Need Advice about BiPolar Son

wjaes

New Member
Hi, I haven't posted here in a long time. My 9 y/o son is now diagnosis with bipolar and is taking abilify and clonidine. He is still struggling with a lot of the same moodiness as he was before the abilify, but has gained 23 pounds since school started. My understanding is Abilify is supposed to be "weight neutral". He seems to craze foods. Do any of you with kids on abilify notice eating has picked up? Also and much more important....my son's dad sort of dropped out of his life when he was 3 and has been back in his life for the last 2 years (gone for about 4 years). Since coming back in his life, he has stated to me that he doesn't believe in the mental health diagnosis and/or any mental health diagnosis. He thinks that our son has learned to be this way (from me not setting limits). The difficulty lies in that I can hardly handle my son's problems anymore (he has been hospitalized 2x and the latest time they suggested residential treatment). His dad said that he would take him but I am very concerned that without any buy in on the mental health stuff, it could be very difficult and possibly life changing for our son (not life changing in a good way). He said that if I get (and pay for) brain imaging and can prove to him that it is bipolar he will take a different pt. of view. Brain imaging is very expensive and I don't have the money. I don't have much of a support network (not a lot of family), work full time (drive and cover 940 square miles of territory in job as school social worker) and am single. Also, my mom is terminally ill and i am her primary caregiver. Any help, ideas on any of the above would be helpful. I feel that I am in this alone and am running out of steam. :smile:
 

On_Call

New Member
wjaes,

I don't have any magic advice, but am sending hugs and support your way. It sounds like you have too much on your plate right now and I've certainly been there. Things are tough enough with a difficult child - then if you don't have the support of those closest to the situation, it's made even tougher.

Does your difficult child have issues and possible an IEP at school? If so, the sd may pay for neuropsychologist testing. I know that it is expensive - we are working out the details to have it done for our own difficult child now. Our sd is dragging its heels, so we are looking at other financing options.

Hang in there. Someone will come along, I'm sure, with some solid advice, but I wanted you to know that you are not alone!

Many, many {{{hugs}}} to you.
 

wjaes

New Member
Jamie,
I sooooo much appreciate the response to my post. He doesn't have an IEP at school. He attends a public montessori school and learning is individually based so he does't have as many problems in the classroom (recess, aftercare, lunch and any other unstructured times are different story).

The thing that I have noticed with difficult child is that this time of year (Jan. through March) seem to be the toughest times. Both hospitalizations occurred in this time frame (last year and the year before). He has taken to kicking holes in the basement bathroom walls. He has started (in the last year) to do really horrible things to himself (hitting self in jaw with closed fist, scratching face, pulling top lip way down with both hands) and aggression towards objects has really increased. He isn't aggressive to others (it has happened but very very rarely), but I am afraid that if the way his dad gets him to mind is buy being "bigger" and spanking him, difficult child will only learn that "might makes right". difficult child will be big and strong as an adult and doesn't need to learn to be a bully. On the other hand, i am tired and can't keep up the fight.....

Again, thanks for posting back, I feel like I am in a constant nightmare.
Wendy
 

busywend

Well-Known Member
Hi Wendy.

Does your son see a specialist - psychiatrist, therapist, neuropsychologist? Can't dad visit one of these docs for more info? I do not know of any brain imaging that proves anything about BiPolar (BP).
 

wjaes

New Member
Busy Wend..
Yes, my son sees a psychiatrist and therapist, but his dad refuses to visit. I gave him Danielle Steel's book to read (about her son) and have gobs of other books here. The frustrating part is that he works with teenagers in a therapeutic school setting (he is a caseworker). I think he has bipolar (undiagnosed) based on his sleep habits, inability to maintain or seemingly be interested in maintaining intimate relationships (has 3 sets of kids from 3 different women with our son being the youngest). I am afraid that daily involvement could be really damaging for our son because his dad is planning to break down his spirit and build it back (I don't he will be able to be built back, i think he will just be crumbled). His aggressiveness toward himself as increased since his dad has been around (don't know if this is based on his dad being around or that he is older now). I thought that brain imaging could help but if it would be inconclusive, I don't even wnat to look into it based on cost. Thanks for responding.
 

On_Call

New Member
Wendy,

We have different times of the year that our difficult child seems to have it rougher, too. He seems to be every 3 months - almost 'quarterly' - lol. It's not funny, I know, but I try to keep a sense of humor about it for fear that I'll lose it, as well. Seriously, we know that difficult child is always unstable around his birthday, which is at the end of February. Last year, I could be found crying over the sink in my dark kitchen during difficult child's family birthday get-together. He was opening gifts and was completely unstable - he was being over the top one minute and angry at someone the next minute for giving him a birthday card that he found to be insulting and not funny. Each year I brace myself.

