Back on-line and the diagnosis's are starting to sink in.

Discussion in 'Early Childhood Archives' started by totoro, Sep 21, 2006.

  1. totoro

    totoro Mom? What's a GFG?

    Well our computer's little engine exploded... sounds like my difficult child. So it was about 2 weeks without any connection to the world. ( besides our small town paper!)
    Anyway difficult child's final summary report with the nuero-psychiatric is in another week. But so far with all of the driving/testing long days... he feels pretty confident that she... ADHD, MDD (major depressive disorder) and Sensory Integration Disorder (SID). He is going to elaborate on any other issues he may feel she has next week, after he goes over all of the tests and his findings and studies of her with his colleagues... sigh. (isn't this enough?)
    The only really cool part was we were able to catch a kind of meduim explosion with violence from start to finish on video, and we showed it to him and our other counselor and they both agreed it was awesome to see and helped really understand a lot!!! She didn't realize it was on, until the end!!!
    The other funny part was to sit and watch my difficult child go through all of the tests and to realise just how freaking antsy and fidgety she is! She was up on the table within 15 minutes of the first round of tests, shoes off, socks off in his face, lying all over the tests!!! He had to try really hard not to crack up, it was pretty cute and funy. She was spinning circles on her back legs in the air, I had to cover my mouth to not lose it!!! :rofl:
    Our wrap around counselor/psychiatric agrees with the diagnosis but she thinks the mdd is bipolar, which scare us. I would rather start with mdd, at least that is a little less severe?!?!!? I know these things can go haywire when puberty hits but we are hanging on to these young years and trying to get some help now so we can help her when that roller coaster ride starts (scary).
    So who knows this has been SO tiring and we haven't even started treatment yet and we are paying SO much because of out of network and deductibles..etc and now I am having a hard time sleeping, especially when husband is out of town for work...

    But, she loves pre-school! The Waldorf program she is in seems to be really good for her. Fingers crossed. She breaks down after school, but has kept it together so far at school and could care less about leaving me!!!

    She loves her Occupational Therapist (OT) and the counselor/psychiatric. We will not continue with the nuero-psychiatric after the final evaluation is over. It ends up being a 7 hour day for one apt. And we have no sitter for her sister, so far we have scheduled those apts. when husband has been in town but he works out of town for a week or more at a time. The nuero-psychiatric also wants her to see a Psychiatrist anyway for the depression, so we have to look into that...

    So all in all we kind of new this was going to be the diagnosis but it still hurts so bad to finally hear the words. I think it will hurt again next week when we go for the final treatment evaluation/diagnosis apt. I always feel like I am going to fall apart...
    I keep flashing back to my Mom's depression and her taking her life at 29 yo, and hearing my difficult child has depression is so freaking scary! It rips my heart out. I know we can help her and we will do what is best, but what if none of it is enough??????
    When she tells me she wants to die or aske me to kill her, I feel like we are living in a nightmare. How do I get her out? Safely?

    I guess I can only do one day at a time kind of thing and I think of each of these processes like a chapter in a book, I have to finish this chapter to continue on to the next one or it will ruin the story, there is no jumping ahead. Even if I don't like the way the story is going. :thumb-down:

    I just needed a big BOO-HOO for myself. I know you guy's have been through lot's of things like this- someone send a little hope. I feel so alone some days- the whole are you happy question??? I also just found out there are no support groups in my area, the counselor said she has a huge case load of kids, so if I wanted to start one!!! Maybe one day, sounds like a lot right now???

    I am really trying not to be angry and bitter I just thought that I had left all of my garbage behind when I get rid of my screwed up family, seems like the genes have followed me...

    Anyway so sorry, I am just feeling a little lost right now, my husband has been a rock but I don't want to put it all on him all of the time. I am SO greatful for this site.
    I will find out what test everyone has given difficult child, it has been a whirlwind, and post them, someone can tell me if they are BS or what. HA HA
    Thanks for listening it is nice to be back-

    I also learned the "hold" it has been very helpful, she actually feels better. Fisrt time it lasted over 30 minutes and she spit all over me and bruised the heck out of my sternum, but each time since she knows it is going to help her calm down and I think she appreciates it. One time she even asked me to hold her!!! :bravo:
     
  2. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Hey...I read your post and I dont often post over here because I dont have littlies but your post really got to me.

