@Sminismoni

 

Thank you again.

 

I appreciate your help but still am unable to make the connection.

 

Only sleeping more is the sign which I can say is matching with symptoms in article.

 

There is no anxiety, no seizures, no flu like symptoms, no movement disorders.

 

She never had any hallucinations.

 

There was mental confusion and brain fog which is far better.

 

Alto the founder of SA has been very much experienced and we all know that and she never suggested such testing and she has been very kindly helping us in the year 1 of our withdrawal at SA.

 

Pearl was unable to talk for around one year when she stopped risperidone but after that her communication is back and fine. Before risperidone she never had any communication issues.

 

Every day she goes for a walk for almost 30 mins. 

 

And she never ever had any physical symptoms in withdrawal except nausea and lack of appetite in the first year.

 

Her cognition is also steadily getting better.

 

And she is not the only one whose withdrawal has been going on since 3 plus years. 

 

If in the worst case it was encephalitis as predicted and suggested by you, shouldn't it have increased symptoms of left untreated over years?

 

So still not able to understand this suggestion.

@Pearlsmom1979 your SA thread, in the initial pages describe complete functional collapse for Pearl in the early stages, staring at a wall, not talking, rage attacks, and delusional-like thoughts (for which she was put on the Risperidone?) as well as severe cognitive impairment . You do not need all symptoms to qualify for a diagnosis e.g. seizures and movement disorders don't occur in everyone with encephalitis. I have seen one patient with this in my career and they didn't have seizres or movement symptoms. Instead they stared at a wall and didn't talk, and had bizarre, aggressive behaviourat other times. We were going to give her ECT for catatonia until we did the NMDA receptor antibody test. After that she was transferred a medical team and given steroids. She got much better in a couple of months.

 

Encephalitis does get better with time even without treatment. It is brain inflammation and inflammatory conditions by nature do get better as the body sorts itself out. However, NMDA receptor encephalitis, like all autoimmune conditions, can flare up and settle down. 

 

I will simply ask one pointed question- what have ypu got to lose by getting these tests done? We are talking about a very young girl here who is severely disabled. As I said, if they are negative you can continue caring for Pearl in the excellent way you have done so far.

Edited March 16Mar 16 by Sminismoni

@Sminismoni thank you again.

 

What I have to lose?

 

Is this something which I will get over the counter? 

 

First of all we would need a doctor to write these tests for us. And any doctor obviously would not do as I will tell them to do?

 

They would need entire history, reason , what all happened in the past etc.

 

And after that there is no surety they will write these tests for us. They might start with some medication for us and we will have to follow their route if we want the testing to be prescribed for us. And what will be the impact of those medicines on Pearl while still in withdrawal?

 

And if at the end they simply refuse to write the tests only due to their ego or whatever reason then what next? Go to the next doctor and start this all over again?

 

It's not some simple blood test like checking hemoglobin where I can easily get a prescription.

 

We really need to convince the doctor to prescribe it and I see a very low probability of any doctor doing as well tell them to do.

 

Further as to your argument about staring at a wall and others, I would still say I trust SA people and they all were well aware of all the symptoms Pearl had and it was not that only Pearl had only those symptoms.

 

I have read multiple stories at SA over the years and none of the symptoms in our case were so rare that I drag her through this horrible experience of taking to a doctor again.

 

And I will never forget it was the great doctors whose false diagnosis started All this.

 

Further as clearly stated she is getting better despite this wave coming at this stage and the waves at 3 year plus is not unheard of.

 

So with all due respect I really am unable to understand this suggestion and have no idea how to convince a doctor to write this prescription without pushing medicines on us again.

 

@Pearlsmom1979

I wholeheartedly agree with you and your caution. In Canada, it is very easy for a doctor to get court backing to force treatment on children against the parents' wishes but especially we know when psychiatry is involved, this can even happen to adults. 

Just going to a simple Opthalmology appointment and asking about the drops they were putting in my eyes, got me censure. The egos and "god" complex doctors have is appalling. 

Questioning or refusing treatment for a minor would cause so many issues.

I have followed Pearl's journey. Your family and her have done amazing.

 She is still healing...these drugs leave a long-lasting footprint.

Her body knows what it is doing, add to that all the teenage hormones.... sleep is good. 

Always trust your instincts.

❤️🙏

Thank you so much @LostinCanada

 

You are such a nice person, so full of love and always helping others, despite being in withdrawal yourself ❤️ ❤️ ❤️ 

 

What you have said is so true as we have been reading countless stories since years on SA first and now here on this forum.

