side effects to medications

[Loving Abbey 2]

Hey everyone, difficult child has been having side effects to her medications: tremors, headaches, mental cloudiness, and two subscales of her most recent IQ testing (specifically Processing Speed and Working memory) dropped 10 points each from 2 years ago. And those two issues seem pretty pervasive over all the other testing that has been done, and in just day to day functioning.

difficult child has been on so many medication's that didn't work at all that the psychiatrist and I were trying to alter doses and try another medication to help with the tremors, but things aren't getting much better. These medication's have worked the best by far. She's also difficult and whiney, and still has some mood liability (sp?). But nothing like the Abbey of old, but it's been so long since she was not on medication's that I wonder what the baseline really is.

The side effects of these medications are scary and I know it's all about weighing the side effects with the benefits to quality of life. So I am thinking about a "medication holiday" if it's still called that. I was thinking about timing, but there is no good time. I don't want it to interfer with school, but the summer is much less structured and would add to any of the potential behaviors. I can take a week or so off but that's not nearly long enough.

She has had one noted improvement: Until the age of 4 (when she first went on medications) she never slept through the night, slept very few hours and had night terrors when she slept. Seroquol was eventually the life saver for the night time BiPolar (BP) symptoms. We have been tapering her off of the Seroquel (from 100 mg am, and 300mg at bed, to just 100 mg at bed-decreasing next week to 50mg) and she is still sleeping (does get up once a night for a drink and the bathroom) but goes right back to sleep.

So I just wonder what else has improved? I hate her being on this heavy duty medications. I'd like to see how much is really necessary. I'm fairly certain the psychiatrist will support this if I told him it's what I wanted to try--he has always heard my concerns and given me choices and a strong voice in Abbey's treatment.

Thoughts, opinions, feedback????

Also, please note: I will not put her in a psychiatric hospital for this.

 

[ML]

Is there anyone else that you trust that could help you with this over the summer? Like if you take a week, and another family member or friend took a couple of weeks just maybe you could swing it? You're a great mom, that much is clear. Wishing you the best with this. Hugs ml

 

[BusynMember]

She's on A LOT of medications. I don't know how some of them affect you or even what they are. I do know that a too-high dose of Lithium can cause really bad side effects because it happened to me. I was so foggy I felt as if I were walking in a dream and I just hated it. I'm sure I seemed less hyper because I was zombied out. I'm quite sure I couldn't have produced at school while in that state. Do you have regular Lithium draws?
My son was on Lithium/Seroquel for three years, although I didn't really see a need for it (and am now sorry I had him take them for so long). He wet the bed every night on Lithium and became spacey and quiet. His school performance did decrease. Once we concentrated on his autism, he was weaned off medications. Now that he's medication-free he is learning things by leaps and bounds so clearly, at least in his case, the medications had a big effect on his academic performance. I'd personally want a second opinion on all those medications and want my child off any that weren't absolutely necessary. Maybe the Aspergers is causing some symptoms that mimic bipoar. That was another thing that happened to my son. Are you sure she doesn't have Aspergers only? These kids can rage with the best bipolar kids, especially if they don't get school supports and interventions. Just a thought...have you taken her to a neuropsychologist?

 

[gcvmom]

Is the propranolol to help with her tremor?

My difficult child 2 takes that because his hands were very unsteady and we thought it was because of the Depakote and stimulants possibly... it never really helped the tremor, AND I just learned today the real cause of his tremor (it's actually Sydenham's Chorea) so he'll probably be coming off it next week.

I would also vote for rounding up support folks to help you with a drug holiday over the summer. Any family or friends you can rely on for a big favor like that? That's really the best time for it, even if things are less structured than during the school year. You can work around that with planned activities or a daily schedule.

We went through a medication wash last summer because of all the problems difficult child 2 was having -- I felt like I didn't know who this kid was anymore or what medication was causing what behavior/side effect. I needed to just start over from square one. That was a rough period, but I'm glad we did it, because he'd been on stuff since he was 5 (he was 10 1/2 at the time) and we had seen an evolution of symptoms which made things complicated. Now we have a better idea of what we're dealing with, I think. (AND he's getting a neuropsychologist evaluation at the end of the month).

 

[timer lady]

Your difficult child is indeed on a boatload of medications. That isn't a judgement by the way, just an observation.

We've never ever taken a medication holiday here. It simply wasn't worth losing the little bit of stability that the medications offer. And I personally didn't think it was fair to take away a valid medication - I wouldn't do it for diabetes or epilipsy - I won't do it for bipolar or any other mental/emotional illness.

