Need help finding resources for children with bi-polar disorder PLEASE!

Discussion in 'General Parenting' started by smilingthroughmadness, May 5, 2011.

  1. I am brand new to this website and found it while trying to find resources in regards to my daughter. I'll try not to be long winded but I am just having one of those days and am completely overwhelmed right now!

    difficult child 1 has recently been diagnosed bipolar. We are still in the early stages of figuring things out. She has been in weekly therapy with her new therapist for a few months now. She has been in and out of therapy since she was about 5 and every one of them told me it was just a phase, or it was normal. She was also previously diagnosed with parent child conduct disorder, except that she doesn't detach from my hip a lot of the time and has severe seperation anxiety when I leave. The counselor and pediatrician have been working together for a couple months now too. She's had an MRI (because she claims to see flying blue hippo's around the house), she's had a sleep study because she gets very little sleep for a couple weeks, but then sleeps half the day gets severe dizzy spells, migraines, and stomach aches and I can't get her out of bed. There is no sleeping disorder (per se). She has also been through blood tests to make sure all body levels of everything were normal, thyroid test, etc. She is seen weekly at the therapist and we are working on getting her to recognize her moods and feelings so that she can learn to better manage them. We have not told her the diagnosis yet and are working to figure out how to approach it. We are not to the point of medication yet as we are all kind of in limbo awaiting a neuropsychologist test.
    I pulled her out of school after the 1st quarter because she was failing. (This was her 2nd round in 4th grade as the school recommended holding her back last year). I have requested an IEP and the school did their testing and it all came back "normal". She tests above her grade level for academics (had I known this last year, I wouldn't have held her back either). And her behavioral testing was "normal" as well so the school came back and told me that because her testing was fine, it must be something at home that was causing her failing grades and that failing grades were not a reason to move her to Special Education classes. So I pulled her out and I am currently homeschooling her. The diagnosis of bipolar is a relief and sooo hard all at the same time. I have been filling out a mood tracker for a couple months and I have a better idea of what to expect from her. My problem is trying to mainstream her back into the public school.
    I'm trying to find out that with her being diagnosed bipolar, does the school system now HAVE to do an IEP for her? I really would like her to be back in school for next year, but I don't have a lot of options. We live in small town Wisconsin, with only 1 elementary school, 1 middle school and 1 high school.
    I'm also wondering if anyone has any resources for finding where/who will do a neuro psychiatric evaluation because we are currently on state help for medical insurance and I am not finding anyone who will accept the insurance and do the test (my husband was laid off in January and so we lost his insurance and he just recently found work and will not be eligible for insurance for 6 months and I don't want to wait that long if I don't have to). I am willing to drive to a big city for the testing, I just need to find someone to do it.
    Any help or resources would be greatly appreciated!!!! I've been all over the internet and it's so overwhelming trying to find anything specific.
    Thank you so much!!!
    smilingthroughmadness
     
  2. P-nut2004

    P-nut2004 New Member

    Hi, and welcome :) I'm sorry you having to go thru this but you have come to the right place. I'm fairly new here too so others with more experience will be by soon to comment.
    Getting a neuropsychologist evaluation is definitely a good next step, Im not near you so I can't help with finding one but I can tell you L's was covered by medicaid. After we got L's neropsych evaluation done we received a written recommendation from the doctor that she have a 504 plan, which is similar to an IEP. Below is a link about 504 plans (basically it says your child has a disability that effects their ability to function normally & outlines what provisions should be made) from my understanding an IEP is more in depth than a 504 but when I spoke to Ls school they told me the process in our district is one & the same (not sure if that's correct)

    http://www.wrightslaw.com/info/sec504.index.htm

    L was diagnosed with Temper Dysregulation Disorder which the psychiatrist explained to me is replacing 'childhood bi-polar' in the new DSM and most likely she will receive a diagnosis of bi-polar in the future. We also went thru the school claiming L was normal and then once they decided she needed to be evaluated for an IEP they drug their feet until the end of the school year (last yr). After several very disturbing events I took things into my own hands, insisted that her pediatrician refer us to a psychiatrist & insisted on a full panel of testing including neuropsychologist. L is also above grade level in academics but her behavior (even with medications) is still an issue at school and much worse at home. We did not get the recommendation for a 504 until a couple months ago and I am still waiting for a call back from the school so we will definitely not have a 504 or IEP until next year. I hope some of this helps.