 

Multiple users have reported in the past about extremely weird symptoms. I remember one gentleman from SA who could not stop himself from yelling non stop, even in public places. He was certainly not psychotic and he had healed completely.

 

All these weird symptoms do resolve with time. 

 

And it's not that we are not making any progress or Pearl is getting worse. Her cognition is getting better and better at a good pace. She is physically healthy, her monthly cycle is normal now. Her communication is also getting better and better.

 

In fact many times we have seen when we try to "treat" withdrawal, it backfires. So time is the only answer.

 

It takes different amount of time for everyone and this wave for us has come after almost 13 months. 

 

We have seen countless stories where even full grown adults lose their  cognition but it all does come back.

 

She was just 10 plus when we made the unfortunate decision of agreeing and trusting the doctor. Her character and personality was not even developed and she was given the brain washing chemical poisons.

So naturally it did impact her behaviour. She needs to relearn so many things with time it is slowly coming back to her.

 

Update:

 

The wave is getting mild and is almost passed.

 

It lasted around 5 days and anger was not bad , manageable. She just got angry when we forced her to eat or use washroom. Otherwise she just slept. 

 

Now she is back to her smiling self and enjoying her meals with family. Today she watched her favourite show for 1 hour.

 

Love and blessings for all of us here ❤️ ❤️ 

I am very glad to hear the wave was brief. Best wishes to Peal in her recovery ❤️ 

46 minutes ago, Pearlsmom1979 said:

she is back to her smiling self and enjoying her meals with family. Today she watched her favourite show for 1 hour.

Great news...I still have involuntary mutism from time to time and struggle with tv watching....though it is horrible for a child to go through this, youth is on her side when it comes to healing. 

Sending hugs to you all. ❤️🙏

Thank you @Sminismoni

 

Thank you @LostinCanada , you are so kind. I am so sorry for these symptoms, so difficult, I cannot even imagine. 

And still you manage to help people while being in withdrawal yourself.

You will heal for sure, my blessings and prayers are with you 💜 💜 

Update for records:

This was in my mind but somehow got delayed a lot.

Pearl continues to heal and small changes week by week are coming.

Her cognition is still not back to her original level and there are still gaps in her memory.

But her communication, her awareness, her behaviour and overall everything is much better and is improving gradually.

We have just returned from a nice long holiday and she enjoyed a lot.

Pearl continues to improve slowly, even though there are no dramatic changes now.

She is relaxed and mostly enjoys her day doing whatever she wants, reading, outings with family, watching her favourite shows or playing games. I am still involved with her in teaching her stuff which is required and she had missed.

We still have not tried sending her back to school as we are not sure.

The first 2 years of withdrawal were pure hell and our family, including her younger siblings just survived the phase, as her rage was bad.

We all are still recovering and for us the third year brought relief in rage, so not just Pearl, our entire family is using the time to relax and do the most essential stuff which we simply could not manage in the first 2 years of withdrawal.

We are still worried that school might bring back some of the old symptoms.

And Pearl herself has not asked so far about going back to school , so this year we will simply observe and let this healing continue.

Maybe next year her lost education will become priority, let's see how it goes.

Love and blessings for all of us here 💕 💕

Thanks for the update on Pearl @Pearlsmom1979 sounds like she is doing well. I agree, keep her stress low whilst she continues to heal, there is plenty of time to catch up, her healing right now is priority.

Thank you @Chippy , yes absolutely, there is no rush. We all are relaxing and recovering , badly needed after 2 years of rage hell.

Love and blessings for all of us here ❤️ ❤️

On 7/1/2026 at 7:26 AM, Pearlsmom1979 said:

Maybe next year her lost education will become priority, let's see how it goes.

I think this can happen without the institution of school. I homeschooled both my kids through to Grade 12. They both went on to higher education and were lauded for their learning skills, study habits, etc.

Don't sell yourself short. The teaching environment you are providing far exceeds group education in my opinion.

Thanks for the update. ❤️🙏

Dear @LostinCanada , thank you for your suggestion. Yes currently we have no plans of sending her back and in fact if she does not want it herself , we are perfectly fine in teaching her at home.

Hope you are doing better. Love and blessings 💕 💕

I am so happy for your family. Pearl is blessed to have had a supportive, loving environment to heal in. ❤️🙏