    Please dont feel so sad. I think your generation of kids with these disorders have the best hope so far. And its getting better all the time! Even when my son was your difficult child's age they didnt know what bipolar was in kids where I live and they sure didnt know what it was when I was a kid.

    Back when I was growing up, you got depression and bipolar on your 18th birthday with your cake and ice cream. Somehow it knew when the birthday was because no one under 18 could be depressed or have bipolar. LOL.

    So youre in a much better position now for getting better help and treatment. I have a lot of faith that in the next years that inroads will be made that may change even more how we are treated.

    All is not lost.
     
  3. totoro

    totoro Mom? What's a GFG?

    Dammit Janet thank you.... I know and I just need to get over this hurdle. The begining of the long road ahead. It also makes me think alot about my own issues... I have lots of hope for my little hummingbird!!!
     
  4. Ltlredhen

    Ltlredhen New Member

    Try and look at this time as the beginning of your journey of getting help for your difficult child. You recognize and acknowledge there is a problem and that is a big first step. Try and take things one day at a time and not look 5 or 10 years down the road. This is what helps me get by.

    I am so glad that your difficult child likes school. It sure makes it easier. My difficult child is still having some transition problems after school but nothing like at the first of the school year. Hopefully things will ease up for you in that regard.

    Let us know how the rest of the evaluation goes.

    :warrior:

    Donna
     
  5. tiredmommy

    tiredmommy Site Moderator

    The most important thing to remember is that she is still the same child as before the diagnosis. The medical community is much better prepared today to help your daughter than they were to help your mother. I understand a little bit about gene pool resentment and guilt. I first came here because I thought Duckie may have early onset bipolar, like my mother. I was so angry! I had made it through my childhood relatively unscathed. It seemed unfair that my child be burdened by a genetic predisposition that I myself had beat! I was angry and I grieved that she was not "normal". When I was finished, I put my anger, grief and guilt away. I didn't have the energy to deal with those emotions and help my child at the same time. You will reach that point too. {{{Hugs}}}
     
  6. smallworld

    smallworld Moderator

    Totoro,

    Once the neuropsychologist report is complete, it's also really important to locate and have your difficult child evaluated by a board-certified child psychiatrist who has experience treating kids with both unipolar and bipolar depression. And I mean evaluated, not just accept the diagnosis of the neuropsychologist. The fact of the matter is that at least 30 percent (and it may be higher) of children diagnosed with MDD actually go on to have bipolar disorder (we've been told this by the psychiatrists who treat my children and this information is also in The Bipolar Child by Demitri and Janice Papolos). There is also a syndrome called Severe Mood and Behavioral Dysregulation, which is being studied at NIMH by Dr. Ellen Leibenluft. Dr. Leibenluft believes children with SMD present with a combination of symptoms akin to an irritable ADHD. They are equally as impaired and trial as many medications as children with bipolar disorder. And they sometimes respond positively to the medications that treat bipolar disorder.

    The reason it's so critical to get a best guestimate (and I say guestimate because it's really hard to pinpoint a diagnosis on a young child, who in terms of growth and development is a moving target) on what's going on with your difficult child is because medications that treat ADHD (stimulants) and medications that treat MDD (antidepressants) frequently make children with bipolar disorder much worse. This happened to both my difficult children. My daughter was diagnosed with MDD at age 10 and took the SSRI Paxil. She completely flipped out on Paxil and now is improving on mood stabilizers, the medications that treat bipolar disorder. My son was diagnosed with ADHD and anxiety. He had many bad reactions to both stimulants and SSRIs and also is doing better on mood stabilizers.

    I'm really not trying to cast doubt on any dxes the neuropsychologist is giving your difficult child. I'm just trying to share our experiences in the hopes that it will open your mind to all the options out there.

