PearlsMom1979: Boiling Rage/Anger and Cognitive Decline

[PearlsMom1979]

Pearl was 10 when she had some anxiety and hormonal issues and started having crying spells. She would go to her room and start crying. She was given Antidepressant for that. Initially it helped but then within 2 months she reached tolerance. So dose was increased.  Higher dose worked for 2 more weeks. Then crying spells returned in worse intensity along with some mental confusions and distorted thinking. A benzo was added along with Antidepressant. No improvement was found. She started showing behavioral changes, psychosis symptoms (delusions only , no hallucinations). An antipsychotic was added. By the time we realized the drugs are harming her more, and are not the cure, it was almost 7-8 months. We started discussing with doctors and tapering was started. Tapering was done over a period of 1 year.
She suffered bad withdrawal symptoms:
Loss of sleep
Crying spells returning
Anger/Rage
Zombie/Glazed look
Entire day sitting at one place , not doing any thing
Hygiene went to hell
Memory and Cognitive decline

She stopped going to school at this point. We also supported her as she was not able to comprehend what was being taught and it was giving her stress because she was not able to understand.

She is drug free from 4 months. Still boiling rage is continuing. Some of the mental confusion/delusions are coming back. Cognition is not at all getting better. She is now 12. 
Even if we look at her, she starts throwing stuff at us. 
I being her mother is taking care of her hygiene and health.
It will be 5 months of being drug free this week and still not much of an improvement. She is my child and her suffering like this is too painful for me.

Is there any way I can speed up the recovery? 

Edited July 9, 2023 by manymoretodays
name to topic title

[PearlsMom1979]

Am I posting it the right way? I don't know if this was the way and right head as my post is not getting any further. Please help me if I posted under wrong link or something.

[manymoretodays]

Yes, your post is fine.  It may take a day or two until a moderator gets to it, to get you started.  Thanks for your patience.

[PearlsMom1979]

@Manymoretodays : Thank you so much for confirming it.

[Altostrata]

Welcome, @PearlsMom1979

 

This is very, very difficult. I am sorry this happened to Pearl. Can Pearl describe how she feels?

[PearlsMom1979]

Unfortunately no, she has not spoken from last one year. She has stopped expressing herself. She does not even answer when we ask anything. Not even a simple yes or no.

[PearlsMom1979]

I forgot to mention thank you so much for approving me and I am so glad I found this place. It's wonderful and great work you are doing here. 

I am still understanding how to use the site so if I make any mistake please accept my apologies in advance.

[PearlsMom1979]

21 minutes ago, Altostrata said:

Welcome, @PearlsMom1979

 

This is very, very difficult. I am sorry this happened to Pearl. Can Pearl describe how she feels?

I want to understand is it common to feel this type of aggression after 5 months of being drug free?  

[manymoretodays]

Hi PearlsMom1979,

 

How old is Pearl now?  never mind, I see that Pearl is 12 now(in your narratives)

 

1 hour ago, PearlsMom1979 said:

I want to understand is it common to feel this type of aggression after 5 months of being drug free?  

 

And yes, fairly common. 

See:  Neuroemotions

In trying to find our topic on anger and rage, I found this on google which does have some non-drug coping ideas for parents.  Just disregard all the diagnostic labeling there, as very likely this behavior is WD.

Anger Management for Kids and How to Deal With - Child Mind Institute

 

Okay, found it, our topic on:  Managing anger

 

Welcome aboard PearlsMom1979,

Love, peace, healing, and growth,

manymoretodays(mmt)

Edited July 10, 2023 by manymoretodays
got the age

[PearlsMom1979]

7 hours ago, manymoretodays said:

Hi PearlsMom1979,

 

How old is Pearl now?  never mind, I see that Pearl is 12 now(in your narratives)

 

 

And yes, fairly common. 

See:  Neuroemotions

In trying to find our topic on anger and rage, I found this on google which does have some non-drug coping ideas for parents.  Just disregard all the diagnostic labeling there, as very likely this behavior is WD.

