Special Needs

BiPolar/Mood Disorder? Can this be handled without meds?

My 7 year old has been DX with ADHD/Anxiety/Sensory issues.  He WAS misdiagnosed as Bipolar, but that was later switched to a Mood Disorder.  He WAS on Adderall and Risperidone.  He was successful for about 2 years until he went off the deep end back in the spring.  We weaned him off the Adderall and did fantastic! I had recently learned that there have been horrible side effects with the Resperidone.  Boys taking the meds at a young age were literally growing breasts!  There are class action law suits over it.  Also, due to a huge weigh gain since being on it, my husband and I decided to get him off that med.  With the docs approval, we have been weaning him off the resperidone very slowly over the past 1.5 months. He has now been off meds completely for about 7 days.  The results have not been good.  He is overly sensitive, not making good decisions when it comes to his personal space (IE:  Taking sisters baby doll stroller and swinging it  over his head, not aware of where others are at...he is NOT doing it to be mean...he is just not aware of others!)  He goes from 0-60 with his emotions if something is not right. Now that the temp is going down, he is so upset that he has to wear pants.  His teacher said that he is rolling them up and that he is acting weird.  At school, the sounds of the kids talking is agitating him and he asks to be removed from the class or wear his headphones...something he has not needed to do.  I am just having issue with his inability to control his mood...thus why he needs to be back on SOMETHING.  Doc wants to switch him to ambilify or geodon.  I researched them last night and I feel like we may as well just kept him on the Resperidone.  We will be working with a psych that deals with social issues.  Our son will be meeting with a social group for therapy in about 3 weeks.  He also works with a regular psych in the mean time.  

Is it possible to continue working with him over these issues...or will medication be his only answer?  Would love to hear from your experiences.  

Thanks!

Re: BiPolar/Mood Disorder? Can this be handled without meds?

  • funchickenfunchicken member
    edited September 2014
    Oh, man he's so young to be dealing with this. I'm so sorry. Who is handling his meds? I'm also curious as to why they opted for a "mood disorder" diagnosis over bipolar disorder given that the behavior you're describing sounds like the irritability and poor impulse control that go hand in hand with mania and hypomania.

    It does sound like he needs to be back on meds right now, but making sure you have the correct diagnosis is the key to treating him properly. I would want to work with a psychiatrist who has experience working with kids with mood disorders. I would also want to work with a family therapist.

    Exercise and adequate sleep are also vitally important. I'm sure some of the other posters on our board will have more advice to share. Hugs.

    ETA: Oh good, Auntie already posted :) OP, do you have a developmental pediatrician on your team?
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  • DS was tested for ASD when he was 4.  It was concluded that he had severe anxiety/sensory issues with the need to RO ADHD.  We continued testing about 9 months later for ADHD (they wanted him a little older) and it was then determined he has ADHD<----- We were working with a psych at that time, and determined due to failure to progress and by all the signs that he showed in session that it was ADHD too.  We had to "break up" with that psych and then transferred to working with a developmental-behavior pedi who prescribed the meds.  Started with Adderral for the ADHD and then as time went on the violence/mood swings really became prominent.  (those issues were there all the time but got worse as he got older).  We were turned over to a Psychiatrist who tried every medicine in the book and it was horrible.  She drugged him to the point he slept for 3 days straight and she thought it was awesome!  ("at least he was not mis-behaving!"<---is what her reaction was!)  We broke up and got an emergency appt back with our developmental behavioral pedi.  She prescribed the Resperdol.  My son did really great on that combination of adderall and Respirdol for about 1.5 years and then it went to pot back in April.  He was hallucinating, freaking out and scared over the most ridiculous things: automatic doors at the mall...thinking his little sister would get crushed, the toilet, me walking up the stairs and "startling him"...he was in constant panic. Doc said that the meds were triggering him and that he had built up a resistance.  Got him off the Adderall and then all has been harmony.  We tried to get him off the Resperidol at the beginning of this summer to "see where he was at"  and I misunderstood the directions and weaned him TOO fast...and the results were me getting kicked in the leg bc I did not give him attention fast enough.  He was immediately put back on to his normal dose.  We decided to wean him VERY slowly near the END of the summer and so far things have been OK. Like I said in the OP, VERY fast to change attitude when things are not his way, overly sensitive to texture, etc, stalls or needs constant reminders for ONE step directions, irritable, etc.  I am not happy with develop/behavior pedi "not knowing what she is medicating!"  NO ONE has brought up him being ASD.  He will look you in the eyes now to communicate...he will reciprocate in conversation now.

