Medication changes .. Hold onto our hats

[Parents! Get help here!]

My DD had her routine psychiatry appointment today with the Dr and she , unbeknown to us , has started to develop extra pyramidal symptoms as a result of her medications . In the last couple of weeks she says her eyes have started to roll upwards and she can't control it . Suffice to say that the Dr immediately decided to reduce the medication dosage . She'll be reduced from 20mg Abilify to 10mg and the limotragine is to also be halved from 200mg to 100mg. ( both gradually over the next couple of weeks )While I'm delighted that she will definitely be less sedated and glazey eyed, I'm anxious that we might be entering into a very unstable time ! The last time her abilify was reduced her suicidal thoughts came back with a vengeance !
Regardless of my concerns , she is absolutely delighted with the prospect of lower doses . She also had her therapy appointment today and the therapist impressed upon her that if she works hard with her skills training , she has the potential to eventually be off the meds completely , but it will ultimately come down to herself . So my DD is as happy as Larry tonight, bright and cheery as cheery can be.
Meanwhile , im starting to knaw my knuckles .
Here we go ! It might be a rough ride !

[Yepanotherone]

My DD had her routine psychiatry appointment today with the Dr and she , unbeknown to us , has started to develop extra pyramidal symptoms as a result of her medications . In the last couple of weeks she says her eyes have started to roll upwards and she can't control it . Suffice to say that the Dr immediately decided to reduce the medication dosage . She'll be reduced from 20mg Abilify to 10mg and the limotragine is to also be halved from 200mg to 100mg. ( both gradually over the next couple of weeks )While I'm delighted that she will definitely be less sedated and glazey eyed, I'm anxious that we might be entering into a very unstable time ! The last time her abilify was reduced her suicidal thoughts came back with a vengeance !
Regardless of my concerns , she is absolutely delighted with the prospect of lower doses . She also had her therapy appointment today and the therapist impressed upon her that if she works hard with her skills training , she has the potential to eventually be off the meds completely , but it will ultimately come down to herself . So my DD is as happy as Larry tonight, bright and cheery as cheery can be.
Meanwhile , im starting to knaw my knuckles .
Here we go ! It might be a rough ride !

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[wendydarling]

Hi Yepanotherone

I hope all goes well with the meds reduction and your daughter feels relief from the side effects.
Has the Dr explained a back up meds plan should the med reduction cause return of suicidal thoughts?  Or perhaps the strategy is to motivate her to work on using her skills, hence the clear message from the therapist. 

I had a very useful conversation with my daughter this morning (30mins!) ahead of her setting off for her meds evaluation this morning. Her main concern at the moment is the cycle of depression returning and knocking her off course. It is so debilitating. She has been monitoring the cycle - the last phase of depression was 49 days, a spiral downwards resulting in her organising a crisis prevention plan, which was successful, an amazing achievement, top girl! She came off antidepressants during a psychotic episode in February, saying they did not work. Anyhow she is now going back on them, in addition to the antipsychotic meds she is presently taking. 

Here we go on the next step of the journey. Breath in and out Yep and let us know how you get on.

WDx

[Bright Day Mom]

We've been there w/med tailoring... .hopefully dr will check in with her more frequently during this time and it is good they will be tittering down slowly. 

Is your D on Lithium?  Only reason I ask is it helped my D w/suicidal thoughts. 

Hopefully your girl gets great results !

[Yepanotherone]

Thankyou both nope no medication back up plan mentioned , and he's not seeing her again for another month ! So I'm a bit anxious to say the least . To be fair though , he's very accessible and responsive to phone calls and we can call him during the day if we need to . I know she's been over medicated for a while now and certainly since April following her suicide attempt , he really cranked up the Abilify and limotragine. 
I'm assuming that if she's starting to have Extrapyramidal symptoms on the Abilify she would get the same kind of symptoms with any of the atypical antipsychotics out there but I may be wrong . It might just be because she's been on a higher dose though over the last couple of months . We shall see !

