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Glosmom: my daughter's taper

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Glosmom

just want to thank everyone here who posts.  I am managing my daughter's withdrawal.  She doesn't speak much so i have to gauge her withdrawal by her eating and sleeping habits as well as when we 'see her old personality' show up for a few minutes a day.  When she can concentrate on a video or a movie, play Uno, or listen to her spotify.....we know she is feeling better.  THe tapering is so slow and i want her off this med, but watching her body is my only key.  It is an amazing process to see this sweet child who has no idea why this is happening, go through this process. Those of you who can speak and share are my light.  Peace 

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Gridley

Hello, Glosmom, and welcome to survivingantidepressants.com.

 

I have moved your post to the Introductions and Updates forum, where more people will see it.  This is your thread where you can ask question and give updates.

 

I am glad you're being careful and slow with your daughter's taper.  Please be aware that, as slow as you are going, it is a bit faster than SA's recommended tapering speed, which is no more than 10% per month with a four week holding period each month to allow the central nervous system to stabilize.  This approach is a harm-reduction method to minimize withdrawal symptoms.  Some people can taper faster and some have to to taper much slower.  This link explains the 10% per month taper:

 

Why taper by 10% of my dosage?

 

Here are some more links that might be helpful:

 

Dr Joseph Glenmullen's WD Symptoms Checklist

 

Non-drug techniques to cope with emotional symptoms

 

Windows and Waves Pattern of Stabilization

 

Brain Remodelling


Video:  Healing From Antidepressants - Patterns of Recovery

 

How do you talk to a doctor about tapering and withdrawal?


What should I expect from my doctor about withdrawal symptoms?

 

success-stories-recovery-from-withdrawal

 

These are the only two supplements which SA recommends:

 

Magnesium

Omega-3 Fish Oil

Edited by Gridley

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powerback

Hi glosmom ,your daughter is  lucky to have you fighting for her like this ,from someone that has been ripped apart by this process but getting stronger in my soul from the fight  ,good on you and total respect to you .

PB

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nz11

Glosmom how is your daughter going...any update.

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Glosmom

Hi NZ11,

Sorry i missed your post. I don't think i navgate this site very well. Glo is hanging in there. We have held her at 0.65 for almost 5 weeks now because she has been struggling with what we call 'terrors.'  She will have fits of rage and anger that show up for about 5 to 20 minutes at various points of the day.  Glo (before this all happened) was the sweetest girl in the world. never angry always loving....so this behavior is terrifying to watch. It comes and goes and is actually subsiding (less times during the day and shorter periods...now just happening a little before bed) the longer we hold her here. It is probably a result of us tapering too fast in the beginning so we are doing better about watching her symptoms.  The good news is at this lower dose we are seeing more of her sweet personality show up too. She talks about wanting to go on trips, go to camp, see grandma and she will play on her ipad and even do a little writing/coloring and puzzles.   So she is no where near who she was before all this happened but we are encouraged by the lower dose and seeing more of her 'show up' at times.  We are thinking about decreasing her a bit next week if she holds steady so fingers crossed.

 

Thanks for asking NZ and i hope all is well with you!

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Banana121

Hiya, Glosmom. I wanted to ask how you started the taper again when you realised that you were going to fast?

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Glosmom

Hi Banana121,

We see her sort of stabilize in her actions and functions throughout the day.  She lives half time with her dad and half time with me, so fortunately there are 2 of us watching her behavior, sleep schedule, appetite and moods.  We notice that her moods and/or behaviors are more similar from one day to the next (no wide swings of anger, sadness or apathy)  We notice her smiling more, being able to focus more on vidoes, her music, doing puzzles, etc.  So when we start to see consistency we know she is through that withdrawal phase (her worst days are usually over by day 10 after a drop and then she really starts to do well at week 3).  We then let her rest/hold a week or two more with that consistency and then we plan the day to do the next decrease.  So it is a bit of a different approach then someone who is able to verbalize how they feel but we see the pattern each time, so that gives us a bit of comfort.

 

Hope that helps!

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Banana121

Thanks a lot that really helps. Sorry I haven't replied sooner. I have been so busy with my brother and It's made me feel really down from just watching him go through withdrawal, the mood swings, anxiety and pacing. Unfortunately, he has stopped taking his medication while he was on holiday. So I wanted to ask how you reinstated your daughters medication and by how much from when you first tapered her off because I am struggling to know how to go about from here and I am scared of him getting an adverse reaction. I really relate to you, thanks.