    Best of luck to you.
     
  7. totoro

    totoro Mom? What's a GFG?

    Tiredmommy I do have hope that I will "let it all go" but I wonder where do you get the energy??? Where do any of us get the energy to constantly do this???
    I am not saying I want to give up or I am done but some days I feel so tired after 5 years of this and we haven't even started treatment yet. How do I get motivated to try new things when that is all we have been doing for the past 3 years???
    Does it just keep coming from within??? It scares me to think how tired we feel already and it is just the begining.
    I know I need a break it has been months since I have gone out with a friend or my husband without the kids. This is just so consuming right now, I guess we find out how strong we can be??? One more hurdle.
    Thank you for sharing
     
  8. tiredmommy

    tiredmommy Site Moderator

    You need to make time to care for you. Your daughter needs at your best to offer her the best guidance possible. How does a warrior parent do it? They don't have a choice. You come to the realization that life gave your child a bushel of lemons. You learn to make lemonade because wallowing in the pain of having a difficult child cannot be an option any longer.
    You need to read and educate yourself to be your child's advocate. Start figuring out what works and doesn't work. Only talk to supportive people and take "helpful" friends and family in small doses only. Being a parent to a difficult child is more of a marathon than a sprint, you need to pace yourself.
     
  9. DammitJanet

    DammitJanet Well-Known Member Staff Member

    You also learn to start dealing with the daily grind of gfgdom as kinda a normal thing. Right now you are in the "oh my goodness, there is an elephant in the living room" phase! The elephant seems enormous and you cant imagine how anyone can tell you to get it out of the house. Well you deal with that elephant and remove him piece by piece. I think the story is you eat the elephant spoonful by spoonful but I cant remember why anyones eating an elephant...lol.

    Try to find people who can handle sitting for your child. Be it a friend, family member, other sitter...someone. Make a date nite out with husband at least once a month and dont talk about kids. Take a bubble bath while the kids are asleep or away. Read a good book. Eat ice cream. Play outside with the kids. Be silly...blow bubbles. All this will help you get thru the trying times.

    Hugs.
     
  10. SRL

    SRL Active Member

    Good for you, Warrior Mom. You've accomplished a great deal in a short amount of time!

    Unless the diagnosis is so obvious that it's slapping you in the face (and I would guess the kid on the table spinning circles with their legs in the air = ADHD/sensory seeking is a pretty good example of that) it's a good idea to take these diagnoses when a child is young and consider them to be "working diagnoses". That is, you take them home, live with them awhile, do some research and rub shoulders with parents of kids with the same diagnosis's and see if they do truly fit. Sometimes the diagnosticians get it right the first time, sometimes they are in the neighborhood and the diagnosis's need a little tweaking, and sometimes diagnosis's can be dropped if the child responds well to appropriate interventions. There's no predicting that for sure now but by getting a very thorough multidisciplinary evaluation you stand a better chance of getting closer to the mark.

    My mother had bipolar (suicidal) and my father had schizophrenic tendencies and I can't tell you how that haunted me through my young adult years and in the earlier years of my parenting. It's been a great surprise to me and my sibling that neither of us struggles with issues along those lines and none of the grandchildren so far seem to either thus far. My difficult child's disorder tends to be closely associated with some of the issues from the other side of the family. Genetics are important but they aren't everything so don't let the family history paralyze you or set up a silent expectation for your daughter. Certainly don't ignore the family history but don't bank on it either! The one difference between my upbringing and my children's is that they have a stable homelife and parents with the time, resources and committment to do their darndest to help them overcome. The sooner you can channel your energies away from anger and bitterness (we all go through it!) into something positive, the better off you and your child will be.

    I agree with TM about the bushel of lemons: if there's one thing in life that has taught me life isn't fair and to not sit around expecting that it's been my difficult child. I think what struck me the hardest when he was younger wasn't how much trouble he was causing us but how hard it was to live in his shoes. As a little boy he was such a paradox--the happiest, most good natured of my children whose mood would turn on a dime to be incredibly angry and difficult. It made me so sad because I just know that this disorder robbed him from being a good natured, easy going kid. I have grieved for him in the past and no doubt I will grieve for him again in the future, but it's important to not let that be the wallowing kind of grief or else you get stuck in the muck.

