Kind of sad about School

Discussion in 'General Parenting' started by totoro, Sep 9, 2009.

  1. totoro

    totoro Mom? What's a GFG?

    We are finishing up our awesome IEP report!!!
    But since we have been having lengthy discussions with Ms. J (K's teacher) she has unfortunately seen K start to fall apart.
    School is going on 4 weeks now.
    I think the School thought at first that we were asking for a lot. Because K presents so well and she communicates with adults very well.

    I guess after week 1 she has started not being able to keep up at all with the academic (just staying focused etc) load in class. She is rocking and hand flapping, hitting herself. Crying. These are brought on by stress and anxiety.
    Having a hard times asking for help

    Ms.J has had a huge dose of reality. The 2 other special needs kids in the class are nothing compared to K. Ms. J has finally admitted that they have never dealt with the ups and downs of a BiPolar (BP) kid this young.
    Because K is fine one minute and then can't cope or can't write or then hyper beyond words... it breaks the teachers heart.
    K is so sweet and not difficult she is just unable to slow her mind down or her emotions.

    This was a huge blow to husband and I. K used to at least be able to hold it all together in school. She would fall apart at home. Which was fine.

    I am so grateful that the school is willing to do anything to help her.
    They are having the Special Education person come in whenever K needs help. So K does not need to leave or feel "different" more than she does already.
    The "aide" will just come in like she is just helping everyone.

    SO we are on emergency mode with psychiatrist. Blood draw Friday if I can get in.
    Upping the Abilify and then seeing what her levels are with the Lithium.
    We will go from there.

    We are having psychiatrist apts every 2 weeks and therapist weekly still.

    I am just stunned about school and feel bad for her. She is not happy with her head right now. SHe likes School though which is good! :D
    She loves her AR and TAG classes. Actually even her therapy classes as well.
    I know we are lucky i just had hoped she would continue to do well in school.:(
  2. klmno

    klmno Active Member

    ((HUGS)) I'm sure that tears at your mommy heart. I hope the psychiatrist can come up with a better plan....and soon. It is good to hear that the school district is really trying and being conscious of her feelings thru the difficult times. Do you think there could be anything happening (perceived or real) that could be triggering this at school? Or do you think it's rapid cycling with no trigger?
  3. gcvmom

    gcvmom Here we go again!

    Try to focus on all the positives you have in place for K -- you are doing an awesome job, Toto! The stability will come, eventually. I think it is particularly hard for the young ones because they ARE growing. That alone is a cause for instability. You are constantly chasing a point that is always just out of reach because they are always growing and just one step ahead of you.

    We are enjoying a glimpse of the best stability difficult child 2 has seen in a loooong time. I think it's partly because he's slowing down for a while in his growth, and partly because we've found a medication combo that's working well. It's not perfect, and probably never will be, but it's an improvement and I'm happy with that.

    You've got K in a great school, with a great IEP, great teachers, great programs. You're dialed in with a psychiatrist and therapist that are working with you to help K get to a better place. You'll get there. It will be bumpy for a while, but you'll get there.

  4. crazymama30

    crazymama30 Active Member

    Hugs. It is so hard when we know they (difficult child's)want to do well but just can't. I am glad her teachers seem understanding, and are honest. I hope increasing the abilify helps. Maybe her lithium levels will need to be raised too. Was that combination of medications helping her in the past? I just cannot keep up with who is on what around here, my brain gets over filled.
  5. Mandy

    Mandy Parent In Training

    BIG HUGS!! We are going through the exact same thing right now however we don't have the evaluation. finished so Little Bear is in a normal setting which I know is not the best place for him.

    Little Bear also did great the first 2 weeks but I kept my heart guarded knowing that it could change. He is now having some issues but I try to stay positive everyday and focus on the good choices that he has made when he gets overwhelmed. I think the school still doesn't know what to do with him so I hope they get that evaluation finished VERY soon.