Anger Management for Kids and How to Deal With - Child Mind Institute

 

Okay, found it, our topic on:  Managing anger

 

Welcome aboard PearlsMom1979,

Love, peace, healing, and growth,

manymoretodays(mmt)

Yes Pearl is now 12. I will go through all these links , thank you for sharing 

[PearlsMom1979]

I am going through the links shared by wonderful people here and I am finding useful tips how to handle Pearl's rage when she is in such mood. One useful tip which we have started implementing is that leave the space when she is angry. We were so far trying to calm her down but she was getting more irritated with the effort. Now from yesterday twice I have left the room when she starts throwing stuff at me and both times she has relaxed in few minutes.

We are really hoping for this phase to pass soon, as before she was drugged, Pearl was the most gentle loving kid in her class and she has always scored "stars" not only for her performance but for her behaviour as well.

One thing which I am not understanding and wondering if anyone has any answer and can help is that her cognitive abilities and memory has degraded a lot. She is not able to recall her science and maths concepts. She does not remember much about her extended family and friends. But she has not forgotten her spellings. Sometimes when she is in good mood, I read a story and insist that she writes whatever I am reading. She writes without a single misspelling. But she cannot add 2+2.

I fail to understand this!

[Altostrata]

It's important that Pearl opens up to talk to you. We cannot even guess what's going on until we hear from inside Pearl.

 

Perhaps she feels angry and mistrustful because she's gone through periods of feeling bad from drug treatment. Does she still feel bad? We need to know her current symptom pattern.

[PearlsMom1979]

57 minutes ago, Altostrata said:

It's important that Pearl opens up to talk to you. We cannot even guess what's going on until we hear from inside Pearl.

 

Perhaps she feels angry and mistrustful because she's gone through periods of feeling bad from drug treatment. Does she still feel bad? We need to know her current symptom pattern.

Thank you for responding.

Yes I understand and we do encourage her gently everyday.

Sometimes she does communicates if she needs something.

The only emotion which she is showing these days is anger. She used to cry also after being drug free but it has stopped now.

It's going to be 5 months of being drug free. Now she is starting to read and watch her favourite shows sometimes.

She sleeps well. She eats well. Overall physically she seems fine. Apart from being non expressive/silent, anger, memory issues and cognitive decline we have not felt anything else. We are trying our best to make her talk but so far it's not happening. We hired a counsellor also and sessions were done for few months. But Pearls answers only when she wants to. Today I was playing with our other kids and I insisted Pearl to join as well. For the first time she joined in play after months and started making animal sounds with us. These little rays of hope are my lifelines I am hanging onto.

 

 

[Altostrata]

It sounds like Pearl is improving and if you give her time and love, she'll open up.

[PearlsMom1979]

Thank you and other members of this wonderful forum

I understand this forum is mainly to help tapering and support withdrawal. I have just joined this forum and I don't know much about other posters and their experience. I try to read time to time but taking care of kids and especially Pearl is taking its toll on my health as well.

I want to know if any other user has such experience which is similar to ours. Means being silent or non expressive from almost one year and this violent rage. Today she hurled her hot milk mug at me. Almost every day she bangs stuff and breaks something or other. Today unfortunately I was the target.

I really want some hope by knowing if someone has experienced this type of rage and it ended finally and if this ended then roughly how much time. I know we all have different experience but some ray of hope I badly need.

I do not want to reinstate her on drugs. With difficulty we have survived 5 months of drug free and I don't want to go back to zero and have her brain further destroyed.

Also by what stage we know that our brains will heal or the damage is permanent?

Thanks in advance to all of you.

[Altostrata]

Perhaps @Glosmom will visit. Please see 

and

 

[PearlsMom1979]

On 7/16/2023 at 5:18 PM, Altostrata said:

Perhaps @Glosmom will visit. Please see 

and

 

Thank you Alto once again.

I am reading the links shared by you and my emotions are all over the place reading Glo's story , especially the success story!

It's so nice to read such posts , these posts are the only motivation and sunshine I am having these days.

After reading these I feel Pearl's withdrawal is also showing almost similar patterns. Especially anger issues and being non-responsive. The success story of Glo has given me really good hope.

