10 yr old bp son, change in meds creates havoc
HI, I am new at blogs and website. I would like to share my story and love to speak with other parents raising bp kids. At age 5 my son was diagnosed by 3 different doctors with bipolar (informal diagnosis), adhd combined type and depression. We have been on multiple meds for 5 years, he has just turned ten. My son, Sal, takes depakote, abilify, lexapro, and trazedone. He is often misunderstood and most people say he's just spoiled or wants attention. These people are very uneducated and have nooo idea how hard this is. I've often been told that I "drug" my child. I did not want this either, but after 3 diagnoses and being kicked out of schools and daycares, I had to face facts. During this sumner 2010, his psychiatrist and I decided to experiment with his meds some. We wanted to be sure he needed all these and what exactly each drug was doing as he has gotten much older. Doc first took away depakote, first 2 weeks were rough, but we managed. Then he took him off abilify, which he's been taking for 4 years. After about 7 days, he went completely crazy on me. He was not able to answser simple questions as if his thought process was slowed. He was yelling, kicking screaming threatening to hurt himself. He spoke irrationally and never made any sense. He made a huge scene in public. My son, Sal has an above average iq, but he couldn't answer a simple question such as "is the sky blue?". He was lost, went back to doc added back depakote, not much change, maybe worse. With school, about to start had to see the doc again. Before our appointment Sal was kicked out of the last daycare in town. He could not keep his body or limbs still, was constantly hitting other kids, much smaller than him. Sal was not raised this way. As I'm sure other parents have experienced, we are so caught up in moment to moment chaos, I don't feel like I am able to teach him the important things. Back to meds, doc added adderall xr to control hyperactivity and impulsiveness as well as help concentration and focus. He has calmed down, but he is still not right. Everyday is a struggle with Sal. However, this experimenting with meds has created a living nightmare. It is hard enough, because no one understands. He is in special ed at school for emotional disorder, and they are still clueless. Daycares can't put up with him and he is nowhere near mature enough to stay at home alone even for a few hours a day. I would love some feedback and to connect with other parents. I would like to describe Sal's general behavior (prior to med change) to see if he is similar to your children. Sal sleeps very little, is hard to wake. He wakes very grouchy and has a hard time putting on clothes, simple tasks. He is easily frustrated and becomes mean and irritable. Sal has always been very dramatic and would cry so loud after hearing a simple "no, i'm sorry". Of course he is also extremely hyper, so he is all over the place. I have learned to aviod taking him to stores. He makes a huge scene and dangerously runs off into the crowd. It doesnt matter what or how I say it, he turns it into broadway theater. He seems to have no idea that people are around him and watching us during a meltdown. He has also never slept much, some nights none at all, but averaging 3 to 4 hours per night. He gets up eats, makes a mess, goes outside, makes things using his creativity (very brilliant). This scares, me him waking up, leaving door unocked, etc. I feel like I have no break or escape from worry and constant supervising. He is not the child I raised, he has almost regressed in a way. I think he was more responsible and made better decisions when he was 5-6 yrs of age. To wrap up, we live in a small town in Texas. Never run across a local support group or another parent that shares this day to day struggle. Please reply! thanks, crystal needing help in texas
Also, if I am using the blog incorrectly, please send me some advice, I chose meds since we are currently struggling thanks
Welcome to CABF. Your struggles are very familiar to many people here. Be sure to check out the "Getting Started" tab under the "Learn" tab at the top of the page. In particular, you may want to check out the "Expert Treatment Guidelines". Has your ds had a thorough neuro-psych exam? You know, tested for every disorder commonly or uncommonly found in kids? It would be important to rule in or out any ASD(autism spectrum disorder), sensory sensitivities, anxiety disorders, etc.
It sounds like pdoc was trying to do a medwash at home. That can be kind of tricky, as you have seen. Have you considered admitting him to phosp to do this? I don't know what kind of facilities you have near you. From what I've heard here from other parents, many kids have various withdrawal sx when going off psychotropic meds. It's usually best to wean slowly, even the stims.