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powerback
10 minutes ago, Banana121 said:

Thanks a lot that really helps. Sorry I haven't replied sooner. I have been so busy with my brother and It's made me feel really down from just watching him go through withdrawal, the mood swings, anxiety and pacing. Unfortunately, he has stopped taking his medication while he was on holiday. So I wanted to ask how you reinstated your daughters medication and by how much from when you first tapered her off because I am struggling to know how to go about from here and I am scared of him getting an adverse reaction. I really relate to you, thanks.

Sorry to interject here glossmom,hi Banana ,what you say here is very real ,you need to have a strategy to keep your stress levels down ,there is a real situation  that you can get   yourself into here and  its called compassion fatigue ,I have barely been around my family for months because when I'm bad its too hard on my mam ,shes learned to distinguish between withdrawl and the real me but its been very hard on her .

As I said before your a brilliant sibling but you need to find the line between help and caring and making yourself unwell .

 

I'm similar to you in the fact I've spent countless hours trying to save my brother from what I see coming he's way  because ive been there and done all the mistakes he carry's on doing but I'm stepping back slowly now .

Total respect to you .

Take care  

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Glosmom

Hi Banana121 and powerback,

Interject away! Fine with me....the more minds working on these issues the better :)  I agree with powerback...setting boundaries is very important.  I have a long history in growing and learning how to deal and cope with my daughter. She is mentally handicapped so it took years as a mother to learn to deal with wanting a 'normal' daughter and getting a 'special' one instead. Through that process i ultimately realized i needed to take care of myself first (see friends, visit family, exercise, eat right, enjoy life) if i was going to be able to take care of her.  Through the years she grew into a very sweet girl, l learned to just let her be and still be myself,  and we had a very simple but sweet life.  The set back that occurred with her 2 years ago was FAR WORSE for me to deal with....so that took a little longer for me to get back to the same conclusion....I needed to take care of myself first, in order to be around to take care of her.  I was very mad, sad and depressed in the beginning of her psychosis issue (becase a medicine wiped out my beautiful daughter); but ultimately, thanks to this site and other stories of people finding ways to get back to their 'normal' self or close to it, gave me peace that we just needed to take the time and let her body and mind lead the way.

 

So, my initial dream to 'get her off this med' failed miserably as most of us on here find out.  So after the cold turkey we did in January of 2017 ( i still hadnt found this site) we reinstated her all the way back up to her 1.5mg dose after three weeks of her not getting better.  I do wish i would have known that we could have tried a lower dose (so I am thinking .5 mg) and just held her there until she stabilized.  But we didn't and so be it, can't do anything about it now.  She did settle after 2 months at the 1.5mg and then we tapered again. She did good with the first decrease to 1.25 but we, again, tried too soon and with too big a decrease to 1.0mg.  I found this site and so we finally began the 10% (actually it was more like 7%) tapers throughout 2017.  In 2018, we have done a few larger tapers (15%-20%) Only because she was having withdrawals with every decrease and so I talked it over with her dad and we said, "if she is going to stuggle no matter what the decrease, let's try a little bigger one to see what happens."  We did find that she followed the same pattern....day 1 and 2, she was happier and more alert, day 3 to 4....crash and awful until day 8 or so. Then she started to SING and smile off and on after that and then through week three have waves and windows but get progresively more stable.   As she has gotten lower on her dose (below .65mg) we have really seen more windows of her talking and singing. So we know 'she is in there'   After her last decrease, she did wander around more, have a 3 day stint of increased urinary frequency which we had never seen before.  So we are holding her until after her brothers wedding in June. We know her brain needs to rest after two larger decreases.

 

So as far as your brother goes....and of course i am not a doctor and the moderators on this site know much more than me....consider reinstating at a lower dose than he was on....and then hold for at least 3 months and see where he lands.  If he is still having a lot of symptoms after a week or two at your reinstated dose, maybe up it a little...and just keep holding.  We did eventually end up at her original dose, when she did her first too fast taper/CT, but i think that was before we knew it takes her 3 weeks to settle down after any decrease.  

 

So good luck Banana and be kind to yourself.  You can't fix them.  Who knows why we have to watch the one's we love suffer.  I have no idea. My beautiful daughter certainly doesn't deserve it.  But she seems to mind less about things than i do, so i just have to love her and know i am doing the best i can to take care of her but that doesn't mean i forget to enjoy life myself too.  That is all any of us can do. There is no quick fix in this.....patience is all of our best lesson.