    Time to myself is critical to maintain. When the kids were young I got out at least once every weekend when my husband was home to watch the kids--usually once that would be with a friend to the coffee shop. I always had a project going on to keep my mind engaged elsewhere (church, writing, hobby, etc). I did my best to get enough sleep otherwise I didn't have the resources to cope well. Some moms seek relief through exercise and honestly a good number of our moms have sought out counseling and/medications to help.

    I think you will find a big difference in results when you are pouring in tons of energy into a child without knowing what issues they have vs. having a good grasp on their issues. I just think back to my son's sensory issues alone and how much time and energy it took me to deal with those meltdowns, administer consequences, follow through, and recover only to be back to the same spot a week later because none of those things I was doing could have ever helped him. That same amount of time and energy spent taking a kid to therapy and shopping for the right equipment to have a variety of sensory input at home was time well spent however.

    Hang in there. Things are going to get a lot better.
     
  11. Fran

    Fran Former Site Owner

    totoro, I read your post and recognized those feelings. I remember just being terrified to look into the future and to project my difficult children behavior forward 5, 10yrs ahead. I didn't know what to expect and that, for me is very frightening. I didn't know how to prepare or plan. I didn't know anyone with a child like mine or who was dealing with the same sort of issues.
    Fortunately, you have many parents who have been through what you have been through.
    Some of us have been through all the things you fear. Our difficult children and ourselves are still here. We still love our children and we are still warrior moms looking for the best way to help difficult child function in this world.

    My difficult child was a delight as a young child. He has/had gifts I could never have but he had to learn some other skills to function. We butted heads and still do. He wants to be a free spirit with no restrictions and no demands. He definitely marches to the beat of a different drummer. I don't mind that part as long as he learns to function so that he will have a life of his own.

    Hang in there. You are showing that you are up to the task of handling what is being given to you.
    We are not super parents. We are regular parents who chose to rise to the occasion of helping our children. It is an exceptional effort and incredible amount of work.
     
  12. howlongto18

    howlongto18 New Member

    I'm dealing with the same emotions right now. It's funny how you can get into this coping mode and convince yourself that you're holding up just fine, and then something makes it sink in and you realize you're not even dealing at all.

    We just got a diagnosis last week of Mood Disorder-not otherwise specified, with very high suspicions of bipolar. The psychiatrist is pretty positive that it's BiPolar (BP) but because of his age is not ready to settle on that. Watch her close if they start her on an antidepressant or stimulant for adhd... our psychiatric said it's possible that Juan Carlos may have coexisting adhd, but that he wants to get the manic symptoms under control before confusing everything with more medications. I am terrified of what the future could hold as well. When the psychiatrist started making us aware of suicide rates I can't tell you how horrible I felt. I think he was trying to ease our minds that with treatment the rates are much much lower... but my mind instantly went to, what if he refuses to take them down the road? That 15-20% rate sounds terrifying when I consider that possibility. Our son hasn't really shown the depressive side, but we were told that often it doesn't manifest until later. Another thing I worry about is that when he's manic, he thinks he can do anything - once when he was two he attached a chain to our trailer and his bike, he tried pulling the trailer and when he couldn't he thought there was something wrong with the chain - I worry about accidents down the road... I'm a planner, so it's hard not to think of all the possibilities. If my kid is sure he's a superhero, is he going to convince himself he can fly someday? Possibly. It's too much to think about, yet I can't stop thinking about it.