    ((HUGS)) You are not alone
     
  3. compassion

    compassion Member

    CABF (child and adolscent bipolar foundation)
     
  4. tictoc

    tictoc New Member

    I attend a support group through the National Alliance on Mental Illness (NAMI), which has been very helpful.
     
  5. susiestar

    susiestar Roll With It

    Welcome! The others have given some great advice.

    I strongly suggest that you get a copy of The Bipolar Child by Papalous. It is an incredibly good resource.

    Many people with bipolar disorder cannot function with-o medication. The biggest problem that I have seen is that docs do NOT want to follow the medication protocol that is approved for bipolar. It is outlined in the book and on the website for the Board of Psychiatrists - both the adult and pediatrician boards (the group that certifies docs in that field). The protocol calls for first using a mood stabilizer and even going to using two of these until moods are not cycling. An atypical antipsychotic like abilify, risperdal or seroquel is often used at that stage and is part of the protocol. This helps with anger and aggression.

    Once moods are stable then medications for ADHD, depression, etc... can be added - SLOWLY. The medications for depression, ssri and snri medications like prozac, effexor, etc... seem to be the medications that docs want to use first. This is a BAD thing because they can CAUSE mood cycling in people with-o bipolar. Most people with bipolar go into a very bad state on these medications. SOmetimes they think they are helping at first but then they later realize that the medications are causing increased problems. We had one psychiatrist (psychiatrist) who wanted to say that my difficult child had bipolar and wanted him to take lexapro to treat it. I knew that this wouldn't help and had the Bipolar Child with me because I was ready for him to try this. We already were srue that my difficult child did NOT have it, but it was a new psychiatrist and we had been through this with several docs. So I opened the book to the protocol and asked WHY he didn't want to follow it. He wasn't happy but admitted that he kenw it wasn't the right medication for the disorder. I never did get any real explanation, but have had 7 different docs suggest that it was bipolar and that he take a SSRI/SNRI medication to treat it.

    If you can find a support group through NAMI in your area, it will be a godsend. THe one in our area is awesome.

    Also read through as much of the archives as possible - there is great info in them.

    I urge you to start to write a Parent Report. The link in my signature will take you to ta thread with the outline and explanation of this. The Parent Report is a document that you create about your child. It includes everything you have tried/done/thought/etc... about your child - the good and bad stuff. It iwll help you communicate with the various docs and other people who are supposed to be helping.

    I also want you to start thinking of yourself as "THE Expert". Not an expert, THE expert. You see lots of therapists, docs, teachers, etc.... and they all have opinions and ideas. they are Experts. but they are experts in a field of study. YOU are the expert in your child. THe docs spend 10 min every couple of months with your child. Therapists maybe spend 45 min aweek with them. YOU spend all day thinking of them and with them. You are their mother and the absolute expert in your children. Period. Don't let the docs bamboozle you or talk you into anything that your instincts say is WRONG.

    I made some big mistakes with my kids. Every parent does. But the biggest and worst mistakes were when I let someone talk me into something that went against that little voice that screamed it was wrong. I let a doctor talk me into keeping Wiz on a medication that seemed to make him angrier and angrier the longer he was on it. I let my brother talk me into letting him take my kids to the lake one July 4th. Just him and my 2 oldest. They wound up with 2nd degree burns because he refused to let them use sunscreen because I insisted they had to use it. They lost 2 YEARS of playing outside in the daylight because the burns were so bad, plus spent a month in agony. I let another doctor tell me that effexor had no withdrawal and my son nearly went nuts from it (I also was on it and had awful withdrawal - and could see why he ended up in a psychiatric hospital for 3 days from it.)

