new here...I have many questions

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emerald_521
New Member


Date Joined Jun 2007
Total Posts : 3
   Posted 6/5/2007 11:51 AM (GMT -7)   
Hi all...I just found this website and have tons of questions...this is for my 6 yr old son, so I guess my first question is should I be coming here with my questions?  Does anyone know of a bipolar forum for parents of bipolar children?
 
Next, I want to tell you a little history...my son was diagnosed with something called Mesial Temporal Sclerosis (scarring in the temporal lobe) when he was 2...this causes him to have seizures, so he takes medication for the seizures...we have been seeing neurologists, psychiatrists, psychologists, therapists, etc since this time...he was recently diagnosed with autism too...this was by the psychologist...his psychiatrist talks to me all the time about bipolar in young children, she has referred many books for me to read about bipolar, but has not officially diagnosed him as bipolar...she tells me she wants to treat symptoms, not labels!?!?
 
So now we are to the medications...he has failed tegretol and carbatrol for seizures...we are now on depakote with some seizure control...the docs have increased his depakote levels used to treat bipolar with no effect, so they lowered the dosage back down to seizure control level...they have given him ritalin and geodon, with no effect on his behavior, in fact he always seems to get worse from new meds...he has also failed klonopin, which they were using for seizure control, but had such horrible behavior side effects, they stopped that...we are now supposed to try zyprexa.
 
If you are still with me, lol, I guess I am wondering which way to turn here...I read books about bipolar and sometimes I think that sounds like Mason and other times I think there is noway that is my son, he doesn't fit the criteria...the same with his autism...I've been to autism forums and epilepsy forums, and the support there is great, but I just can't seem to find anyone that sounds like my son...it's hard to ask advice when there isn't anyone that truly understands what is going on.
 
My son's behavior in a nutshell is wild...every second of everyday is different...he does some of the typical autism things like "stimming."  He seeks out weird things like loud noise or rocking or spinning, it seems to help him cope with things...he has a lot of sensory issues, with sound and touch...he has the typical socialization deficit, but sometimes I wonder if it is autistic or if he is just withdrawing...he has developmental delays and speech delays, so I know somedays he gets upset, just because I don't think he can express what he is feeling...he has good enough speech to relay what he wants but to really tell us what's going on in his mind, he can't do...his emotions are all over the place...somedays he is crying or angry all day...other days he is happy or angry all day...other days he is just plain DEFIANT!!  I do notice the one consistent emotion he has in anger!  But I can never figure out what is exactly causing it or get it under control...somedays he gets agressive when he is angry, other days he just screams at everyone...nothing ever seems to be consistent, other than the fact that he is not a happy little boy!
 
Is this typical behavior for someone with bipolar?  And if so, why can't we seem to find a medication that helps?  Could his autism be interferring or shouldn't that matter...could the seizures be interferring?  I have talked to so many doctors, and it seems like the most common answer I get is--"let me refer you to..."  I couldn't stand going through another evaluation by yet another doctor!
 
I'm trying to treat each "symptom" differently...we have tried sensory diets, therapies of all sorts, and of course medications.
 
Does anyone have any advice they could give me?  I hate seeing my son suffer like this....any help at all would be sooo sooo appriciated, even if it's to point me in the right direction to another forum!  Thank you so much for taking the time to listen!  I'm just so lost right now, I don't know what to do.
 
Niki

glorydays
New Member


Date Joined Jun 2007
Total Posts : 15
   Posted 6/5/2007 1:04 PM (GMT -7)   
Hi  Emerald 521, I'm also new to this site so am looking for a parent support grour also. My son is 9 years and his name is also Mason, he has Aspergers and is Bipolor has had multiple episodes of mania and was recently hospitalized. Is currently on Focalin,Lithium,Clonidine,Geodon,Cogentin and
Prevacid. I understand the exasperation ur feeling am wondering if u have heard of Adaptive Behavior Analysis or ABA for short. You can find info about it on the web by searching ABA,and most school districts can provide this training under special ed. programs.Is your son in public school?,general setting? My son had to be put in a 1 on 1 teacher placement back in Feb. shortened school day after the hosp. stay whole days are too much for most of these kids.Also u made at some point need an aide for him at school. We deal with the sensory issue's all the time too. Anger issue's ,crying,frustration,all seem to go along with both diagnosis.My Mason has gotten to where he is afraid of EVERYTHING! SAD! His therapists try's lots of relaxation techniques with sometimes helps. Meantime I try and think of other info for u.

emerald_521
New Member


Date Joined Jun 2007
Total Posts : 3
   Posted 6/5/2007 2:55 PM (GMT -7)   
Hi glorydays...I'm so glad I found someone here, I wasn't sure if I would get any responses...I know there has to be a forum for parents, I just haven't been able to find it...maybe someone will be able to help us! :-)
 
I have heard of ABA just recently...right after Mason's diagnosis of autism the psychologist recommended it...now the downside is that there is a year waiting list here in Wisconsin where we live!  I actually just talked to his psychologist and he recommended a book called "A Work in Progress."  He said it might be helpful to me in finding some new solutions to deal with Mason's behaviors...I told him I think I have read every book I can, but he said it is similar to an ABA program and it might help me learn some techniques to help Mason...Did you do ABA...everything I have read so far talks about earliest possible intervention and Mason will be 7 by the time he is in the program!  I am so worried that it will be too late!  I wish someone would have told me about this years ago!
 