    Little Bear's Dr. told me school is one of the most distracting, hardest challenges for SPED children... and I definitly agree!!
  6. Over

    Over New Member

    That just breaks my heart. My difficult child has held it together at school so far as well. She just falls apart at home. I know that the day is going to come when she won't be able to. Like you, the teachers look at me like I'm crazy when I ask for accommodations and tell them her diagnosis. I'm glad the teacher seems to be understanding, that goes a long way. I'm hoping things get better for her!
  7. totoro

    totoro Mom? What's a GFG?

    Thanks as always!
    I know it is always the challenge with BiPolar (BP) kids that they change constantly with life! LOL
    But we have yet to find a medication let alone combo that works in the 3 years that we have been trying. We have had glimmers, but no success.
    Part of it, well a huge part was horrible psychiatrist's who were not well versed in Early Onset Bi-Polar (EOBP).
    So I told our psychiatrist yesterday that I am scratching all medications as of starting with her 1 1/2 years ago.
    I am up for anything besides Strattera! LOL
    I guess one of the bummers for us was that School has been a refuge for her and I want it to remain that.
    Also Lithium was our huge hope for a medication that would work. We are on our 20th medication I think...
    So where to go now? Lithium, if it is at a therapeutic level seems to be doing nada!
    But she is happy this morning, mornings are always good. :) Most times ;)

    I know it will work one day... reading how it does at times for you guys, lets me know I have to be MORE patient.
    I just as always feel bad for her.
  8. pepperidge

    pepperidge New Member

    It is so heartbreaking to hear her troubles....
    Don't underestimate the stress that a new school program can bring. Perhaps things will quiety down a bit.

    I am so glad you are somewhere with some supports.

    Your psychiatrist seems to be doing a good job. Don't be afraid to gently suggest at some point given the difficulty of the case, that you wouldn't be at all adverse to him consulting with whoever the expert is in the field on young kiddos with BiPolar (BP).

    Hang in there. Most of us have gone through medication trials for a number of years before hitting on a workable combination.
    At least you have ruled out a number of medications and some you can go back to. My own limited experience (and we are in the 15 or so medication range on both kids) is that it is pretty obvious when you hit a good one or even a really bad one.

    Hang in there. Hope your youngest is progressing too.

  9. totoro

    totoro Mom? What's a GFG?

    Thanks P
    I really do think our psychiatrist is good and knows her stuff.
    She just took an extensive trip to Europe to sit in on lectures for Pediatric and Adolescent BiPolar (BP). Even went to Russia.
    She is on the Board at the Teaching Hospital here. She left the Hospital and has her own practice because she felt they would not branch out and focus on Early Onset Bi-Polar (EOBP).
    They focus more on ADHD and Autism. Even though they have a Child psychiatric Dept.
    But she still teaches and consults.
    She is very stubborn and does not coddle which is why I like her but she does care. She is the one with a BiPolar (BP) kid so I would say she honestly does know and does care.

    K is a very weird case. My family has some very extensive Mental Illness which can't help...
    K just keeps changes she is so complex, we use every therapy we can on top of the medications.
    Horse Therapy starts Monday which I am so excited about! The cognitive therapy is also going well.
    We also have a psychiatrist that we can go to if this psychiatrist ever for some reason does not work out. But we are not giving up yet. :)

    Just the fact that we left our home and gave up everything for this, moved, sometimes gets hard. But we have gained so much, the School the Doctors. I would just like to see K moving forward.
  10. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    Your little girl is definately a tough and complicated case. My heart hurt reading about how high her anxiety is right now. I must say that she is blessed with an understanding and compasionate teacher and a school willing to do their job to the fullest.

    The therapist and psychiatrist plans sound great. I hope a medication adjustment will make a positive difference in the distress she is feeling in the classroom.

  11. klmno

    klmno Active Member

    Are you sure the abilify isn't contributing to this? It seems it would be the more likely culprit- moreso than the lithium.
  12. totoro

    totoro Mom? What's a GFG?

    I would think about this, but she has been on Abilify this time for 1 1/2 years.
    She has never had a problem with an AP besides the side effects.
    The lithium isn't having a bad effect, just no effect.
    She is just the same. Cycling non-stop, but seeming to have less control over her cycling.
    If anything I would say the Abilify is not helping like it used to.
    But the Abilify is still helping with the Psychotic rages and the extreme violence, I think that and therapy.
    psychiatrist agreed with these thoughts as well as therapist.