Bright Day, she's not on lithium no . I think Dr has been avoiding placing her on drugs that necessitates regular blood checks etc because of her age but it's certainly useful to know that that might be an alternative if she's not going to tolerate antipsychotics

[Yepanotherone]

Wendy I think that is pretty amazing that your DD managed to achieve all that , she's really taking the bull by the thorns and being responsible for her mental health . In time and as she matures , I hope my own DD can assume that same commitment and responsibility 

[wendydarling]

Hi Yep

Peace of mind you can call Dr at anytime is great. Thanks - she is doing an amazing job and I'm glad to be able to share my hope, she be able continue her journey to recovery.  In addition to the maturity daughter has gained over the last 12 months I see daughters commitment is fostered by a core of strong, healthy relationships (some family members, some of my friends, some of her friends) she has developed over the years and who have come together over the last 12 months since her diagnosis. These great people are walking with her, she feels love, compassion, acceptance, respect and this gives her strength, she is not alone and neither am I, we are a community and we have all played a role in getting to where we are now. It is said a loving environment can help promote recovery.  I can see it in action, it's truly amazing, it warms my heart and gives me hope as it's a harder slog for her than I can ever realise. Nor did I realise how important this group of people would become in her life when she was 16. Why has my daughter taken on responsibility to recover at 27? From what she told me the pain and suffering had become intolerable she wanted to get out of her body, end the pain, there was a choice, life or death. Life = treatment.  I hope your daughter is able to take on responsibility in overtime, we are all doing our best. 

Hi Bright Day Mom, how long has your daughter been on her recent meds?  Are they working?  I'm concerned we'll be constantly trying to find the right meds and never get there. The right meds will provide some stability, continuity, help daughter focus on the next 2 years DBT. Anyone know if this is achievable?

WDx

[Bright Day Mom]

Hi WendyD... .D has been on current cocktail of meds since her last hospitalization in Dec.  Swapping out meds in a hospital setting is much different than out patient; they move much quicker because the kids are safe in a locked unit with 24 hr monitoring.  This was difficult to see as D had some very, very tough days. 

There is a light at the end of the tunnel.  The change in meds made a HUGE difference in her.  My D has said she feels most "normal" and "better than she has in YEARS".  Hang in there fellow parents, Brighter days are ahead!


Yep, I know it is difficult because our D also had med changes home like you are going thru, try to keep calm and keep reminding yourself of the lessons and tools learned here.  I felt as I was more "ready" because I had the tools and skills to validate, listen and diffuse a potential bump in the road. WD is right, it is good your Psych is avail to you; don't delay in calling if just for reassurance. 

[wendydarling]

Thanks Bright Day, very reassuring to hear, though I'm sorry the change in meds was so tough, that's hard. I'm pleased to hear your daughter continues to feel much better after the change of meds, relief for her and you. 

It's hard not to feel apprehensive from time to time, generally I'm optimistic 

[wendydarling]

Hi Yep

I hope the meds change is on track and all is well with you and family?

Wdx 

[Yepanotherone]

No major hiccups so far Wendy but I'm sleeping with one eye open ! that's three nights now being on 10mg of the abilify instead of 20mg . DD is to remain on the 10mg now until we see how things are panning out . The limotrigine is now down from 300mg to 150mg and we've to get that down to 100mg over the next week . Thankyou for asking xxx

[wendydarling]

Pleased to hear all is going well Yep.  Let's see, my daughter is this week back on meds for depression, small steps. x

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[Bright Day Mom]

Yep, so glad to hear the med reduction is going well.  I've slept many of night w/one eye open too, we probably all have.

You guys are doing great... .keep on keepin on!

[wendydarling]

So here is my meds update, daughter been on anti-depressants 3 weeks and the depression has lifted, whoopee, she can concentrate on completing work, practice DBT skills etc, she is able to function is a great relief to her.

Blood results show high levels of prolactin. GP thinks it's the antipsychotics causing this as she has had no period since starting to take them, so this medication is now halved. Waiting on seeing the outcome of this change.

Yep, I do hope all is going ok?

 

[Bright Day Mom]

WD, wow, I 've never heard of loss of period from these meds, who knew?

You know what to do, you are always so supportive to her. So long as she knows to come to you if she starts feeling any ill effects from the reduction you'll be fine.

My D had a rough couple of days this past week because they finally got her off Effexor XR (YAY)!   I've read they can feel withdrawal-like symptoms and she was on quite the emotional roller coaster, but thankfully when I saw her yesterday she said she's feeling much better.