 

Peace, Glo's mom

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Banana121
On 11 May 2018 at 5:16 PM, Glosmom said:

Hi Banana121 and powerback,

Interject away! Fine with me....the more minds working on these issues the better :)  I agree with powerback...setting boundaries is very important.  I have a long history in growing and learning how to deal and cope with my daughter. She is mentally handicapped so it took years as a mother to learn to deal with wanting a 'normal' daughter and getting a 'special' one instead. Through that process i ultimately realized i needed to take care of myself first (see friends, visit family, exercise, eat right, enjoy life) if i was going to be able to take care of her.  Through the years she grew into a very sweet girl, l learned to just let her be and still be myself,  and we had a very simple but sweet life.  The set back that occurred with her 2 years ago was FAR WORSE for me to deal with....so that took a little longer for me to get back to the same conclusion....I needed to take care of myself first, in order to be around to take care of her.  I was very mad, sad and depressed in the beginning of her psychosis issue (becase a medicine wiped out my beautiful daughter); but ultimately, thanks to this site and other stories of people finding ways to get back to their 'normal' self or close to it, gave me peace that we just needed to take the time and let her body and mind lead the way.

 

So, my initial dream to 'get her off this med' failed miserably as most of us on here find out.  So after the cold turkey we did in January of 2017 ( i still hadnt found this site) we reinstated her all the way back up to her 1.5mg dose after three weeks of her not getting better.  I do wish i would have known that we could have tried a lower dose (so I am thinking .5 mg) and just held her there until she stabilized.  But we didn't and so be it, can't do anything about it now.  She did settle after 2 months at the 1.5mg and then we tapered again. She did good with the first decrease to 1.25 but we, again, tried too soon and with too big a decrease to 1.0mg.  I found this site and so we finally began the 10% (actually it was more like 7%) tapers throughout 2017.  In 2018, we have done a few larger tapers (15%-20%) Only because she was having withdrawals with every decrease and so I talked it over with her dad and we said, "if she is going to stuggle no matter what the decrease, let's try a little bigger one to see what happens."  We did find that she followed the same pattern....day 1 and 2, she was happier and more alert, day 3 to 4....crash and awful until day 8 or so. Then she started to SING and smile off and on after that and then through week three have waves and windows but get progresively more stable.   As she has gotten lower on her dose (below .65mg) we have really seen more windows of her talking and singing. So we know 'she is in there'   After her last decrease, she did wander around more, have a 3 day stint of increased urinary frequency which we had never seen before.  So we are holding her until after her brothers wedding in June. We know her brain needs to rest after two larger decreases.

 

So as far as your brother goes....and of course i am not a doctor and the moderators on this site know much more than me....consider reinstating at a lower dose than he was on....and then hold for at least 3 months and see where he lands.  If he is still having a lot of symptoms after a week or two at your reinstated dose, maybe up it a little...and just keep holding.  We did eventually end up at her original dose, when she did her first too fast taper/CT, but i think that was before we knew it takes her 3 weeks to settle down after any decrease.  

 

So good luck Banana and be kind to yourself.  You can't fix them.  Who knows why we have to watch the one's we love suffer.  I have no idea. My beautiful daughter certainly doesn't deserve it.  But she seems to mind less about things than i do, so i just have to love her and know i am doing the best i can to take care of her but that doesn't mean i forget to enjoy life myself too.  That is all any of us can do. There is no quick fix in this.....patience is all of our best lesson.

 

Peace, Glo's mom

Thank you oh so much! Your advice is really helpful. The support here on this website is amazing. My brothers reduction patterns are similiar, he does better after 10 or so days. Im thinking of doing a really really low dose at first to test the waters as I have read so many horror stories on adverse reactions on reinstatement. 

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SkyBlue

Hi Glosmom, 

 

I'm glad your daughter has you and her father for support, and that you're now going by 10% per month.

 

I just wanted to make sure, are you and he both on the same page as far as taper rate, desire to taper, etc.? 

 

It is quite a challenging situation and I wish for strength for you all. < 3

 

 

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Glosmom

Hi SkyBlue, Yes we are on the same page.  Even though we are divorced both of us have always worked well together where our 3 children our concerned, especially Glo since she is unable to live independently.  So it is actually very comforting to have someone else have eyes on the situation and be able to bounce ideas and thoughts off of. He is not reading stuff out there on the internet so he can sometimes be a good voice of reason when i start to ruminate to much about what we should or should not be doing. :)

Thanks again for checking in with me!

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SkyBlue

I'm so glad. And you're very welcome!