Our difficult child hits himself in the jaw and/or head as part of his rages, too. When he begins to wind down, he flips to a self-hating mode and begins to hit himself in the head, legs, arms, all while verbally berating himself. I hate it. He has just started taking his lips and twisting them during the rages. I think at that point he just wants to either hurt himself or is looking for some sort of release from the anger. I don't know.

Our difficult child is 5+ feet tall and weighs a bit more than 100 pounds, so I also am not able to handle him physically anymore when he is unstable, angry and out of control. I also have the fear that when husband assists me - he is 6+ feet tall and 260 pounds - that it instills the wrong idea in difficult child, but sometimes the necessity of defusing the episode without difficult child hurting himself or someone else outweights that fear that I have.

We are in the middle of dealing with a very similar situation as yours right now. It is so tiring and frustrating. I know. It seems that everything you do gets the same result. Our difficult child had a meltdown at collaborative day this week and I had to go pick him up. By the time I called, he had been raging for 45 mintues and it takes me 45 minutes to get there, so by the time I did arrive, he had begun to calm - we met with the counselor and came home. The next morning I woke with the reality that it could have been 5 years ago - the rage was the same, the meltdown was the same, the decompression was the same, etc. It is as if all of the medications, therapy, changes we've made with educational settings and at home have made no difference. I had a real feel sorry for Jamie day.

We have a new psychiatrist who is trying new things, so hopefully our future will still have the positive outcome I dream about.

I know it is discouraging, but we keep going because we love them and we still have hope that we will all get through this!

Keep your head up.
 

wjaes

New Member
Wow Jamie, it sounds we are talking about the same kid in a lot of ways. Does your difficult child give you any ideas on the self-harm things that he does? When I read about the difficulties around birthday time, I could relate to that too. My son's b-day is in November and then we have x-mas and then Jan. is like "no holds barred". My difficult child is a pretty good natural athlete, but isn't motivated and has now been discluded on 2 teams (one is basketball and one is baseball) he has played on for 3 years. The coaches don't want to deal with his moodiness (they haven't said that, but am sure that's what it it). I so much want to say something to them about how much good they have instilled and how much I wish they would stick with him (his dad doesn't support the sports thing...says he needs to learn to behave before he will support his sports activities).

This leads me back to my first post..i feel he will be in worse shape by living with his dad based on lack of access to structured social activities, probably no medications, keeping him in line by basically bullying him. On the other hand, I am majorally exhausted and can't imagine the next 9-10 years (I know it won't be over then either as support will be ongoing) and both my difficult child and I making it through.

Trying to keep my chin up though.
 

On_Call

New Member
I can't think of a time when I've asked him why he does the self-harming. I will have to ask him today and tell you what his response is. Probably it will be his stock answer of "I don't know". That seems to be his answer for most of his behaviors, and he probably doesn't really know. The meltdowns are an entity of their own.

We use a need to know tactic with difficult child's coaches. If things are going well, we don't speak to the coaches. If they are not, or if difficult child seems to be struggling, we have a discreet discussion with the coach and explain difficult child's situation and issues. So far, for the most part, it has gone okay. Our difficult child has been doing karate for a year now and the Master is great! During difficult child's recent inpatient stay at the psychiatric hospital, I called him and he made up a card for difficult child and had everyone sign it - telling difficult child's fellow students only that difficult child wasn't feeling well and needed a pick-me-up. It was awesome!

My husband and I for the most part have a united front where difficult child is concerned, but even we have our differences of opinion on how to deal with difficult child and the surrounding situation. It is a constant struggle and a contant stress in our household, on our marriage and on our family dynamics. Most recently, we had an argument during one of difficult child's meltdowns because he had had enough and was handling it in a way that I would not handle it. It is most definitely a difficult situation, no matter what your family make-up is.

I don't know how I would handle things if it was just me trying to do it. I feel for you on that aspect. And, if husband and I were separated, I am sure I would worry about how things would be if difficult child were staying and or living in his household versus with me. I don't have any advice on that one. It only complicates the matter for you. At our difficult child's discharge in late November, we were referred to a State organization that provides crisis intervention, community, and respite services. We just received a letter determining that we qualified for services and that someone would be contacting us to see what services we might be interested in taking advantage of. I think some on the board have called it "wrap-around services" before. Can you contact your County to see if services exist where you live? This might give you the help you can use without having difficult child leave your home. Worth a shot. Does your difficult child have counseling? Does he currently take medications - and what does he take?
 

Sara PA

New Member
A number of things from the first post...

Abilify is not absolutely weight neutral. It is less likely to cause extreme weight gain, but to claim is will be weight neutral is just wrong. One theory is that the antipsychotics (major tranquilizers) "turn off" the part of the brain that registers stomach fullness. But that doesn't explain the carbohydrate craving.