Hoping to post my Pearl's success story one day :)

Thank you all the wonderful people in this forum, my good wishes to all!

[PearlsMom1979]

If anyone can advise how to help in conginitive decline, if it can be helped at all?

If this does not improve then it will be second school year Pearl will miss.

Although there are other options of education if she wants after this phase, but entire day she just keeps on sitting.

 

If I try to engage her in painting or dancing either she gets angry or she does not respond.

 

The only activity which she seems to enjoy is watching her favourite shows on tv. That too if I put it on she will watch, she herself does not initiate anything at all. 

 

The other activity is we take her for a walk for 20 minutes per day. That too we have to coax her , she does not show willingness to go.

 

Apart from TV and this short walk she does not do anything. Anything at all.

 

I am not sure if we should let her be or we should try to force her bit more.

 

And this child used to be a book lover type kid , who was never seen without a book in her hands. She used to love reading, used to write short stories as well.

 

I don't understand what to do anymore. I don't want to push her as it's obvious she is still not healed completely, but seeing her just sitting and staring into space is heartbreaking.

[Altostrata]

@PearlsMom1979 why do you think these behaviors are signs of cognitive decline?

[PearlsMom1979]

7 hours ago, Altostrata said:

@PearlsMom1979 why do you think these behaviors are signs of cognitive decline?

Well I am not sure but I thought so. Frankly now when you asked so I don't know the exact answer. See immediately after we dropped to zero on 14th February 2023, and somewhere from January 2023 onwards, I had tried working her schoolwork with her. She was unable to do any of the puzzles which were a cakewalk for her before these drugs. I tried explaining her but there was no response as she was non expressive from almost August last year (2022). So I felt maybe she is unable to do her class sums as she has had conginitive decline due to drugs. 

Then I was worried that if she realises that she will get scared and might sink further inside her mind. So I stopped trying to make her do her school work.

She herself never initiated anything and still does not. 

But this decline I had observed in maths sums only, involving calculation etc. She has not forgotten her language spellings. 

Mainly I  am saying conginitive decline based upon my experience with her in February 2023.

Pease help me in understanding if thus is not cognitive decline or memory impairment then what is this?

And should we gently try working her books with her or let her be for some more time?

[PearlsMom1979]

Also want to update that anger/boiling rage seems to be getting better from few days. 

 

[Altostrata]

Withdrawal syndrome can cause foggy brain and inability to concentrate as well as irritability and bursts of anger. These are not cognitive decline, we've seen them very gradually go away.

 

As with other withdrawal symptoms, they occur in The Windows and Waves Pattern of Stabilization Suggest you continue to be patient with your daughter and avoid diagnosing any of her behaviors as psychiatric disorders, as this could be discouraging to her and make her angry.

 

[Glosmom]

Hi @PearlsMom1979,

 

I am very sorry to hear about what you and your daughter are going through.  I just wanted to send positive thoughts and strength to you as you assist your daughter in her recovery.  As Alto stated above, patience is required.  Gloria got much worse before she got better, AFTER she tapered off the antipsychotic.  She continues to recover to this day and is still working on getting all her cognitive skills back.    The windows and waves will come and go for quite awhile, as each person is different.  Support her where she is at, her recovery will happen, it just takes time.  Be kind to yourself as you witness her go through all of this.   Your health and attitude is just as important as hers.  

 

Try not to put a timeframe or unrealistic goals on her or you.  One day at a time is all that is needed.  Warmest Regards, Glosmom

[PearlsMom1979]

Thank you so much @Altostrata for clarifying. I am slightly relieved if this is not cognitive decline and is brain fog then maybe we just need to wait for this phase to pass and hopefully she will be fine in some time. 

Thank you so much @Glosmom for your kind words. It's nice to know Gloria is recovering well, my best wishes to you and your family.

Pearl seems to be recovering slowly. She is smiling more often. She has started doing some basic puzzles as well. Today she was trying to read her story book also.

Anger issues are more manageable and we are able to take her out without much fear of burst-outs.

One thing which is not improving from last one year is that she is still not talking or speaking at all. 

One year of complete silence from a child who never used to keep quiet is very much heart breaking for us,she is quiet from 1 year.