    My son has been doing OK...but not great...not where he was while on the Resperidol.  He has MAJOR food issues, so watching what he is waiting is a full time job.  ON THE MEDS, he could not satisfy his hunger.  He was a lean boy and is now husky.  I estimate that he gained about 15 pounds in a 5 month period.  He is "clinically obese" on the scale according to doc (but looking at him, he does not look it)  He LOVES carbs.  I would TRY to bring in only healthy options for him like greek yogurt, beans, etc   HE HATES sweets and treats...so for him an Easy Mac is like heaven to him.  After he had that as a 'treat" he HAD to drink a full glass of water and then WAS able to eat as much fruit as he wanted.  Um...he ate so much fruit that I had to limit that.  He was always hungry.  We just had to watch him like a hawk!

    Now that he is off the meds, its been about 5 days of pleading with him to eat breakfast. He has no appetite in the AM.  He goes to school with a little baggie of Chez-Its.  He eats the school lunch for the most part and then comes home and has salsa and chips or fruit/veggies.  On occasion he might have some Oreos.  He has been picking at dinner.  Im trying to let his body regulate everything.  He WAS doing karate and was SO good at it, but he could not handle people looking at him.  He tried LaCrosse but did not really "get" that people RUN after the ball to try to take it away.  He is currently in soccer...which he is doing ok.  He gets tired out a lot.  We have a LOT of stuff in the house for his sensory needs:  Indoor and an outdoor trampoline which he constantly jumps on, an indoor swing, balance seat, and on occasion, if he has not been outside to either jump or ride his bike, we will allow him to walk on our treadmill.  The kid is constantly moving though. 

    I look at how he has been over the past few days and wonder if he/we can live with him off meds.  The side effects to all these meds are crazy-scary and I feel that living with these issues are worth it to keep him away from the harm these meds can cause.  BUT...on the flip side, he did well with the mood stabilizing meds.  To be honest...I am struggling with what happens in 5 years.  I may be flamed here for this comment, but Im petrified of my kid turning into a "Columbine kid."  He will horse around with his brother and then takes it way to far and ends up hurting him. He laughs when he sees his brother cry. He is really into stuff with skulls on it and scaring people.  He is not a cruel type kid who bullies kids on the playground or says means things.  He is really well liked at school and kids seek him out to play, etc.  My son is the most sensitive, loving, curious boy...if you met him you would NEVER know anything is up with him.   But he has these issues.  He keeps it together when he is away (other than the pants issue and the sounds/talking issues in the classroom/bus that started recently).....he gets home and "lets his hair down!"  

    I feel so torn. Im thinking it time to break up with the devel/behavioral pedi and start working with a pedi psych.  I wish there was a cut-and-dry answer.  I want my son to have a fighting chance and be a good productive citizen of our world, and we want to continue giving him the tools needed to do it on his own...but looking at our options, Im seeing meds as the only answer and that scares the $hit out of me! 

    Thank you for taking the time to answer me.  You have given my hubby and I some things to think about! I hope I answered some of your questions to help paint a better picture of the process he has been through.  Thanks again!
  • Wow, you guys have been through a lot.

    You're right that the side effects of meds are scary, but a lot of them are also rare. Maybe if you felt more comfortable with his diagnosis you would feel more confident about your options for meds. I think finding a good psychiatrist who specializes in children and adolescents and who you trust and feel comfortable with is so important. Your DS might need meds to help him be his best self or he might not, but you should feel like an active participant in his care, not like the doctors are making all the decisions.

  • Its been a roller coaster the last 24 hours.  Took my 3 kids to the local city pool since it was still open. My son was diving off the diving boards...and suddenly frantically came over to me and told me this story about a man snapping photos of his friend and their mom's butts, who was behind a tree, with his pants down.  At first a lifeguard overheard and went into a tizzy looking around.  I asked my son to calm down, slow his breathing and tell me again what happened....suddenly his story started changing.  This time, it was a man who did NOT have his pants down, but was hiding behind a tree, then snuck up to the fence and took photos of the bottoms of his friend and his mom.  Then he went back up in the tree.  It was weird, but I told the lifeguards privately that it more than likely did not happen and that someone may have been walking down the street looking at their phone.  20 minutes later (as I cautiously kept a close eye on him) he ran back over to me and told me that the man and his son were both hiding behind the tree and taking pictures of him.  I told my hubby when we got home and my hubby said that he was doing it for attention.  (not the response I was looking for, I guess!)