    I think for me the hardest thing is that this isn't happening to me. I like talking through my feelings, but I have to be careful whom I choose to confide in now, because it's my son's reputation. I've had to face the fact that many of our family members aren't really as supportive as we thought they were, and are merely curious. It's hard to face that you have less friends than you think, and something like this makes that crystal clear. We have a lot of friends and family, but it seems that most of them are shallow friends... there when it's good times, but don't want to deal with anything else. One of my closest family members has started pulling away because of this... I guess it upsets me because I've always been her cheerleader, and we've always been close, but this isn't much fun, and she's finding it easier to pull away... what do you do? Hubby may be getting a job out of state, and we've decided that having some distance from family (only two hours or so away) will actually help us to like them more. :smirk:

    Anyway - I'm turning this into my own rambling vent. I just want you to know that you're definitely not alone in your emotions, and the good thing we both have going for us is that we have sought help early. I can't imagine trying to work through this from scratch during adolescence.

    Better go - Juan Carlos is finishing his snack and movie, and the babe's crying... I'll hang in there if you will.
     
  13. dreamer

    dreamer New Member

    One of the hardest but most useful helpful things I have learned...we live not just thru things, but also sometimes we learn to live in spite of them, or around them.
    I used to always have a plan. It used to work, too. Now? so much has gone on and I am finding out sometimes Life has it's own ideas. I do still try to have a basic plan, but.....more and more we wind up simply living right now. Sometimes thats all the energy I have. and if this very moment is ok..I treasure it. If this moment is not ok, I try hard to remind myself things do change, and maybe later will be better (later as in tonite or in the morning) I try hard to not borrow trouble from the future.....and I try to seize the moment when it is good. The elephant in the living room? We tossed a swag lamp off it's trunk, threw a pillow near its feet and curled up under it and well- it has just become part of Life.

    My middle child when she was about 6 and her older bipolar sister was almost 8, the younger one described her older sister as......well, thats just her......no anger, no malice, just a simple fact......my sister is who she is, thats all. I guess thats kinda how I have begun to see the elephant...it just is.

    If it helps any, "I" am bipolar, and I ran hypomanic all my life......and somehwere around age 20 or so, it occured to me I could harness the positives of being hypomanic......LOL- it enabled me to work a LOT, enjoy the challenges and busy-ness of a physically active and challenging job AND also go to more classes as well, at the same time. Meaning eventually I was not just my first love- a waitress, but also a cosmetologist, a licensed Realtor, a certified nursing assistant and then a nurse. I also even took and passed all the tests to be a police officer. AND took care of both in laws, half a country away from each other, and then my very ill husband along with 2 difficult child kids and one gifted and easy child kid.
    I used my hypomania to my advantage.

    SOmetimes as our difficult children get older we can FIND a way to utilyze the things that are the symptoms or the problems. That is my wish for my oldest difficult child at the moment.

    Hang in there.
     
  14. totoro

    totoro Mom? What's a GFG?

    I just have to let everyone know that today I feel SO much better- I know the elephant is still here... the grocery store this morning with both the girls...head banging and licking the cart!?!?!?
    But I feel different after all of the encouragement, I am going to join the gym this weekend and get my easy child going to the day care there, for her well being also. My husband is going to try and work one week here and one in Chicago. So he can be here more.
    Things seem and feel better. I love those kids to death and would do anything for them and I realise I need to be OK to help them!

    THANK YOU
     
  15. OTE

    OTE Active Member

    Again, Totoro,
    I don't know the whole story but here there seems to be some definition of spinning legs in the air and head banging as ADHD behaviors? I submit to you that you could be looking at Pervasive Developmental Disorder (PDD) self-stimulant behaviors. Have you done the full multi-disciplinary including a Pervasive Developmental Disorder (PDD) specialist. With a bright child I absolutely would not let anyone but a Pervasive Developmental Disorder (PDD) specialist neurodevelopmental MD eliminate the Pervasive Developmental Disorder (PDD) diagnosis.

    I have an ADHD kid as well as a Pervasive Developmental Disorder (PDD) kid and a probably BiPolar (BP) kid....3 boys. None of mine have ever banged their head against anything. None have ever had self-injurious, at least intentionally, behaviors. Frankly, I've only heard of head banging in two contexts and neither is ADHD or BiPolar (BP).
     
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