The shrinks have done this to my sweet little bundle of joy. She sits in silence from morning till evening and as a mother I feel like a failure. 

Had I known the impact of these medicines I would have never given these to my child. She was just 10 at that time. Her golden childhood years are going in this way.

 

[Glosmom]

Hi Again @PearlsMom1979,

We can not undo what has already been done, so spending time lamenting what occurred truly does not assist in recovery.  Most of us regret taking or allowing our children to take these pharmaceuticals.  Hind sight is 20/20.  We must trudge forward and move through the situation we are currently in.  You listed many positive things in your last post (smiling more, doing puzzles, trying to read, reduced outbursts) that is all great progress!!  Those skills may still ebb and flow, but the fact that she is doing them off and on is a wonderful sign that she will once again, do them all the time.  Her voice/talking will return as well.  Gloria also basically became mute for about 5 years.  She is finally finding her voice again on this 4th year of withdrawal.  Everyone is different (Glo has been special needs all her life) ...so Pearl may recover hers sooner.  Again time will be the healer.

 

Hang in there.....and keep your thoughts on how far she has come from the worst of it, not from who she was before this all started. Peace, Glosmom

[Altostrata]

12 hours ago, PearlsMom1979 said:

Pearl seems to be recovering slowly. She is smiling more often. She has started doing some basic puzzles as well. Today she was trying to read her story book also.

 

This is a good sign.

 

Please read again what Glosmom wrote. Be patient with Pearl, you can overcome any mistakes you made by giving her love and nurturance.

[PearlsMom1979]

On 8/3/2023 at 10:38 AM, Altostrata said:

 

This is a good sign.

 

Please read again what Glosmom wrote. Be patient with Pearl, you can overcome any mistakes you made by giving her love and nurturance.

Thank you @Altostrata

Thank you @Glosmom

 

I am ofcourse being patient with Pearl and trying my best to help and support her in whichever way I can.

 

But I don't understand everything related to certain situations which suddenly appear sometimes and that is why I ask questions here, so that if any other user with similar experience can give us useful practical tips.

 

I do understand we all are different.

For us tapering was already over when I found this forum. It was almost 4 months of being zero drugs when we joined this forum.

 

Most of the withdrawal issues had also gone. This brain fog/cognitive decline, being completely mute from one year and her anger, these three issues seem to have struck with us.

 

At some place in this forum someone had mentioned Yoga once.

So my question is, if someone has any prior knowledge or experience of trying Yoga, is it true that Yoga actually does help in re-wiring of brain? 

 

We are thinking of enrolling Pearl in Yoga once or twice a week to see how she will take it.

[manymoretodays]

Hi PearlsMom1979.  I think so, on your question about Yoga and brain rewiring or neuroplasticity.  I'm limited in doing links due to internet problems.....but if you go to Symptoms and Self Care, it's a Support forum and hoping you can or are learning how to navigate here....you'll see in the right upper corner area a magnifying glass icon.  Click it, then enter limbic retraining in the box, and that should bring up topics of interest.  You could search for Yoga or neuroplasticity too, in that same way.  But yes.  I think so.  Someone has even got a current online Yoga link that comes up.  Ooh, hoping for the best studio and instructor for Pearl too!  That would be great.  L, P, H, and G.  mmt

[Altostrata]

Ask Pearl if that's something she would like to do. We cannot promise yoga will rewire anything, but she might enjoy it and it's good exercise.

 

Do you communicate to Pearl that you think she needs rewiring?

[PearlsMom1979]

On 8/10/2023 at 3:03 AM, manymoretodays said:

Hi PearlsMom1979.  I think so, on your question about Yoga and brain rewiring or neuroplasticity.  I'm limited in doing links due to internet problems.....but if you go to Symptoms and Self Care, it's a Support forum and hoping you can or are learning how to navigate here....you'll see in the right upper corner area a magnifying glass icon.  Click it, then enter limbic retraining in the box, and that should bring up topics of interest.  You could search for Yoga or neuroplasticity too, in that same way.  But yes.  I think so.  Someone has even got a current online Yoga link that comes up.  Ooh, hoping for the best studio and instructor for Pearl too!  That would be great.  L, P, H, and G.  mmt

Thank you @manymoretodays

I did the search as you suggested and found many useful posts about yoga and neuroplasticity 

Thank you so much again, you have always been very kind and helpful!