    Today, while at the park, we were finishing up our picnic lunch. My kids asked to go play at the playground and we said yes, but we needed to finish our lunch and that we would be right over to play.  My two little ones went to the sandbox and my oldest went to the playground.  To keep him engaged in play, I gave him an obstacle course to complete as I timed him on my phone.  When he got to the top of the play structure and was about to go down the slide, he starts screaming.  He runs over to us and tell us that a man came over to him (at the top of the slide) and told him that he is "a stupid little boy" and then told him that "he is an idiot!"  I asked him to show me the man and he said that he went away.  Then a minute later, he told me he was the same guy from the pool.  When my son went to be by his siblings, I asked my hubby if he thought our son was hallucinating.  He rolled his eyes and said that our son was telling "tall-tales" and was doing this for attention.  I totally disagreed!  I figured it was side effects of being off his meds.  I immediately called his dev/beh pedi who prescribes his meds and the on call nurse said to get him into a hospital immediately.  I totally disagreed as he was "fine" otherwise and asked for our doctor to call me.  Within 30 minutes they found his doc and she feels that he is not having side effects from the meds, but rather this "voice" is another issue to add to the gamut of things that he has.  She feels that the meds suppressed this voice and now that he is off his meds, he hears it.  Im PETRIFIED of what she said.  So...she put in an RX for Abilfiy.  She said he needs to be on meds and to do it NOW... We also need to get him in with a pedi psychiatrist ASAP to get a better and clear understanding of what is going on.  
    I went to pick up his med and it was $251 WITH INSURANCE.  I had to decline it b/c as much as we will do anything for our kids...we cannot afford that.  I need to wait until Monday for the doc to get a different med.  I am contemplating just putting him back on the Risperidol.  I feel so torn.  AND..to top it off, my husband is showing NO sympathy for what is going on and thinks my son is making this all up for attention.  Im dying on the inside. I sent my hubby out of the house to give us all a break!  My son is so sad that he hurt his dad's feelings.  It just breaks my heart that he thinks it! 

    Auntie...to answer some of your questions quickly from above:  
    Yes, I have been told that he was low tone.  I never really understood what that meant.  I know he worked with his OT, but now that he is off his IEP, he does not get sensory/OT time.  We are in Cleveland and our kids go to the top district.  He has been on an IEP since Pre-S and now that he is in 2nd grade, they felt he was fine academically to be taken off the IEP.  I am regretting it.  I did not know they they want to have kids off an IEP so their "numbers" and stats look good for the state.  His teacher is amazing though and is willing to work with him.  

    We are in Cleveland use the Clinic and UH.  I feel like we have the top docs, but now I need more for my kid.  We have been on this path of "what is this?" for years.  Its not fair to my guy! Im not sure where to go though.  Do I need to start looking outside our system.  I rely so much on the docs that he does have...do we go homeopathic? Do we look in other states...I don't even know where to begin! 


    Thanks for letting me vent about today.  
  • I do not have anything to really add that has not been said.  My DH is bipolar and its not a road I wish to visit with my own DS.  I can tell you his parents did not get the right diagnosis for a long time (they often told him he was a bad kid and disciplined him as such-- things are much better between him and his parents now).  He was misdiagnosed with different dx's and even after realizing what he had, it was a long time before the medication "cocktail" was correct.

    My DH and I are both 35 and met at 18.  At 20 he had a really rough time and spent some time in the hospital-- hearing voices, uncontainable rage, totally not himself.  Bipolar is awful and as awful as it is, it can be hard for doctors to get the right amount of meds in order to keep you from living in a fog, being depressed, not caring or gaining crazy amounts of weight-- my DH has had many different side effects and they monitor you closely but its still a lot of guessing. 

    I feel bad that not only have you been told different things could be going on but also that you have tried different drug combos.  I just want to offer hugs and let you know that some of us do know where you are coming from.  For my DH though, no amount of talk therapy would help unless it was accompanied by meds. 

    My DH gets super annoyed and rude when he has lack of sleep or forgets a dose or takes a dose late.  He is very careful to take them the same time each day and make sure he does not run out.  His bipolar is also amplified by stress.  Exercise seems to really help a lot too.  We agreed that he has to go to the gym at least twice a week.  Our DD just turned 18 months and our son is most likely on the spectrum and he is 4.  Our lives are stressful and we decided that between all the stress of DS's therapies, we need to start taking better care of ourselves too.  As selfish as it might feel.  I hope things get better for your family.  Please post here anytime!

     
  • funchickenfunchicken member
    edited September 2014
    I'm sorry. That sounds so scary. I agree with @wife07mom09‌. This sounds like an emergency. He needs the meds. You can figure out a long term treatment plan once he is stable, but you need to follow your doctor's advice.