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NicoBicko

Hey glosmom, how is your daughter? Your remind me on my mother :) you strategies to cope with the situation are great, especially that you take care of yourself. The worst thing for my mother was, when she totally isolated herself because of my disease and stopped meeting her friends. But she realised quickly, after the situation became more and more tense between us, that she need time for herself to recharge energy. I feel strong symphaties for you because I was in an similar age to your daughter when I got ill. I wish you and your family all the best for the future :)

 

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Glosmom

Hi NicoBicko, thanks for checking in on Glo and for your very kind and supportive words!!  She is hanging in there. Last drop in dose has been tough on her but we are holding steady and waiting for her to stabilize.  I have to constantly remind myself that this all takes time and she can't be healed over night.  I do fear i will never get my sweet daughter back, so am trying to accept my 'new' daughter and not compare her to who she used to be.  We do have happy things going on in our family (her brother is getting married in June) so we are trying to expose her to as much as we can without making her stressed out and i am trying to let go that happy things are going on even though she doesnt really want/or cant participate.  In the end, i am choosing to be grateful for whatever we have and that makes me able to laugh and find joy throughout the day.

 

Thank you again for your support and i hope that you are doing okay too!

Peace,

Glosmom

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Glosmom

I feel very compelled to share this painful lesson in an attempt to potentially help others. There is somewhat of a happy ending so bear with me if you are interested.

 

 Glo is my special needs daughter and she lives with me and also her dad.  She goes back and forth between our houses each week. We are committed (even though we are both now married to other people) to help Glo get off this poison med (risperdal).  She became psychotic after taking prednisone for hives (4 days on it only...never got better so started risperdal in oct 2016) and so it has been a rough journey for the last 2 years.  We typically communicate well on when we administer Glo's dose and for what amount.  We were on a 'stabilization' period (or so we thought) for the last 7 weeks as we wanted her to be as good as she could be for her brother's wedding (which is in 2 days)  We also wanted her to be good for when she went to camp back on June 3rd...but she wasn't able to go because she was not doing well. We agreed back on April 26th when we 'dropped' her to .41mg to stay there until after the wedding.

 

Glo has been struggling with pacing, confusion, urinary frequency and insomnia and many other things.  It was worse in the beginning but she did get a little better over the weeks but i have been disappointed with how many symptoms she has continued to have over the last several weeks and have not seen any stabilization....  Insomnia being the worst and anger spells and confusion.  I kept reading how 'holds' made people feel better and so we just kept saying, we will just 'hold' her longer.  He and i both discussed how she just might not ever return to her normal sweet happy beautiful self.

 

He came to pick her up from my house yesterday and so i took the syringe out to him so we could talk about 'what dose are we going to next' and when we were going to go there after the wedding.  As we were both looking at the syringe he said, "i am not giving her that dose (.41mg)...I am giving her this dose (.46mg)"  This is approximately a 10% difference in dose, fyi.

Well needless to say I wanted to vomit and then i wanted to hit him.  I did neither but spent the evening after he left being mad and sad. I cried a little and was just sick to my stomach with how my poor Glo has been struggling because we have been giving her two different doses.

 

Once i got up this morning, i went back over my journal that i keep of her sypmtoms, doses and days between her dad and i.  The pattern showed up very clearly.   She would do better at his house and get worse at my house.  Back and forth, back and forth...her dose would bounce between .46 and .41 whenever we switched houses (which was at least once every week)

 

This poor baby has been in central nervous system hell for the past 6 1/2 weeks INSTEAD of in the stabiliaztion period we thought we were in..............oh my god........ how awful, huh?

 

Well the good news is, i didn't hit him or yell at him. :)  I found the pattern, we talked it over and landed on a plan to give her the SAME dose (.44) until she stabilizes. Glo is going to feel better soon!!!!.... now that we know we have been jacking her brain around.  She will one day finally get off this drug.  I have hope that she may one day return to a happier and more stable  self.

 

VERY IMPORTANT LESSONS:  Although we knew consistent dosing was key...we weren't giving her a consistent dose.  This up and down caused major symptoms.  Always take the same dose at the same time every day.   10% is a big difference in how someone feels and functions.  The reason she was not doing well and felt bad was because she wasn't in a hold pattern. Some of you may be struggling....it could be because your doses are not consistent.  It could be because you haven't held long enough.   Don't give up.....Don't get mad.....Get determined....Have Hope...... I am postive i will report back that Glo is doing better in a week or so.

 

Thanks for listening.......Glosmom

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Altostrata

Brilliant, Glosmom!

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Carmie

Great post Glosmom💚

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