    We all have stories like this, mistakes we made because we let ourselves be convinced our instincts were wrong. So no matter what the docs tell you, follow your instincts as much as you can. Hopefull you will find a team of people that will work with you. Sending LOTS of hugs!
     
  6. Jena

    Jena New Member

    hi and welcome and yes you are soo not alone!!!

    susie suggested an awesome book! i remember the first time i read it i was like wow this is my little girl. you sound like me, i went thru all the same channels........ we're just now doing a sleep study because i want to see what type of testing they can do. we have been playing the medication game though since about age 7. i had to, same issues you struggle with and she wasnt' able to attend daily school. anxiety issues and she also suffers from Obsessive Compulsive Disorder (OCD).

    i have recently been working with a cbt therapist to address her anxiety issues which as you have come to find is at the core of the disorder. my daughter is benefiting somewhat from it. we did regular pyschotherapy for years with zero improvment.

    i've come to find that structuring her day, we have a dry erase in the kitchen for the weekly schedule is very helpful for her and me also. i am now copying that and placing in her room. it lowers the anxiety. we are also very open with her told her about her diagosis and we talk about her moods and sleep issues. it really does hinder regular life from occuring. i sooo get you!!!

    good luck,others will follow those websites they listed are great too! oh another trick is downloading meditation music, calming music in their ipods. we started that and it seems to help with self soothing at night. she's herendous at night with-sleep.

    welcome again!!
     
  7. Thank you all so much for the info!!! Yesterday just happened to be a really down day for her and I could't get her off the couch. I was on the phone with her counselor and pediatrician off and on all day. Because she's also been having dizzy spells to the point of vomiting...we've all come to the conclusion this is a completely unrelated issue to the bipolar and she is now going in for auditory testing on the middle ear to figure out the dizzy spells. It just seems like it's one thing after another with her.

    My biggest concern was wether or not the school here actually HAD to listen to me now and if bipolar disorder was enough to get her on an IEP with the school. I love her to death, but this homeschooling her and taking care of a toddler, while still getting everything done for a family of 7 and babysitting my sisters 2 kids 3 times a week is not working out well. I know part of it is because I'm mom, so I sometimes I wonder if she's just telling me she's sick, or tired, or whatever the excuse seems to be. But when she's up, there's no problem with getting school work done. I just don't know if I can handle another year of her being homeschooled! I definitely don't want to fail her education wise, even though I have a great support group for homeschooling, it's just not the same as the social interaction you get ar regular school. And along with that, my sanity is really starting to teeter because we have very little seperation from each other.

    I feel like I've definitely found a counselor and a pediatrician who are actually listening to me for the first time ever! Amazing!!!

    Thank you all again so much. I will defintely check out those websites, the book and look into support groups for both of us. She only has 1 friend that can actually deal with her so I know it'd be great for her to find other kids who are going through the same thing.
     
  8. P-nut2004

    P-nut2004 New Member

    I just wanted to second what Jena said about structure, especially since your difficult child is home all day now. We have an hour by hour schedule posted all over the house that we stick to, it helps alot to alleviate anxiety & also I refer to it like its LAW "You have to do your homework now because that's what the schedule says" etc. Anytime we have something coming up that will interfere with the schedule I warn L in advance several times, this has really toned down the number and severity of meltdowns over what needs to be done or what is about to happen. We also have a weekly schedule and a monthly calendar that I write everything on, even grocery trips or other errands if they will take place while L is home, this way there are very few unexpected events. L is also in weekly play/art therapy which helps her tremendously, her therapist works in CBT while L is drawing or playing & has taught her alot of coping skills like deep breathing, counting etc. L loves her therapist and can't wait for fridays to get here so I know she feels better on some level after going as well.

    Also, Susie is correct that many bi-polar ppl (I speak from experience) cannot function without medications & you need to inform yourself about the proper medications before going to the psychiatrist because they will try to give you the wrong ones. For me, Lamictal with an AD (currently wellbutrin) and an anti-anxiety medication is a good mix (it took me 16yrs to get to the 'right' diagnosis & medications), but everyone is different. Ls current mix of medications is not as effective and I am trying to convince her psychiatrist to adjust them or find a new psychiatrist. Susie is also very right that we all make mistakes, every parent does, all you can do at this point is let go of any regrets and try to inform yourself as much as possible so the future will go smoother.