Good luck to you guys, let us know how she's doing.

[wendydarling]

Hi Bright Day

That's great news Bright Day, what a relief - so pleased your daughter is feeling better after the withdrawal - it really is a tough journey for them, working their best to control emotions through skills and whoosh - the rug pulled from under their feet with med changes. Gold star to your daughter  

The antipsychotic is amisulpride and yes one of the listed symptoms is menstrual period stopping or irregular. The list is long and it kind of makes you wonder if there are other effects that are not strikingly obvious,  happening in the background. When she was feeling in crisis back in June Dr  recommended doubling the dose when she was having a bad day - knowing my daughter I reckon she's been on double dose since then. Good news is menstrual cycle has returned, watching closely ... .

[Yepanotherone]

Wendy that's excellent news that your DD is having good results with the antidepressants , that's just fantastic  I know that the depression returning was one of your DD's worst fears .

Bright Day , I wouldn't be surprised with ANYbsode effects from the antipsychotics ! My DD has her psychiatry follow up appointment today after reducing the dose of the Abilify from 20 to 10 mg . and also the limotrigine from 300 to 100 mg/ The DR was  happy with her progress and there is no ill effects so far with the reduction thank goodness ! My DD seems bright , cheery , chatty and motivated again over this last month , long may it last ! She's still getting involuntary eye movements but far less than was occurring before the meds reduction , so she might need to reduce the Abilify even more to 5mg but the Propanolol has been increased to see if that can control the eye movements over the next week . If not , the Dr will reduce the Abilify to 5 mg which is REALLy scary thought ! But says he will increase the Trileptal . He doesn't want to mess too much more with the meds because she's in a good stable place right now .
We shall see what the next week brings , one things for sure the involuntary eye movements has to be stopped .
Interestingly , he said he will very likely need to increase the limotrigine again around Thanksgiving . He was THAT specific ! He said it's unbelievably common to see a dip in mood and more symptoms of depression arising " right after thanksgiving "!

[wendydarling]

Hi Yep, thanks - wonderful news your daughter is doing so well bright, chatty, motivated - it's so heartening seeing them progress.  I hope you get comfort from your Dr's approach - not to mess too much more with the meds as daughter is in a good stable place right now.  Got my fingers crossed for you, this weeks med change addresses the involuntary eye movement. Interesting to hear the Dr planning ahead for Thanksgiving ... .not celebrated here in the UK though I have been thinking of the winter ahead, last year we bought a SAD lamp, daughter used it, I'm not sure how effective it was, certainly the act of self care was a positive thing to do. We've been talking about changing bulbs in the home to daylight bulbs as some of our lighting is pretty dim. I'm also planning a short winter get away to the sun next January... .

[Bright Day Mom]

Hi Yep and WD - it certainly is a balancing act with the med management. For my D's case they want to get her down even more before she leaves Residential, makes sense as they have round the clock staff.

We have to all continue 1 day at a time and do our best to keep them on track.   

Have a great one... .taking my girls jet skiing today, the weather is perfect!

[wendydarling]

I'm finding this meds thread immensely helpful, thank you both - in the moment and also looking ahead. Bright Day a further reduction in meds ahead of your daughter returning home?  Why, is it because she is replacing pills with skills, that is the goal?  As my daughter is 28 I'm not party to the strategy, yes at times she tells me ... .other times not, it's her life and I trust her and she knows that.

Anyone else out there going through meds, its good to talk.

WDx

[Bright Day Mom]

WD, the goal is somewhat like you said... .replacing pills with skills and also she was in serious crisis when beginning the "cocktail" and months have past since. The residential Psych wanted to begin reducing meds back in Feb when she first joined the house and my DH and I said NO WAY!  She had already missed 2 months of school and was finally functioning and non-suicidal.  My D is only 16 and was on 2 anti-depressants, 2 mood stabilizers, and a couple additional add-ons... .way too much, but unfortunately very much needed.  Now that's she's kicked Effexor, we're down to 1 anti-depressant and will see what's next on either the cutting block or reduction.  Hoping to have all done by next month if not by discharge in October (HOPEFULLY).