    ETA: call the doc back if the meds are too expensive and you need something different
  • Quick update:  DS had a very good day.  We kept him extremely active.  (soccer, swimming, etc)  Praise Jesus!  

    I looked into the 30-day free trial of Abilify yesterday and went to the pharmacist who then processed the order, but came back and said that I had to call an 888 # to activate that card.  I did, but they are closed as its the weekend.  I will be calling first thing tomorrow.  I will also call his Doc b/c the more I think about it, if Abilify and geodon are in the same family as Risperidol and have the same side effects, then we might as well keep him on what we know works. I want to speak to his doc about it.  I mentioned this to her when I spoke on the phone with her yesterday and also mentioned the Metaformin and she said that she would look into it.  

    Auntie...you hit the nail on the head about the disconnect between my DH and  "our" son.  We are a happily-disfunctional married couple. :)  When it comes to what the issues are with OUR son, we don't meet eye to eye.  DH's take is "Do what you need and I will support you" but this weekend that grossly fell apart and I am left very angry, hurt and confused.  I don't even have an ounce of emotion to even think or deal with it as I need to concentrate on making sure my son is feeling OK, the other kids are ok and that other things I have commitments to are taken care of.  I have a lot on my plate.  I totally get that a happy-healthy mom and dad are paramount....I just don't have time to coddle and make sure that a grown man is ok.  I expect him to be able to handle a 7 year old boy with respect and empathy when his brain is not shooting on all cylinders and to model the correct behavior that we expect for our son.  

    Thank you for your explanation on the whole muscle tone.  I need to look into this more and look into DS records for more info.  

    I really appreciate being able to vent here.  I have NO one that gets what is going on. So please know....whoever is reading this...who ever offers advice...I thank you.  I have posted on these boards before....usually when things are really rough...to get advice from people that have been through it or might have an idea of something that may work...and I appreciate it more than you'll even know.  Thank you!!! (and a special thanks to you, Auntie! You don't have to help...but you do.  You are an angel. )
  • Thanks Wife!  Im still waiting to hear back from the doc.  DS is still not on any meds, but he is doing ok.  Doc has been consulting with her favorite pedi psychiatrists (multiple) and see what med they recommend. She is waiting to hear back if anyone is taking new patients...if they want to see him off or on the meds... DS is doing ok though.  No imaginary situations.  He did have a situation tonight where he kicked my hubby ((very means and aggressive ) but that was taken care of right away...luckily he was able to calm himself quickly AND my hubby was visibly able to see that DS seemed "out of it" when he got angry and then once calm was very remorseful.  

    DH and I had a "come to Jesus" conversation last night. I told him everything I was feeling and he told me his feelings.  We are both having a hard time processing what is happening. We are fighting this fight but ultimately fighting each other, which makes no sense.  We have had NO time for communication....but we are going to make it a priority to talk each night and just BE WITH EACH other.....I told him where I needed help...I told him my expectations of how I think he should treat and be around DS and he agreed that he needs to work on things and make DS care more of a priority...and that if he cannot help with DS, then he will help with the other two or things around the house. 
     
    I feel like a new person since talking to him. I feel like I can tackle anything...and I need that feeling to stay like this so we can figure out the next course of action for DS. We both agreed that having ME be the one who deals with DS issues and DH helps on a "need to know" bases was NOT the right approach and that we need to be on the same page and make decisions together.  I think that will be the most helpful.  I feel hope for our marriage right now bc the other day I thought our marriage was over.  I can't say we are out of the woods...but I feel better about things. My focus is on our son. Its on our other kids, but its also on him....just pretty much in that order.  DH will need to accept that.  Its all I can do right now...

    Thanks for reaching out.  I'll keep you guys posted on what the doc says regarding son.  I wish there was an answer like...yesterday!  My boy needs something! 

  • Glad to hear things have settled down a bit. I hope you can see the doctor soon!
  • Quick update: 
    Doc wants him back on the Risperidol.  Geodon is RX for ages 10 and up and she is not comfy RXing that for him.  The psychiatrist does want to evaluate him but is trying to find the slot for him...so for now, we are giving him 1/2 a tab (lowest dose) daily in the AM and will build up as needed.  He is still easily agitated...so hopefully with meds he gets back to his normal! 

    Thanks again for your support! 
  • I don't have much to add to this, and you've gotten a lot of great advice, but I just wanted to ask if your son is receiving therapy for his anxiety. At 7 years old, he's just old enough to possibly start cognitive behavioral therapy, which is reported to really help people with anxiety. We are just about to start it with my youngest son, who just turned 8. Taking some of the anxiety issues out of the mix might help give a more clear picture of his other remaining issues, and what meds might best to help him.
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