There are studies which show that some people with BP can safely take stims, but a lot of kids have adverse reactions, including induction or worsening of mania. Same with AD's. The general guidelines are to use a MS and probably an AP. Do you think the Depakote was helping? There's also Tegretol, Trileptal, Lamictal and lithium (the gold standard). Many kids do well on a combo of Lamictal and lithium + an AP. It sounds as if he is having some disordered thoughts. Do you know if he is hallucinating? He also really needs to sleep, as sleep deprivation is really bad for the moods. Seroquel is often given to help with sleep. It can be used at a low dose (around 100mg) for sleep, or higher doses (up to 800mg/day) for MS.
I won't overwhelm you anymore right now :-) Please feel free to ask any questions or just vent.
--
Brenda,50, CABF Parent to Parent Volunteer
Mom to A, 16, BP, Tourette's, OCD, ADHD: Eskalith CR, Trilafon, Lamictal, Seroquel, Cytomel
E, 14, BP,AS, hypothyroidism: Seroquel, Eskalith CR, levothyroxin, inositol
B, 13 & H, 10
Married 17 years to DH, 49
If CABF has helped you, please help CABF. Donate today. http://www.bpkids.org/donate?campaign=forums2010
FROM CABF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.
Hi - Your experience sounds so similar to our grandson's - 12 no, dxd at 6, tried every med, many different combos - as there are literally hundreds of combinations/dosages, and there is little consistency in how different children react, it can be like finding a needle in a haystack. Case did appear drugged, was on many meds, but changing or reducing was a nightmare.
Finally a medical crisis forced a hospitalization and a med wash 18 months ago. . Prior to that he had been on a cocktail of APs and mood stabilizers (no stimulants, those trials proved highly dangerous) After a month, we brought him home on only Geodon and a tiny amount of Thorazine (7mg) for sleep. We have had to increase the geodon, and learn to live with some breakthrough cycling as well as manage the environment closely. But we are very reluctant to mess with the meds until we have to - we try everything else first, and really use safety or risk of our own sanity to guide us on adjusting dosage.
I dont have an answer for you, but if you can do a full med wash, and take the time to really evaluate any med before adding another, and go very, very slow, it would be the best option. Unfortunately, insurance companies wont usually allow this. One long shot idea would be the NIMH inpatient study. They have a study where they have kids stay there for 6-12 weeks, take them off all meds, then slowly reintroduce. Your child does have to meet the stricter dx criteria -essentially at least one distinct manic episode rather than the chronic sx alone. We would have done this but our child's separation anxiety was too great. They will let you visit anytime, staying at the family inn, in Bedford, etc. Might be worth checking out if he has an episodic course of illness.
Hang in there, keep trying - you need to become the monitor of sx - your pdoc doesnt see him often enough. And you need a pdoc who will listen and work closely with you. Chart, chart, chart.... best wishes for better days.--
Becky, 58, custodial grandmother
Case, 12, BP I and HTN
Joni, 56, other grandma, Becky's partner
Hi, Thanks so much for your reply. I finally feel we are understood thanks to this website. I have felt so alone for many years, not knowing anyone else with our daily struggles. We have never had the neuro exam. I have made the decison to quit my job in order to qualify for medicaid to get second opinion and consider hosp, medwash, etc. I have researched some areas in Dallas/Ft Worth area, and will be contacting them for assessments. I realize even with insurance, this is difficult. However, without any we are not getting anywhere. The local MHMR center has a huge waiting list for non insured. Upon receiving government benefits, I will schedule the neuro exam as well. We have a lot to do.
I have often considered phosp, but again no insurance and in a small town in west texas, I have not found a place willing to work with us. Also been told he must be a danger to himself or others, and up until recently we did not have this problem. Pdoc seems to minimize my concerns. Not sure what he is waiting for. On top of no health benefits, my job was very stressful and demanding and after losing daycare, I am focusing on my son only. I hope to find answers and get him well. Now that I have found this website and have the time to work on this, I am confident that we will have more options.
About medwash and stopping abilify. It concerns me greatly that the pdoc did not wean. He also did not seemed concerned when I was unable to handle my son due to recent med change. He never commented on withdrawal from abilify or why things were so bad, just that he needed a ms so back on depakote. He has yet to put sal back on abilify or any other ap at this time. He now wants to see us every two weeks. As I said, I am very concerned about pdocs decisions and also worried about the danger of stims. I have seen many parents here saying stims are dangerous. As soon, as we added stim, he began entertaining the idea of harming himself and others. I'm constantly being contacted by school with problems. He is now being aggressive to other kids. The stim makes him mean and all it does is allow him to be still and focus. However, without stim he cannot process the simplest thoughts and he has an above average iq. He is in special ed at school for ed, and the ard meetings push stims more than anything. It's very frustrating.