Yes, Mason is in public school...we only have mainstreamed schooling here, so he gets an IEP (individualized education plan) that helps him get the extra that he needs...he does get 2 hours of aide time, speech and OT...that is all the school says they can offer!
 
Do you find when you are trying to help your son with behaviors that you don't know which way to turn?  Do you think all behavior is treated the same or does it make a difference with an autism vs bipolar diagnosis?  I find myself not even knowing which doctor to call anymore when I have a question about something!
 
Do you feel you have any success with medication...your son seems to be taking a lot of meds, does he have a lot of side effects?  It just seems with Mason everytime we start a new med we have some sort of horrible side effect and I sit and wonder if it is even worth it!  I know he has to have it, but wow, it sure can be frustrating!!
 
Do you think, in time, you will find what your son needs to live a somewhat normal life?  I don't focus so much on the future, like will he live alone or even get married etc...but I'm so wrapped up in "will this be how he has to spend the rest of his life?"  I would just love for my son to live one day of his life happy...and if all these therapies, meds, etc. will get us there, I won't give up...I won't give up anyway, but it would be so much easier to keep going somedays if I knew there was at least a chance!  I have an autistic nephew...it's severe and he is non-verbal and mentally retarded and he is the happiest boy I know...I just want Mason to feel that, you know??  Wesley (my nephew) won't ever be able to live alone and do a lot of the things "normal" children experience as they get older, but he is just sooo happy!  And I love that!  That's really all I want for Mason!
 
Do you have other kids?  Does this interfere with their lives?  I have 3 others...2 boys older than Mason and a daughter who is younger...It gets very hard here sometimes, making excuses to why we can't go somewhere or do something, because I find myself not wanting to deal with how Mason can handle it...I know it's wrong, but it just seems easier to deal with at home, rather than in public...not to mention the stares and comments ppl throw at you!!
 
Well thanks for responding to this...if I find a parent's forum, I will definitely let you know!  I'm sorry I am throwing all these questions at you, like I said earlier, I just don't know where to turn!  Thanks for listening, and keep in touch! 
 
Niki

glorydays
New Member


Date Joined Jun 2007
Total Posts : 15
   Posted 6/6/2007 6:56 AM (GMT -7)   
Hey emerald 521, It's early morning here in Texas, just checked in,wanted to give u hope . I've volunteered most every day for the past 14 years in public school as all our children have gone thru.  Recently as they've begun to use ABA I've seen it work very well with some very distressed children but it does often take 2 years to get the desired compliance and benefits. mason only began Aba back in March due to my being in denial mostly,not wanting to remove him from the regular classroom,etc. He had gotten to where he was unable to do his work or get along with his peers and was just so stressed -running away from his teacher, they were concerned for his safety. I would like to see u check into a ABA trained person in ya'lls district to work with Mason the school won't offer 1 unless u push for this service or get them to have someone trained ,he couldn't be their their only autistic child and all spectrum disorder children would greatly benefit from this type of training.I very much see Autism vs. Bipolar behaviors as comorbid often times I too have a difficult time in figuring out what is going on with him and how I should handle some situations. He is extemely sensory sensitive, seems our whole life is determined around him what we can do and go. We have other kids also 2 girls-32,and 26-and a son 22 and we are worried that they may someday have to care for Mason. Noone is able to predicte a future for our children we have to prepare them to the best of our abilility that's all any of us can do. Our grown kids all are very understanding of Mason's mental health and would do what was in his best interest if we weren't able to.I's been easier for us I think being our kids are grown than it would be explaining to young children so im not much help in this respect i guess. Medications they are just a crap shoot he's been on several different ones with varying side effects, u just have to be very patient until u get to the right combination that works with the least side effects(the psyh doc warned us up front)other people all said thesame thing so i don't get too frustrated with the changes and adjusting of them. He was having so many episodes of mania ,that was worse than any changes of meds,then having to be put in the psyh hosp. was just so traumatic for our whole family ,3 months later we are still trying to cope. Dealing with autism and bipolar is day to day that's how u r going to make it . :-)   

emerald_521
New Member


Date Joined Jun 2007
Total Posts : 3
   Posted 6/7/2007 6:24 AM (GMT -7)   
Hey glorydays...I just wanted to let you know that someone on the autism board gave me this website....it's for parents of bipolar children...she said it might be worth while checking out...I haven't had a chance yet, but will as soon as I can...today is a little busy, it's the last day of school here, so I have a million things I need to get done before my kids are home ALLLLLLL summer, lol. But here is the website......

http://p196.ezboard.com/blaughterandsurvivalinbipolaritaville63885


I don't know if I copied that in right because it doesn't look like it is linking it, but you can just copy and paste it.

Anyway, hope you have a good day and I will talk to you soon....and thanks again for all of your help with my questions!!! :)

Niki

glorydays
New Member


Date Joined Jun 2007
Total Posts : 15
   Posted 6/7/2007 11:13 AM (GMT -7)   
Emerald thanks for the site I came on 1 at the NAMI website also. Go to www.NAMI.org on the home page you'll see Find support box click on the Child/Teen Headline it will take u to a discussion group for Parents/Caregivers click on it and there's numerous listings of parents discussions about their children i found it quite informative u have to sign in a user name , u can find me as gloryday1. Hope to here from u again have a good summer!
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