I wonder, however, if you don't have some kind of medication interactions that are playing havoc with your difficult child. I do know that there are some psychiatrists that instead of stopping one medication, just add another - especially to treat a "simple side effect". I never allowed that.

This is a tough decision. I let you know personally what I'd do. You really have to sit down & write out the pros & cons; work out what kind of help you have if there is a crisis. Will psychiatrist support this & then is psychiatrist willing to start up treatment if there is the need again?

Good luck whichever way you go.

 

[SRL]

I remember how unstable she was and how extreme those reactions were and am glad you found a combination of medications that work.

One thing that I will mention ifor you to factor in is that we were in a situation where we d/c a medication for side effects and then needed to add it back again. The second time the side effects his much harder and much faster (almost immediate within the week vs. gradually over months) and it took longer to shake out the effects.

 

[tiredmommy]

I think, due to her complexity and the number of medications she's on, I'd push for an in-hospital medication wash if you go for it.

 

[smallworld]

Sorry -- I have more questions than answers:

Would you post the doses/times of each medication she's on?

Lithium can cause tremors and cognitive dulling. Has she had a Lithium level drawn recently? Have any other mood stabilizers ever been tried?

Why is she on both Abilify and Seroquel? by the way, APs can cause "flat" affect, which can look like mental cloudiness.

Why is she on two laxatives? Miralax, given daily, should be able to do the trick.

Why is she taking Propranolol?

Singulair can cause headaches (it happened to my daughter). Have you considered other allergy medications instead?

I hope I can give you more feedback once these questions are answered.

 

[SRL]

I think, due to her complexity and the number of medications she's on, I'd push for an in-hospital medication wash if you go for it.

This is one of those opinion areas we so often run into around here! Not to be contrary , but I'm of the opposite opinion.

Outside of side effects, this kiddo is having the first stable period in her young life. I'd favor not doing a medication wash but do a gradual adjustment because it's highly unlikely she can go medication free. Reduced dosage or reducing numbers of medications, yes, but to put her through the trauma of withdrawing them in a relatively short period of time, no. I recently had an adult friend who did a medication wash of 4 medications and it was BAD--she had 36 hours totally blanked out where she doesn't remember a thing.

Of course, this is my opinion only, but since you're asking, I thought I'd toss it out there. You also might want to consider a sleep study to find out what's really going on with that sleep.

 

[tiredmommy]

SRL- I just mean anything more than a minor medication tweak ought to be done in-hospital for Abbey because she is so complex.

 

[Loving Abbey 2]

Wow! so many replies!! LOL! I'm not sure where to start but I'll try to hit on them all. Lithium levels are drawn every 3-6 mos. Her levels have been low so that is why we finally increased last month-details below.

I will not under any circumstances hosptialize Abbey (except for a life and death situation). It's not a judgement on parents who do, it's because of her history. He dad died when she was 2 1/2 and she has had attachment issues. Over the last year or so she has finally become comfortable that I'm not going to leave her too. She can only tolerate one night out on a sleep over with my aunt who we used to live with, or her grandmother. She wouldn't be able to handle a hospitalization.

So here are her current medications:

Lilthium 300 mg am, 450 mg at bed (this was increased 1 mos ago from 300 mg am and pm)
Seroquel 100 mg at bed with planned decrease to 50 mg
Abilify 7.5 mg am (an increase from 1 mos ago from 5 mg)
Propranolol 10 mg am, 10mg at 2pm (added for tremors 1 mos ago)
Senna Laxative 8.6 am
Miralax 1 tsp am
Singular 5 mg bed (works the best for her allergies)
Levothyroxine 88 mcg

I was called today by her school because she had another headache that she went to the nurse for a couple of times so they called. I had my aunt pick her up early since I was over an hour away. I then called her psychiatrist. He was out until Tues. so they had the covering psychiatrist in the same office call me. He had her file and went over the medications and my concerns. He told me to change the medication doses to see if it didn't help (all the changes were lower). He said he found that Abilify at the dose she was on can result in irritability and the Lithium dose may be accounting for the headaches. He did mention any of these medications may be causing the cloudiness. So here are the changes:

Lithium 300 mg am and pm
Seroquel 50mg a bed
Propranlol discontinue

He told me to decrease the Abilify to 2.5 mg, if she continue to tremor or continued to be irritable after a few days, then discontinue and add 1/4-1/2 of a 25 mg tablet of Seroquel. He seemed to think a very small does of the Seroquel might be more effective than a larger one.