Your son is diagnosed bipolar but isn't on a mood stabilizer. While an antipsychotic is often indicated for bipolar, it should be used in conjunction with a mood stabilizer. First step in treating bipolar should be prescribing a mood stabilizer.

Clonidine is an antihypertensive used off label to treat ADHD. It is not a bipolar medication. However, Tenex, another hypertensive, is known to cause increased mania and aggression in bipolar children.

There is no brain imaging test that will reliably diagnose bipolar disorder because no one knows exactly what causes bipolr disorder. Especially in children what we are now calling bipolar could very well turn out to be any number of disorders or conditions. Bipolar is diagnosed only by observed and reported behavior.
 

wjaes

New Member
Jamie and Nomad,
Thanks so much for all of your input. We do have what is called the mental health waiver in our state (Iowa) which would be perfect for him, but they only allow 300 children on the program at a time. We have to get a disability determination from social security first and it's a long laborious process. Then, after that you are on a waiting list for up to a year. We don't have respite services available other than that that I am aware of.

I agree with the coach thing and the "need to know". I think it is very difficult for most people to not just see what's happening as willful behavior. I really want to keep him involved in sports so that he has the opportunity to have structured social opportunities and can continue to develop skills. I think it will be a way to assist in keeping him out of trouble as he gets older (hopefully)

He is on Abilify and Clonidine. He has been on Zoloft and I didn't notice any differences. He has also been on Strattera and Focalin (not at the same time). The focalin made him extemely manic (took him off of it at his last hospitalization).

He is obsessed with video games and thinks about them all of the time. He has a very difficult time having back and forth conversations unless we are talking about his interests. He also doesn't read social cues very well.

We have met a very nice parent who has been taking him to church on Wednesdays. Her son likes difficult child (sad to say most kids do like difficult child and then they don't after awhile) and so I really look forward to the 2 hours after work that he is at church.

I just want to say, thanks sooooo much for your ears and hearts. I feel like I am having a nervous breakdown in slow motion and really appreciate the support.
Wendy
 

wjaes

New Member
Sara,
Thanks so much for your response. difficult child started on clonidine when he was first diagnosis with ADHD. He didn't sleep through the night until 3 years old and then it took 4 hours of kicking and screaming to go to sleep after that. With the clonidine it dropped to 1-2 hours. He takes that at night. AT his last appointment. his psychiatrist asked about his reaction to Zoloft (is that a mood stablizer?). Need to explain, we switched psychiatrist's. I told him I did't notice much of a difference if any difference at all, but he was on the Zoloft at the same time he was on the focalin (that's when he as still diagnosis with ADHD). Maybe the focalin disguised any gain from the zoloft? It's so confusing.
Wendy
 

Sara PA

New Member
Zoloft is an SSRI (selective serotonin reuptake inhibitor) antidepressant. Strattera is an SNRI (selective norepinephrine reuptake inhibitor) antidepressant. Antidepressants can cause mood swings, mania, aggression, self harming, etc, even a condition known as "medication (or antidepressant) induced bipolar". This is more true for children than adults. No antidepressant is a bipolar medication and experts, the American Psychiatric Association and the FDA all warn against prescribing antidepressants without a mood stabilizer for people who might be bipolar (symptoms and/or family history) and to do so very cautiously with a mood stabilizer. There is very little chance there was a positive response to the Zoloft. The children who do have a positive response usually are taking it for anxiety or Obsessive Compulsive Disorder (OCD) but that doesn't rule out that it causing mania, aggression, self harming, etc. It can be quite a conundrum for parents and doctors when the drug does what it is precribed to do but the side effects cause equal unwanted behaviors. Generally speaking, adding other medications to control the psychiatric side effects doesn't work long term.

Focalin could have been making him manic, but the Zoloft wouldn't have countered it and could have been the cause or contributed greatly to it. Most of the problems with stimulants occur during the rebound phase, when the drug wears off. There is often a period of agitation when it wears off during which behavior can be aggressive, the person wants to eat and can't sleep.

How long has it been since your son was on no medication and for how long?
 