[PearlsMom1979]

17 hours ago, Altostrata said:

Ask Pearl if that's something she would like to do. We cannot promise yoga will rewire anything, but she might enjoy it and it's good exercise.

 

Do you communicate to Pearl that you think she needs rewiring?

I am not asking any promises or any future predictions.

 

I simply asked if anyone has experienced any benefits and @manymoretodays very kindly explained me how to find posts of people with prior experience of yoga.

 

I have also very clearly mentioned in my post that we will try and see how Pearl takes it. If she likes we will obviously continue. If she does not like we will not continue. 

 

And how do I communicate with her about something which she will not understand. It's not like asking her whether she wants to wear a red dress or yellow dress. That precisely was the purpose of saying we will see how she takes it. Then we will decide whether to continue or not. There is no chance of ever forcing her to do anything which she does not want to do. But without trying it out she will not know if she likes it or not. 

[Altostrata]

Pearl is 12. She may appreciate being brought into decisions about what she might do. This may alleviate some of her anger.

[PearlsMom1979]

39 minutes ago, Altostrata said:

Pearl is 12. She may appreciate being brought into decisions about what she might do. This may alleviate some of her anger.

Yes you are right. We did discuss it with her. But she has not started expressing herself yet so we don't know if she has understood it or not. And as usual there was no answer from her. That is why we thought to give it a try. From my experience of last one year and her overall behaviour I would get some idea at the end of one trial class if she enjoyed it or not. Then we will see from there how to proceed.

[PearlsMom1979]

Update:

We tried one yoga class yesterday for 30 minutes.

 

After that we asked Pearl if she liked it?

She does not speak but she nodded her head in affirmation.

Then we asked if she wants to go for another round of yoga.

Again she nodded in affirmation (no speech yet). 

So we have booked another class for next week.

Let's see.

Keeping our fingers crossed 🤞 and sending prayers for everyone fighting this battle along with us...

[PearlsMom1979]

Update:

Pearl is starting to answer simple questions like 20 percent of the times. 

From last one year she was completely non-verbal and mute.

From last one week we have started receiving verbal answers few times a day (not everytime, as she is still getting anger spells and if we repeat any questions she gets angry).

 

But these are Just one word answers. 

 

Sentences are still awaited.

 

Her questions or demands are still not coming.

 

Only one word answers to simple questions like:

Me: Did you finish your milk?

Pearl: yes(she spoke it)

Me: Do you want to watch tv or go for a walk?

Pearl: TV

Me: Music or cartoon or movie?

Pearl: Music

 

Such type of answers are coming in speech sometimes. Sometimes she does not and we decide by guessing, like we have been from one year.

 

 

But one issue or situation which we are not able to understand has come up.

Sometimes she starts laughing or smiling for no reason. 

 

We try asking her but she is still not able to answer complex questions.

 

Could it be part of withdrawal or she is starting to get her old memories back?

 

If any one with similar experience or knowledge can guide us?

 

Thanks in advance and praying for all.

 

[PearlsMom1979]

Hi friends,

 

 

No response to my question last time but I will try again as I have no where else to ask and discuss these things

 

Pearl is answering to simple questions more frequently.

She is browsing and listening to her favourite songs and singing along almost every time.

It's lovely to hear her sweet voice again in our house after almost 1 year of silence.

 

But she seems to think aloud or talk alone sometimes. For example she says name of her friend from school randomly.

Like once she said Adil George. I asked do you remember who he is? She did not answer that. Sometimes she mentions name of a teacher or a cousin. Sometimes she says a sentence also but I am not able to find the relevance of sentence like in what context she is saying that. If asked she is unable to elaborate more.

 

Does it mean her old memories are slowly coming back? Or talking alone or thinking aloud like this is not a good sign?

 

Please if anyone can help me in understanding this!