She is on Abilify and Seroquel because a few mos ago her behaviors were increasing and an increased dose of the Seroquel was making her very tired all day and hard to get up in the morning. So the psychiatrist suggested we decrease the seroquel until gone and add and increase the Abilify. this was so she wasn't without medication. As for the two laxatives. This last year shhe was in a bad cycle of diarrah and constipation, resulting in encoprisis (cause yet to be determined-that's a whole other thread in Natural treatments). the pediatrician GI put her on both, we are slowly lowering the Miralax (she was on a full cap-lloked like 1/4 cup and now on 1 tsp) and is doing okay with that.

As for the Asperger's stuff. I have really looked at this several times over the years and she is primarily bipolar. He dad was BiPolar (BP). Much mood disorder in both families. Pre proper medication she would hallucinate, night terror with vivid memory of gory content (never exposed to anythign other than PBS), rage for hours, manic, NEVER slept!!!!, I could go on for hours on all of her symptoms. the book The Bipolar Child could have been written just about her. She has always been social but has some difficulty navigating social situations especially with peers her own age. This has improved quite a bit with some really good social skills groups provided by the school. I can't say enough good things about her school.

As for the sleep study, I had looked into it in the past and they wanted her off of all medications for it and I wasn't willing to do that at that time. She was already in a partial day program and again I wasn't going to hospitalize her completely.

The only real support I have is my aunt who we used to live with and she is currently providing all the support she can. She picks up Abbey every friday and watches her until I get there (I work late on Fridays), and on other days if a late meeting comes up, she also will bring her to school if I have an early meeting, and about once every month or two she will take her for one overnight so I can go out like an adult. I really can't ask for more.

My job is very demanding. I am very much looking forward to leaving. I will be leaving at the end of August because I'll be going back to school for a PhD--maybe I'll finally be able to modify difficult child's behaviors!

And finally what has she been on? It'd be easier to say what she hasn't been on. Here's a list off the top of my head:
trileptal-built up tolerace too fast,
tegretol-some blood level started looking bad,
depakote and clonidine-both were discontinued suddenly because she fell asleep at preschool and they couldn't wake her up, then hallucinations later that day,
risperidal and Zyprexa-didn't help and I think made her much worse actually...I'm pretty sure there was more but I can't remember right now.

Seroquel and Lithium were like actual gifts from god! As SRL noted Abbey had some pretty extreme behaviors and even more extreme reactions to medications. I have a 5 page document that notes all the negative reactions to medication introducations, increases, decreases and changes, over the course of a couple of years. So while I am sooooo happy that Seroquel and Lithium helped, it's the side effects that I don't find acceptable at this point since they are interferring with her functioning. I was talking to my aunt tonight about this when I went to pick up Abbey and she reminded how bad things really were.

That scares me even more. I so do not want to put her or me through that again. I just can't stand seeing her on all of these medications with all of these side effects. And it seems like the lists just keep getting longer. I'm glad the covering psychiatrist understood my concerns was willing to make adjustments.

I guess a small part of the issue is that I still have that little bit of hope that this is not a life long struggle for her, that she doesn't have a mental illness, or my favorite that outside people say "she will grow out of it".

If you've gotten this far through this post-THANK YOU!! I know it's long!!!

 

[Loving Abbey 2]

Another thread reminded me, she was also on tenex (don't recall why we stopped).

 

[smallworld]

It sounds as if you have a very caring group of psychiatrists treating Abbey.

I'm just going to throw out one suggestion because it looks as if you haven't tried it and it might help Abbey. If Lithium is causing a lot of side effects, you might want to consider adding in Lamictal so the Lithium dose can stay on the lower end. Lamictal has been a very good medication for two of my kids with zero side effects.

FWIW, the sedation effect of Seroquel can wear off at higher doses and the longer you take it. You may want to give it another shot if Abilify isn't doing the trick. Seroquel has been the magic bullet for stabilizing my son after two years of failed medication trials so I'm a big fan of the medication.

Ironically, Propranolol is a migraine medication. My son has been on it for 4 years to control migraines, but he takes a higher dose (30 mg BID).

Good luck. I know how challenging these medication trials can be.

 

[Loving Abbey 2]

So this weekend, we're on the lower doses of medications and so far she is doing okay. She is hyper but happy. The tremors seem to be getting better slowly--I had hoped for a quicker resolution. I'm not sure how much longer to give the tremors to go away before I make the jump to discontinue the Abilify completely and restart the Seroquel.

Surprisingly she only had one outburst/meltdown. that was Saturday morning and nothing since. I'm not holding my breath but it was a nice day today to not have any screaming or crying. She was hyper, silly, bouncy, crazy, etc. But safe. There weren't a lot of demands, just a laid back day. We only went to one store and went for a longwalk (I walked she rode her bike), we read books and played games. So it will be interesting to see what happens at school this week. Wish us luck!!