    This site has been a HUGE help for me and the closest thing I have to 'therapy' right now, don't hesitate to ask anything or vent about anything (within the forum guidelines of course) everyone here is awesome and even if we don't all have advice you will get some relief from knowing we are all dealing with similar situations.
    :Grouphug:

    *forgot to add that melatonin is working well so far for Ls sleep issues
     
  9. Thanks for all the tips! I do have a daily, weekly & monthly schedule and that seems to help to a certain degree. But there are still things that I just can not get her to do. As of right now, we have been going back and forth about her getting in the shower and changing out of her pj's. Schoolwork was a huge challenge this morning and we got through most of it without major incident. The deal between her and I was, showers had to happen at the minimum, every other day. Today's the day. And we're back to butting heads. I have come right out and told her that she will not be leaving to her friends house this afternoon without getting in the shower...she still hasn't gotten in and has motivated back to the couch. This is where she's spent most of her time the last 3 days. I'm just soooo tired today with the constant refusal of everything and anything. Ugh!!!! At her next counseling session, I am sitting with counselor with-out her and going over how I can better manage her and her different moods. How can I get her off the couch to do schoolwork without having a huge explosion about how she doesn't feel good and she can't do the work. This is where mainstreaming her back into public school would be a big help to both of us. Now if I can just get the school to do something for her, like and IEP...but that's another fight for another day.

    I really hope that once the neuropsychologist is done and they decide on a course of medications, that I at least meet somewhat less resistance in the day to day activities. It's not like it's new, we've been doing this (all though, this is her 1st year homeschooled) since she was a toddler.

    We are first going in at the end of the month for an auditory test. With her depressive episodes, she was getting dizzy spells and migraines. In the last month or so, the dizzy spells have gotten progressively worse to the point of blurry vision, imbalance and puking. Leading the counselor and psychiatrist to agree that this is something beyond the bipolar. So here we go for another round of testing to figure out what's wrong. And this alone is enough to set her off and she does not respond well to being poked and proded (not that many do - but her reactions are over the top and then some).

    It's Friday, I should be happy, but I am exhausted. It's been a long week and I wish I could curl up on the couch and sleep.
     
  10. whatamess

    whatamess New Member

    http://www.dpi.state.wi.us/sped/tm-specedtopics.html

    write a letter to your school district asap and request an evaluation for special education. It has to be a letter and not just a phone call. They have a timeline to follow to get the evaluation done and if you get your letter in now, your difficult child might be able to have services in place for Fall. If she has a diagnosis and it impacts her academic functioning, she will likely qualify under EBD (emotional behavioral disability- this is where almost all mental health diagnoses fall in Wisconsin with the exception of ADHD).
     
  11. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I live in small town Wisconsin too. We only have two buildings, one for elementary school and a combo building for middle school and high school.I have a son with Autism Spectrum Disorders (ASD) who goes to a neighboring school that has one elementary school (starts with H), one middle school, and a high school. Do we live in the same place? I know of a lot of resources for a lot of things in my area (and some in other parts of Wisconsin). I'm in mid-Wisconsin. Are you near me? If so, I'll send you a private message.

    Do you have Medicaid? Many Wisconsin professionals in hospitals take Medicaid. In my are of Wisconsin they ALL do. Has your child ever had a neuropsychologist assessment?

    I can put you in touch with a parent/child advocate to help you with the school battle. It doesn't work well to fight this battle without one. They don't necessarily have to give your child an IEP and will fight you tooth and nail because your child doesn't exactly fit into the cracks.
     