Sara PA

New Member
You know, I have to wonder about your ex who works in a therapeutic school setting as caseworker and doesn't believe in "mental health" dxs. I assume he believes that some behavioral issues can be caused by neurobiological disorders or conditions or he wouldn't be asking for brain imaging to "prove" your son's diagnosis. However, as I pointed out, that test doesn't exist (and those claiming to do that aren't reliable, accurate or accepted) and, frankly, he should know that. To be perfectly honest, if I'm getting a clear picture of him, he scares me not only for your child but for the children he works with.
 

serenitynow

New Member
Wow -- now I'm really concerned. We are going to p-doctor on Monday to discuss new medication options -- he put on 15 lbs in 2-1/2 months on risperdal and zyprexa (not taken at same time). P-doctor mentioned on phone might want to switch him to abilify, although has not officially been diagnosis with bi-polar. I'm so glad I read this before our appointment. My son is very upset about his weight gain, esp. since his pediatrician. made a big deal about it. Obviously, this is not the right choice. Anyone else out there found a better option?
 

wjaes

New Member
Sara and Serentity,

First Serenity, I am not sure what is going on with my son and his medication. combination...it's just his response. I think different medication. combinations work different on different people. I hope you find out stuff that will work for your son. My son is not real concerned about the weight gain yet. He is more upset that I have less of the "red flag" foods around.

Sara, my son has been on some combination of medication since he was 5 years old. He started on just Strattera and then they added Clonidine (that could have been the other way around, it was sooo difficulties ago). He went in the hospital and they added Zoloft. He was on all 3 and then about 6 months later they took him off the Strattera and started the Focalin. They took him off the Zoloft and then increased the Focalin (he was still and has always been on the clonidine) and then when he was in the hospital the last time (very manic and perseverating on thinks like sharpening sticks and collecting things and aggressive) they took him upon my request off the focalin and he was only on clonidine (that was in February of 2006) until August when they started him on the abilify. Does this make sense? Is it important to go off of all medication's occasionally?

Thanks again everyone for your postings. I am concerned that my son could become more aggressive and get worse if his dad tries to "tough love" him.
Wendy
 

Sara PA

New Member
[ QUOTE ]
Is it important to go off of all medication's occasionally?

[/ QUOTE ]
No. But too often there are medications being prescribed to treat the unrecognized adverse reactions to other medications, one on top of the other. Medications are changed too quickly to get a clear picture of both the effectiveness or the adverse reactions. Sometimes the option should be to do a complete medication wash (preferable for a few months) and see what behaviors are really there and what are adverse reactions to medications. ALL these medications can cause psychiatric adverse reactions. If a child is worse or no better over all on 2, 3, 4 medications than he was was on no medications, you need to question if the medications are really helping or not. But, no, it's not necessary to remove medications just for the sake of removing medications. If it ain't broken, don't fix it. But if it ain't working, don't stick with it.
 

wjaes

New Member
Sara,
You are so knowledgeable and I so much appreciate your input. We go back to see his psychiatrist in February. Should I suggest a medication wash? Personally, I haven't noticed any behavioral changes other than a brief period when he first started the abilify in august (he seemed more able to take part in conversations and calmer) ever. What I mean to say is that the only medication. that I have for certain noticed any definite effect with is the clonidine. I am a little wary of trying some medications based on side effects and if indeed my difficult child will be medicated for the rest of his life he has a long time for his body to withstand the medications. Does this make sense? It's so difficult to know which direction to go with all of this, but I did hear you when you said that it's difficult to notice changes when medication's are just layered on top of each other without breaks. I almost hate talking to the psychiatrist because when I do it seems we just try a different medication. combination.
Wendy
 

Sara PA

New Member
After that first initial improvement on the Abilfy, did he go back to his previous condition or did the improvement stay?

I never understood putting drugs into a child's body if the child wasn't better taking the drug than not taking the drug. Not only are the long term effects of these drugs not known on a developing body, if it's not helping, it's a waste of money.

by the way, have you ever been told about the side effects of Clondine?

"Central Nervous System Nervousness and agitation, about 3 in 100 patients; mental depression, about 1 in 100 and insomnia, about 5 in 1000. Other behavioral changes, vivid dreams or nightmares, restlessness, anxiety, visual and auditory hallucinations and delirium have rarely been reported"


Doesn't seem like a lot of incidences but it is estimated that only 1 in 100 adverse side effects are reported if the side effect is identified as a side effect. So he incidences are likely quite higher.
 

wjaes

New Member
difficult child was only better (as defined in an earlier post) for a short time (2-3 weeks) and then went back to how he was before. I am uncertain of what to do. Are there a site to research the side effects of various mood stabilizers?

I have always kind of wondered if he is on the autism spectrum (difficulty in social relationships, preoccupation with parts of things, ability to mimic and share songs or parts of movie (long parts) verbatim. I have questioned this with psychiatrist, hospital, school and therapist. School said he was maintained eye contact, interacted with others etc. but only observed him in a montessori classroom environment. I wouldn't suggest that he is a non-verbal autistic child, rather a high functioning kid (very smart with great memory) with aspergers.

It would explain in some respects why the medication's haven't really worked any better than they have wouldn't it?

Is there anyway to get more clarification about what is going on with my difficult child and how to assist him?
Wendy
 
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