    We have not increased the Abilify yet.
  13. totoro

    totoro Mom? What's a GFG?

    Oops I lied she stopped Seroquel and then restarted Abilify in February.
  14. pepperidge

    pepperidge New Member


    you are truly a warrior mom--to have moved where you can get supports is testament to you doing everything you can.

    For right now you have hte best diagnosis you can have. You hit the nail on the head--you have an extremely complex child who may continue to evolve and present differently over time. All one can try to do is address the symptoms as they appear. Ten years from now they will probably have some new diagnosis that will fit her to a T, who knows. The field is still in its infancy.

    I am so glad you have such a knowledgeable psychiatrist. I would hope that she is reaching out to her colleagues as they talk about their difficult cases.

    Just be systematic, which you are. Many of us with less complex kiddos took a number of years to hit on the right combo of medications. Sad but true.

    Also don't be afraid to dial back on school if that is a major contributor. At this point I think having a decent quality of life for K is a respectable goal--if that means no homework shorter school days or whatever then do it. I know you are already in that camp.

    I just hope you are taking care of yourself, because these kids of yours are so lucky to have you doing all that you do to give them stability and peace and love and positive supports. The toll on us parents is immense.

    Hugs again.
  15. KTMom91

    KTMom91 Well-Known Member

    Hugs to you and sweet K. I'm so sorry she's cycling at school. It sounds like her teacher is staying positive with her, though. Hope the psychiatrist can give you some answers.
  16. SearchingForRainbows

    SearchingForRainbows Active Member


    Although I haven't been around much lately, I think about you and your kids often. I can't think of much to add to what the others have already said. I'm glad that K is in a wonderful school and you have the support you need. You are truly a great warrior mom!!!

    I'll continue to send positive thoughts your way that K improves and that the horse therapy helps.

    And, PLEASE make sure you find the time to take care of yourself!!! Hugs... SFR
  17. Christy

    Christy New Member

    I'm sorry that school has become so overwhelming for K. I live on pins and needles when my difficult child is at school, always waiting for the next catastrophe. The difficult thing when things are going well is that it makes it even more crushing when things go down hill again.

    We have been in the same boat. We've tried all the mood stabalizers and are now back to risperdal which difficult child had taken years ago. Before his last hospitalization, he was on the maximum therapeutic dose of lithium, geodon, and trilleptal as well as tenex. He now takes only risperdal and tennex with a low dose of cogentin to counteract side effects. No one including his psychiatrist thought he would do this well without a mood stabilizer but we are so far amazed with the results. I now question whether all those years on taking depakote, lithium, abilify, and similar medications were causing more problems than they were solving??? It is so hard to judge what is working when kids are taking a combination of medication and are in such crisis that we are desperate to help them.

    I hope your psychiatrist can find a good combo and I'm glad to see the school is offering support. I hope the pieces fall into place and things become more positive for K and your family.
  18. totoro

    totoro Mom? What's a GFG?

    Thank you all!!!
    Well we had her blood draw this morning. Now I wait until Monday or Tuesday. Very nervous.

    I am a true believer in the trying things that work for most BiPolar (BP) kids but I am also a huge believer in listening to all of you and knowing that none of this is an exact science despite what some of the psychiatrist's etc would like to think.
    So I am willing to experiment especially at this point.
    If being on just an AP works I am not going to question it ! LOL
    If one day an AP and a small amount of an AD works who knows!!! This is all so utterly crazy at times.
  19. Steely

    Steely Active Member

    You are an amazing mom Toto. There are few moms as dedicated and devoted as you (and Jeff ;)).

    I am so sorry school has now seen the symptoms as well. However, at least they understand them as part of her illness, and not equating it to her being a "bad kid".
    None the less it is really hard. I was always at my worst when Matt did not have a refuge, and was acting out both at school and at home.

    She is on the Lithobid, right? Not Lithium? There seems to be a difference.

    Hugs. Many, many hugs.