catch all diagnosis. I do not agree with those posters who believe that a pandas diagnosis doesn't need to have sudden onset of symptoms.

amother

Tan

Mon, Oct 11 2021, 2:28 pm

A top children's psychiatrist told me that PANDAS is a parental cop out when they cannot cope with their children having a real diagnosis and that adults do the same thing with Lyme. He says that instead of getting children and adults the real help they need from psychiatrist and therapists parents waste time and money on PANDAS and Lyme to calm their own anxiety or shame. Yes, PANDAS is a real thing, but it is not as common as people pretend. He says he often sees children after their parents have tried things for PANDAS for years unsuccessfully and the children would have been easier to treat earlier.

Stuttering is neurological and usually genetic. It also usually goes away before age 5, but can continue.

amother

DarkOrange

Mon, Oct 11 2021, 2:39 pm

There is a whole network of people who try to convince everyone that everything is pandas. Someone close to me had pandas. Overnight he started having tics, he was irritable and not doing well. His pediatrician ran a blood panel and said it's pandas, put him on an antibiotic regiment, and that was it. He recovered and moved on. No more strep, no more pandas no more symptoms. I'm really bothered by the people pushing it and I think it's dangerous. So many parents are not getting their children the correct help because they have this incurable disease called pandas. I just find it very sad.

amother

Jean

Mon, Oct 11 2021, 2:40 pm

amother [ Tan ] wrote:

This psychiatrist is so wrong.

amother

Cerise

Mon, Oct 11 2021, 4:07 pm

amother [ Tan ] wrote:

You realize that psychiatrists are NOT trained in immunology, infectious disease and neurology etc?
They are one track minded!
In fact. Show me one psychiatrist who will do a thorough bloodwork panel for thyroid issues, celiac, etc. That are KNOWN to cause psychiatric symptoms. Yet they hand out meds like candy to little kids and adults alike without a workup! Explain me that!
Explain to me why I would need to treat my neuolyme son with psych meds (which made him suicidal!) When he has hallucinations from brain inflammation and when Motrin (anti inflammatory) helps him in twenty minutes.
Explain to me why Dr. Rosalie Greenberg a psychiatrist who WROTE the book and did her research on childhood bipolar now did 100 degree turn and tests ALL her pediatric and young adult patients for ticks borne diseases. Ninety percemt of her patients are positive! And with proper treatment lose their diagnosis of bipolar. Schizophrenia etc.

So yes. The TOP child psychiatrist is stuck in his little box. You realize that most of these psych meds have black box warnings and you/he are suggesting we give them to little kids without even bloodwork or neurological workup (MRI. Eeg etc)

amother

Jean

Mon, Oct 11 2021, 4:12 pm

amother [ Emerald ] wrote:

Just putting it out there that once someone has Lyme they will test positive their entire life so dont use lyme as your proof. So even after their treated for PANDAS or whatever they will still have lyme.

False. It is possible to go into remission and to get a negative result. But all good lyme drs know not to go off of testing. You go off of symptoms. And if a patient is psychotic , or manic, or has ocd, or chronic fatigue, they are still symptomatic.

amother

Jean

Mon, Oct 11 2021, 4:12 pm

amother [ Cerise ] wrote:

Yes. This. I’m so tired of explaining.

amother

Royalblue

Mon, Oct 11 2021, 4:16 pm

amother [ Cerise ] wrote:

You’re wrong psychiatrists go to medical school. They know more than you guaranteed.

amother

Garnet

Mon, Oct 11 2021, 4:44 pm

amother [ Cerise ] wrote:

My DD's psychiatrist did a full workup, bloodwork, checked thyroid, etc...and only after that diagnosed her with a mood disorder.