To answer your question on depakote. When he added it several years ago, it seemed to help the most of all meds. Now, I don't see it, maybe a little but this is without the ap too. It's hard to say. I would love for him to safely undergo medwash and reintroduce to chart and get things under control.
Not sure if he is hallucinating, he is hearing voices. Mean voice that tells him what a worthless child he is. He says it tells him to run away from home.
Sleep, sleep, sleep. He can go 5 days without sleeping and I agree this is not helping moods. I have stressed to doc, he rarely sleeps, never get a comment on that either. Even with the sleeping meds, he doesnt. He may get one or two nights a week, 6 hours, at most. I think any pdoc would see this as "manic" behavior, but he doesnt comment. Again, the desperate need for some help or second opinion.
At this point, it would be helpful to know what the best places in my area are. I have found facility in bedford texas. Was recommended to menninger, but its 12 yrs and up. I need help on locating a facility in texas that accepts medicaid or payment plans. Are you familiar with bedford? What qualifies as a "manic episode"? One of the parents suggested this and mentioned must have dx manic episode. I am working on app for treatment now.
I hope I answered your questions, and I cannot tell you how much I appreciate your suggestions.
Thanks again.
--
bp mom
meds: lexapro, adderal, trazedone, abilify, depakote
dx: age 5, bipolar, depression adhd combined type
west texas
One of my kids (who has epilepsy, not bp) took 3 months to get off of a mere 90mg Depakote. If she went any faster, she had a seizure.
I really don't understand why MD's of all different specialities don't understand withdrawal.
You can't make any judgments about a child during the withdrawal period, meaning for weeks after the last dose. The problem is, an MD could medicate a withdrawal effect and just cause more problems. I don't think medication decisions should be made until the patient is clear of withdrawal effects, which can be severe and bizarre.
Why did the dr re-introduce depakote instead of the abilify? You mentioned that going off depakote was not too difficult, but that the abilify withdrawal caused the problems -- ? We have not used depakote. I do know that abilify is a very difficult med to remove, requiring many weeks of small reductions before taking it away. You should get another opinion, possibly through a hospital. Have you heard of Menninger in Texas?
--
ds age 16 - lithium, abilify, namenda, klonopin
Well the doc never agreed with me that could be withdrawal from abilify and he said his symptoms were not that of needing the abilify and he said he needed a ms of some kind, so thats how that came about, ive never been too fond of the doc, but small town and not much choices, and now without insurance even more limited, good questions though, i wondered the same myself. Also, everyone in the world has been shocked he took hin off without weaning. I do need a second opinion, I am not familiar with Menniger, will do some research. Thanks so much for your reply.
If you think the stim is causing aggression, and he is sleepless, it sounds like manic sx. It is not worth it to gain a few hours of focusing. When my ds16 was younger, he couldn't sit still and focus for any length of time. This was due to BP more than ADHD. Now that he is more stable, he is able to go to school and focus in his classes. He can also focus on homework. He is still a restless, hyper kind of guy who needs lots of physical outlets, but the focusing is more of an executive function issue than ADHD.
I suspect that if your son were stable, which will probably take some time and many med trials, then his focusing issues would improve quite a bit.
Another path to consider is homeschooling him until he can be stabilized. Or getting homebound status. Do you think there is a chance he will do something at school that will get him expelled?
--
Brenda,50, CABF Parent to Parent Volunteer
Mom to A, 16, BP, Tourette's, OCD, ADHD: Eskalith CR, Trilafon, Lamictal, Seroquel, Cytomel
E, 14, BP,AS, hypothyroidism: Seroquel, Eskalith CR, levothyroxin, inositol
B, 13 & H, 10
Married 17 years to DH, 49
If CABF has helped you, please help CABF. Donate today. http://www.bpkids.org/donate?campaign=forums2010
FROM CABF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.