  12. Marguerite

    Marguerite Active Member

    The dizzy spells and vomiting - if the middle ear tests come back negative, consider the possibility that this is an anxiety-related problem. We have learned to not underestimate how bad they can feel, purely due to anxiety. difficult child 3 has reported feeling impending doom, being convinced he is dying, convinced something really catastrophic is about to happen. Even though he is autistic, at times he has shown extraordinary sensitivity to a place or other people's responses. When he was 11 we visited Port Arthur in Tasmania, a historic site that used to be a convict penal colony. It's actually a very beautiful place, but is also the location of what I have been told is the worst massacre by a lone gunman, in the world. That massacre led to Australia's current strict gun laws. When we were there, nobody mentioned the massacre. The name of the gunman is not uttered in that state (he is currently in jail, they threw away the key). But difficult child 3 kept saying, "I have to get away from here, something bad is going to happen. This is a bad place, there is something very bad here..." and yet he calmed down when we got into a boat to tour the outlying islands. The gunman never went near the boat or the islands. I must admit - I was spooked by it. difficult child 3 was even upset when outside in the carpark of the place. And he had absolutely no knowledge of the massacre, or the way the gunman hunted a mother and two girls up through the carpark. It was a very disturbing experience for us that day. When easy child 2/difficult child 2 wanted to go back there the next day, we had problems with difficult child 3 again, even just dropping his sister off in the car park. He insisted we leave the motor running.

    Since then, in other travels of ours, difficult child 3 has reacted to his own fears about a place, and it has taken a lot of effort to talk him down. Usually it is only after we have left and are putting some road distance between us and where we were, that his symptoms begin to ease. Nausea, mild fever, sometimes vomiting, looking very green, lethargic, tearful.

    Marg
     
  13. She's had an IEP done...we did one earlier this year after I pulled her out of school and she passed everything with flying colors. Academics were never a question, but she was repeating 4th grade this year and at 1st quarter cards, she was bringing home failing grades again. So for the IEP, she tested at grade level for academics and the behavioral side of it was a mess. Her teacher filled out her stuff and it was all normal, I did my side and it was off the charts. Basically I was told, even though she's a behavior problem at home, because she shows nothing in school, they can't do anything for her. This was all before her bipolar diagnosis which has just come. We are in the process of trying to get a neuropsychologist done. She's been through all of the basic tests, and an MRI, and now we're on to auditory testing, etc. Basically when she's in a classroom setting, she shuts down. Instead of acting out and becoming a "behavior problem" she just gives up and quits and doesn't care. She doesn't bring work home, she would tell me she all ready did it, but the school never called to say she wasn't turning work in. She would go to school and tell them she left it at home. So this year was her 2nd go around in 4th grade because they told me last year she needed to be held back because of her grades. At 1st quarter report cards, she was failing again, so I made the choice to pull her from school and home school her. She's doing great (when we're not on some type of emotional roller coaster, or I can't get her out of bed)...academically she's doing great and the IEP testing said the same thing. They basically told me that failing grades were not a reason for Special Education, and that I should help her out at home more...

    That's why I was wondering, with her finally getting a diagnosis, does the school now HAVE to do something? Even though, she doesn't "act out" in school...

    This is so frustrating...I can deal with the bipolar kid, but not a bunch of grown adults who don't listen. I really just think this school district is unable to handle kids with any type of problem unless its a learning disability. My son (difficult child 2) has an IEP and has learning disabilities (along with other issues) and they do fine by him...cuz he "qualified" for Special Education.

    Thanks to everyone for all of the help and suggestions! You have no idea how much I appreciate it all!!!
     
  14. whatamess

    whatamess New Member

    Wisconsin Department of Public Instruction has the A-Z topics under Special Education and within that area is EBD (emotional behavioral disability) there are many document by Lynn Boreson that speaks to how mental illness can affect school-including withdrawal, so the acting out behaviors are not a necessary indicator. Also, to qualify for EBD the symptoms must be present in two settings (and I believe school has to be one of them). If you can't get her to qualify for EBD, the diagnosis could qualify her for a 504 plan.
     
  15. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I would definitely look into an EBD. I don't think they have to give the iep but many with Bipolar do qualify. I would definitely be sure to bring an advocate with you to the meeting. Having the results of a neuro-psychiatric can also help (again not necessarily but it can). Are you still looking for a neuro-psychiatric in Wisconsin. If so let me know and I will pm you the name of one who did my son's evaluation.
     
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